Screw Bronze!

Cat Visit: Twins, Griffin, and very unexpected results

2009-11-09T03:59:00.000-08:00

Saturday Mid-day I went to visit the Victoria RSPCA cat shelter. Before, because of my bonding with cats which would then be gone, first 50% then 100% of them gone, I had a hard time going. It was confusing for me: Where was Jasmine? Where was Rose who sat in my lap and rode around? I thought enough time had passed that I would be able to find new cats to bond with.

It was a packed parking lot and far busier than expected, instead of the only ones there, families and individuals milled around. It was a bit much for me, much less a cat. We found some of the black cat kittens, which had been paired off, siblings. These two had very little interest in being petted or even having a treat (they liked batting the treats out of the cage like a batting game – see how far they could go!). But they were interested in playing. So I gave them one of the mice with string and bell.
First one would play with it, batting it back and forth before finally going in for the kill and carry. This all while the other one watched. Then the quiet black one took over, batting the mouse in the air, then going into a frenzy burying it under the carpet, before ‘finding’ it again (that pesky mouse trying to escape), and batting it about for the final kill. It took the mouse in its mouth and went up to the high perch, as the victor!

In one cage there were three siblings, two black and this aggressive white cat. You could not try to play with the black cats in one cage before this cat jumped in and in front of them. And if you didn’t play with it, it would attack one of the black cats (the older) and pin it and open the jaws at the jugular as a dominance ploy, then let it up, fight it again and do the same thing. I think whoever gets this ‘cute white cat’ everyone would say, was going to get a handful! The two brothers, black cats, became quite bonded as the older would fight the white cat in one cage (connected) so the younger could get treats or petting. I thought the younger was a much more shy and weaker cat. So much assumption when the white cat, after yet ANOTHER dominance, open fangs at throat decided to go after the black cat I was petting. In a split second, with professional wrestler type moves, the black cat flipped the white on its back, held it for a second and let go. The white cat ‘decided’ to stay in the other cage for while. Hmmm, not quite so bashful and weak after all. Quiet isn’t always weak.

I meanwhile had found Griffin, a black and white tame cat that leaned into petting and decided to ride around with me while I saw the other cats. It went over the bumps no problem, and in and out of both rooms. You can see Cheryl checking him out and petting him. Here, with the stomach exposed, stretching, afterward it wanted a stomach rub. I was surprised to find that level of trust in a cat here. I was getting happy. I hoped I was bonding.
We came back to rest, in the first room. I wasn’t actually petting Griffin but had my hands just above him. Cheryl was watching and Linda was petting this beautiful orange and white cat who sat by the window. She often stared out, waiting for someone to come. Griffin, without a tail twitch, without a raised fur, without a hiss, growl or any noise suddenly attacked my two hands quite severely, sinking fangs in multiple times and one time in to a significant depth, right on the vein. Then attacking the other hand, he jumped down, fur unrifled, and walked off.

Cheryl confirmed there were no signs at all and I later found that Griffin was not left or abandoned but removed (likely due to abuse) and for some reason had learned that the only way to leave anywhere was to attack as hard as possible! Considering this was a meek and loving cat, the combination of the surprise end made me wonder why it was loose where children and others were around, not in the back area getting some help working on changing that particular behavior.

I was staring down into my hand, literally, as Griffin’s largest fang bite went through my skin, the fat, the muscle and further, over half an inch drilled straight down. There were several other fang bites from the second and third attack that were already being covered as my hand swelled. I asked Linda to come over and take a picture. I was not so interested in the bite but the fact that you can see it is right on a vein and yet….no blood. It appears the capillary system of Hawaii and the diminished sweating since then has retreated my blood literally layers far down into my extremities. At no time was I bleeding beyond a drop or two. I had closed my hand to a fist AFTER Griffin had attacked and clawed open two fingers, and there were clawed rips up my forearm as well. But unlike a normal person gushing blood, the neuropathy meant I just sort of stared at it and the illness meant there was little to no blood.

Indeed I went on (after cleaning the hand) to pet the nice orange cat, who seemed so very lonely, you can see my hand starting to swell as the skin and white blood cells react to the saliva and claws of the cat. Then I started to feel very odd.
I was wheeled to the van, and was weakening very quickly. With some assist I got in the van but as we were driving back, I pulled back my hoodie sleeve to find that the skin on both arms, all the way to the bicep had instantly started shedding and sloughing off, all within 20 minutes of the bite. It was kind of creepy. But I didn't think about it as I was feeling so punky. I had washed the hand many times but somewhere near home I passed out, and then stopped breathing. And stopped breathing, and stopped breathing and Linda climbed up on me to give me mouth to mouth for a while (unknown) until I came to a little to fall into my wheelchair.

“Faster!” I mumbled, “Faster” as Linda wanted to know if I had to do a trauma pee, but no, I was feeling that ‘I’m outta here feeling” and started to have a seizure. After that I don’t know. I think it was an hour or so had passed. I had come to a little now then but not much but I was in the bed and breathing again on my own. And Linda took off with Cheryl to take care of me. She fed me and helped me to sleep. I did not check the computer or try to leave the bed. I was punk.

After an almost four hour nap, I awoke and though I was a lot better – time to get some packages done and then move on to do the postcards! Great. Only I was feeling not so great. I came back to the bed. I was talking to Linda and that’s all I remember. I was gone. I mean I was gone!
Cheryl repeated to me later that she said at some point she would have called for the hospital except for the rampant infections in ours right now. I don’t know if Linda or Cheryl worked on me in turns or how they kept me breathing but I was not responding to any of the typical or desperate attempts, even to catch and stop the carbon dioxide from leaving the lungs to make a cough or something. No, nothing worked. It was lights out.

I remember Linda saying my hand was black, one of those things I heard between being passed out. I heard Cheryl saying something, but it was far away and muffled. They worked on me for over an hour. I have good friends, friends who saved me. That’s more than family. It was, I thought, a good day to die, but Linda thought different and she wouldn’t give up on me.
My arm changed to yellowish, and got swollen, and I went into shock repeatedly. We don’t know if it was the bite, if it was the lack of food, the lack of sleep. We don’t know.

That night, I was scared to go to sleep. Part of what is causing the arguments about care giving and part of what is causing the increased fear is that before it was always that STATISTICALLY I could be dead in a few months. Or it was POSSIBLE. Now, the end of the road was in sight. Sometimes it was further away than others but it remained in sight. That day, that night, I didn’t want to sleep because I realized how much of a brink I stood on. How easy it would be to fall over. After that night, we both saw. Linda was scared too, I don’t know all of what she saw, but seizures, stopped breathing for extended periods, breathing only by assistance, by artificial means, it isn’t just oxygen in the nose. Still scared.

I learned that a bed day is not only possible but something I simply have to do now. Not because I choose to, but because I am unable and cannot risk getting out of bed. There were no postcards that night. I managed to do 13 in the morning, to make sure any new requests got one. Linda learned more specifically how I cannot take care of myself. Not a nice way of putting it but accurate. I cannot take care of myself, that is why I need care givers and that is why I need her, if she will help. She learned that there are some things I can’t power through, or will my way through. I am glad she went out and had a night out and that I didn’t have my worst crash until later but I wonder how much she will and I will be scared…..I am already scared – I thought the sweating would help me for a YEAR, but I don’t bleed with a puncture right into my vein only a month after Hawaii. I can see the end of the road and yet I still have so much to do.

Still will probably go back to see the cats. It wasn't Griffins' fault, but that doesn't mean I am petting him for a LONG while.

New addition to family, cats and a care day away.

2009-11-08T00:22:00.000-08:00

Here is Linda with the new addition to the family (and child) – though Linda is leaning towards a Daddy Polar Bear, and wants to come back and get a leather jacket for the Dad (is Dad gay? Is he a Bear?). No name picked yet as the name has to be the ‘right’ one for both of them.

Thanks to some wack-on-the-head advice I realized that I had be remiss in the caring and loving outside of the care-giving and receiving aspects for a while. So I took Linda to get her OWN plushie (After all she did get me Eiki-Eiki (the rabbit) and someone got me Pounce and a friend got me Rabid, that squirrel I have in the study). So we looked online and we looked in the store and she found the right animal and then the right type of face, not the dim, “I’ve just been hit by a frying pan” type of stuffie face. Then there was the child (as some stuffies even come with magnets in the mouth to carry the young around, but Polar Bears don’t do that, the young follow or hang on the body). Linda was pleased, I think we were all pleased!
Afterwards we took a visit to the RSPCA cat shelter and Cheryl found this beautiful and loving cat named TJ, who had one eye. Cheryl wanted to take it home but not possible, sorry.

After that will have to be another blog, I need to do postcards! But we did come home and Linda took the rest of the day and evening off, having dinner out and a movie among other things (which she can tell you if she wants), having a REAL care giver rest while Cheryl did a great job taking care of me. Worked out well all around.

I’ll let you know when our new additions have names. I thing something cuddly like, “ThroatSlasher”, or “Ripper” is nice. Linda says that is not the type of cuddly she wants.

Forecast: some chance of sun, a cat visit and loot from Hawaii.

2009-11-07T02:20:00.000-08:00

I want this blog to be honest about what goes on. Something happened today that made me want to hold back. That's because I had been hurt so often before that I did not want to tell anyone.

I worked last night until past 6:00 am, then got back up at 8:00 am and went to see a new GP in town to see if I could be a new patient. I do that almost every other week and I am almost always rejected, or worse, accepted for a week, or until they realize that I have over a YEAR of catch-up to do, that the complicated, medical reports are nothing compared to what is right in front of them. Then I get the letter or phone call tell me that I am no longer a patient.

So when this doctor told me that she was my doctor of record, that she could tell when she came in the room I had marfans (asked intelligent questions about it), and wanted to know the name of my condition. I knew the rejection came next. No, the statement that she will look into it and find out what she can do and what she needs to refer. I showed her my blue finger tips, she wanted to know what I did. Linda showed her the concentrator. She wanted to know if it didn’t work, if my saturation was still to low. I thought, “Well then I die!” but said, “Oh I go to the hospital” (to the ‘magic ward’ where they can make oxygen conversion in the lung happen), and Linda said, “We have a larger concentrator at home.”

The GP wanted to know if there was (emotional) lability with this condition. I haven’t had a GP yet who knew that emotional lability (fast and intense emotions) was a sign of a neurological disorder. Linda said I had ‘Sundowners’ (a type of depression which occurs at night, mostly in seniors and those with certain parkinson’s related diseases – hence Sun Downer’s – the play on words). She knew what it was and was sympathetic. She said to make another appointment. She said to focus specifically, and that I would get 15 minutes not the 10 minutes each time. I asked her, “Are you my doctor of Record?”

“Yes, yes, see you are in the orange files already!”

It is too much to believe, so I don’t. I have been here before so often to have the phone call or communication a week or two or a month later. But it seems I have a GP.

Later I may just add this GP to the others who rejected me. She has a husband in Neurology. I am trying not to hope that this is the start of treating my illness, because it could be. I apologize that being brutalized by so many others, made me ashamed to tell you I got accepted so I would not have to face the shame of telling you I was rejected.

For Linda and I, before this happened, the night before, the afternoon before, we had, with one sleep deprived person to a fearful and in pain person worked things out. We have a future, we have an us.

I will still die, but hopefully not before New Orleans. Either way there will be an 'us.' I spent two days trying to temp as Linda’s life: managing the finances, Beacon home Support, VIHA, all the different agencies and looking after me too. It placed me at the edge. I need caregiving because I am unable to care adequately for myself. For two days, I burned myself up trying to care for two.

today I ate for the first time since Tuesday eve and was violently ill. It seems food is something I need to be reintroduced to. I worked for two days to get Beacon to be okay with sending overnight workers. So after 10 months, Linda will get rest, and have regular rest, I hope. Beacon and I are okay. But with VIHA, I found that the supervisor openly stated she was discriminated on the basis of disability, and would continue to do so, opposing all care recommended by doctors. Illegal yes, but who will enforce it. I told three newspapers, the head of the ministry of heath, the head of spin for the ministry, then all the BC agencies I could think of from the Parkinson’s society, MS society to Rick Hansen and the BCPA.

If I have to sue her, and her boss, then I guess I have to sue her. But she not only made Linda cry, but admitted to it the next day, and when I asked what she had done to improve the situation since then, she said nothing. I asked if that was VIHA policy or hers, to NOT act or investigate after people break down in tears? She hung up on me. I don’t think I’ll be on her Xmas list.

Never the less, I NOW understand the need for Linda to have time for herself. While Linda understands that we need to spend time together; that she needs to do the ‘doing’ but the important stuff is us ‘being.’ As for me, it almost looks like a forecast for sunshine ahead.
I sort of missed Halloween, which is sad as I was all ready, I mean, a good Goth is ALWAYS ready but the tension and fear of late sort of put Halloween in the back seat. Too bad, I was wanting my Victoria Francis Gondola ride.
Tomorrow we are off to see cats at the shelter, I hope. And then a little stop to do some specific shopping. A plushie for Linda, one that is hers, not mine, but a special one made just for her (I showed her pictures…she picked the most expensive one….typical Linda!). Then maybe I can convince her to help me buy an apron. “Are you sure we are supposed to be trying on the aprons in the bedding department?”
“Oh yes, most definitely,” I will assure her.

In Hawaii, we got loot, I got loot. Writing a blog a day, and getting the feedback, the readers became family, aunts and cousins, all who I I needed to find something special to bring back and share the trip with. The loot wasn’t for me, but I admit, but I did have fun shopping for it.
I take that back, as in the Honolulu Sanrio store I found a 3-D Hello Kitty in Hawaii Photo Album. What better way to remember any trip but through the mind bending lens of Hello Kitty?

In the Japanese department store, we found not only many Hello Kitty exclusives (coming tomorrow I hope) but also Washi, the first real Japanese Paper Washi since Kyoto. The workers there were from Kyoto, many of them and talked about the paper. Here is the ONE stationary set (there were four but I could only afford one). Each page is wood block printed onto watermarked paper. I wish I got more. The paper is so thin, and so pure it shines. Each page has the cherry blossoms and the sun, with a paper behind to help write (it is up and down as this is Japanese of course). I want to frame each page, not write on it.

Here are some bath crystals I got in Hilo on the Big Island, like most things, they will end up in the post. There is no bath long enough for me, and I have a shower bench in it. But others I hope will enjoy them. Shopping for others is fun. It is about trying to figure out what someone would like best of all based on what you know of them. Ahh, tomorrow I hope to show you the ‘For Japan sale only’ things I bought in that department store (Besides lots of pocky and lots of Melon Soda).

The terror of dying, the facts of dying, the facts of caregiving

2009-11-05T17:50:00.001-08:00

2:00 am and I am staring at the computer. Not knowing what to do. Not wanting to go to bed.

I hate going to bed. Not just because of the nightmares I have. I hate going to bed because I hate waking up in a world where my body and life is always worse than when I went to bed.

I wake in a room of total darkness, surrounded by sound bafflers, and I can’t move my arm, and when I can, I can’t touch my nose. Every part hurts; except those that don’t hurt, and those parts are getting larger every day. I found out I had frostbite in my feet; I had it for multiple days before I found out. I am so used to my black toes and purple toes and blackish feet that to see the dead cells, the destroyed flesh show up as the circulation returned in water; when I could feel a dull roar for a time. I can’t stop thinking about those cells destroyed forever.

If by magic, I was given IVIG right now, like I have been approved to be. I was given treatment this week and blood transfusions and care, if all that happened and everything stopped right where it was, what would that mean? It would mean that I still have three or four physical limitations as outlined in ‘The last stage’ of the caregiver handbook.

It would mean that I would have to never see a summer again, and not go outside during a winter. It would mean I would require constant care the rest of my life. That I would have oxygen and yet my fingers would be purple, I would have to guard against brain damage. I would have elevated costs due the amount of medications, and the materials to keep me alive. It means that the neuropathy, which has progressed significantly, into my hands, into my face, would always remain. I do not feel a slap on my face, or a frying pan on my face. Yesterday and the day before, there was more blood than I had paper towels to clean up how deeply I had bitten into my lip before the blood coming out told me it wasn’t the meal. I found the chunk of skin stuck between two teeth. It will always be like that. I will not have taste or limited taste. I will need assistance in all things, as I do now.
And that’s part of what dying is about. Degenerating and dying is not just the pain of you but it is living to see the people you love burn out in front of you. They burn out until they alternate between grief, hatred, frustration and exhaustion until they are sure which is which anymore. Why isn’t anyone else helping? Where are the extended friends and family? To see Linda burn out, or begin to burn out, is painful. It is one of the true exquisite pains I can still feel. The rest is just the unyielding fire that burns in my nerves and muscles, bones and joints for as long as I can remember. The first times they help you dress, it is new and interesting, then it becomes routine, then it becomes you waiting on a shower bench until they finish reading or writing and email because they have done it before so many times. And then just as each new symptom brings you horror, like the mass of scars, lesions or exploded veins which are now starting to cover and spread down my legs, bloody and tactile. To them, it brings frustration, “What next?”, “Where are the doctors?”, “How am I supposed to know what to do?” Any caregiver helps as best as they can until they can’t help any more.

Every sleep brings me closer to not only these emotional aspects, but my body doesn’t wait just because I am having an emotional crises; as more cells die, as the hands are more useless, as there is no more money to get equipment. Linda breaks down because it is just work and home care and she can’t get through all the ‘doing’ that needs to be done, all the paperwork piled up by people with full times jobs. And I can’t help her. I can’t suck it up anymore and pretend that this doesn’t matter, that I can deal with it. No, I need the assistance.

I live in fear.

Fear that Linda will leave me in the shower. Fear that a worker will. Fear that Linda will leave me on a toilet again, or stuck in a wheelchair waiting, and she has had it, and doesn’t want to come. Most people who are caregivers burn out. The irony is that the very thing that tips them over the edge that day, might be something that they see their work colleague needing help with; or their friend has emotional issues and they listen patiently. But their partner has emotional issues, part of their disease; not the person, but the disease; and the caregiver explodes at them, verbally abuses them. Not anymore. Not this time!

For me, there is just degeneration then death. There is no ‘burn-out’, only death is the break. Oh, I want to have burn-out, I want to have a ‘Respite’ where the cares goes away, where the pain goes away, where the paperwork and demands from various agencies go away. Oh I want that more than anything. But it is my partner who will instead put me in a place where I will NOT get care, or minimal care, not care for ME. Just your branded, off the counter care, like they have in jails. There is food, and if you can’t make it in time, you don’t eat. There are beds, but if you are woken by the bed checks, you don’t sleep. But the thing is that your caregiver, who DOES love you, has a vacation from taking care of you. Has a vacation from thinking about how they have to hurry home to help you in or out of bed; they can go off and have a drink, have a meal with a friend. Because they have accepted that YOU can’t join them, that I can’t, but that doesn’t mean they are dead or dying too. The reality of care-giving is that it takes a village of HANDS-ON people, of people who are there. There is no reason I could not have the same positive experiences as Linda, I could not have a spa, or other positive things. But the truth is, the system, the support networks are set up to save the care-giver, and to de-personalize, de-humanize the dying. “This is what they will look like….”, “This is a list of signs…..” – they are just another task to be completed, not a human being. Because somewhere a whole bunch of people decided that the best way to take care of the dying was to ask what frustrates the people who take care of them. NOT to ask what those who are dying need or want.

And meanwhile, I, who stood so strong a year ago, not knowing that half or a quarter of my energy was an abundance to what I would soon have, I was a fighter. And still I fight, even though each day, each time I sleep it is as if someone as a cosmic deli is taking slices of me, removing function. If I could freeze my condition, my brain would still be so damaged, I would be on a precipice the rest of my life.

And now, having seen myself in pictures: I look like crap.

And I look that way 90%+ of my waking life now. My heart so erratic I had to get more pills. Looking at those pictures is like listening to my voice on an answering machine: “That’s not me!”, “I don’t look that bad!” No, it isn’t, as the truth is, I often look far, far worse. My face is yellow or pale or drained of blood. My lips are blue and when they turn to purple that is better. And I look at those pictures and I think, “And then I get help to get up and I go and do a 10K and then I come back, and I chatter away while I am high on endorphins until they run out, And then I move a little still but I start moaning Then later, I start screaming. And I am broken for a week or more.

Breaking something so fragile is easy.

I think, “No wonder people think I am lying.” Everyone has so little understanding of dying and the different ways people do it.

And so, if my 85 year old grandmother went to sleep, and my 92 year old grandmother was put into a morphine coma, it must be easier to believe that this is a fake, right. That for some reason it is EASIER to believe I spend time taking pictures of me in a $5,000 and a $25,000 wheelchair. Easier to believe I rip out my hair than to believe that every week, with two people to help, I get help getting dressed, and that I leave, STILL on oxygen, and race or see squirrels or play badminton or do a 5K. And then come back and have pain beyond imagining. Truly, it is beyond what you can imagine. And you should be thankful. Because the fire of the time before is gone, all gone. I gasp for breath, the muscles of my lungs hurt. The warrior is broken.
So when I see those pictures and I too forget that I am only looking at the skin, at the body which has been shut down, stopped, and that inside is a mind, a spirit that lives and plots and plans. That for Cheryl, it is FAR easier to believe I would do something crazy/stupid than lie in bed for several days. So me leaving the palliative care center, going out on oxygen, do a 5K while on oxygen and then come back for the opium. That makes sense, when you know me. And that is how I will do the second to last stage of dying.

I don’t want to sleep. I would rather live on in a nightmare.

I wish I wasn’t dying. I wish I didn’t have to go UP in health significantly to be on the down slope toward dying. Who would want to sleep to wake up to a world of medications, heart and lung conditions, bleeding, pain and knowing you can’t make a single mistake? Who? I would rather forever be chased by the mystery man with the knife, while I run in slow motion, than wake to not being able to move at all.

I keep busy. Only keeping busy creates some of the pain I am in. I push myself to get dressed, so that Linda or a caregiver doesn’t have to always help. I push myself to type every day, even though that gets slower and more painful, in my forearms, in my triceps, in my shoulders, and scapula, all just for typing. Pain. Who would want to be in pain all the time?

But then, who would want to be alone, sitting by a computer, between a computer and a hospital bed. I go days without emails, without companionship, without anyone trying to maintain a standard of care except Linda. And Linda is only home a few hours a day. And she is tired of a life of working a full job, doing full care giving and not even getting enough sleep, not to mention some time off to herself. So she is surrounded by the tunnel vision of: not enough funds, not enough time, not enough done, more organization and people who tell her more forms to get signed, a new doctor to find and in it all she has to have her heart ripped out as her love for me hurts her anew each time. I pass out a hundred times a month, or hundreds. I am stimulated to breathe, or have someone breath for me dozens of time a month. A year ago, either would have been a crisis. Now she has to try and get me to breathe, and try to remind herself not to think too long about the shopping list while checking how many minutes I haven’t taken a breath. She sees the pain, she sees the fatigue. And it burns the skin right off of her heart. And then we go on. But medically....no. No quality of life. No quality of death. No dignity of dying.

I try not to think about how I make Linda’s life more difficult and stressful, how I have literally stolen YEARS from her, in taking me to tests, to doctors, in looking out for me. How I live knowing that my living, and struggling, my pain, my laboured breathing, my struggle to breath at all, my seizures all hurt her to watch, all hurt her to clean up after and take care of. But that dying would hurt her also.

In the small hours of the morning I think that with dying maybe she will move on.

In the times when she reaches burn-out, when she can’t tell the difference between the person/me, and my conditions, when she unloads her frustrations, her anger at being STUCK, and spending YEARS, spending all her money, all her TIME, and the costs! And how she walks out on me again, leaves the apartment to talk to someone. She tells others the good things, the parts she loves about being with me. I never get to hear those, only that I am helpless, both physically, and in our relationship to help her. She wonders out loud if there is a relationship, if there is an ‘us’ anymore.

I wish like Jeremiah that God had ripped me from the womb, so that I would never have been born.

But dying isn’t something I get to choose. Not now. If I had a doctor they could help me get into a palliative unit they would help kill me….I mean medicate me to the level of my pain.

In my mind, I am in my 20’s, ready to question life, ready to jump into new adventures. But my body is aging, has aged beyond what it should, I am older now, says my body. It is hard to look sexy when retaining water in your legs, your stomach, your heart. When there is mottling and bruising all over your body, and lesions. I want to be the warrior, the mental warrior, the physical warrior – I want that no one will ever have to fear a bully when I am around. I want that bullies know that while the police may not act, that bosses may not act, that in this society, we are so used to looking on that no one acts, but I will. And that if there is a bully, you will have someone by your side, to comfort you, to make sure you are safe. Except in THIS body I am the one who is scared, who is trembling, and who is abused, verbally, emotionally, physically, over and over. And I can do nothing. These act create triggers from rapes and physical brutality from years ago. Is there anyone among those who care the most about leaving at 4:30 who will stand up for me? Like a trigger of long ago, I believe I must deserve this.

I believe I am letting Linda down, that I am a failure somehow to be ill like this. Because I am not part of society. At best I am something to be pitied. The teacher and Dr. McClung is gone: I am the woman in the corner, sitting in a wheelchair, connected to a pumping machine that goes, chug-hisss, chug-hisss.

The people in the corner are not people we include in our lives, not the people we have as friends, not people we go to for help, not people we go to for ANYTHING. I do not get emails because people have LIVES: jobs, friends, commitments, kids, relatives, shopping, upcoming birthdays, anniversaries. I have those too, a birthday uncelebrated, an anniversary uncelebrated. I have an anniversary of a promise kept: That I would live to watch Bones on DVD with Linda; an anniversary of the first time I had to use the wheelchair as a mobility aid; a birthday of my new brain, my post stroke brain. I don’t have the strength to plan a celebration, or the energy to let everyone know. So the day passes, and maybe I am conscious for some of it, and maybe not.
When I am scared, I go online and spend, I buy a manga, or I buy some stickers, or postcards. Because when I can’t feel my own lip, when I can’t taste, when Linda says ‘I don’t want the responsibility of taking care of you’ to me, my world goes out of control. Knowing she is trying to find her way back to kindness doesn’t help. Nothing helps, but when I buy a DVD set, at least something happens. At least something arrives. While I wait to find out when I am going to a home, and what type of home it will be. But maybe I am not going permanently, just until Linda can stand to take care of me.

Before you judge her, live a year or two in her shoes, being the only person to transfer me, to lift me, to assist me, AND to deal with the mountain of paperwork AND to work a full time and demanding job which requires overtime. I would love to walk away from my body for a while, from having to always be so careful for a while. There are no respites for the dying. And the times we have, to share, when I am sane from only 'just enough' pain, and she not to fatigued from all she has to do are too few.
In the end, there will be a sort of brutality about it. I will not go peaceful, not at first, with the shallow breathing, the stop and then a bit more of shallow breathing and rattles in the throat that can go on for days, leaving nerves jangled as no one knows if that was it or not? But I am more likely to partially suffocate, to be gasping for air, tendons stretched on the neck and collarbone standing out like those on the cross did, reaching for the point to suck in oxygen. And again, and again. I may be covered with mottles, I will likely be bloated due to my inability to sweat. That’s why the palliative centers have it in shifts. So that they clean up after the foaming drool of my seizures and Linda come and sits with me when I stare out into the rain. She holds a plushie and tells me what Eiki Eiki is thinking and how the plushie misses me. She looks for the recognition, the facial expressions. This is the way the world ends. My world. It is NOT ‘flying’ away, or ‘slipping’ off and any of the euphemisms, it is suffocation, it is suppressed heart rhythms causing lack of oxygen in the brain, a slow death of minutes. Or more often brain damage, again and again, until the body is worn down to stop fighting and gives in. That is death.

It is now 3:00 am.

I am supposed to face tomorrow, and not talk about death, but be busy, always busy, even when it hurts me. While others emotionally break down, I must not. While others take a break, I cannot. Because the only respite I get at this point is the last one.

Which is worse, the terror of death or the terror of how I die? Part I

2009-11-04T03:53:00.000-08:00

I start to blog daily, some pop-ups, turquoise and health news

2009-11-02T01:44:00.001-08:00

It has been brought to my attention that there are only 54 (maybe 53 for you) sleeps until Xmas. And there are a couple places I wanted you to see. No, I don’t get commissions, I don’t do advertising, only what I know and have experienced. I have reviewed various vibrators as well as manga because they are something I enjoy (not at the same time, gets messy). Plus as a female with a chronic illness and no income, I understand the need to develop a craft or creativity. In a way, I get that through the postcard project (I just happen to have a very good pricing system in order to attract customers).

Rachel Groves is a commissioned artist who has worked to raise awareness of CFS/M.E. (Chronic Fatigue Syndrome) in the UK and North America. She has M.E. and continues as an artist, making a living through art. She is not a charity case (you know, like me!), but a person whose work is used by publications, and already has fame. She announced this year she would be creating Xmas cards and upon loading them up to her shop, sold out pretty much immediately. There are various designed cards (I recommend the cats), to original art of pop-ups with space to write. I love the pop-ups, not just because they are so hands on, Edward Gorey, 3-d but these are handmade, hand drawn, a piece of art that you are giving as a card (Xmas or otherwise). Right now she is focusing on Penguins.. Since while flightless birds in the wild, they go quite wild in Rachel’s world. Which could be yours for less than a fiver.

I have several of Rachel’s pop-ups, and I enjoy them immensely. I can’t believe that there isn’t a sense of wonder in a pop-up, particularly when you know each one is hand made, crafted, glued just for you That’s what I feel when I get a pop-up.

Back to North America at FoxAZ, it is an Etsy shop that specializes in handcrafts and the USA desert and the wonders found there, made and crafted in “a smoke-free, cat friendly home studio.” They host everything from red lucite blossoms earrings with a freshwater pearl nestled inside on silver hooks ($11) to Nuggets of Turquoise, 121 carats to 191 carats, plus a 256 carat Variscite and Alabone bolos. Here is your classic Turquoise bolo, southwest style, with silver tone tips, available here. Since I tend more toward the Romantic periods of Edwardian and Victoria times, I like the style of these Cameo Earrings (only $10!!).
As for me, I finished the postcards for this week, which turned out to be 39. Alas, if I had know that I would have done another two as 41 looks so much larger than 39, yes? But I enjoyed doing them and was able to focus with both sticker, stamps and more. Also several cards written to go out, while writing is still a go!

I am reeling from the information that our Prime Minister is offering Sask., a province two over, prime health care like MRI’s and other high end treatments AT COST. Why? Because we have the machines, but there is no approved budget to use them. Indeed, I am not sure how VIHA is going to operate the last six months; and that is with one of the two hospitals here with a rampant infection (that one which you have to amputate to stop it!). So yes, I can’t get the treatment I was approved for, the IVIG which will extend my life, or even an MRI of my spine and brain to see the progress or lesions, but if they take it up, people from two provinces over will be flown in to be treated with the equipment and the trained techs which we, the residents, are deemed not able to afford. And we are hosting the Olympics. It is boggling to the brain.

I have to go, more pounding of construction in the morning. I will be trying to post more on a daily basis, joining the NamBloPro which I did to join Sara 2 years ago. Chronic Illness blogging every day, as I can. Tomorrow I hope to show some of the loot I brought home from Hawaii (that which has not been sent off!).

Autumn and Fall, Wheelchair Badminton, Squirrel Siblings and loot!

2009-10-30T23:12:00.000-07:00

Fall has arrived, and the trees are sending the leaves down in bushels. Which make some kids happy. I am trying to remember that delight of seeing big leaves instead of automatically thinking “Oh no, this means every leaf blower in town will be on my block forever!”

Sound-wise today was extremely noisy. I did not know why as I had a medical appointment. When Cheryl came she said the Coho – the 50 year old tilt back and forth ferry had carried over the Olympic Torch. Not only that, because of the ‘political target’ it could make, the slow moving, waddling Coho Ferry was escorted by the US Coast Guard until Canadian Waters and then by the Canadian Coast Guard. I am not sure what the plan was because the Coho was built back in the days when LARGE amounts of steel was put into ships, enough to make those giant Caddies that go through brick walls seem wimpy. So was a speedboat supposed to hit it with explosives? Because of the Olympics? And would the Coho notice? Or was one of the cars aboard supposed to go off, and then the Coast Guard would what? Shoot all the potential suspects swimming toward the Coast Guard vessel? I am not clear on the logic of most things security related, like why U.S. citizens like Cheryl can come to visit me with a driver’s license but cannot as a CITIZEN of the US return to her country/gated community with one, but MUST have a passport.

Anyway, the torch arrived, and according to Cheryl, the ‘Torch Run’ of the Olympics (which is supposed to be about ‘amateur sports’ and not ‘whoring ourselves to media and corporations’ is the ‘RBC and Coca-Cola Torch Run” – because moving the Olympic Flame certainly can’t be done without sponsorship! So Coke and Royal Bank had been using this as several million in advertising having contests on who would run with the torch, and so the torch was jogged 300 yards, then lights the NEXT person, in order to get all the people in who Coke and RBC sold the spots to. AND then afterward, you can buy the torch you ran with. Surreal. I was about to make a joke about how probably Pepsi is sponsoring the Torch Run in Real World or one of the Virtual Worlds. But then I thought I should check to make sure that isn’t actually happening; since many big brands are now opening shops in virtual worlds (Yes, I realize how insane that last sentence sounded – are you being served in your Nike Virtual World shopping experience by penguins? Who knows? Does someone purple carry the torch with wings?).

Back to reality, after my last blog about heaven help those who try to stop me going to badminton, I got 30 minutes sleep, and then in the rain I rolled to badminton (I am not a political target either!). I ended up in my first game facing the badminton coordinator and one of the other very good players. But I was not daunted! In fact, here you see an early point where I am using one hand to push myself up onto my clothing guard while I reach for the birdie. This caused the wheelchair to tip over, but I HIT the birdie, pushed the floor with my fist and the chair bounced back as I called, “In play, still in play” and we went on to win the point. Most impressive for someone who has a 17% chance when trying to scratch their nose of hitting it.

When serving, the important thing is to serve LOW over the net so they cannot slam it back at you – this was a VERY good serve I managed, and Linda got it. I did confuse them a bit with my serves. And they came back at me and my partner. It was a match to 21 points. We were ahead, then behind then ahead. Here you can see me wheeling past after guarding the front and probably blocking a tipped in birdie, I seem pleased, or in concentration.

While in this shot I am about to send the birdie into the far back corner. The problem is that I can only be so many places, as I have a chair that does not move sideways, and the opponents learn to NOT hit to those places – very vexing. But I still got some hits in, here I moved back to cover my partner while he was serving and hit the responding hit (you can see the birdie at the VERY top of the screen, that bit of yellow) which I hit backhand to boot!
Well I played tough, or honestly by the end I was mentally exhausted and a little confused but I tried hard and we ended up losing 23-22 or 24-22, I am not quite sure, all I know is we were tied 21-21 and so could not finish but kept going. I like close games and this one was close.

After another game I wheeled home and then got too little sleep due to two cement trucks, a crane, two chainsaws and a few other handy noisemakers the next morning starting at 6:56 a.m. Ug.

Remember those two squirrel siblings I told you about. Well here they are. You see one is bounding toward Cheryl, while the other is finding and digging up where the sibling just buried the last peanut. Then, as the squirrel gets the peanut, you can see the other in the background, having found the last peanut is now eating it. Then they move aside so the happy sibling (the poor clueless one who you end up tricking to do your chores) goes around to find a new burying spot while they finish the peanut – then as the sibling bounds off to get another one, they dig that up too. Sad but oh so familiar.

I also got some postcard loot for the postcard project in Hawaii and on orders which finally came in – here is one of the Postcard Books that I have been looking forward to getting and sending out. I used to spend my hours as a youth in the old Pasadena Public Library which looked a lot like this one but a lot bigger (it had lions too outside). There was hard wood everywhere and the old card catalogues, and the information/answer desk where you used to be able to go and ask a librarian a question like, “How many moons does Saturn have?” and they would find the answer for you.

I also got this set of Escher cards which I can send out with little gifts or just as cards while the hand lasts. I like Escher because so much of it seems a metaphor for disability; the way medios think and work and so much in life. What doesn't go round and round in disability land?

Also here are some of the stickers we picked up at a store, I think just outside the Waipio Valley called Honoko. We have already sent out several of them (half?) on the postcards we did last week – about 30+ in number. I liked finding these touches of Hawaii and bringing them to the postcard, because when they are gone, they are gone. And that is the point of a postcard, isn’t it?

For those who are going trick or treating tomorrow, good luck. If you are in doubt whether to go trick or treating this is a little measure I use: If you are carrying a bottle of beer or liquor and take hits from it between houses, or have to put out your cig before asking for candy – you are TOO OLD! Sorry.

This is now: survival, eating ashes and going on

2009-10-28T15:28:00.000-07:00

A picture from last night. My head resting on INDY’s headrest I am passed out and not breathing. I am wearing a eye-patch as during my conscious states my eye finally had opened but the image had not integrated in my brain (just garbage). I am my sleepwear, which I lived in much of this week. On a 3 or 4 setting of oxygen and ‘Rabid’ my squirrel is on my lap. If you want to know why I call the squirrel ‘Rabid’, he tends to vibrate at very high speeds, is easily bored and well, look at those EYES! My fingertips are purple and my entire arms and torso is in secondary Raynaud’s (I lost consciousness due to lack of oxygen in the brain). I had pushed the panic button because I could not call Linda, without oxygen to my vocal cords. My heart had just stopped long enough to cause a major problem of loss of oxygen to my system, and I would soon need reviving, so I pushed the button while I could.

People see me with squirrels. People see me doing things like going to lava. And yes, my hair is falling out and I look like crap and I am visually ill an on oxygen but I am still out there doing stuff! Right? Wrong.

From ‘Anticipatory Grief Package’: A Patient’s Perspective “It is important for people to pace themselves and save their energy for the activities that are most important to them.”

I spend 99% of my time looking like this (the unmoving paced person), feeling like something scraped off the side of highway that stinks and sticks. I am in INDY, supported in my back and body by the Wheelchair INDY or the hospital bed, with head support. I do that so I CAN send postcards, and so that I CAN send emails and packages. I am now in constant oxygen deprivation, low saturation levels and so I have to focus and stay focused to get what I want done. Like blogs and like going out and feeding squirrels. This is my life.

“Loneliness increases as family roles change and the patient becomes more dependant on care.” Well, why don’t I continue as I was in Hawaii? Well first off, I didn’t have much longer that I could have lasted in Hawaii, and have been bleeding from somewhere, nosebleeds, spontanous bruising, anal, oral, lung bleeding ever since returning. I hope to build up reserves, and I am happy I went to Hawaii but there was a calculated cost beyond the financial (which cleaned us all out). This is another picture of me, here, I am not sure, maybe in pre or post seizure as my eyes seem open but rolled back. I am on the face mask, continuous flow oxygen at maximum with a ‘rebreather’ mask to increase the percentage of oxygen. See, I could BE in Hawaii because I had two people to bring me back from the edge of death and they did, they did many times a day. I have permanent damage from the trip, and I am LUCKY to have it limited to the areas it is. It was a great trip. But when I only have one or two hours of care a day, then trying to be at that level of activity is a good way to fall over due to lack of oxygen and stop breathing. And when Linda comes home four hours later, that is still how I will be. I know that because every week, even without 24 hour caregiving, I still have to be resuscitated or assisted in breathing, in stopping a seizure cycle, in regulating my heart about a dozen times a week.

You, the reader, you get a massive pain spreading across your back, or in your chest, it is hard to breath, it is spreading down your arm. You look down and you see a hand that has purple fingertips, and now blue fingertips and purple to the first joint. Someone calls 911 and you go to the hospital. This is a MAJOR event in your life, this is a heart infarction and the next one is going to be if not lethal, then will likely trigger a stroke. This is an event people often experience ONCE in their life. When they die.

I experience that almost every day.

After the squirrels, after the nice pictures, and the eagle, when Cheryl went home; I had gone without much sleep and pushed myself without reserves. Not low on reserves, but no reserves. So my legs stopped, and my arms. I sat there in INDY and waited for wetting myself. Linda was exhausted, my fingers were dusky and turning black, my thumb was black, my palm was black. That is how bad my circulation was. Linda got me into the bathroom and on the toilet. I had retention (I was too weak to trigger the muscles to allow me to pee – if you are older, these wear out and you pee yourself, if young sometimes, this happens, you are stuck, until it backs up into your kidney). Linda was too weak to be able to move me. “Beth, you have to help, PLEASE, please.” she begged me.

I couldn’t. I couldn’t move my legs, my hips, my arms. I was barely hanging on to conscious. I had been expending energy to hide the amount of care I needed. Part pride, part love I thought. Now I wondered if leaving Linda with an unrealistic idea was love or not. And when the reserves are gone, they are gone. So, I am stuck on a toilet, she is exhausted. What now?

She went and slept. We had, she had, NO ONE we could call. My parents response has been a combination of distancing and pretending that everything will work out so long as they don’t see it. We were alone. She gave me a drink to drink and when that was absorbed in 20 minutes I had enough strength to help drink the rest of it. Eventually I peed. Two hours later, she was stronger and so was I, and together we got me into bed. We also used a word to look into: Sling.

The amount of energy that most people expend making a nice Sunday breakfast is what I have for a week or half a week. That’s why Linda takes pictures of what I do. So, yeah, I’m really ill. REALLY ILL. Now does that mean that Hawaii was it? The last hurrah?

No.

I am a calculating and ruthless bitch. Because my opponent is Death. Death feels no remorse, no feelings at all. There is no sorrow at taking me too soon. So what if I want what other people have as a sign of adult: understanding mentally, a job, goals, dreams, friends, to be treated as an equal? So what? If I ever miscalculate and I have, and Linda or some person at a place where I am usually banned afterward catches me, and I end up in hospital and that’s a mistake I can’t make again. So it happens right now I have minimal medical care. But I have oxygen and pills. I have a computer and wheelchairs. Sometimes I have both eyes, sometimes just one. It is what it is, and I have to win anyway.

So if it takes me 40 minutes to get out of bed, and it does, most days, takes 10 minutes to get a hand moving and under control, then that is what it takes. And if I miss the wheelchair, then I drag myself. Because that is what it is. This is it: life. There is no replay, there is no retake. If I want to live, then I have to keep going.

Most of the time I grin when I am in pain like when your skin is peeling the next day from a bad burn, a real bad burn. I grin because someone just told me that “Oh you won’t be able to take your wheelchair...” As I roll past them. The amount of times I have calculated the odds of just surviving getting to my pills in time, something like using up three days worth of energy to show some AB person who articulated that I must live in the box is nothing. It is so nothing, I give it a fierce grin.

I think back to Fredrick II, or ‘Fredrick the Great’ in Prussia, who grabbed Silesia from Austria, starting wars lasting 20+ years and resulting in the ‘Seven Years War’ which pitted the small Prussia against France, Austria, Russia and every other land power. Fredrick, one of the last great leaders to fight as not just the King but the General, in the field of battle, faced odds of 2 to 1, 3 to 1, French Armies, Austrian Armies and he won. Because he had to win. If he lost a SINGLE battle his small country was not doubled in power which Silesia would do, but lost. Only Britain was helping then financially. In 1759 it seemed that everything that Fredrick had fought for was lost. 47,000 Russians beat 26,000 Prussians; the French forced the surrender of Prussian Troops and Fredrick lost half his army in one battle, his worst defeat. He considered giving up and abdicating. I consider giving up. Giving in to the pain. Not coming back when they push and prod me to ‘breath’, and I start to follow that, but I do come back.

Fredrick considered suicide. And looking at what kind of death I have in front of me, I consider suicide a lot. It is not pretty, in the same way I am not pretty. I was never beautiful, but I was pretty, a strong woman and cute in my own way. But I won’t look like that again, I won’t be getting stronger. The arrow has pierced my breast, the saber is thrown from my hands. I was looking at pictures of me fencing last night and my goodness the power I had. Fit and strong. But that was then. Now I am mortally wounded. And so that is where for most the story stops.

I am not most. Nor was Fredrick. He went down among the people, and raised another army. The next year at odds of 3 to 1 Fredrick won, but the battle raged on, literally the entire continent of Europe was against him. And in the next year Prussia lost its last port to the sea and thus help from the British. Everyone believed that Prussia’s end was here, the army down to only 60,000 men. And then…..again, considering suicide, Fredrick found out that the Empress of Russia had died and Peter III ascended. Now Peter III LOVED Fredrick, because Peter III thought he was like a hero from a storybook, and in many ways he was. A King who risked everything for his nation, who every year took on the worst attacks and won, who faced the worse conditions and when it seemed that wounded in so many areas, Prussia was done, Fredrick went to the countryside and showed the people that THEY are Prussia. And he rose again, in front of a victorious army. Peter III withdrew the Russian troops and got Sweden off Prussia’s back and so Prussia took on and won the Austrians and French. It was the miracle. A miracle that had been hard fought for.

This did not last long as Catherine, Peter III’s wife (know later as Catherine the GREAT) thought her husband an idiot and killed him, then ascended the throne and settled the war, having everything return to what it was BEFORE the war. Prussia remained, Fredrick remained, and Silesia was part of Prussia, part of what would become Germany.

So, some interesting history, so what. The so what is that in two hours, after spending 4 hours with a doctor, and up late last night ill, I am going to badminton. Because at badminton I sweat, and if I sweat another week. I live. Or my chance of long term living increases. My chance of going to New Orleans increases. And heaven those, including the parts of myself screaming, “No, no, let us rest!”, heaven help those who try and stop me.
Because I haven’t exactly got over into ‘acceptance’ yet in the grief cycle.

One of the reasons I was at the doctor was medication, including more heart medication (we are now MAXED out Ms. Heart, okay?!) and florastor, my probiotic which is a prosthetic intestine for me. We are down to 12 days of florastor and then, though I am malnourished, I will have no way to absorb nutrients. That is on my wishlist. And unashamed so, because if I have to beg in the street…I have a cup. Yes, the needs seem high now: another wrist support and a book or something for Linda to have down time with. Linda, who alone, waiting for the help from Beacon and VIHA has not had a night off in over six months. She is always and ever there for me. I wish I could cradle her. I wish I could give her rest. Give her a weeks vacation. And I can’t even give a book. We need wireless phones (because sometimes like I couldn’t get off the toilet, I can’t get out of bed to let the ‘caregivers’ IN), Linda is figuring out which ones, and then they will show up on the wishlist. By Nov. 2nd, I have to sign up and I am signing up for Boxing because the longer I sweat, the more my skin, the largest organ in the human body, heals. And I need that. I am also signing up for badminton and volleyball. I have no money to sign up with. We found out today that I need to get oils, as my body can absorb the oils of the vitamins it is malnourished in having while it cannot absorb the vitamins. Boxing is $55, Volleyball is $45, the oils I don’t know. To some it may seem little to some it may seem doable, this week it is…….yeah. If you want to help, go to the blog, A Girl's Gotta Fly and email Linda. Because I can't REMEMBER, I don't understand the math things that well so she does that, and I try to focus on the surviving (and the flying!). So you can email her over at Girl's Gotta Fly if you are interested.

I am hoping, but I am not asking. I would if I could ask for help for Linda. Help her, but I don’t know how. Come over and watch me for a night, help me with my pills. But that is impossible for most if not all. And for money, I know how many people are having tough times. And look at me, I just went on vacation (a vacation that extended my life from months to over a year - survival). And in time, I will have resources. But now I don’t. I have no income and no health to generate it. And yet, I sell on Amazon, I will sell on ebay, I will create a nest egg and have that emergency money. It is just I kind of used emergency money on loot for people in Hawaii (I was one of those people, I admit it), and then with Tall Girl closing. I would not have the PJ’s in the picture at the top if I didn’t go and get them at the sale, that is how little clothing I have. I am using the same shoes I had when I was fencing.

Enough said on that, because I think I know that those who understand realize I am grateful for friendships, for all the forms of giving, which include even reading and try as much as I can to reciprocate, because that is what friends do. I just know that I am going tonight and I am going to boxing on Monday, I just don’t know how. And I believe that in a week or so, I will be able to eat because I have the probiotic and oils I need. I believe that. Because if I don’t live, then I can’t do what I am meant to do, which is be there for as many people as I can, as many as my energy allows.

I die, I am brought back, I am wounded and bleed, I am in pain and struggle, spending so much energy to survive so that I might sit still and save the rest. I save it so I might spend my energy on others. Making sure that the others who feel the ‘alone’, others will have some way, some hope to get them through the winter. And I will help them find that. I will be with them. That is the other 99% of my life. Surviving on the edges. And sometimes it means eating ashes, like sitting on a toilet waiting for someone to be strong enough to lift you. And sometimes it means dragging yourself. And sometimes, it means getting a letter saying, ‘Your letter/gift/emails made the difference……’

Oh, and I WILL get to New Orleans.

a short squirrel interlude: being home

2009-10-26T03:41:00.000-07:00

Hawaii is over, Hawaii is still here.

The trip is over but some memories stay, and the idea that problems are just things to be overcome, that stays. The attitude that I am a valued member of society remains. But the last two memories or ideas are under assault: phone calls daily, from wheelchair sports collecting money, from Triumph who says they have been trying to get in contact (“When?”, “Uh, I believe I called in June.”) as they want $700 to avoid putting a computer unused due to glitches on the loan program. VIHA, Beacon, is there anyone who doesn’t call not giving a damn about me compared to the forms. I still have no GP, the walk-in clinic cancels the specials or tests ordered. I long for the time when people saw overcoming obstacles as something good, when at Badminton a player tries to claim a point because I was wheeling by (off court), “Wheelchair near court! Interfere! My point!” He later looks at me, realizes he will be in a match with a female wheelchair user, and takes his racket out of the line up, then puts it back to end up on the court minutes after me. Try putting ‘Jew’ instead of wheelchair and see how that sounds. I worry I left the best part of my on the Big Island.

Lungs, heart and nerves are withering, are dying. I live a life of oxygen and dusky fingers. I am adept at using my teeth for many things now. And the signals, the heat has increased in my upper spine, above the T-section. And by increased that means I am on 3 pain killers during the day, and at night the strongest, 5 pain killers, 2 sedatives, and then a spray of medicinal marijuana onto my cheek to help it absorb in minutes. I hallucinate. I bite my lip, my tongue. And I scream. How can I hold on to something, squeeze something to help me take the pain when I can’t feel my hands? I live by watching what my limbs are doing, I have gross motor function, felt or not: a crane operator. But the spine, it burns literally, while my body is goosebumped in shock it burns hot as I scream, my voice husky from a lack of oxygen. I don’t know how long? As many breaths until my lungs can’t push out any more.

I asked advice. What to do when the future is here? When it is seen? Spend more time with Linda, spend more time with squirrels.

I can do that. We have polite squirrels who often have a ‘a peanut for a starving squirrel artist?’ look. Yes and peacocks. The ones who aren’t thin are the ones who are bold. We found a pair of squirrels, both blacks (the smart ones) and one was getting peanuts every 30 seconds, running off and burying them. The other squirrel was digging up the recently buried peanut and eating it. Squirrel #1 hadn’t caught on yet by the time we left. I hope they are siblings.

We met an offspring or cousin to Psycho I call Fearless. Fearless is one squirrel who is going to survive the winter. Why? Because as Cheryl said, “That squirrel will be mugging old ladies for Chicklets.” Well, as to mugging, she would know.
As for me, I perfer my squirrels to view me as sort of like the bookmobile, I am the peanutmobile and all they need do is climb up and take a look at what is on offer. Fearless, upon returning, would run across 200-300 yards before leaping at least four feet away and landing halfway or more up my leg. Now I know what a tree branch feels like (and isn’t peripheral neuropathy good as he was using claws). I could feel the whump of force through the wheelchair. But at the end of the day it turns out he is quite picky, Fearless the gourmet? Or just wanting the highest calorie content?

As you can see by the leg, as he starts to eat after mugging Cheryl, Fearless has had plenty of action like fights. There is a claw mark on his back, likely a crow. This must be why he is basically sitting atop the person he just mugged and having a sandwich. Luckily Cheryl didn’t mind. See, we have VERY disability friendly squirrels (the people, ehhh, not so much – as we had been just been to a pumpkin farm and found it hard to find space in the disabled parking full of race cars and family vans, without a single blue badge in sight).

As we wheeled home, since I had frostbite in one hand, after turning off our cameras, a full grown bald eagle flew over us, just above treetop. She had a whole branch in her claws, nest building was my guess. There is one bald eagle at least in the park, but rarely seen. It seemed a good time to go home, falling under the shadow of the bald eagle.

The pain is still here, the fear of living without a net medically, the isolation, the daily times of being helped to breath, to clear the passageway, passing out due to lack of oxygen, the inability to move at all more and more often. I look into a future which realistically has no hope and want what everyone else does: living, a job, a social net, family. On one hand, VIHA has been hinting at a care facility. On the other, I am still planning a new trip while paying for the last, while sending out postcards and thank you’s. The race to use my hands has never been more painful, aching and conscious. No, I haven’t been well but I force myself out anyway. I force myself to do so many things, and now, I force myself to step back and take time to be here, and grieve a little bit.
It was too hard to face things. So my degeneration progressed. Starting today, a ‘Good Day’ isn’t a day when I am mentally like I was, or had a competitive experience, but one in which I didn’t scream, in which I smiled, or just stared at clouds. It is time to stop hating myself for the parts and times of me which aren’t as close to my Able Bodied Life as I could get.

Hawaii Adventure Day 6: the Kapoho Tide Pools, underwater views

2009-10-21T16:20:00.001-07:00

Again, if anyone wants any of the Hawaii pictures in larger format, just email me and I will send them along. Here are the rest of the pictures that Linda and Cheryl took with the underwater cameras showing, even in this EXTREME lava desolation, how quickly the eight different types of coral found here adapting and so many different type of fish can show up.
Here is a shot of four fish, three different types, from a top view down.
The difficulty of shooting blind (can you imagine if we had snorkels?), is you never know what you might end up shooting in the camera. Here you can see we have captured a rare glimpse not just of our usual fish but the Cameraus Obsessiveus in a crouch (top right) waiting to find it’s prey.

Just in a few inches we see the diversity of four fish (notice the grey one escaping through the lava rocks at the top) in such a small space.

This picture gives us a fish eye view, literally, of three different coral, the potential hiding places, and the ‘deeps’ (about 4 feet deep, not much for humans but a very different view if you are only 3 inches long though). Note the orange fish right at the middle bottom. They do blend in.

Here are four different types of coral in one shot, grown in just a few decades in the slight shelter of a southern tip, warmed to 70-80 degrees due to lava. In another twenty years the diversity will be twice that what it is now, and with a full parking lot (of 8-10 cars) and a dozen people sunning themselves, I think it will be given that chance.

In the end, this is the fish’s world, we just have a chance to see it, thanks to the underwater camera, though their eyes. It is beautiful but also a little alien. Yet definitely worth going to see (and back to see?).

Hawaii Adventure Day 6: the Kapoho Tide Pools, the different angle preview

2009-10-21T01:27:00.000-07:00

The underwater camera’s Linda brought with her have been developed (she has also done a blog on part I of II of the wild flowers seen on the trip at Girl's Gotta Fly or click here - I recommend clicking on the white/purple orchid to see it in all the fresh rain dew glory).

What I see below makes me want to head back, get a snorkel or a raft with a window and another couple cameras. Those little yellow fish look completely different when the reflection of water, no matter how clear, is out of the way. These fish are less than a pinkie long.
And that is NOTHING compared to the beauty that a splotch of purple is, when seen as living coral.
In this last picture there is are two of a fish not on the other pictures (the white one with a gold/brown upper tail - any ideas? I recommend clicking on picture to see fish clearly, also the brown coral in background).
and tomorrow I hope to upload another 10 pictures (if the TWO giant cranes, and 15 men working outside my window less than 30 feet away allow me less than a full body headache). I just wanted to share this with you. There is definitely going to be a screen saver in one of these underwater ones. If anyone else wants a larger picture of any of the pictures from Hawaii emailed to them, like the 1.2 meg version, just let me know at mpshiel at hotmail.com. More tomorrow!

Hawaii Adventure Day 6: the Kapoho Tide Pools and post Hawaii

2009-10-19T00:50:00.000-07:00

Apologies on the delay in writing, I have been busy bleeding (yes, that old excuse!). I was bleeding on the trip and continued the tradition back home, some of which (like the sinus cavity nosebleeds) might come from the altitude (but for three days?). There are many, many ways to bleed. Some of the not fun ways are a day or two of anal bleeding from inside. Not nice to look at the toilet bowl, not nice to wipe and come away with “Oh my GOD!!!” We presume that some roughage in restaurant food or the fruits I tried got through and cut me up in the lower intestine. That stopped today and I am not on the mask full time with purple hands in order to breath so time to get to work, no?

Oh, yeah, yesterday was bad breathing and a pink and red froth coming out of the lungs and mouth, which I think was all the stuff I had aspirated the previous days cutting up to the surface. Like I said, lots of bleeding.

Why did I not go to the hospital? Well, because if my intestines are cut up due to some roughage, then sticking a scope up there isn’t going to make it bleed LESS now is it? Also, have you ever had a bleed in your SINUS CAVITY cauterized? If I thought I had lost a pint or two….or three, I definitely would have gone. As for the oxygen conversion and erratics: well, one seems to feed into the other but if I am on a full flow concentrator rebreather mask and that isn’t working, all they can do is increase the flow, which, if the problem is autonomic failure (which it is), then it isn’t going to help. But that was the afternoon. In the morning I went shopping.

I had just gotten off a day and a bit of full time oxygen and it turns out that the ONLY place I can go to get clothes to try on to buy in town is closing. Tall Girl has gone bankrupt and the stores in the US are probably already closed. The one in Victoria was selling out and I have a total of 1 pair of jeans, 2 pair of joggers (you have seen them in the Hawaii pictures, over and over). And it seemed unless I went, that is all I would have.....forever. So off we went, and I tried on about 22 pairs of jeans, trousers/pants, and joggers. I found two pair. Linda of course found lots and had to restrict herself. This is not exactly how I hoped to balance finances post Hawaii (AHHH!), but with only other prospect as flying to the UK over the next year to Long Tall Sally to get any new clothes as I have: no belt, 1 pair of socks, 1 pair of jeans, 2 joggers, some tops, no jacket, and no winter or PJ’s which fit, so we came to shop. Linda is here in front of the store close out (notice it says “UP to 80% off – we never found the 80% off, just the 20-50%) with a t-shirt that says “Organically Tall”

I talked to the workers and they all have jobs, after the store dies in 12 days. As my neuropathy has progressed a great deal, I need clothes that are easy to get on and stay on (Neuropathy means my nerves are dead, a whole lot of them, almost all my feeling nerves, and most of my movement ones, and feedback nerves, plus real problems with hands over the last couple weeks). I have the scary hair of having tried too much on and am wearing cords which I bought (turned out the $34.99 was actually a $64.99 but I could only find two cords/trousers/jeans), and a t-shirt which says, “No, I don’t play basketball.” It is a small because it has better width on the shoulders and length than the X-large. Also, it turned out to be a reduced price of $16 instead of $10 like every other (like Linda's which was $10) because it was the color black. Black t-shirts cost more. Do you now understand why this company was going out of business? When they charge $40 for a t-shirt? I love the shirt because I used to be asked it all the time, in fact one woman while I got this picture taken said, “I love that t-shirt”, so I wore it home. The irony is that I did play basketball, I was just really bad at it. Loved it, and if I had a good coach would have done great. Oh well. But yesterday got that and some winter PJ's and some winter socks, thank goodness!

But back up a week and in Hawaii, after the sulpher at the volcano, I was very sick. You may assume that I rested. You assumed wrong. Before going to see the lava that night, I navigated Linda and Cheryl to the Kapaho Tide Pools as Linda really wanted to go snorkling and see fish. People often think of these fantastic views of scuba divers. We didn’t have that but we did have a series of interconnected tide pools on the southern tip of the island left over from the 1955 eruption. Many of them are still heated from below and many houses along here have closed off some for private pools. But there are still so many, nicely warmed for coral and sheltered that there is an abundance of fish. There are eight types of coral of which if you look for colours you will see brown, yellow, purple and others in the pictures. The underwater camera’s haven’t been developed yet. These were taken with our trusty Canon (which was then double bagged in Ziplocks).

While navigating toward the tide pools we passed the plantation areas from the lava rich soil of the 1790 eruptions. The land is covered with plantations. Linda stopped at this one to take pictures. At first, from the road we thought it was banana’s. Linda was very excited as she had not see these fruits ‘from the tree’ as it were. It turned out to be a papaya plantation and once Linda had taken her pictures, we continued on.

Being again PURE LAVA, Linda and Chery went ahead while I rested and were already deep into gazing. It turns out that fish like to blend in, and so the trick is to look at the water until instead of gazing over them, you see the amount and schools of fish that are passing before your eyes. Down the bottom of the picture is a yellow and striped fish called the Sergeant Major and is seen in most pictures as there are many schools of them. The other fish, like the two blue and orange ones up at the top of the photo are as yet unidentified.

Linda, with her underwater camera, was deep into the hunt. We had not brought masks (and with salt water, don’t put your eyes under, trust me!), so she was aiming and shooting areas. But watching her, I saw these two fast and flighty fish feeding.
Cheryl was watching a puffer fish and we saw a turtle together while Linda took off. Cheryl, as the lava is slick from algae growth atop it underwater used her walking stick to move from area to area, pausing to check out what there was to see.
For example here is a good picture to practice with, as there are 11 or 12 fish, some swimming, some sideways on the bottom feeding, some clear and black striped hiding, all in this small area, only a few feet large. The trick is seeing the fish, not the rocks.

Linda was heading out into one of the larger tide pools which has many different types of coral (very sharp and will cut you if you step on them), look for the different colors on the floor of the ocean. Because that is where these lava shelters lead, right to the ocean waves.

Linda managed to find a shell, which we wanted for a friend, only there was already an inhabitant inside, a little hermit crab which you can see crawling out right now. And about to upend the shell and take off for water. The speed those shells can move with the crab underneath going full tilt is rather comical.

Here, by the purple, green and brown coral Linda got to see a pair of angelfish swim past, the streamers following. Or as Linda excitedly put it, “It is just like seeing fish from the pet stores in the wild!” I am not quite sure I get that but I sure would have liked to see the Angel fish. I however was pretty stuck in one place, and actually ended up with some lava rash on my bum (lava is not a forgiving or soft rock).

Here is a particularly colourful and fast moving fish on the right bottom facing off with a grey and dower looking fish down at the left bottom while the other fish including several Sergeant Major fish take off!
Cheryl has followed the Lava to the ocean waves, where the nice warm temperature starts to drop off. The warm water makes it easy to forget how much reflected and direct sun you are getting and we all ended up getting tanned or in some cases a bit burnt.

Linda, focused again, is carefully watching and stepping around the coral. In a way she is right, it is like being in a giant aquarium, with no one in charge, all the fish just going every which way. There are several who liked to hide under rocks, and others who like the sun. Here is a picture with over a dozen fish but which has five different types of fish in it, this including one large one coming out from under the rocks and one which is hard to spot due to the coloring, made so that it matches the background (hint, click to blow it up and look in the top left).

As for me, using floatation, I was carefully sat above a deep cove of brown and white coral. I just hoped that nothing came out and nipped my heels (not that I would have felt it, just the thought of it is creepy!). Not a great picture of me but yes, I came, I saw, I did the tidepools!

Not only that, I waited and waited and got a picture of this medium sized fish that kept mostly under the rock and coral, only venturing out a little bit before dashing back in. So I waited until I finally got a picture of him.
Here is view of raw lava which makes the pools, only 50 years old but which in a hundred years or so will be rich soil, but for now is desolate but for a few green plants holding on. Beyond that is the rolling surf, one part of the ocean in which no one will surf or swim. The tide pools themselves are a local secret, but we are about a mile from the very southern tip of the southern most island in the Hawaiian chain. That means if you go swimming and there is a rip tide, or a current, then the next piece of land you have to swim for is………Antarctica! Yeah, that’s why people don’t swim here – as a tip, lots of currents and lots and lots of risk. But nice tide pools.

Linda wanted me to bring her just one thing home, a nice little eco system, taken from the pools (here she is enjoying it). "Um, no Linda, I don’t think we can smuggle it onto the plane as luggage?"

"mumble...grumble"

"No, Linda, the fish have to stay here, and yes, I know the ones in the shop aren’t as exciting but I suppose we can always come back."

Hawaiian Adventure Day 8: Akaka falls, woodwork and the best breakfast in the USA

2009-10-12T05:31:00.000-07:00

After going to see the lava we played, “What more injuries?” Cheryl and I were just too punked and Linda’s hands not healed enough to take on a twisting lava road to the observatory, so that will wait until next time.

The Big Island, when I asked Cheryl and Linda to summarize it used the word, “Exotic”. With small towns having original movie theatres from the 1920’s to 1935 still in business along with the lava road, motorcycles going down the road without helmets and jungle, jungle flowers and plantations of taro, red taro, papaya, banana, and pineapple it feels like Loas, not a place you can send a priority mail box back to Port Angeles in a few days. It was another humid day, now more hot than Honolulu in the unexpected heat wave and after noting that the front of my shoes were trashed, as they were dragged, or legs dragged along the lava we headed to Akaka Falls. Here we are at the top of the trail.
We had heard that Akaka falls was paved trail to the falls and wheelchair accessible. No, we found from the master weaver Keo who sat at the top of the falls, working his art on the coconut fronds, in the same way the Haida and Salish use cedar bark, that the accessible trail to the falls was a PLAN. Keo, who has had over 500 students shows them then tells them to go get the fifth frond of the coconut tree to practice weaving 20 baskets. That, he said, is to teach them climbing up the trees as much as weaving.

Keo said that the park had closed due to fallen trees but they had just opened the park again and put in the handrails on stairs (this turned out to be VERY important). But it was still 56 steps to the falls (I think more like 80 but who counts).

I had heard how great the falls were so I went on, and used the handrails to balance on, like balancing on the back wheels of the wheelchair, then using hands as brakes, slid down the banister, just like the nuns said not to. Going down was the easy part.

As you can see, everywhere I go there are warning signs, which is why if I took each one with me, I would have quite a stack by now. Linda had been trying for the last several days to find the wild white ginger that Pat the guide from the Waipio Valley plucked and put in her hair. The wild flower comes in wild yellow ginger and wild white, and there was wild yellow all over this valley. Finding a hand lotion or shampoo with the delicate and delectable scent of the wild white ginger was so far impossible. There were some advertising products and lotions with ginger flavor, but like with bad artificial strawberry flavouring, it wasn’t the same as the real thing.

Along the way to Akaka Falls we passed some smaller falls, picturesque before the final decent to the 440 feet drop of the Akaka falls. It was just then that the sun came out of the clouds. Stunning. I’ll let the picture do the rest of the talking.
On the way back I found, wheeling along, a single bunch of wild white ginger. Too far to smell or pluck, only to take a picture (if it looks similar and hangs down, it another flower, one VERY poisonous!). Getting up those stairs was harder. Linda lifted my legs two stairs at a time and I pulled myself UP the same railings. A friendly male from New York carried up the wheelchair. Whether 56 or 80, it was a long go and I was very much a GLOW for most of the time. But if I wanted to see wild Hawaii, I needed to go a little wild myself.

Up at the top Keo was there and asked to take MY picture. He said I was the first person in all the years, and he is there every day, to ever go to the falls in a wheelchair. Gee, he could have told me that BEFORE I dragged myself up the railings (seriously without those, I don’t know how it would be possible).

Heading back to Hilo we stopped at a recommended wood shop, the best in the islands if not farther. They not only sold various carved hardwoods, like the Hawaiian Koa hardwood but also sell boards of hardwood for your own projects. As you can see they also sell amazing glass plates/platters. This was just one shop in a tiny old plantation town, the store fronts like something out of the Waltons, untouched since the 1920’s, a dozen stores on a side road. Just down the road was a building from 1820 with glass intact (yes, old 1820 glass unvandalized), it must have been a sorting station for workers now gone that the road connecting this wild side of the Big Island has come. For instance the Japanese workers created a thriving Japan Town in Hilo which was wiped out completely in the 1940’s Tsunami which levelled it leaving no place for those Japanese shipped off the islands to return to.

In this shop not only did Linda find her wild white ginger lotion but I found something that I will be saving towards, sending half of my weekly allotment towards until it is paid. As you can see it is a small three drawer 11 inch cabinet made of the hardwood Koa with Zebrawood handles and groove and tongue tight fitting – no nails. A real work of art and small enough to keep by me at the computer for medication and other needed items. Linda meanwhile was buying ONE bottle of her lotion. I asked the owner if there was anywhere else she could get this? And the owner thought MAYBE…. I asked if anywhere on the mainland, and no, nowhere off this island, nowhere in Hilo or big town. A small micro business, that smelled like the real deal and couldn’t be replaced. She hemmed and worried at the luxury of getting herself TWO bottles. So I asked her if she would get me a bottle (she steals my hand and face moisturizers shamelessly!) and she reply immediately that she would! Problem solved.

We were heading to Ken’s who for 17 years has won the Best in Hawaii in restaurants, and the USA Today Newspaper among others named as the top 10 places for breakfast in the USA. But before that we stopped at the farmers market. Here I am examining some carved jade that this seller got from her uncle in upper China. After getting our fresh produce for the stir fry tonight we all ended up with something, as for example Linda bought me a braclet with a Hawaiian petroglyph in it. But I will show that tomorrow.

At Ken's, Linda and Cheryl radiated joy just looking at the menu. Or as Cheryl said, “In a place like this you don’t eat until you are full, you eat until you are tired.” Linda ended up getting the waffles with macadamia nut on top – they smelled divine (we plan to visit a macadamia factory on the way to the airport tomorrow).

After eating, the fatigue of pulling myself up from the falls and the talking all came together and I passed out, then started a seizure cycle, so we headed home. I was conscious by the time we hit the lava road and we entered our estate to see that a single hibiscus had bloomed for us on the bush by the house. It is the state flower of Hawaii and a good place to stop for today.

Hawaiian Adventure Day 6: Volcano 1 Beth 1 - Linda injured

2009-10-10T04:01:00.000-07:00

I decided to take everyone’s advice and have a day off, just rest. Except it was sunny. And here it rains every day by noon. So Linda and Cheryl wanted to go scuba exploring, and I helped them find a series of heated tidepools on the edge of the Southern tip of the Southern island. No one swims out in the surf because at 2,700+ miles from the USA, if a rip tow takes you out to sea there is only…um…Antarctica as the next southern piece of land.

Then it was the drive through the woods where the wild things are. Then the visit to the state park of lava trees. And to town to pick up mail. And I did the decoration and preparation of 17 postcards. And then to sleep in order to go see the lava viewing. It was 5:30-10:00. I got 1/3 of my sleep and had a giant nosebleed. I thought I shouldn’t mention that until AFTER the lava.

We parked and everyone who passed me stared. The state workers and police who guard the viewing of the lava for safety said, “We don’t HAVE a blue badge parking section…we don’t GET wheelchairs.”

One person who had brought his wife in a wheelchair said, “Oh, you’ll have to stay behind, look at the lights of the lava going through the lava tubes.”

I had been told it was 1/10 of a mile. That was off a bit. Several workers stared then yelled, while I started the hopping of my wheelchair on the back wheels from one bulging bubble of lava down and over a crack to another rippled fractured lava stone. They yelled, “It is over three quarters of a mile!”

I yelled back that I was here to see the lava.

Lava is geology is motion. It is solid rock which is heated so hot that it is liquid, a liquid river of rock running down to the sea. Only something as large as the ocean can cool the lava in an explosion of fire and a smoke of acid and tiny stone fragments. And then the island is larger. This is the beginning of the story, the face of what we float on in tissue paper thickness of land called ‘plates’. Yes, I was going to see the lava, not just heated sulphur fumes but the lava itself. Click on the picture to see the waves behind the molten rock as they are about to hit it, creating another plume.

The path to see the lava wasn’t. There was no path. There was a lava flow on which reflective strips had been put. The first 200 meters were individual boulders with cracks large enough to eat my tires and not a flat surface in sight. It was hell.

After that, I decided it would take too long (I only had three hours to get there, watch and get back), and though my heart rate increased beyond what should be my maximum heartrate to 170-200 beats per minute, oxygen deprives and with nausea, I was helped upright and used the push handles on the back of my Ti-lite like grab-bars in the bathroom. It was falling down with a wheelchair, casters up, using that motion to go forward until I did fall down, or over the back. Feet flipped and I ground my ankle into razor lava (at least I didn’t feel that), I had legs which couldn’t keep up or my body lost balance and fell left or right. There were breaks with drinking Gatorade and water, and then onward, and onward. A 15 minute walk they said. Well it was an hour for me, with Linda holding me up and using her flashlight to find the next direction to lurch, a crash in motion.

It turns out that this beats boxing as I sweated from EVERYWHERE. Cheryl noted that my knees, which have NEVER sweated were wet once we got there. But I made it.

I couldn’t face leaving. One more picture. The truth is, I was oxygen deprived that I didn’t understand English, or really anything. I had used up everything to get here and see the lava. “How did you do it?” I got there by using every ounce.

After a short 30 minutes it was time to go. More falling. Cheryl told me she would need to hose me off. I was down, Cheryl telling me I couldn’t lie down, “Never Give Up! Never Surrender!” I used my hands as fists on the lava to go on. As we got close, followed by state officers and police, Linda said, “Look at the hut, we are almost there.”

I said, “close doesn’t matter, only once the finish line is passed does it matter.” I fell, and again, and pulled myself in my chair, and jumped a few more boulders. It was 20 minutes longer getting out. The officers behind me said that not only was I the last one out but I was the only person who had managed to get the wheelchair all the way to the viewing area. One half of my body was covered by muck, and I was wheeling one push at a time when the state police truck stopped and the officer thanked me for “an inspirational experience”.

I was confused. I WAS here to see lava. I wanted to see lava. There was lava. Ergo, I was going to see Lava.

Linda, Cheryl and I were all exhausted beyond description. Cheryl had to do the same as me with a hiking pole, an ankle run over by a tractor, a post broken pelvis and a back which was so crushed, it would leave a hand or limb limp and unfeeling when tired. She took the same trail. We were there to see lava.

As we finished and got to the van it started raining. See, I wanted to rest...but it was the sun's fault.

Cheryl couldn’t move, nor could I, so Linda who was driving opened the gate but when she closed it, she fell. Fell hard on our jutting pieces of lava, cutting through her jeans and slashing the hands she held out to stop her fall. I cleaned the dirt out of them, slowly, to stop her passing out. The first aid kit we had on the wish list was used extensively (about a quarter of it used up for all the wounds). The wounds are clean and healing but her hands are damaged. I will not be going to the top of the mountain to look at the stars. I would not do that to Linda, driving on non paved roads with those hands. Things happen, we all have had accidents happen, things happen. A van where you try to turn the key to open the door lowers the windows instead is easy to lock the key inside.

Tonight we drink champagne bought in Waikiki for what we accomplished. We saw the face of this earth: the raw creation. Tomorrow...I WILL rest...after I get those postcards done.

Hawaii Adventure 09 Day 5: Life Threatening? Volcano 1 Beth 0

2009-10-09T05:21:00.000-07:00

I have been feeling poorly more and more. Admittedly, we did in 2 days in Honolulu and the Island (going to the lookout, the temple, waikiki beach, the town, the mall, the 61 and 63 drive) and already have done 3-4 big things on the Big Island, more in the first two days than most people visiting see in a week.

So I was sleeping four hours a night so I could blog each night. So when I started bleeding from my nose, I ignored it. The next day I had blood from my nose and my mouth. This morning, blood from my mouth and nose and on my pillow too. But those did didn’t stop me from pushing on to a FULL day where visiting Waipio Valley yesterday, the scenic drive of one lane bridges and seeing old plantation towns besides getting postcard project supplies (like into three figures!). After all, this was IT! The big trip to two Hawaiian Islands. What did I have to look forward to but a winter of frostbite and staring at a wall in my apartment? I had a few days of this before months of discussions with care managers on how exactly if I learned how to make a hospital corner bed at camp, most of my care workers couldn’t make my bed?

Besides, I wasn’t coming back, right? Well, except for that trip to New Orleans maybe.

They emailed me today: I missed the breast cancer 5K, it happened while I was over here.

So today was supposed to be a low key ‘Scouting Trip’ which means I ignored the sign coming into the Volcano National Park saying, “Warning: Air Quality Hazardous.” I kept feeling nauseous but pushed on, it would be an hour tops! (it was 6-7 hours). I always push on, until I feel like I am about to fall and never get up. I have feeling that a lot the last couple days.

The Crater view of Kilauea (Volcano’s Name) was amazing. It erupted a recent thanksgiving, shooting lava hundreds of feet in the air before cooling to a lake of solid lava..or so it seems. Beneath this is the lava which runs down the lava tubes to erupt into the sea. At night you can see the glow of the lava as the steam plume of Sulphur and other gases continue to pour upwards. Over half of Crater Road was closed due to the toxic nature of the gas, and the visitor center, where we stopped, was the edge of the closed road due to toxic fumes. As long as the wind blew we were fine, but if it stopped and the plumes drifted, then it was a different story.

See that is what I would have know IF I had read the material. Instead, I was all “Hound of the Baskervilles” and dying to get out into this fog that they had inconveniently roped off.

Visitor Alert - Kilauea is currently emitting elevated levels of sulphur dioxide gas and an ash-laden fume cloud from a new vent within Halema`uma`u crater.

So2 is a hidden volcanic hazard. Exposure to the invisible gas can aggravate pre-existing heart and breathing problems such as asthma. Elevated volcanic gas levels are dangerous to everyone.

Plus there are acid droplets in the ash plume, which is why all the plants which are directly in the path of plumes are dead or dying.

But the Park service puts up these nice warnings about how the fumes can be life threatening: “Do NOT enter this area if you are a person at risk: heart problems, respiratory problems, pregnant or children.” You can see me doing the ‘Phantom of the Opera’ (the black and white silent version) in front of the after I said, “Well, I’m not pregnant.” Earlier, Cheryl had checked me over because I had to stop for a while in the van because I was feeling so bad. She found that my heart was extremely erratic. After a brief rest, Onward!

Here we are at the edge of the rim. No problem. But, Beth asks herself, is this DRAMATIC enough a picture? No! I needed a picture from when the wind stalled and the plume would stall and drift over a corner. So while Linda and Cheryl stayed at a safe distance off I roll.

And roll
And roll...
Until Linda has to Zoom on me but still you can barely can see me giving the fist of victory! Victory over what exactly? I have met the volcano and won!?

We crossed over to see the individual sulphur holes, again passing a very large sign saying that people like me shouldn’t go. I said, “What? How can I have a breathing problem when I have my prosthetic lung here?”

Here are two roped off potholes, you can see the accumulation of various acids and minerals as well as the plumes coming up with the sulphur, straight out of cracks down at the lava level. It was very warm. I asked Linda and Cheryl for a picture in the sulphur pothole area. Here they are, and having fun. Also quite a distance from the fumes.

I was having fun, of sorts, also. I asked Linda to hold my camera while I rolled along the fence of the pothole area, and again, not to take a picture until the plume was completely covering me (it was oh so mysterious and very Edwardian!).

With oxygen behind on the back I head off alone.

By this time you may wonder, “Is Beth THAT brain damaged?” Well yeah but not about this. I don’t have any excuse except that that I had done so many things that people said I couldn’t do, I was just barely surviving a sudden heat wave which made using our house in the day a death trap. So what could a bit of mysterious fog do? I mean, they put up those signs just to cover themselves don’t they? Just because a few people have died at this volcano from the plume (I didn’t know that at the time, honest) is just juice to go further in. To me, whether it was sulphur and acid or dry ice, what difference? A LOT it turned ou

I am now raising both arms in a victory symbol, but you can barely see me. I was pretty punked and had to be helped back into the van. In the van we noticed that my hands were blue, like BLUE, not the fingernails but the palms. Plus I had blue lips. I went, “What?” and looked in the mirror and it was true, both of them completely blue. But….but….but….I was ON oxygen, what was I supposed to do now?

Well, I could have headed off and rested BUT at the visitor center they said that at night the plume glowed from the magma below. And it was only an hour until dark. So we looked at the gift shop and I went to the bathroom and tried to stop passing out. Even now, after sleeping and 12 hours later, I can barely move and if I move my head or close my eyes, around the world goes. But I hung on until night. And the plume DID glow, but too faintly for my camera to pick up. Just as we were giving up there was a flash of light! It was a thunderstorm erupting behind the plume and I happened to be taking a mini film as the sky is erupted in electrical light showing the plume in the fore. It was pretty cool. There were a few more lightning discharges but we couldn’t get them on film. And soon, feeling very punk we headed home.

Guess what, I AM human. And being human I am one of those people who the big Yellow Signs are talking to. I am not saying that I can't go see a volcano in action. But do I need to do thing so dangerous that the healthy people who are not lung and heart damaged don't want to even think of doing them? I could use this new word I looked up: Caution

I told Linda the truth while I was in the bathroom. And she told me the truth: that the previous day, she was a second or two from starting mouth to mouth. Bu I was thinking not once but several times to tell them to take me to the hospital (this was AFTER the valley tour, and the town tour, and the shopping). And that now, I felt far worse. I felt in a jam, that if I didn’t push myself to see the BIG things, like a volcano or the stars, then what was the point of coming to be an hour drive from one? I would be letting them, the AB’s down. But right now, I said, if there was a coffin nearby, I would crawl into it just to lie down, I felt so bad.

Back at home, even after a sleep, I was still in bad shape. My blood pressure and heart beat erratic while my reserves were zero. Cheryl looked in my ears with her little device and my left ear, which was mostly deaf, had burst from a blood pressure spike and there was blood behind the ear and down in the canal behind it. Sigh. So a slower day tomorrow. Maybe going to a beach, or if I can go in the car, seeing a waterfall and then back to lie down. I feel a bit of a failure but looking back on the pictures also a BLOOMING IDIOT! Turns out those signs aren’t a joke. I guess I should make educated choices instead of just ignoring them. I am not the same Elizabeth of a few months ago, I don’t have the reserves, I am not that strong, I HAVE deteriorated in several areas central to my health.

But the visit isn’t over yet. And if I am up to it, one of the rangers think I can manage the wheelchair over the lava path to see it drop into the sea. For that, I would drag myself on the ground.

I am not sure what I fear more, letting Linda, Cheryl and my readers down or pushing myself so much that I am dying in plain sight and everyone is used to it. That feeling so bad I can’t eat (I am losing a pound of weight a day) is just what I am. But I better figure it out soon.

Prelude to Hawaii Day 4: The Valley of the Kings

2009-10-08T08:24:00.000-07:00

We had a long day and a bit of a heat wave, which exhausted me to levels that were more dangerous than I liked. But I’m still here AND I got to see the Valley of the Kings, my dream of the Big Island. We woke to a ridge of sunshine hugging the coast, and followed it the 90 minutes north to get the SUV ride, a personal tour from Pat, a multigenerational native Hawaiian Valley resident whose father, grandmother and others who survive the Tsunami which wiped out the residents by hiking to the ridge, 1500 feet above. Today, as we went down, his uncle at the gate told him that there was a Tsunami warning that had just come in. But you know me – onward!

Here is one of the many coves we saw, crossing old bridges on our way up north. More on that journey tomorrow.

This is the entrance of the valley, the 1,500 foot walls, and the one SUV only 25% grade road in. The valley once was the residence of 50,000 ‘Hawaiians. This is the real Hawaii, tropical jungle and the residence of the Kings, because they could only be attacked from the water.

Here we have a close encounter with a family of wild horses, which run wild in the vally, the mother and father with the foal peeking in on the side. One of many encounters with valley and Hawaiian wildlife

Hawaii Adventure 09 Day 3 - Travel to the Big Island, tropical jungle.

2009-10-07T07:07:00.000-07:00

Ah, the toilet. We had chosen a room which had a Japanese toilet. The manager called the day before and even tried to talk Cheryl out of it, dancing around the wheelchair issue. I motioned for the phone.

“Hi!” I said cheerful, “This is the cripple!”

Silence

“Um…is there a problem?” I asked.

They wanted me to take the ADA room, but I explained that we had a friend who had not yet experienced the um….pleasures…of a Japanese toilet. She really wanted me in the ADA room and I convinced her that I really wanted a toilet that looks like it has a button for ‘Eject’. She did give me a nice shower bench though.

Well, part of being disabled is being disabled all through the body and after an airplane flight and a few days of busy, I was constipated. Cheryl had earlier tried one of the two jets (one anal, one for the front – why or how guys use this, I don’t know – and no, there is no blower) and found that dripping wet, whether the water was warm or not wasn’t the greatest. Also, the toilet has a downslope like it is trying to slide you off, which is consistent with those used to using slit trench toilets. So here it goes.

I was on the toilet (toilet water jets can be turned from hot to very cold – same with toilet seat warmth). I had, after reading a bit of manga relaxed enough and done some rocking, relaxed enough to have my first major movement. I said something like, “Yes, the gate is open!” to Linda to let her know I would soon come to the nap. “The gate” is our slang for the constipation. Just as I said that, being weak I slipped over and somehow some part of me hit the anal water jet button. So my recently opened and relaxed anus was abruptly hit (and entered) with cold and forceful stream of water. It was so sudden that I had a screech going into hysterical laughter (I mean, I never used ANY of the buttons in case something like this happen). It was crazy, it was just the thing that happened to me. I waited for it to finish, laughing. It didn’t, it just kept going. And as Cheryl said later, “Oh, I had turned the pressure volume on that jet up a lot this morning!” (Why, Cheryl, oh WHY?). So between the laughing and looking down at this inescapable cold jet I was saying to Linda, ‘It won’t stop, it won’t stop.” And then I looked over and there was a GIANT red button under which read “Stop.” Linda came in just as I pushed the button and the assault upon my rear brigade ended.

“Um,” I said, biting my lip in embarrassment, “It stopped.”

“Good,” She said, “How did you get it to do that?”

“I pushed Stop?” She was laughing by this time, because I guess I looked so bedraggled and was mutter, “It just kept violating me!”

Later Cheryl was reading the attractions of the hotel spa and the ‘purifying colonic’ was one at quite a cost.

“Been there, done that!” I told her.

And I’m actually lucky, we have the ‘simple’ model of the Japanese Toilet. The one at the Ghibli Museum probably would have had me in the air like one of the cartoons.

Today we flew to the big island, so it was returning rentals, getting to the airport, and going through security. Here is Dee, who checked me, and swabbed my hands to make sure I was not going to blow up the plane. I took her picture because I wanted people in the UK and Canada to see that YES, there are US security agents who do NOT have guns. Most do, but these ones don’t. Dee was nice.

The trip was below high altitude and sort of an aerial tour of the islands, reefs, and deep blues of the coasts of the Hawaiian island chain. Very beautiful, and realized I simply did not have enough time.
We arrived to find a cruise ship had taken all the rentals so we hung at the airport. After getting the van, I was beat, just totally beat and lost track of a big chunk of time. They stopped the van for some reason, probably the not breathing one. Turns out I am not AB, and going full tilt like I am isn’t a long term solution.

We arrived at the accommodation I had found, down a lava road (and I thought dirt roads were bad!), rated #2 out of all rentals in this area. We have over an acre and a half, and due to it being off season, and my finding a site which did a further discount, even lower than from the owner, we ended up with this lush topical estate and a three bedroom house with washer/dryer for $45 per person, per night. As opposed to $3,000 for a weeks stay at most places.

Inside was decorated in Asian style with lacquer and a full kitchen, towels for the beaches, a roll in shower, and full hardwood floors along with a BBQ and a deck with seating for breakfast. Here are Linda and Cheryl, as Linda plays with a rain stick left for us (And with Hilo, rain does come!).

Nothing like having a home cooked meal while watching the sunset over your lush tropical home. I had found a base, and after almost 4 hours of sleep, I was ready to plan for tomorrow. I hope to see the valley of the Kings, but it depends, like so much, on the weather. I’ll let you know then.

Hawaii Adventures 09 day 2: The temple, the mall, and being ravished.

2009-10-06T06:18:00.000-07:00

Sadly I don't have the time right now, as I have to sleep for an hour or two before I catch a plane to show you our Japanese toilet and explain the...um...incident which occurred with me and the toilet. So yes, ravished by a toilet, they sure make them complicated in Japan.

We started the day going to go back to the replica of the 900 year old Temple, which had a Buddha inside, along with a bell, lake, side lake, carp, all backed up to the mountains of the Hawaiian Island.

Is it located in the Valley of the Shrines (I did not see any others but we did have to drive through a cemetery to get there.) This is the first view of the temple.
The Temple was Byodo-Inn, and once you cross the arching bridge it had groves of bamboo and a gravel path (wheelies always notice the gravel path). It also had groves of the local Hawaiian flowers adding scent to the air.
Here Linda shows us what this would have looked like in the Meiji Period, or the 1880’s. For reasons I do not understand, this is barely in guide books and not really touted as a ‘sight to see’ having a nominal admission fee and very few visitors.

Due to being right up against the high mountains, there are often little showers with literally a minute or two of sunlight.
After the temple we headed to the local Japanese and high fashion mall called Ala Mauna. There was a Lego store, then a Victoria Secret store that was so popular that there was a velvet rope line up to get inside. We were waved past the line. I thought for sure some fantastic sale awaited us but no, it was just Victoria Secret and not that busy inside at all (why the rope). I did have a few rude encounters. In Victoria Secret, they had the same bra set I have but I said, “Oh they seem to be out of my size, in 38” and a worker said in the same tone as, “We don’t carry the ‘Super-plus sizes’” – “We don’t CARRY 38”, well, you do in Seattle. Then in another store, when looking at a PJ set of Hello Kitty with shorts and crop top the manager of the store said, “Oh, those are JUNIORS, you won’t fit anything like that!”

I said, “Um, everything I am wearing is Junior size.”

She took me over to the Plus size section and despite me saying, “Do you have a zero” (I can wear plus size 0), she gave me a two. They were huge, and I bought the Junior PJ set, which I am wearing right now to type this. Well, I guess, I just LOOK gigantic, but am not, that’s a comfort.

Back at Victoria Secret, we did check out some various..um…options for play.
We did find not only an anime geek store but yes, a San-X store with Hello Kitty and yes, I bought some. I will not show you EVERYTHING I bought but I will show you this Skeleanimal purse I bought, which has a skeleton rabbit bouncing across it. Because as the tag says, “Even dead animals need love too!” And the bonus with this little money purse is that it won’t smell like the other dead animals you keep.

In another store we ran into these Hawaiian Hello Kitty Marshmallows, I don’t know if you are going to try them, I’m not saying one way or another if I did.

We proceeded onto the main Japanese department store of the mall. It used to be part of a chain of stores across the islands and Japan but now no longer has a Japanese branch though is based there. The Japanese products are inexpensive and authentic. I got a Kiki’s Delivery Service Jigsaw Puzzle there that has been out of print for several years, brand new, as well as a host of Washi (Japanese Paper) delights, including more Washi Postcards (I had always wished there was more I had bought). I was so busy talking to the workers in half English and Japanese and shopping that I didn’t take any pictures.

But what did Cheryl come for? Pocky! Here we have a picture of SOME of the pocky (not the desert pocky) including banana, almond, crushed almond, crushed oreos, milk, strawberry and the odd GIANT pocky, along with dark pocky and much more.

We called the shop “Little Kyoto” as it had the old world charm and reminded us of Kyoto. Here is a Wedding Kimono, on sale, (still no price listed), I did talk to them about the dancing lacquer umbrella I got in the ancient geisha store in the Gion district of Kyoto. They said they had carried one or two but they were over $100 each, so it was too pricy to keep regularly. After stocking up on a host of MORE Hello Kitty Items (these ones for Japanese sale only!), we headed home for a nap. So, if you want me to get you a true umbrella from Kyoto, please just provide the air ticket and I will return with the authentic article, otherwise…a cheaper imitation will have to do.

Tomorrow, the complete toilet story revealed!

Hawaii Aventures 09: Day 1 - flying to Honolulu and Waikiki

2009-10-05T02:13:00.000-07:00

Sometimes before we can reach the sublime (surfer, famous beach, warm waters, sunset). We must suffer through the perils! Yes, that is me, tongue stuck out and on oxygen. Me not like little metal bird! Want off!

Here I have just cleared customs and my hands and feet have been swabbed to make sure they are not explosive (and they kept trying to make me take the concentrator apart and I kept going, "It IS a concentrator!") (hey, I tell you what they tell me. I didn’t mention the episode of McGuiver where he turned a titanium bike into a bomb and I have titanium wheelchair!).

After asking about getting a refund for an attendant seat, we were all three moved to bulkhead. We asked if we could have a seat for the medical equipment. But they just told us to go to the gate. We arrived at the gate 5 minutes before boarding, and was told to wait, then someone else came and told me that I was 12 minutes late and thus must wait until the end. And that because I had oxygen we did not have bulkhead seats but the row behind. Here were are in the second row. Bulkhead people had an extra seat, the row next to us had an extra seat. But us and our friends like an oxygen concentrator and ice break packs, we are all still smiling for some reason. No word yet on the free seat yet, odd that.

We drove to the lookout before going to the Japanese Temple. This was our first OFFICIAL Hawaii tourist act. Cheryl gives it a TA-DA! (though my navigation we got a wee lost and arrived at the temple gates a few minutes too late to even take pictures of it – grrrr!).

Linda had said on the plane that “I would like a Mai Tai on Waikiki Beach” – well, what Linda wants, she gets, so back to town we came, ahead of sunset and we wheeled down to the beach. Noting along the way that when it comes to tourist spots, the saying is true: Build it and they will come!
I found the beach, and before Linda and Cheryl could stop me I found the sand, indeed I was so far out I was almost stuck when they caught up to me. But here we are, at Waikiki Beach at sunset, now how Hawaii is that?
After a shoulder roll out of my chair and a bit of flopping about, I got us the, ‘oh so sweet honeymoon’ picture of Linda and I, thanks to Cheryl’s photography. In fact her camera came out with this beauty, even at the dusk of post sunset, which is probably one of the screensavers I will use. Ahh...the memories...which I won’t have by then.

Of all of us, only Cheryl actually went into the water, and said it was “Warm” so I would want to try it, I think. However, the waves and amount of people going by her to surf indicates this may not be the best beach for ME to try.
I bet you think I forgot about the “Mai Tai on the beach” – no not I! We went over to CheeseBurger in Paradise (which Cheryl assured us was a famous song) and got ourselves…a cheeseburger and a Mai Tai.
The food was really good, and really filling, but the humidity of the place didn’t exactly decrease the humidity outside. Still we enjoyed the food and the location and if Linda wants it, Linda gets it – “Mai Tai, on the beach in Waikiki.”
As I wheeled out of the restaurant, the die hard surfers were heading home. This woman, changed from wet suit, had a rig hooked up to her bicycle to hold her surfboard, as she came down probably nightly and on weekends. When even the die-hard surfers come in, it is time to go.

So under the full moon we wheeled home, exhausted, but already planning a new day, one that involved the terror the ancient Hawaiians could never have thought of….yes, San-X, otherwise known as HELLO KITTY! But that is for tomorrow.

We arrive at station 2, ready to go to the plane and Hawaii

2009-10-03T22:18:00.000-07:00

We are ready to depart, time to sleep and then in the morning I have to convince Northwest Airlines that I am a) disabled and b) need an attendant (because they are both cheap and apparently the check in person not only determines you luggage weight but also all medical issues - what training programs they must have!). Since moving me here in 5.5 hours made me have seizures, and I couldn’t see out of one eye or process things like numbers, plus I got to wear the ice (putting an ice pack in my bra – try it sometime, very um….enlivening!). Besides that it is just kicking out heels waiting for the call for us to be packed into a small flying bus to fly over a big ocean to a tiny island. No problem.

Once I get there I will be much happier, we had some issues with the Seattle highway system and some of the drivers but are all in one piece. Once we got that sawn-off shot gun things worked out fine (“You’re driving the interstate 5” the pawn owner said, pulling out the shotgun, “Try this out the passenger window!” – Riding Shotgun has a whole new meaning.)

We went to Japantown in Seattle but did not find stickers –sigh. I did get some post, and we are packed with stickers and postcards to head to Hawaii so you can all come along, I will try to blog every day (or other day). I am just about ready to go, the two wolves, it seem are not allowed on the plane in the overhead luggage (“Lunge Asterth! Go for the drink cart!”). Nor is the sword. In reality land, Northwest Airlines, beyond not allowing an attendant seat, or a discount for an attendant, does NOT have food for a 6 hour flight, and charges for blankets. Just perfect for someone who has to have tempature regulated. I am only awaiting the ‘optional charge’ for the recycled air. Or perhaps you only get a floatation device and oxygen dropping down for a $10 deposit. Who knows?

Off to Hawaii – to the 16th Century Kyoto Shrine I hope! Pictures in this space.

Packing for Hawaii, bikini's, vibrators and strawberries, plus a reader game: the name game!

2009-10-01T16:37:00.000-07:00

The last few days have been rather hectic with the packing. We are preparing to take off, to transform into our relaxed selves. Yeah. Right. That's is what packing does....relax you. NOT! Last night it was ‘what corsets do I take’ along with trying on different tops, skirts, and jungle/mountain top wear. This looks about right for the jungle maiden right? Because I am not taking a sword or spear! Also, should I take my wings, or pick up a pair of white wings special just for this trip? Since I have a nice white dress to wear (originally I was going to put blood on it, it is very bridal, very fu-fu!). Will this impress the people of Hawaii, will I become a legend in later guidebooks? Do I spend too much time picking out my wardrobe? Or even more fantasizing how it will look? YES. (But I did get picked up two days ago, and got a marriage proposal this week - from a dude, and he was LEGAL age too! And I don't think he gets a senior discount yet.)

Cheryl has told me that she is going to Hawaii now to FIND POCKY! Not just any pocky but a very specific flavor she has heard exists in Hawaii called The Brazilian. Cheryl loves her pocky. I am tempted, in a younger sister kind of feeling, to tell her I know where it is and direct her to a beauty shop where leg and other waxing occurs. Then, as the GOOD younger sister I am, tell Cheryl to tell them that she wants The Brazilian and can she have it right now! That’s something a younger sister would do, right? Something which might get me bopped but would be SOOOOOOO worth it!

As for me, I am practicing my phrase, “I don’t know how that happened?”, “I didn’t see the warning?”, “Was there a sign, I didn’t see it?” These are all very useful when you are planning to maximize your good time by ignoring every warning and trying to play the crip card to gain access before pushing every button in sight. Like here, I don’t know where the water came from, “I don’t know how that happened”. So getting ready for Hawaii.

I am burning a new mix, a Hawaii mix including some Within Temptation, which I will make a nice movie of when I get back. That way Linda and I can listen while on the plane. Um, Cheryl has an IPOD which holds like a billion songs, she can fend for herself. I have only 130 songs on my MP3 player!

I am also, have already created labels for postcards once we FIND postcards to post. And assuming we find a postal box in the jungle regions to post them in. But I live in hope, we may even pack a few stamps and a color or two for the evenings. You never know. But yes, three pages of addresses (see, no week without!).

What frustrates me is that I do not have a bikini! I want a bikini, all the anime characters have a bikini, why do I have an old one piece from years ago? Okay, maybe I am a bit long in the body but that would be perfect for…a bikini! I live in hope that we can, in our time in Seattle drop by Victoria Secret and see if they have a Bikini for me, and while we are there, we can of course just see what type of bra and panty sets are available, get all three of us in a room – come on, we are lesbians on vacation! I just realized, this is like some hetero male fantasy. Back to the important stuff: ME - Actually, I would be okay if I got a NEW and cool one piece like this one (I do have the kitty ears for the beach!). And the words on the swimsuit are ME, “Only forward” – that is not just a person ideology, but a demand from ME to my BOOBS! C cup here we come!

Hawaii is all about beaches, beaches and breasts. We have lotion, we have sandals, we have brushes for getting sand out of odd places. I was going through what Linda had packed throwing out vibrators, throwing in vibrators, holding harnesses up to the light with my head cocked to the side (hmmm, is she thinking for me or her?). I was putting in more vibrators. “We need more batteries, many, many more batteries.” I told Linda, “Just in case….for the…um…..MP3 player.” See, I am a total innocent. Linda is the horny one.
The last part of this post is a game I have wanted to play for a long time, which is the “Name Game” which is fun to play in the UK with pubs, and fun to play in the US with diners. So this name game is open to eateries and pubs of all kinds. What are the three strangest named places you have eaten, or just a strange restaurant where you have eaten? For example, before it became popular I ate at a restaurant in the mountains of Malibu, in a windmill, with no electricity where the food, vegan, was made while priests chanted over it. It was called Inn of the Seventh Ray! It was, due to only having one little candle hard to tell if you got your order or not, was this the ‘eggplant of plenty’ or the ‘tomato and squash unification’? In the UK I drank at the Heath, and some places with long Welsh names which escape my spelling now. Also the Slug and Lettuce and the Sprocket. Over here, the place we used to go on road trips in the US was, no kidding, a Diner chain called, Little Black Sambo’s. Now, no longer in business. Odd that (maybe the openly racist menu had some part in that). Then I went regularly to Don Quixote, which had a Don Quixote in armor at the front. The Diner here in town is Pluto’s (the planet, ex-planet, not the Dog of Disney fame). They have malt shakes!

See, this is the restaurant which I run with Linda (and Cheryl), here is me feeding Linda her favorite food, Strawberries! Yum. Maybe that will be the name of the Diner, ‘Yum’, or 'Yum: where flirting and groping by your servers with each other is likely'.

So there you have it. Please tell me the names, and the stories: whether it is some fancy restaurant with a name which translates to ‘Best snails and bull testicles here!’ or some local diner that is called Mom’s but actually you can only order IF you bring a mother. I want to know! Because I am already a little crazy from all the packing (like you may not have noticed) and need something light to cheer us all up. So please, what are some odd named places you have eaten? What is your diner story? And yes, I too learned at a fancy restaurant that those things which LOOK like onion rings but are chewy, are NOT onion rings but octopus related I think.

I never meant to come back from Hawaii.

2009-09-30T03:28:00.000-07:00

In some days I will be heading to Hawaii, I think it is in a week.Some people think or say that I begged and emotionally manipulated my way to a vacation. Others have ideas about what Hawaii means to me. Most don’t know that all this time in planning I never believed I would return from Hawaii. Or that I worked on a suicide plan and started stage one because I believed that Cheryl and Linda were going to Hawaii to only make me happy. Or that I have spent almost a year working to go to Hawaii and 10 weeks working every day, every minute selling things, including hundreds of dollars of books. Nor have I asked for aid to go to Hawaii, or taken money with one exception (that I found out about). Times are hard. I don’t want to do that to my friends.

I have diminished mental capacity (in certain areas). I also have limited physical capacity. It has and will take me eight times longer to do the same blog as it did my first year of my disability. This naturally restricts what I can share about my life. Even though I work, work, work. I feel I am on a train where the events around me are rushing by, and I can never be in the same time stream as anyone else around me. I do not know what day it is. I know I had a disagreement with Linda, an argument. That was last week. I know that because someone told me in an email I read today, I don’t know what the argument was. That is what having no memory beyond a day or two means. You can come up and punch me today and I will be mad. You can come up in four days and ask me how am I, as it looks my nose is swollen and I will thank you for noticing and think you are nice but tell you that I have no idea what happened, I must have fallen down. That is one of my impairments.

So I am not going to Hawaii to make memories. I am going to Hawaii because I love Linda and Cheryl. Linda has never been to Hawaii. Cheryl has never been off the continental 48 states. I wanted them, my family, to go with me someplace where they could experience someplace new. I dreamed it, I dreamed what it could be and I wrote it on my brain board. But just because you try doesn’t mean it is going to happen. You simply don’t know what is possible until you try. So I tried. And I convinced Linda and Cheryl to try.

I will likely not remember being in Hawaii the week after I get back. I will return to my room, across from the construction, and try to survive the winter.

These last two days I have been on oxygen almost continuously because I pushed too far, and the weekend took it out of me. That is what happens, I do something, I plan something, like the plans I have on my board for getting my wheelchair onto the breakwater: something I did because Cheryl had never been on the breakwater. And I wanted all three of us to go. And then I try. And when I do, I do it all, I leave nothing back, no reserves. So I pass out. Or stop breathing. Or aspirate. I have aspirated into my lungs every day for nine days. When that gets infected, I get a fever.

Over the past 12 months, Linda, Cheryl, I and others who help have sent out the equivalent of $14,000-$19,000 to other people (in the Postcard Project and other ways), many people that we know almost nothing about. As one example, we of the Postcard Project have sent enough postcards for every mile to cross the USA: 2,900. If I live a few more months, you could drive from one coast of the United States to the other following the trail of postcards laid end to end. But they don’t lie down on the road but reside all over, here is a picture one reader sent of the postcards they have received.The Postcard Project, like Hawaii, was something I wanted to try. I wanted to believe, and put my heart, my money, what I could sell, and yes, my writing, to create a community which believed that people are important. In the 70+ weekends since I started, I have NEVER had a weekend without creating, matching and sending postcards: whether hospitalized, whether ill, whether passed out. Much of that is due to people who gave in ways I can never repay: financial support, stamps for the postcards, postcards, and some weekends, Cheryl and Linda physically carried me. One weekend I leaned because of fever, when not passed out, with an oxygen mask on my face, finding Linda and Cheryl having collected postcards from a list I made earlier of people ‘most in need’: the dying, the lonely, the children, and those who needed encouragement when tragedies had struck. People mattered. And, so when I was conscious, oxygen mask on and at maximum, I worked on postcards. Worked knowing if I died or was hospitalized that Cheryl and Linda would post the postcards I finished, or help finish and post the remaining ones.

Is it so strange in this world to say, “I will be there for you.” And attempt with all human effort to do so? I made a promise to people: “As long as I live, you will get a postcard through your mail box”

But I also have OTHER plans and dreams. And because I am open about them too on the blog, and open about my worries, or anxieties, I have many, many complaints, all Anonymous (I kept about 80 from the hundreds). The following is typical of what I get lately.

Anon: Why in the world would you have a wish list for people to buy you stuff while you are planning a trip to Hawaii?????

I guess the answer is: “the same reason other people do.” I didn’t go on a summer camp-out, or vacation, because I can’t go out in the heat. Many people did. Most people I know have wish lists. When I can, I give those I know and care about things that surpass or come from those wish lists.

Don’t worry, because the Anon’s made me feel so dirty, I eliminated virtually everything on those lists that was not for Linda, or a memory device for me (I can go look at the list and know what I am saving towards). I am EXTREMELY thankful for those who got me gifts off those lists over the months. I am, because in the nights where I was weak, in pain, or impacted and hurt so bad I wanted to cut myself just having something to stare at helped a lot. Ask Linda. Ask Cheryl, since I know she bought often. Or Linda who said, “I would do anything to take this pain from you.” Every Anon says that my life is a lie who hurts the ones I love. Mentally I am incapacitated in certain areas. I can regress for long periods. Telling a 5, or 8 year old that because they are alive and ill, the two ‘Adults’ who take care of them will never be happy, that ‘Bethie’ is BAD, that ‘Bethie’ is a liar doesn’t help. Telling a young teen from a sheltered society where she is taught only to obey that she did not obey, is bad, and she does things GOD does not like doesn’t help. Because it not only brands all those who give me care as liars (and co-thieves), but leaves messes, emotional messes and a human wreck to be cleaned up. It is easy to destroy. It is hard to love.

Cheryl bought off the list because she loved me and knew that things on the list, like a manga or book make me happy. She likes to see me happy. That is her choice. The DVD’s I worked and saved for on my own. And when pain makes me a bit off my head, having another reality to see and live in to distract can help a lot (thank you 21st century!).

Don’t worry, people don’t buy any more and I am fine with that too. I don’t understand time, and days and weeks and month starts or ends. But I know that my friends care about me, love me. And so if someone wants to be angry because I do need specialized socks, then I guess they will be angry.

When I give gifts to friends (and strangers, because I ‘feel’ they need it – to know the joy of spontaneous caring), which I do every week, my presents to others are ordered from around the world, taking a month or two to arrive. They are limited editions or rarities of interest which I spend time to find: from soap called ‘Blood’ from Villianess to out of stock limited edition 2005 cult stationary, or sometimes just Hello Kitty Gum and something fun like a Yo-yo. I get an allowance, I have ‘mad money’ which is put in my account and that I choose to spend it on postcards, rubber stamps I think people will like, or gifts to give to people is my choice, right? If you care about someone, if you LOVE them, then you want them to be happy. I love dozens and dozens and dozens of people, most of which I have never met most of which I will never meet. But I love them all the same. The Anon's would want me to think, "Oh no, what if they are a scammer!" If they ARE a scammer, and laugh at the stuff I send, then I hope they can remember the love of the act, later, when it matters. But truthfully I would never think of anyone who has emailed me as a scammer (Well, maybe when they told me I won the BBC lottery worth 12 million pounds, or when a princess in exile needed to put 15.6 million dollars in my bank account)

Some people, over time, we will write, email and gift each other regularly. This is a choice I do and a choice some who care about me do too because we like each other. My favorite plushies are all gifts: Rabid (the Squirrel) who has holds for quadriplegic hand grips and watches shows with me, Pounce (orange stripped tabby), HKA (My punk Hello Kitty Beanie Baby), Miko (The grey cat guarding me on bed days), and Eiki Eiki who holds Linda’s heart. And when I can’t remember who gave me the plushie, Linda is there to tell me.

When I have a bad episode, or regress, to a period where I am terrified of everything, Cheryl says that if I am given Eiki Eiki I calm down. When Eiki Eiki was made, Linda chose the heart to go inside, which she was supposed to make a wish. Her wish was for my life. Eiki Eiki holds my life: Linda’s heart.

I will soon be moved from here to Port Angeles, stabilized then a day later, moved the two hours to Seattle and stabilized again, then moved to the airport. I only spend nine days in Hawaii, but six to nine days in the 120 miles getting me safely to and from the airport. And maybe in Hawaii I will do and see things like float in lagoons of 100 foot visability and watch dolphins play (yeah, it exists). I might see the 1,400 foot waterfall in the Valley of the Kings (still inaccessible for wheelies), or the Green Sand made of semi-precious stones (inaccessible for wheelies). I could explore a tropical rainforest (so far inaccessible), or see a plantation town intact from the 1920’s (kinda accessible). I might see flowing lava, or ascend to the top of the mountain, above the layer of heat that makes the stars twinkle to stare at the stars, bare in glory. Or I might not, I might not see the 16th century Kyoto Temple, I might not see anything at all. And all those books sold, and all those DVD sets sold for nothing.

But I came up with an idea and I tried. And because of that idea, and work from Linda, Cheryl and I, now Linda and Cheryl says going to Hawaii is “okay”. We are going to Hawaii and all is paid for (or so they say to ME). Yet almost every place I have on my top list to go to has an explicit warning: “Those with heart and lung conditions should not under any circumstances proceed ……”

I never meant to come back from Hawaii.

I love Linda. I love Cheryl. They know I do what I must to survive, whether that is badminton, or a 10K. And I pay the price. Is my risking my life worth looking at stars? Yes. Is my risking my life worth flying to Hawaii? Yes. Is my risking my life worth spending 50+ hours working only on postcards broken only for sleep? Yes.

I do not want them to say “She was alive, but she never lived.” In many ways, I would that people remember what I tried to do: care about people and remind them that they matter. My name doesn’t matter, the idea does. I wanted all people but particularly those alone, depressed, in darkness, or in trouble knowing that someone worked every week, regardless, because no one should be in those states without people caring. And someone did.

This weekend, I came up with the idea to go to New Orleans. Cheryl has never been to New Orleans. Never been to the French Quarter! This is a tragedy that must be remedied!

Right now, it is just an idea, a train trip to New Orleans, where I can lie and watch the country go by. But I don’t know what is possible until I try. So maybe I will come back from Hawaii. Even though I will know of it only from pictures. Pictures I took. And Linda and Cheryl will have memories. And maybe this winter I will dream of New Orleans.

Ecstacy: we go to stamp exchange (Postcards) & go to see squirrel friends

2009-09-28T02:52:00.000-07:00

As the last weekends had been the 10K and the breakwater, I needed to catch up on postcards from the postcard project to make sure all the people who had requested a postcard or hadn’t gotten anything but bills lately got something nice! Plus, Linda had found a ‘stamp exchange’ starting at 10:00 am at a local hotel, where those who do stamping, using the rubber stamps we use on the postcards were going to do an exchange. So we worked until 4 a.m. matching the names from the list ‘just the right’ postcard: everything from WWII pin-up girls to exotic music instruments made in New Zealand.

We only got a few hours sleep but wanted to be there when it opened at 10 a.m.. We didn’t know what to expect, as it could be people asking huge prices or only a few stamps. We wheeled into a room to find myself in heaven: Tables everywhere stacked with wood blocked stamps and I couldn’t decide where to wheel to first! Ahhh! What if others got ahead of me? The collecting bug was on me. Cheryl and I went to the first table and I immediately found a Coronado Tiger. We only use about four companies: Coronado (they do animals, large blocks of wood and deep cuts!), PSX (out of print and expensive! One woman there said she paid $75 for a single wood blocked stamp) as they make unique series and images, Hero arts (top quality and deep cut), and Stamp Oasis (out of print as is Our Lady of Rubber and Magenta). There was a Tiger for $5 (if I use it 100 times on postcards, that is only 5 cents a use!). It normally goes for $30. Do I look happy holding it and a PSX complex farm yard that I found for $7?
So I went to each table, finding PSX, Hero Arts, (that was the only Coronado I was to find), and other companies, looking at the stamps and building a stack, then paying and leaving Cheryl to put them in the bag or putting them in my backpack (I got a compliment as someone noticed how cool it looked when I came in!). I hit a table every 2 minutes on average. All Linda said was, “You should have seen her at the book sales”. I got a set of Hero Arts flowers for $4 (that is 4 stamps for $4), I found another set of 4 at another table, and 2 mini's. These are the kind of Stamps we order five of, and pay $40. It was like a giant boost to the diversity of stamps I have and can send out, one section mostly botanical, and then other was cars and people. Some of the really obscure stuff wasn't there but there was a lot of really good things like borders and a few animals. But yes, after I did the rounds ONCE, Linda came and looked for child appropriate stamps and then I looked at other stamps I had missed.
And so at the end, this is what we got, in terms of ink and stamps. We FINALLY got some dark green (deep forest green) as well as a good purple. Ahhhh, I needed that. I even managed to find a Stamp Oasis Japanese stamp of a Lady doing her hair in her kimono in front of a lacquer table. Go Stamp Exchange!

So, then it was back to matching and after a nap, we started stamping. Well we didn’t start, first we had to choose ONLY a few of the stamps we had bought that day for what turned out to be the 81-84 postcards for the postcard project we were about to stamp. It was hard but of course the TIGER had to come. (I love that tiger, he looks good in black and white but he looks LOVELY in green for some reason). All the stamps but one are new ones we just got at the stamp exchange. Cool, yes? Linda found the mini monkey stamped in the corner.

So we had the stamps then we spent and hour trying them out with different colors to find out what the right color for each stamp was. Because of the neuropathy I can’t paint in the different colors, I have to find one color, or at best two (press on one side with one color and on the other side with the other) to stamp with. Linda can do a few ‘special’ ones with her secret practice, like the cat and chasing the butterfly and I can, after 30 minutes of work, could do the thatched roof farm, with the watering can and lettuce, the greenhouse, the stone wall, the ivy, trees, door and wood bench so it looked somewhat natural – it was hard, hard work. I also did the red berries, but only once or twice and then my hands couldn't anymore. Also with the different textures, it meant a slick texture postcard came out mushy looking while a different paper might absorb all the color. As has happened here with my lady doing her hair in the Kimono, but I was still very proud to see these Stamps, from the ‘Exchange’ (our money for their stamps!) in use. It was great to know these postcards were going to New Zealand, Australia, UK, Canada, US, Africa and other islands and hopefully people would like the images (who could not love the tiger?).

We didn’t finished until 6:20 a.m. and went to bed and slept. Then it was up and writing for me, writing and writing, all the US and overseas postcards, plus any post stamping stickers. Hour after hour, I sit in a room and think about a person, then write a message, and notes about my life, then on to the next card. 68 postcards went out today (already moving by van and airplane!), and the rest will be ready tomorrow. But after three hours it was time for a break: Squirrels.

The sun was going down but it turned out that there were a FEW squirrels that wanted to see a wheelchair (with peanuts)!
Cheryl met with her disability friendly squirrel who climbed her leg to get the peanut so she didn’t have to bend over and hurt her back. Here we wait to see if it can figure out to climb.

Ahhhh, it found it!
Yes, it turns out with winter coming, the squirrels had overcome the earlier shyness from weeks ago and were up, DETERMINED to have peanuts!
Even Linda who was sitting and taking pictures had squirrels sneaking up on her around the tree to investigate the ‘bag of goodies’ on her lap. Once it found the ‘Mother Lode of Peanuts’ it was rewarded with a peanut and stayed close by while eating it (Good rule that: once you know the source of food, stay close by!).
Here I am with a squirrel who seemed to recognize me in my lap, it just keep looking at me, with a peanut in the mouth, so I got out another and gave it. But it still sat there with two peanuts in the mouth. So I pet it, just a little, because, hey, it already has the peanuts, and was hanging around. A very pleasurable break.

Then back to the room and to finish the last of the postcards. I hope many people get postcards this week. I tried to find anyone we had forgotten or overlooked for a while. That was my weekend, how about yours?

Badminton with Beth: the secret facial expressions of power!

2009-09-25T17:35:00.000-07:00

Sometimes badminton can get a bit ugly. No, not the attitudes of players, I am talking about my facial expressions.It turns out I have spent SO much time alone that I have forgotten the first rule of socializing, “smile, smile, smile!” You look so pretty, oh so pretty with a smile! No matter what you are doing: Go Social Conditioning!

One of my workers saw a picture of me from a few years ago and said, “Wow, you must of gotten that taken when you were REALLY young!” Um, er, I said, “Actually, auto-immune diseases are not really known for being great on the skin.” Sigh, I better start dragging out the facial night cream, and doing make up on days she comes, since I can’t take that kind of slapping twice. Ouch!

It had been two weeks as I had to take the Wednesday off from after the 10K. I just did two games and they were better games, lighter, close, again, loses, but close matches 12-15 in one with a comeback. I just got brain tired. One guy was a tough player and I served several aces on him. He was not amused so the next game he served all over, I had to be ready to back up, to swivel sideways, to do anything, and after he got two aces, I shut that second game down and we made another comeback, but lost. It was intense but fun-intense. I tried my hardest, and that is all everyone asked of themselves. That type of fun where you do something together, everyone trying hard, and see what happens.
Please remember, I am a trained professional, do not try these facial expressions at home. Like you would!

This is about as good as it gets, at the beginning of the match. I am developing a pot which has something to do with ‘cut muscles’ or ‘nerve dead supporting muscles’, it is irritating because I actually have a firm hard stomach underneath but there is the pot. I really, really want to go on a diet but Linda says since I am still malnourished in several vitamins and other stuff I can’t (I have a pot, yet I am malnourished?). Anyway, as the match goes on, I pull out all the stops, which includes the staring at one side while serving to the other (misdirection) and the confusing my opponents with the ‘What the hell is wrong with her?!’ psych expression! I am just telling you that, I would love to say I intended that face instead of just finding it on the pictures later.

I am noticing now that I need not just more physical stamina but mental stamina too. As you can see here in an early shot, my opponent is getting ready to slam the yellow birdie, and I am positioning myself to receive it and return it. That is how badminton is supposed to be played. However, when I get tired, I tend to have to remind myself that I am still in the game. So here we have the ‘wow, look at the birdie go!” expression when I really should be wheeling myself into position for when they hit it back, but no, I am too dazed and fascinated by the pretty birdie in the air!

Of course there were exceptions, like this face where I am going, "Is it in, is it out, looks out but, OMG! It is IN? It is IN?" Remember, these are advanced facial looks and I do not suggest an amateur try them. Here as you can see, I am using the ‘mind focus’ technique to ‘will’ my birdie where I want it to go. Either than or I am low on oxygen and a little stoned, not quite sure. I have noticed that while with repetition I can hit the birdies that come in range, I can’t deal with speed beyond a certain level. It is just too fast for my nerves to get to my spine or brain and respond. So I need to stop watching the birdie and watch the player, have my racket up and be where the birdie might be is my best bet to work back up to an adequate player.

For today, lots of wheeling and stretching and I sweated a little bit (odd thing, I shaved my pits two weeks ago, and only a very little has grown back, I think the sweat in my pits is limited to those glands, and I need to get more ‘glow’ going, but it cuts down on the shaving!), a slight sheen on my torso. So far nothing on my head or neck, both of which are causing overheating issue. But still, good plan, and when I return, on to boxing!

Lie #5: “I can’t handle this right now” and going on.

2009-09-23T21:45:00.000-07:00

I’ve been hit by one of the most painful lies from a few different sides over the last few days.
When I listed the lies the other day, I missed this lie, a lie the person saying it tells themselves, to excuse what they are about to do to you. It hurts me the worst, and hits at the lowest parts of my life. Variation are “I just can’t read your letters/blog because I can’t handle any more bad news right now.”, “I just need time to step back and ‘process this’”, “I don’t know how to handle this”, or “I just can’t deal.” These statements come from AB people, probably you thought of as friends, people you may have been there for in the past. But when your time of trouble comes, when your illness comes, when your diagnosis comes, when you start getting visibly ill THEN like shaking a tree for rotten fruit, friends fall into two groups: those who stay (the few) and those who run away (with a lie to make it a virtue).

Those who are burnt-out can’t even survive really by themselves. I can understand that. Someone in a deep depression is just hanging on and surviving is all they can. I understand that (in fact, this person usually will have the ‘I can’t handle the negative place you are’ bailout of friends also when most needed).

People will decides that they do not want to face the facts and consequences of a friend/partner/mother/father/grandparent/child who is dying/has chronic condition/has chronic invisible condition or is going through burn-out/unemployment. And let us not delude ourselves, it IS a decision: they come up with an excuse and run away.
For those who act that way, I still care for them as a person. I find their acts despicable.

Why? Because that child, or friend, that mother, or partner who is dying, who has a chronic condition like depression, or other visible or invisible ones: they CAN’T run away. Oh, they want to. Some days they might pretend for a while that they can, but in the end, the requirements of living with these conditions means that if not managed, if not resisted, if not maintained, if medication is not taken, then the consequences are extreme. So no, they can’t run. And so they watch the back of a so called friend or family as they run off.
Running away is easy. It is always easy. It also makes the burden harder for those who stay, and for the person who is struggling.

Okay, hands up anyone who WANTS to get a diagnosis of cancer today? Okay how about ALS/MND? CFS/M.E.? Bipolar disorder/Unipolar Depression? Lupus? Lymes? Who wants an accident which will affect their spinal column and thus the nerves below that point? How about a layoff and unemployment? Come on, I can’t see any hands raised! What, no one wants a nice terminal illness today?!

No, nobody WANTS those things to happen to them, which is why when an AB friend tells you that ‘they just can’t handle it’ explaining why they will be/have been ignoring you, then it really puts the boot into you. You think, “What, because they thought I could?”

Be honest. Say, “I am self centered and cowardly and while you might be there for me, and care about me, if I CARE about YOU, that means that I might get depressed and when I go out to dinner, start my exercise program, go to movies or when I am on vacation, that CARING could make me feel…..bad. And I don’t want that.”

Yes it could make you feel bad. Because when you care about someone who has something bad happen to them, then you feel bad too. And sure, people have their own lives and issues and need to take breaks and can’t be there all I time. I can’t. There are more I would like to be there for, but I can’t even control or predict my consciousness. I try. That means trying to read blogs once a week, or two, or sending emails back once a week, I try.

Why, beyond the cruelty of a ‘me, me, me’ generation does this matter? Because this is the lie that will hold you in a prison of isolation. Because every person alive will go through a dark time; their period of suffering. And if all you know how to do is run. Then you have no friends. Because every time a ‘friend’ has bad news, isn’t cheerful or funny anymore because their child died, or they have a Flare, or an MS diagnosis, and you ran, who do you expect to be there for you? Who will care about you? No one.

And you will face that darkness alone.

If you are reading this, commenting, then this isn’t about you. In fact, you are probably one of the people who have been ‘gifted’ with those things no one wants to raise a hand to receive.

I have been ill, coughing up bits of aspirated food and other particles. Apparently last night I was delusional and telling Linda that the ‘radio in my stomach’ was telling me to do things. Pain, exhaustion, fatigue will do that. Make you curl up for some time.
But then you get up again. Not because you want to, not because it is fair, but because whether you can ‘handle it’ or not, no one will save you but yourself. Today, a doctor who said last time that this had become ridiculous and they would take me as a GP told Linda and I that “Well, I can’t really take on the responsibility.” What is that? #30? So we suck it up and go on. I went to badminton tonight. I will post the pictures tomorrow. Because keeping me healthy and alive is my job, my full time job. Whether I am ready to ‘take on the responsibility’ or not.