Grappling With ALS

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2012-09-02T02:48:00.001-07:00

To the random and not so random visitors that have come across this blog, I thank you for stopping by and taking the time to read.

I challenge you to take a moment to leave a comment if you can. It doesn't matter what part of the world you are from, or if you're from my own back yard. Just leave a comment! I'd love to hear from you and your thoughts about ALS.

Seven Months Since Passing and No Tombstone

2012-09-02T02:37:00.000-07:00

My father passed away seven months ago, in February 2012. It's now September 2012 and my father still doesn't have a tombstone. I had to push really hard to figure out what was going on at the funeral/cemetery offices and they were probably sick of hearing from me, but I figured: my Dad went through a lot. My family and I, we went through a lot. This ALS disease that my dad passed away from, it's called "the beast" and as his son, his unofficial manager and his personal representative in most aspects of his care, it is a lot. I figure, the least we can have is a nice tombstone, memorializing my father in his prime, which was pretty much right before he was diagnosed with ALS.

He was a handsome man. The photo I used was of him in a tuxedo at my sister's wedding. I had to crop a whole lot out of course– to save space but essentially it came out looking like a headshot of him in a crisp tuxedo and him holding a microphone. He was an MC and a disk jockey in his spare time so this was appropriate. That's all I wanted, was to see this beautiful tombstone with his photo on it to honor the man that I loved dearly who I took care of at the great expense of my own health and social life. But in our culture, that's what sons do for their fathers if they become ill. The timing couldn't have been worse. I was still feeling youthful and immature and had made a decision to reinvent myself by going back to college after a long career in the airline industry, which was crap after the Twin Tower attacks. I had to grow up real fast and emotionally step up to the plate, I admit. But, I wasn't going to put my father's care in anyone else's hands, especially a facility, which has been taboo in my family for a couple of generations.

So seven months later, and here I am. Still pushing, still fighting to make things right for the memory of my father. But that's ok, it's helped me grow and make me an advocate of the disenfranchised and appreciative of the struggles of the disabled and put in my heart the yearning to help somehow; help and unconditionally love. This is one of the spiritual legacies that arises from having taken care of my father throughout his short but valiant fight against ALS.

I'll let you know when the tombstone comes in.

Never give up.

An Editor To Publish Obituary! Four Months Since Passing.

2012-06-18T15:36:00.001-07:00

"If you think positive and pursue action in the course of that positivity, positive things will happen." –Me.

Grieving the loss of my father wasn't easy. I took it pretty hard. He was one of my best friends and we were always together. We were a very very close family. Sure he had his quirks, but thats what made him unique. I was so upset that I didn't have the money to publish a formal obituary in time for my father's funeral but the fact was that it was simply too expensive given the exorbitant cost of his final expenses and medical bills. We are a family of modest means and my dreams of having a fancy obituary with his photograph in the San Francisco Chronicle fizzled when I was given the price tag.

All hope was lost.

Well maybe not all hope. I have been getting some positive support from a friend and mentor who's mentorship I consider invaluable. From a distance, she did little things to brighten up my grieving self. She sent the largest bouquet of weeping lilies that I have ever seen. It was the absolute first bouquet of flowers to arrive and it took its place rightful place in front of the podium near Dad's casket. When I read the card, that it was sent from Los Angeles from one of my University of California fellow alumni, I broke down in tears. No friend had sent me love from that far away before, and I admired her heart. I'm going off on a tangent, in case you didn't notice, but I had to mention it. But like the flowers, she from afar off–again Los Angeles, sent me numerous messages and manuscripts rooted in positivity and pure loving support.

A couple of months from my Dad's passing, I get a package in the mail. The postmark and address reads Los Angeles. It's from her again. This time she sends an inspiring video about the power of positive thinking, which is something we had been practicing and talking about together for a while now since our time together in Southern California. But it was wonderful to get this new refreshing perspective which seemed to empower me and was just what I needed to lift my spirits up.

I thought about the obituary again. Grey clouds. Then, a sudden ray of light, a glimmer of hope. It hit me. Everything that I learned from my friend, our conversations, the literature, the video, her kindness and caring enough to reach out...there had to be a way to get an obituary published somehow for someone like me who just out of college was knee deep in college debt. I was determined to keep it positive and find a way.

Sure enough, I receive a sad email that a fellow patient with ALS recently passed away. I contacted the family to express my sincerest condolence at the loss of this amazing Italian father and husband at the hands of ALS. I spoke with the son for about an hour, sharing stories, comparing notes and reveling in the fact that we were both part of the University of California network. It's at this point that I mentioned that I read his father's obituary in the paper and that it was so touching to me and that I regret not having my own father's obituary published. He too mentioned to me that he was of a family of modest means and that the paper that published his father's recent obituary–published it for free.

Bingo.

We exchanged information and he put me in contact with the editor of the paper that published the obituary as a courtesy for those living in our county. I contacted the editor right away and explained that I was four months into my father's passing and that I couldn't afford an obituary at the SF Chronicle and sure enough he said that he would publish it for me, service to residents of our county. I've got to be honest, I haven't read their paper often enough to notice there was an obituary column. Now that I've got my obituary published however, I will be an avid supporter of the paper. Maybe a donor someday if I make it big.

Affirmation: Today, I am grateful for those people who have come into my life as if by coincidence, like an angel from above, come down to ease the suffering of a tender soul. For those of you who know who you are, you are loved and appreciated. Thank you for nourishing my spirit.

Socrates Last Will & Testament Kit

One Month Since Passing.

2012-03-23T01:45:00.001-07:00

It's been over a month since my dear Dad passed away. His rapid progression and death was unexpected. Well technically the signs were there. He had a significant slope downward in his health and we had been forewarned that week by our hospice nurses that he was in a declined state, but to me the progressions moved slowly since I was with him nearly 24 hours per day and I couldn't see the subtle changes. Dad leaving me was the farthest thing from my mind. I just did what I had always done from the beginning: buck up and do what needed to be done so that Dad was comfortable and not in pain. But the signs were there–perhaps we the caregivers were a bit myopic in our scope because of the intensity of the caregiving. In the broader picture, we perhaps should have prepared for an obituary in advance. But in the midst of intense caregiving, who thinks of these things? Well the time came. He departed us here on Earth, his light extinguished as fast as a candle on a windy night. That evening he was there, I rested for half an hour, and he was gone.

Hour Glass Sands

My time with you,
is like hourglass sand.
I can see your sand,
me, watching desperately
helpless from the other side
of the hourglass; and you–
slipping away slowly
right before my very eyes.
I bear your witness,
strong for you but
suffering inside, watching
until the last grain
of your hourglass sand
falls into the abyss.

The deafening silence
loud enough to break
that glass in pieces
because our souls cry
out to have you back,
but not like that,
just not like that.

I envision that place
where your soul went–
the glass empty
and you, in no pain.
I see the glass and the sand
overturned, and you
whole.

In Paradise, whole.

© DAR 2012. All rights reserved.

Obituary: A Reality Check

2012-03-23T01:21:00.002-07:00

Bitter.

That's how I feel about the whole process of publicizing a formal obituary in the newspaper. It's expensive enough to die and have all the funeral, final expenses and medical bills to settle and then to find out that to publish the obituary that I wrote, in the San Francisco Chronicle would cost about $1400 is just ridiculous. There certainly is some profiteering going on somewhere in that whole process. I cant help but wonder of the families stratified socio-economically lower than my own, how do they get by publishing their own obituaries? Simple. They don't.

Perhaps these sentiments arise from the fact that I was unable to fundraise the donation amount needed to publish the obituary. So, I underestimated the task of fundraising the amount to publish. But in this, I've come to a realization that there are probably a good number of people who have loved ones that aren't publicized in the obituary column– due to lack of funding. Those that have, they publish. Those that don't have, like our family, they don't.

I want to re-spell it "o-bitch-uary". Because that's what it really is. Shenanigans. An opportunity to make a buck from the bereaved or the beloved. Sometimes, like in our case, that just isn't possible and it would help that there were places where you can publish an obituary where you can get a square deal.

For the meantime, I haven't totally given up on the idea of having an obituary. I'm just going to publish it on a free internet site in tribute and memoriam to a great man. My Dad.

My Father's Obituary (Or Lack Thereof)

2012-03-08T23:50:00.002-08:00

For months I've tried to keep this blog up and running consistently, but as my father's primary caregiver and university student, things got a bit overwhelming, to put it lightly.

Since my last entry in this blog however, despite my deep intent to document his valiant fight against ALS, my dear father's battle ended peacefully when he passed away on February 6th, 2012 of respiratory failure –a complication of ALS. The deafening silence of the machines that once were keeping him alive and the gaping hole left where his presence once was leaves me heart broken. At the same time however, I'm relieved that he is not suffering and in a better place than here.

Dad died in my arms, his last breath– fleeting before my very eyes. I will retroactively write about the progressions leading up to his passing and the great void that remains in the wake of his passing, once I muster up the strength to regain my center balance.

Dad wasn't covered by life insurance. The benefits of having had an active policy would have aided us tremendously for final expenses– I may write about in some other post. We were, however, fortunate enough to have family members and some friends contribute for the funeral and some outstanding medical expenses.

A Proper Obituary

When we die, we all want to be remembered fondly, I would dare to imagine. To have an obituary published however, was a shocking and disheartening process, I found out. It is so expensive, so impossible to summarize in one sentence, someone as complex as my father. A one-liner simply could not suffice to describe the very special person that Dad was, and his contributions toward humanitarian causes such as coming to the aid of catastrophe survivors in Latin America with the help of an American Airlines nonprofit he helped found, helping to inspire youth to use their time creatively by dj'ing music and the random acts of kindness he exemplified in his own generosity of giving towards everyday people.
There's an old saying that rings true to me, which says that "it is more expensive to die than to live". I'm beginning to believe it because a decent size obituary that I wrote (decent size for me being a writer that is) leaves me at just around $1500 dollars and so that is my end goal and the purpose of what these funds will be used for. I simply can't pay for this outright myself right now and so every little bit helps.
I don't want my father to remain in the ground without a proper obituary. What child would let this go unchallenged?

Your help is greatly appreciated.

Please, make your donation right now:

Your donation is desperately needed, is greatly appreciated and will help honor a wonderful man who fought hard against ALS. Each donation will be thanked and acknowledged personally. You will be blessed for your act of giving.

Atrophy Plus: Emotional Liability In ALS and Its Affect On Patient and Caregiver Respite

2011-06-25T11:58:00.000-07:00

   We began our journey in a rush, quickly learning about ALS as fast as we could, but not as fast as the progression itself. Just when we thought we would master one aspect of caregiving and one phase of loss due to ALS, another progression would happen leaving Dad grappling with the loss of another limb while mourning the loss of the previous one. Meanwhile we were stuck picking up the pieces and trying to keep Dad together reevaluate our underestimation of the speed and manner in which this disease functions and spreads along with preconceived notions about the use of comfort medicine and update our methods of caregiving.

   Sure, the neurologists and medical staff at the ALS clinic let us know all of these things in advance. But how many people who know nothing about ALS, are expecting to be paralyzed in a wheelchair in three months and then bedridden a few months after that? Dad certainly didn't think he would, being only able to soak in to the reality that he was dealing with at each point of progression. The terrible thing about ALS is that sometimes, often times, those moments of progression can come all at once, in a multifaceted assault on the patient.

Dad lost mobility quickly.

I held his hand the entire way, witnessing the tri-monthly progressions; from cane to walker, to wheelchair to hospital bed, astounded at the speed and cruelty of this disease. Still sorting out the emotional aspect of each individual progression, I stood by Dad's side, absorbing some of the brunt of that ALS reigned down on us both, him as the patient and me as the caregiver. Both Mom and I were trying to make sense of it all while simultaneously trying to explain it to Dad and help him survive it.

That's when I realized, that it was critically important for me to just be there for Dad, to be strong for him. Whether he knew it or not, or liked it or not, he was going to need me more than he ever needed me before. There was no time for me to dwell in the pathos of ALS. I had to get it together emotionally in order to be there for him and not just in the spiritual sense. 'Being there' for for a loved one stricken with ALS literally means being there physically for them: being their eyes, ears, arms, legs, 24 hours a day, 7 days per week.

Dad and his personality type was going to use every ounce of strength that I could muster.

Two years, from the diagnosis now and my body is physically broken. Aches and pains, sciatica, insomnia and fatigue all are my new bed mates because of the strain, and dare I say burden, of caregiving. Yes, there are skilled nursing facilities. Nevertheless, the man of the house was not entertaining the thought of going to a nursing facility. He was absolute in his decision to go home and be cared for by us... with the help of hospice, once it got to that point. Very quickly he did reach that point.

   It was this time, that he anguished the most–bedridden, paralyzed and robbed of his freedom of movement. It was at this stage of ALS that a peculiar phenomenon was developing. We didn't pay close attention to it, but as it magnified in intensity we became increasingly aware that something was awry neurologically. It is known that, with ALS, the patient retains nearly all mental capacity and cognition and reason, etcetera and so it was that we were set in our mind that he was fully capable mentally aside from the effects of his ALS caused paralysis. What we as his caregivers didn't yet consider was the condition of emotional liability (sometimes known as emotional incontinence) but better known as pseudo bulbar effect.

   Hells bells.

   Just when we thought things couldn't get any worse, outbursts, slurs and bad words at the slightest infraction or nuance of mood was hurled at Mom and I. Dad would hurl insults to Mom and I all day, impossible after a full day of back-breaking caregiving. It makes the physical and emotional burden of caregiving nearly impossible. The psychic pain one feels to see a loved one speak to you like this with all the vile language of hell coming forth in a pseudo-bulbar outburst. I imagine it may be frustration penned up is when he isn't clearly understood because his voice has been garbled by both ALS and the tracheostomy. If the trache balloon is deflated (in the open position) he can speak but the voice is garbled and unintelligible. Conversely when the trache balloon is inflated (what we call, the closed position) preventing both saliva from going into his lungs and similarly preventing air from reaching the vocal cords he can't use the power of voice. In this latter instance, we communicate by facial expression, lip synch or low tech alphabet board. In either case, it must be terribly frustrating for him emotionally and psychologically and to add on top of that pseudo-bulbar effect is just one of those things that makes this one of the cruelest diseases that any man, but particularly my father, who was a wonderful man, undergo. Luckily he has us to help him through his suffering and pain.

After conversations with his neurologist, who just so happens to the the chief neurologist and director of the ALS center at a reputable hospital in our area, there was some semblance of hope, of course it came in the form of a pill. There is a new drug called Neudexta which studies prove to be effective in treating "pseudo bulbar effect" in ALS patients.

   From what I read, and what the doctor told me, it looks promising.

   Some friends and family that have seen Dad's outbursts merely associate it to him being overly emotional, not taking into account the phemotional torrent that is affected by ALS disease. For some, like my Dad, they blurt out cuss words or expletives while others cry or laugh uncontrollably. I would have preferred the latter but we are stuck with the former of the two emotionally liabilities.

   Sadly, the affect of this branch of emotional liability has spiraled from the patient onto us, his caregivers. It has cumulatively added to the weight and burden of everything else going on with ALS and has worn mom and I down.

   I'm falling asleep as I write this, having slept only two hours today from attending to Dad overnight and then woke up early to take mom to work. While she's working I've got to subsequently attend to dad for the entire day until she gets back, and since she's tired from having worked a full day shift, I continue watching Dad until it's time for bed. Some days my day pushes a 18 hour day with the remaining few hours left for me to sleep.

   I have a prestigious degree from our state's flagship university and yet cannot get out there to work and use it but nevertheless, I am grateful for the opportunity and high calling to serve my father in his time of need. Meanwhile, I remain poor and dependent on the kindness of the good hearted to help me support my Dad.

   There is no respite for the caregiver when you are poor and a beloved parent falls ill.

Dr. Stephen Hawking Denies God & Heaven

2011-05-16T11:15:00.000-07:00

I've always perceived Dr. Stephen Hawking to be a hero, even before my intensive crash course with ALS disease. To Dad and I, he was a fighter, a survivor and a signifier of resiliency; a symbol of strength. To us, Dr. Stephen Hawking was one of the most passionate and greatest intellectual minds in the sciences.

After learning today, that he has publicly denied God and any notion of an afterlife however, I feel a bit less inclined to keep him on elevated hero status. Dad 's battle with ALS has been unimaginably hard, given our economic circumstances. The disease easily devoured our lower middle class resources within the first and second year. Without the unlimited resources (surely that the famous Dr. Hawking has to sustain his bodily functions) we have been reduced to relying on small miracles from God to get us through each day. It's been our faith in the notion of God that's been getting my Dad, my Mom and I and my siblings through this living hell called ALS.

I feel that, as a public figure and someone who is a living icon for ALS patients, Dr. Hawking should've emphasized that it was only his personal opinion the God doesn't exist, instead of trying to lay out a scientific case for it.

Dr Hawking declared,

"I regard the brain as a computer which will stop working when its components fail. There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark."

Dr. Hawking, making a comparison between computers and the human brain sees the relationship between brain and body as purely mechanical. He fails to make a juxtaposition, choosing rather a simple comparison that ignores the complex disjuncture between the human brain and the computer. The brain is far more complex than any computer that has ever been developed and the human spirit, perhaps because it is not quantifiable in scientific terms was ignored by Dr. Hawking.

When Dr. Hawking makes his way fearlessly into the "dark"and comes face to face with God, I hope that he'll be able to explain his theory of a Godless, heavenless universe. Despite this though, I think he's a brilliant scientist and respect his work and contributions to science and the world, and his fortitude to keep thinking and working.

See the story here:

http://www.npr.org/blogs/thetwo-way/2011/05/16/136358335/stephen-hawking-heaven-is-a-fairy-story

Introduction

2011-01-01T07:45:00.000-08:00

I should have wrote about this long ago. Perhaps I was hopeful that a cure was available, or that ALS was going to be a walk in the park. Instead we were hit head-on with the full brunt of this beast called ALS. Since Dad's diagnosis and immediate onset, ALS progressed rapidly, ravaging my Dad's physiology and psyche. This of course spiraled into emergent healthcare crises, transforming me at once from a flourishing academic with the joie-de-vivre– into his around-the-clock nurse, caregiver, medical insurance billing specialist, durable medical equipment coordinator and companion–all of which has consumed my free time, my academic studies, my mind, my body and spirit.

"Amytropic Lateral Sclerosis."

I will never forget that name or the fact that I had never heard of this disease before. We all drew a complete blank when the doctor gave the diagnosis, frozen with naive smiles on our faces because we didn’t know what else to do, or how to react. Mom’s face painfully irritated me. I wanted to protect her from the hurt; her girlish innocence captured in the awkward smile of not knowing what do to or how to interpret the physician’s look of seriousness and sorrow. Our naive smiles, half innocent and half crying inside from reading the doctor’s nonverbals. For some reason our awkward half smiles at the diagnosis of ALS made me feel naive, and we would soon come to know how naive we were. In the aftermath of the ALS rapid progression, the heavy burden of Dad's caregiving on mom and I would devastate us in such a way that only another family with limited resources grappling directly with ALS and the intense caregiving would understand.

“It’s a neurological degenerative disease where the motor neurons in the brain cease to send signals to the muscles wherein the nerves are damaged and the muscles begin to wither. It affects all the muscles, resulting in quadrapelgia, paralysis, loss of breathing and eventual death…”

the neurologist said scientifically. She continued,

“Normal lifespan is generally two to five years since the onset of the disease…I’m so sorry”

Professionally composed, she pivoted on her high heels and walked out the door and let us absorb the initial shock of the diagnosis while she set up additional meetings with supportive medical professionals and therapists to lay out a plan of action.

We all sat in deafening silence.

That was about two years ago.

Since then, Dad has progressed to the late stage ALS and Mom and I now have the high honor of being the primary caregivers for Dad.

Prior to being transformed by ALS, Dad was quite the independent jet setter, galavanting the world with treasured vacations he saved up for, including humanitarian and medical missions to disaster sites around the world. All of that, now cut short, with the devastating reality of rapid onset Lou Gherig's Disease.