Lisa Uncorked

The Gift

noreply@blogger.com (lisa uncorked) — Thu, 15 Dec 2011 11:34:00 +0000

The holiday season is a time of reflection for me each year. I am reminded as I prepare for each celebration of just how rich my life is and how filled with love. All of you who have supported our family with your prayers, words of encouragement and gifts of time and money mean more to me than you know. You give me the strength to get through each day with a feeling of belonging and wholeness. You make me brave and strong. As I dash around in my Red RAV 4 picking up Christmas goodies or decorate my tree I am surrounded by your kindness and generosity. Below is just one story of the goodness I have been the recipient of. I know you will recognize the person in this story. She is an inspiration to many. She has her own battles to fight and yet she makes time to help others. Thank you Julia.

The Gift

It was Mother’s Day and the poodle was dead. I had just had my coffee when I discovered its limp body lying in its bed. Its tongue was hanging out. Not a good omen. Mother’s Day always made me anxious, at least ever since my husband, Alec, had become ill. Now I would have to explain the dead poodle. How long could I leave it there, I wondered? Could I hide it? I didn’t cry. I had bigger things to grieve over, and right now I was just mad at the small, curly dog. How dare it die on Mother’s Day? I threw a blanket over it. I had this frozen, panicky feeling. I would think it over while I went to pick up some things at the store.

I got into the car and turned the ignition key. Nothing. The battery was dead. Now I started crying. My whole life seemed to be about death. I reached into the glove box for my “Rescue Remedy.” It was a five- flower formula. Just a few drops on my tongue, and I would calm down. I wasn’t sure the effect was due to the unique combination of flowers or the good French Brandy that comprised over 50 percent of the blend. I wrapped my arms around myself and leaned my forehead on the steering wheel and cried great heaving sobs. Not for the dog or the battery, even though they were both dead, but for my husband who was dying slowly of the most bizarre disease I had ever seen, Huntington’s disease. A black hole of an illness that sucked the life out of the person who had it and consumed all the resources that came in contact with it. So far it had taken his mind, his emotions, his personality, his speech, his coordination -- and with it, the love of my life. For ten years now, I had ceased being a wife and had become a caregiver. Today I felt very alone.

This was what Alec used to call my Birthday Week. My birthday was on May fifteenth; about a week away from Mother’s Day. This year was a big birthday—my fiftieth. I will admit that before his illness, Alec really spoiled me. On birthday week, he would shower me with daily gifts and surprises. Mother’s Day was an exceptional gourmet lunch, usually prepared by him. Fresh hand-made pasta or sushi, picnic style, in some beautiful spot he had chosen. He would have the kids select plants, and he would plant them in the yard; roses, lilacs or deep blue hydrangea. Birthday gifts fell into different categories. I would always beg for some practical item like a leaf blower, and he would declare how unromantic a gift that was. He would buy it first to get it out of the way. Then he would take me shopping for a new outfit, arrange for a Spa visit and on my actual birthday day, he would take he would take an all dressed up me out for a lavish dinner. But that was all over now. He was ill, and I was poor. This last year he had deteriorated to the point that I had to quit my job and care for him full-time, while trying to raise a family and survive on his disability check.

Somehow I had managed to get through Mother’s Day and trudge through the beginning of the week. I contacted friends to get together with me on my birthday so I wouldn’t be sitting and sulking alone. One especially kind friend volunteered to host a party in her home for me. Now I had something special to look forward to, but still I was lonely. Mid-week I noticed a large envelope in the mail from someone unknown to me at the time, and I tossed it onto the desk with my other unopened mail to be processed at some later date.

On Friday, my birthday arrived with little fanfare. After the children were off to school or jobs, I sat alone on the front porch throwing a party for myself, a pity party. I cried desolately and complained bitterly to God. After a bit, I decided I needed a drink to replenish lost fluids. I got an iced tea from the fridge. It was beautiful out, so I went and got the unopened mail to process on the front porch. Settling down in my favorite chair, I began opening mail and sorting it into piles, sipping iced tea in between pieces. Finally I came to the large, strange envelope. The return address was a woman’s name I didn’t recognize.

Curious, I opened the envelope and slid out a small moleskin notebook and a letter. It was from a woman named Julia who explained that she had known my husband in high school. He was “the most handsome boy in school’” she wrote, and he was my dance partner in dance class. He was a year older than me and in my brother’s class. We really didn’t hang out after school hours. The summer after I graduated, she went on, I became very depressed and spent most of my time in bed. I wasn’t even planning on college; I was so discouraged. Then one day Alec came to visit me. My mother let him come up to my room. He sat by my bed and told me I was missed, and he encouraged me to come out and enjoy the summer and to go to college in the fall. His plans were to study in Italy in the fall, but he promised that if I would get up, he would write to me. I did get up, and he kept that promise. Every month I would receive a funny and uplifting letter from him. It changed my life. When I heard of his illness and about your family’s struggles, I was so sad that I wanted to send a little help. I looked in the little notebook and stuffed inside were gift cards: cards for Home Depot, Nordstrom’s, restaurants, Starbucks, and Visa cash cards. There was enough for all the birthday gifts that Alec would have given me, and enough to treat the kids and Alec. I wondered if Julia would know how much this really meant to me. I was glad I hadn’t taken in the Kleenex box. I was crying again. This time my tears were bittersweet.

God had not forgotten me. He had seen to it that my husband’s kindness and love given to someone from long ago would reach out and give to me, for him, on my 50^th birthday. It was more than magical. It was a divine appointment, and I didn’t feel alone anymore.

Unstoppable

noreply@blogger.com (lisa uncorked) — Wed, 06 Apr 2011 17:46:00 +0000

Unstoppable

I thought Alec might enjoy a movie, so for our Saturday Date I arranged to have his attendants meet me at the Regal Theatre. I had planned on seeing a comedy but when we arrived I realized that I had misread the schedule. Looking at the movies available to us I settled on “Unstoppable” with Denzel Washington. It was an action movie about a runaway train. I bought the tickets and Alec and our entourage filed in.
“Peace, do you guys want anything from the snack bar?”
“No we’re fine.”
“How about you Alec? Let’s get you some Charleston Chews, you love those.”
I purchased the candy and some popcorn from the uniformed clerk and then
found my way to the theatre. I gestured to a row in front of the middle walkway banister. I loved to put my feet up on it during the movies and disliked having people sit in front of me.
“How about these four seats? I said indicating four seats in the middle next to each other.

“We’ll sit behind you,” Peace said, “give you some privacy. We can get to him quick enough if he needs to use the restroom or something?” Usually we had two male attendants but today Peace was with a woman who was new to me and unusually quiet.

“Fine,” I said, leading Alec by hand down the aisle my sneakers sticking to the floor where someone had dropped a soda earlier and making funny squeaking noises.
“Alec, lets take your hat off.” I took the soft helmet he wore from his head and placed it on the seat next to him. The hat was really very funny looking. It was a knit navy blue stocking cap pulled over a foam helmet that he wore to protect his head in case he fell. It was large and lumpy, resembling a cross between a wasp nest and a turban.

All was going well as Alec snacked on his chews and sucked down his frozen icy drink. Then suddenly he rose put on his hat and started down the aisle.
“Hey, where are you going? Alec?” He didn’t answer. Behind me I could hear Peace stand up quickly, but Alec was quicker. He was down the aisle and heading towards the front of the theatre before Peace could get to the end to the row. I heard Peace’s phone drop and saw it slide down under the seats. He reached down to get it and now Alec was walking up and down in from of the picture his head and hat silhouetted on the screen, walking back and forth like a duck in a shooting game at the carnival. Peace and the girl were heading down to the front- but Alec was out the emergency exit door.

I can’t believe this, I thought to myself. Should I go get him? Damn it. I had spent years chasing him and he had two people after him so I decided I would just watch the movie until they got back. A few minutes later they popped back through the emergency exit and guided Alec out of the theatre towards the restrooms. All was well.

Before they returned ushers emerged from the back with muted orange flashlights and headed to the emergency exit. They went out and then came back in flashing their lights up and down the first few aisles as if looking for something. Convinced that all was secure they left. I couldn’t help smiling. Alec and his attendants came back from the restroom and they helped Alec to his seat.

“He must have been heading to the restroom.” Peace said. “He should be okay now.”
We all settled back and became absorbed in the movie.

At a particularly tense and dramatic part, Alec again pops up from his seat and grabs his hat, heading out of the aisle and towards the emergency exit rapidly. He staggers like a drunk bumping into chairs on his way and now I can almost feel the eyes of everyone in the theatre on him and me.
Peace curses under his breath behind me, and hisses to the female attendant to please help as he tries to move quickly down the aisle. It is too late, and I think to myself “Ladies and gentleman, Alec has left the theatre.” Sunlight streams in as the emergency exit opens and Alec steps through onto the sidewalk outside and I am amazed that with his lack of coordination not only is he still on his feet, but also outrunning everyone. Within seconds the ushers and their little orange flashlights are back. They have multiplied like amoeba and they are shining their lights up and down the aisles. They go over and check the emergency exit door. Puzzled they mumble to each other and leave. No sooner have they gone than Alec and his unusual posse return and he is guided back to his seat once again. Peace is annoyed and murmuring that he is not working with any women again when he is with Alec.

“Alec you need to stay seated or they are going to kick us out of here. Do you understand?” I say. He nods.

“Home,” he says.

“You want to leave already? The movie isn’t over. You’re ready to go back to the hospital?”

“No. Home.”

Suddenly I understand. This has been an escape attempt. He had not needed to use the restroom and then got lost. He wanted to escape. Where did he think he was going? He can’t even go to the bathroom alone. What kind of disease causes you to have so little self awareness that you think you can take off from a movie theatre and head home with no car, no coordination, no speech, no money; but this is Huntington’s disease. I look at him incredulous. He thinks he’s well. He is so not well. He thinks he’s normal. Everybody in the theatre but him thinks he is not even close to normal.

I am relieved when the movie ends and we head towards the lobby. There in the lobby is the Maggie Moo ice cream mascot, a large black and white cow. The lobby is warm and I feel sorry for the poor individual who is trapped inside the furry costume.

“Alec let’s get your picture with the cow.” I pull Alec over arranging him next to Miss Moo and take out my cell phone camera. “Smile” I say and then take a coupon from the cow. “C’mon we’ll get you a shake to take back to the hospital with you.”
We head over to Maggie Moo’s and I order Alec a large coffee milkshake. We sit while he drinks it a bit and then he gets up to leave. “Alright, you can go. Come on I’ll take you to the car. He takes the full shake and heads to the garbage can. “Alec, no! You can take that with you.” Before I can stop him he has thrown it in.” Five bucks down the drain. More consumption of resources by Huntington's Disease. The black hole of diseases, it sucks everything around it in, money, time and energy. I think of the movie, “Unstoppable.” This afternoon the only thing that has been unstoppable, is Alec.

Thanksgiving

noreply@blogger.com (lisa uncorked) — Fri, 26 Nov 2010 14:04:00 +0000

By 4am Thanksgiving morning I was crying so hard I was vomiting. Alec had been calling over and over all night long.
"Thanksgiving pass? Home? I love you."
"I love you too baby, but we are not going to have our celebration with you today, we will have it Friday"
"Thanksgiving, home." he repeats.
"Yes we will have a thanksgiving but it will be at Dylan's, okay?"
He says okay but then calls back 20 minutes later and starts again. I know how much he wants to come home, but he is never coming home because this disease is the cruelest on the planet. The fact is that when he comes home he is on his own property, his "turf". At that point he will promptly throw both of his attendants out the front door and then head up the steep stairs, probably falling at least once, and then barricade himself in his room. It will then take several policemen to get him out and back into the car to take him back to the hospital. It will make a great story but I do not want to live through it. While thinking through the decision about how to handle Thanksgiving with Alec I see one awful scenario after another in my head. The picture of he and his two attendants falling down the stairs breaking off the banister and putting a giant hole in my wall comes to mind, followed by the court scene where I am sued. None of these scenes make me feel peaceful or thankful. On the other hand the piercing guilt I feel coupled with the emptiness of not having him present is agonizing. I didn't know it last year but that would be the last holiday we would spend together in our home. In the piece "My Hero" I describe what it was like to wake up Thanksgiving morning with a well Alec. It was perfect. What you cannot describe to others who have not lived through the loss of someone close to them is the fact that it never gets easier or less painful. You can still be happy and still enjoy your days but always with a giant hole in your gut that the wind whistles through.

The children helped do the cooking and cleaning this year and we had a good time together and a lovely meal. The day after we had a Thanksgiving lunch with Alec . I think he enjoyed it. It was so painfully sad to me that it was difficult to function. In the end I was just glad the holiday was over and things could get back to normal.

I sat at my desk and prepared to pay the bills. I opened up my on line banking and opened up the checking account. There was no money in it. Where was Alec's Disability check? The check for the children had been deposited as usual but where was Alec's. I felt suddenly sick as I realized what had happened. Without any kind of notice or discussion, the hospital had made themselves Alec's payee and taken the money that we were living on. I was completely unprepared for this. A difficult and sad holiday season had just gotten much worse. Now there would be no money for Christmas, no money for bills. I looked at what I had in savings. Enough for two months, if we made some serious cuts.
I needed to pull off yet another miracle.

What my Husbands Friends Taught Me About Love

noreply@blogger.com (lisa uncorked) — Fri, 19 Nov 2010 14:39:00 +0000

Free at last, free at last, thank God Almighty I'm free at last!

I am referring to my fancy new wheels. I have been spotted recently tooling around town in a 2000 Toyota RAV4, with the windows down blasting FM hip hop. I am no longer stuck at home trying to hitch a ride from one of my children in one of the other two old cars I own and am only allowed to do the maintenance on.

Honestly, I was too embarrassed to speak before now. I needed time to digest this recent act of unbelievable sacrifice and kindness. Truth be known, humility is not my strong suit. I may be short in stature but my ego towers over me wearing a "Capitalist Pig" tee-shirt and only feels good about receiving a return on investment.

It was a Saturday morning when I noticed the envelope on the front door step as I let out the cat. I brought it in and tossed it on the couch and proceeded to the kitchen to pour myself a mug of French Roast. People are impressed with how I always get up early, but without the smell of French Roast nothing would be able to rouse me before noon. I nursed my morning mug and read a little, as I always do, and when I felt sufficiently awake I tore open the envelope and pulled out the contents inside. I was stunned. I browsed through the many checks noting the names of people from whom I had already received generous support and my face became inflamed and tears began running down my cheeks and as much as I tried I could not stop them. I think its was about this time that poor unfortunate Sophia, our ten year old, came into the room and asked what was wrong.
"Nothing." I said.
"Why are you crying?"
"I said nothing! Don't you have anything better to do?"
She retreated rapidly into the kitchen to soothe herself with a bowl of cornflakes.

I headed for the stairs and into my bedroom where I felt safe. The moment had catapulted me back to a night several years ago while I was attending a bible study small group. They knew of my situation with my husband because I had tried to bring him along one time, bad idea. Over our pre-study snack one of the women said,

"My children were complaining last night because they weren't getting the color of new laptops they wanted. I told them that they should appreciate what they had and stop complaining and then I told them about your poor family and its struggles. Just think, I said, your father could be sick and you could be at risk for that disease"

I stood there dumb. I was the "Sad Story", you know the one you tell your children or your neighbors when they complain about their circumstances. I had never until that very moment envisioned myself as the "Sad Story" before. I was horrified. What was I supposed to say? Thank you? I knew she had meant it to acknowledge our grief and as a compliment to our fortitude but somehow it felt bad, really bad.

I try never to think about my situation in too big a way. I mean, I try to experience the day, moment, week I'm in.
In the moment, I am happy. I am enjoying whatever I am doing at the time like speaking with a friend, having a nice lunch, doing housework, pushing a lawnmower, enjoying a nice walk around the lake. I feel, in the moment, that my life is happy and that I am competent and have everything that I need. I go around grateful and peaceful most of the time. Even when I am sad I try to restrict my "sad" to just the sadness of that thing in that moment, if you get my drift.

I even believe that I have a wonderful life. I think back over all the years I have spent with Alec and I think what a rich and beautiful life we have had. I try to make the most out of what we have left by bringing something fun to it everyday. I feel successful. I feel that I am doing a good job. Then someone makes me the "Sad Story" and my viewpoint changes.

I am truly ashamed of this but looking at all those checks I felt like a massive failure, and I was scared. For a moment the room just spun around and I saw a different picture. I was a near widow, with no job, no savings to speak of and my future was threatened with the very real possibility that I would be repeating this again with the unspeakable chance that it could be one of my children. I needed this money for the car and I truly had no other options. I felt powerless. I became for that moment the Sad Story. Horrible, I know.

For the next week the checks would sit on my desk where I would feel intense anxiety just looking at them. I had a very busy and important week and I could not deal with my emotions or the idea of buying a vehicle until I could finish what was on my plate. It was a key week which could make a big difference in how Alec and others who had his disease would be treated now and in the future. A clinical study had been arranged where I think 40 to 50 medical staff members at CRH at all levels would be attending, and Dr. Mary Edmondson of our local Huntington's Disease Center for Excellence here in NC would be the guest speaker as well as many of the staff at Dix that had been successful in caring for Alec. It would all be taped so it could be used over and over to educate other personnel on HD. My mind could only handle one big thing at a time.

The study had gone well. Dr. Edmondson spoke about HD and how it affected the brain and behavior and different ways of caring for those with the disease. But the real turning point had come when one of the Techs (attendants) from Dix who had cared for Alec got up to speak about how to care for my husband. His name is "Godswill" I swear. This is on tape and I will try my best to get a clip of this for everyone to see because it was beautiful. I can't remember everything he said, but here is some of what I remember.

"My name is Godswill and I sometimes took care of Mr. Brough at Dorothea Dix. When I take care of a patient I always say to myself that we are only one day apart. Today I am healthy tomorrow I could be Mr. Brough. We must treat those we care for with respect as if they are an honored father or brother. If we cannot do this then what are we doing here? Mr. Brough is a good man, a gentle man and he does not want to hurt you. I love Mr. Brough he is like a brother. When I walk with Mr. Brough I don't walk behind him pushing him, I don't walk in front of him, I walk next to him. I put my arm around him if he seems to be falling or I take his hand. Mr. Brough is not hard to care for, I could take care of him all day long walking next to him. Speak slowly to him, one thing at a time, and wait- he will answer you. He is very smart and understands more than you know. If you speak to him like a friend and don't command him he is easy to care for"

He spoke for maybe ten minutes and there was not a dry eye in the house. I thought back to where we had started from and I could not believe how far we had come. From simply clinical care to care from a position of love and humility. Wow. Godswill had seen Alec and not the disease.

I came home and there on my desk were the checks. I started to see them differently. We all need each other and like Godswill said we are all just one day apart. Alec's gentleness and kindness to people he met over the course of his life and the people he would meet now was just coming full circle. Through our lives we give and receive in season and it was planned this way by the creator so we could experience both our separateness and our unity. Now instead of viewing this as charity to someone who wasn't pulling her weight, a drain on society, my view was shifting, It was a circle of love with each one of you joining with me to care for Alec out of honor to him and belief that we could make a difference if we all worked together. We weren't the Sad Story, and we weren't alone.

I tell you truthfully I now ride around in my Red RAV4 feeling surrounded by love and support and the car itself has become a symbol of how beautiful our life is and how precious. You have given us more than just a car, but hope and love and feeling of unity, blessing and encouragement so that every where I go in it, I never go alone.

Thank you, you have been the hand of God extended.

Falling

noreply@blogger.com (lisa uncorked) — Thu, 21 Oct 2010 00:07:00 +0000

I had settled into the sofa. No, I had melted into the sofa, my body deliciously relaxed. My eyes were fixed on the large flat screen TV and I was experiencing the euphoria which the show "Pawn Stars" reliably delivered. It was Sunday evening, the house was quiet and I was obediently following the commandment to rest.
My cell phone on the coffee table began to glow and then the much too happy little ring tone began to play. I
allowed my eyes to slant in its direction without turning my head, CRH flashed on the screen, the hospital. "Oh good grief," I said out loud and reached for the phone while simultaneously pausing the DVR.
"Yes," I said.
"Is this Ms. Brough?'
"It is."
"This is the on call physician at Central Regional Hospital. I am calling to inform you that Mr. Brough has had a fall."
"Okay."I said.
"He appears to be fine but he does have a laceration on his head that will require some staples or stitches and I would like him to have a CAT Scan to be sure there is no internal bleeding. We will need, to take him to Durham Regional Hospital for this."
I have been hit by an emotional Mack Truck. I begin to immediately experience chest pain and nausea. Not because he is seriously injured, but because I feel directly responsible for this; and for good reason, I am.

"Okay." I said.
"Mr. Brough will not cooperate. He refuses to go."
Of course he does, I think.
" Do you think you could speak with him and convince him to comply?"
I think nothing of the kind but I reply that I will try and have them put him on.
"Hey baby, I hear you had a fall."
"No." he said,
"You didn't fall?"
"No."
"Well, the doctor seems to be convinced that you did. He would like you to go to Durham hospital to have it checked and so would I. "
"No, I'm fine." he said.
"I'm sure you are but you may need a stitch. I will meet you there."
"No, I'm not going."
"Don't you want to see me? I coax. I'll come there and meet you and we can have an extra visit."
"No, I'm fine."
So much for my magical abilities. I tell the Doctor that I haven't convinced him. He tells me that they will have to use a Posey Vest to secure him in a wheelchair. I tell them good luck with that and that I will meet him and the techs at the hospital. The techs are his attendants, and he always has two.
With great difficulty I extract myself from the couch and reluctantly exit "Pawn Stars" saving it for later. I grab my laptop and Google up Durham Regional, it is a 35 minute drive. Halfway there CRH calls again. They still cannot get him out to the car. I ask what they want from me. They would like me to try again to convince him. I am once again unsuccessful.

"I'm sorry, my wand appears to be out of order."
"Well, the doctor says he has to go, any suggestions?"
"Have you tried a tranquilizer gun?" I ask.
"What?" the nurse said. No sense of humor this night crew.
"I'm sorry, I don't know what to tell you except you can say I am there waiting for him."

I arrive at the hospital and wait over half an hour before he finally arrives. I am taken back to room ten where he is lying quietly on the gurney. He is very calm, almost asleep, and I wonder what cocktail induced this delightful state. His two attendants rise to greet me.

"I see you opted for the tranquilizer gun." I quip. They smile unsure of how to take my comment. "I'm joking,"
I assured them.

There is blood on his pillow and I lift his head gently to have a look. It doesn't look too bad but think it will probably need a stitch or two.

Was it only this last week that I signed papers explaining my position on restraining devices and interventions that could help incidents like this be avoided?

I, Lisa Brough, wife and guardian of Alexander Brough, hereby make known my wishes concerning his care at CRH regarding falls risk. The document goes on to explain that I am aware that his disease will insure that he will have falls and that those falls could result in severe injury, including paralysis and death, and in spite of advice from the team at CRH I have declined the use of retraining devices and other interventions that irritate Alec and that I feel limit his freedom and take away from his quality of life. It does not say that I am familiar with stories of other HD patients that have been strapped into chairs and tied to beds to avoid injury and how many quickly gave up in apathy and depression to bed sores and infections... It does explain that I believe that although being tied to a chair in a Posey vest might prolong his life (and I am not truly sure of this as I feel the exact opposite may be true) what kind of life would that be? I want him to live the rest of his life with dignity. I also believe that this is Alec's wish. I'm convinced I have made the right decision but staring down at Alec on the hospital gurney that evening I realize it will be hard on us both to live out this belief.

After a cat scan that shows no brain damage, other than that caused by the disease itself, a couple of staples and a dressing that reminds me of an old Shirley Temple movie where Shirley is wandering through a hospital looking for her wounded father, they take him back to CRH, and I go home to be alone with my guilt.

In my defense, I have consented to one device, a soft helmet. It is constructed of foam and covered with terrycloth. It is attached to the head by an adjustable velcro flap and it is hidden under a not so fashionable navy blue knit cap. I am pretty sure he will refuse to wear it; no, I am positively sure he will refuse to wear it. I will have to be very creative to get this to go over. I know Alec's friends will be arriving in a couple of weeks and I am counting on their help. I ask them all to please get navy blue knit caps to wear and to present the soft helmet to Alec as a gift when they come. Our daughter Morgan refers to Alec's friends as "Dad's Posse" and they came through for us in a big way. Without the loving warmth and courage of this devout group, not to mention their great sense of humor , Alec and I would undoubtedly be making many return visits to the emergency room for staples. This was the beginning of the "Happy Hat Club", so named by Phil as he presented the gift to Alec. I am trying to get the video of this event posted but I must put pressure on my teenage daughter who for some reason does not like to give me the pictures and still will not friend me on FB. In the meantime I have borrowed a couple of pics from Phil's FB so you can see the results for yourself.

For all those with loved ones who have HD, I know how hard the decisions you must make for those in your care are to live with, and you are always in my prayers.

Apple Picking

noreply@blogger.com (lisa uncorked) — Tue, 12 Oct 2010 15:20:00 +0000

Big, sticky, crisp caramel apples. When I think of Fall I see them in my mind and my mouth salivates. Morgan made one batch for us last week, which was eaten in the same day. The tradition has been successfully passed down to the next Brough generation.

One of the things I miss the most about New York is apple season. Alec and I would take the children every year to pick apples. We loved Fishkill Farms. It had fresh sugared doughnuts for sale, along with apple cider, pumpkins and a whole store of fun fresh farm made products. The children loved it for the pony rides and petting zoo. Alec and I knew that their favorite thing about apple picking was that we let them drive the car through the orchard. Oh, yeah, we are really cool parents. We also let them ride in the trunk; we didn't shut it, we left it open and drove around hitting bumps as they and the trunk lid popped up and down. Alec believed that life should have theme music, like the movies, so he chose different music for different family activities. Apple picking music was Hayden's trumpet concertos and Pachelbel's Canon in D major, full blast.

Besides music choice he was extremely picky about the fruit. Being a Cellar Master, fruit was his thing and he undertook the choice of which trees to pick from with great care. It was for the rest of us tedious. "Can we pick yet?" the children whined as Alec slowly made his way through each section tasting from each of the trees. Finally, we would see him smile and know that he had located a spot with just the right balance of sugars to acids, the perfect crispness, precisely the right snap to the skin, and we would be unleashed. Under his watchful eye we would climb the trees and be directed as to which branches held the best picks. He always made sure there was a wide variety of apples and in his mind he had planned them for each special dish. Those just for eating, those for pie, those for caramel apples and, of course, those for applesauce.

We would drive home our hands and faces still sticky from cider and sugared doughnuts feeling that wonderful kind of relaxed you get from being outdoors all day in the sunshine and the cool fresh air. Always that same evening Alec would have his hands in flour rolling out pie crusts- only he could make them, I was banned from this activity as I overworked the dough and made it tough. No amount of his patient instruction could overcome this flaw of mine, so I was the one who peeled and sliced apples. He liked to get a big pot of soup on too, maybe his split pea or oxtail. The smells of savory soups and cinnamon apples, the fragrance of Fall and family and Alec and love.

Halloween Home

noreply@blogger.com (lisa uncorked) — Sat, 09 Oct 2010 09:21:00 +0000

The happy, upbeat, mechanical tune jars me awake. I look at my cellphone on the bedside table, it is 4:23. I know who it is.
"Ms. Brough?"
"Yes."
"This is the CTU at CHR, Mr. Brough is awake and he would like to speak with you."
"Okay."
"Heeeyyyy." Low, drawn out and soft. It has been his greeting to me since we first met. It brings me immediate pain that hits me right in the chest. I am vulnerable in this half asleep state. I haven't had time to brace myself for the day.
"Good morning baby,how are you?"
"Good." His voice is breathy and slow.
"I miss you, I'm sorry I wasn't able to see you this week. It was a rough week." I have terrible anxiety about this. "Paul fixed the car, it was just a loose battery cable."
An easy fix, a twist of a bolt but diagnosing it had taken up the window of time I had needed to make the hour drive out to Alec. It was very hard to see him now that they had moved him so far away. I had applied for a pass to take him out on Monday, but he had figured out that I was coming on Mondays and it didn't go well. The first call had come as I was trying to get Sophia out the door for school.
"Ms. Brough, this is Dina the head nurse on CTU. Mr. Brough is very agitated. Did you tell him you were coming?"
"No, but I think he has figured out that I come each Monday."
"Well, he is very upset and is trying to get out of the unit. He is taking swings at the techs and he has fallen twice. We have a call into his doctor."
"Do you want me to speak to him?"
"We can't get him near enough to the phones right now, we can't get him calmed down."
"I'm not going to come, just tell him I'm not going to come." I hang up. I figure they won't approve my taking him now anyway. They are still getting used to him and they don't want to have him visiting if he is agitated, and if he knows I am coming he gets very agitated. I could fight my way through this, I did last week. Coming anyway and insisting they bring him to me, all agitated, and showing them that as soon as he has access to me he calms down immediately. I had discussed this problem with them at his treatment planning meeting. "We understand from the staff at Dix that Mr. Brough gets agitated when he knows you are visiting because he anticipates your arrival." his doctor states. I flippantly remark that I have this affect on men. It really isn't funny and today I have no fight left in me. I am weepy and emotional, not a face I want to show the staff there. In fact I don't want to deal with Huntington's Disease at all. I want to pretend this is over and that it is a normal day. Then I do something incredibly selfish. I make an appointment to get my hair cut and colored. I have nothing left to give anyone. It is time to refill my tank. I figure I will make it up to him by popping in on Thursday when he doesn't expect me.
On Wednesday I go shopping and buy him new movies, new shoes and other personal items. I cook a delicious pasta sauce with pork tenderloin and portobello mushrooms in it. I will bring him a nice home cooked meal. It is a privilege I had to fight for as they did not allow outside food. Thursday morning I get ready packing up the meal and all my gifts and head off. Five miles into the drive the car begins turning itself off. A big knock followed by all the lights on the dashboard lighting up and then the car starting by itself again. It happened over and over as I turned the car around and brought it back home. I called and said I wouldn't be coming again. Stupid car. Last week it had been $500 for a new ignition. This had at least been a cheap fix.

It has been eight days since I have seen him when he calls this morning.

He mumbles something I don't understand.
"What baby?"
"Halloween."
"Halloween?"
"Yes."
"Your looking forward to Halloween?"
"Yes, home. Halloween, home." It sounds like Haaall ohh weeen Hooommme.
"You want to come home for Halloween?"
"Yes, candy."
"Halloween candy, oh, you would like to come home and have some Halloween candy. You remember I keep the dishes filled all month. Let's see, you would like some Milky Ways and Kit Kat's right?"
"Yes, I love you."
"I love you too, I will bring you some candy when I come this week,okay?"
"Okay."
I chat some more telling him about the week. Then I say goodbye.
"Home,"he says again, "Halloween, home."
"You want to go Trick or Treating with Sophia?"
"Yes."
I think this would be hysterical. He won't even need a costume. We'll just let him wear the institutional scrubs, that with his frozen facial expressions and his drunken Frankenstein gait will be the scariest thing our town has ever seen. Couple that with the fact that we are not allowed to go anywhere without two monolithic black men on either side of us within arms length and you have quite a show. I've requested that the attendants wear suits and ear buds so that we can look famous and not crazy but so far I've not gotten this. For some reason they think I'm joking.
I realize he is serious about this and I am running it through my mind. They will not allow him to ride with me, he must ride in the state car with his two companions. I consider how this will make our little Sophia feel as the car follows along behind her and her friends as they trick or treat. Hmmm, not good. Perhaps he can visit during the day, being there for pumpkin carving and an 'Al Fresco' lunch. That sounds better.
"I will ask the doctor, okay?"
"Okay, I love you. Halloween, home."
"I love you too sweetie,see you this week, bye."
"Bye."

A thank you to all

noreply@blogger.com (lisa uncorked) — Sat, 11 Sep 2010 16:47:00 +0000

I am very deeply moved by the out pouring of love and support from all of Alec's friend's and community. Huntington's is not only a cruel disease but a brutally long one. Sometimes I find myself running low on hope and strength. It's relentless nature consumes all the resources around it- physical, emotional and financial. All of the gifts and letters I have received over the last three months have been energizing both financially and spiritually. If you have not received a personal note from me yet, you will. I am fussy about notes and feel they must be handmade and hand written and I have gotten through over 30 so far.
Because of your generosity we have been able to keep both cars running, laptops repaired, broken cell phones replaced, home repairs made, Morgan's college classes paid for, some medical and legal bills paid off and been able to meet Alec's need of clothing, shoes and personal items. I even have a small savings for emergencies that puts my mind at ease. Knowing that so many people love Alec has given me great strength to keep up the fight and we are winning!
After one year of dealing with the mindset of the medical community as regards HD, this last week I saw the results of my efforts and I could not have done it without all of you who have been so supportive. Last August when they took Alec to Dix hospital I fought as they did not bathe him, over medicated him to the point of muscle rigidity and inability to chew and drooling and then let the spread of staff infections of his skin spread over his body until his legs were nothing but scabs 7 inches by 5inches wide all over and his arm became swollen as it moved through his system, he was so sick. And I had to sit through one of the doctors explaining to me why I should let him die of this.... unbelievable. But I persisted and fought and found one wonderful doctor in Dix who helped me, now he is bathed daily, his skin is cleared up, he has his own room and tv, he is on light meds that are effective and make life better for him. He has well trained attendants that have become like family to us. The nursing staff and one empathetic and loving Social worker have taken up our cause. He is treated with love and respect.
The most amazing thing is that the staff at Dix is now preaching my gospel for me! Alec will be relocated to Central Regional Hospital this month, the staff of Dix including the Director Jim Mayo sat down with me and the staff from Central Regional and the Dix staff advocated for us explaining the best ways of caring for someone with this disease and insuring that Alec would be cared for and have the best possible quality of life. This will not just effect Alec as they have another HD patient there that will also be transferred. It has opened the door for my local HDSA chapter with their doctors and Social worker to come along and help to educate and advocate for new ways to help those with this disease. You have all been a part of this. We can change the quality of life enjoyed by people with this disease. Thank you all again and may God bless you all for your generosity. As a thank you to all I am posting below the first chapter of my memoir which should be completed in 6 months. It tells of the beginning of our relationship and my editing team say that they have fallen in love with Alec as they have read the chapters I have completed so far.

A Decent Interval

“Alec, Tony is at the bar with her!”

How could he bring her here? Why would he think I want to meet her! What should I do?” Damn Italian males with their Madonna whore complexes. I wasn’t his sister, even though he felt that I was, and I was not his friend either. For nine years I had dated this Bozo, doled out money and sat in night clubs dancing, applauding and supporting him as he pursued his music career. What did I receive for this loyal devotion: the friend card, no worse—the family card.

“I love you like a sister,” Tony said tenderly holding my hands and looking at me seriously, “but not like a woman, and it isn’t fair to you for me to stay and continue our relationship.” We have had a lot more sex than most siblings, I thought to myself as he spoke. “I’ve met someone else I feel is right for me. Someone I am attracted to as a man to a woman.” And now she was sitting at the bar in the Hors d’Oeuverie at Windows on the World, where I worked as a Captain. I was hiding in the Wine Cellar trying to peek out the door and get a glimpse of the hot Latina who had replaced me. Latina! She had glossy black hair, was full bodied with golden skin and looked a bit like Natalie Wood’s Maria in West Side Story. On the other hand, I was slender with platinum blond hair, a color my gay boyfriends said I got at the

“white as a sheet hair salon.” We were night and day. She was his type? I didn’t relish the idea of standing next to her in my shapeless captains whites that hid my slight curves. I was sure I would look quite boyish in comparison.

Alec placed his hands on my shoulders and turned me toward him. The sight of his warm chocolate eyes calmed me immediately. “You should go out there and greet her with a big smile on your face just as you would anyone else. You don’t want him to think you’re still pining for him do you?”

“No,” I said with conviction. “I think you are much more beautiful than she is” he added. How did he know I needed to hear this? His soft voice always felt like a caress, it flowed from his mouth and seemed to pour over my body like a protective coating. “She’s so – voluptuous,” I moaned. Alec took another look out the door. “She’s chubby,” he declared.

“You are perfect, you know that?” I said smiling. He spun me around toward the door, opened it and pushed me out.

I did as I was instructed, I marched up to the bar with my best Captain’s smile and went through the motion of being delighted and interested in meeting Tony’s new obsession. After what seemed like an eternity and which was in reality only 3 minutes, I headed back into the Wine Cellar declaring I was in dire need of alcohol. My glass was already sitting on the desk—Champagne—my favorite. I sat down and took a deep sip and the tiny bubbles seemed to rush through my system gobbling up my frayed nerves like little Pac men.

“What a good friend you are, you anticipate my every need. Wouldn’t you like to be more than friends?” I had quite recovered and was back to my flirtatious self.

“Pazienza mia amore,” Alec drawled out not looking at me, he continued restocking wines and making notes on his order sheet. I loved when he spoke Italian to me. He had lived in Italy for over a year studying art. He never told me “no” when I flirted with him he just said, “Patience my love.”

“Oh, for goodness sakes, how long is this decent interval to continue?” I demanded. Alec remained silent but I did notice he was smiling.

“It’s not funny. I’ve been using my very best seduction on you for almost a year now; in fact I think it’s been longer than a year!”

“You were dating Robert for eight months.” He reminded me.

“That doesn’t count,” I said, “it was just a rebound fling,” I lowered my voice, “and besides that was over months ago.”

“Two months ago,” he corrected.

“What, are you keeping a calendar? Forget it; I know you won’t come to my apartment but how about some dinner at The Odeon?”

“I can’t, it’s too late, and I’ll miss my train”.

“Oh.” I said.

Why-oh-why did the last train back to Irvington have to be so early?

Alec had been living in his parents home since his breakup with Celina. He had given her the Manhattan apartment. We had both been through brutal break- ups and Alec had decided that there must be a “decent interval” between the old and the new. I could not relate to this concept. My practice had been to use one man to get over another. That’s how I got involved with Robert, my best friends brother. It was a bad idea that ended badly As soon as he had proposed I disappeared from his life overnight. During the entire ordeal I had continued to flirt outrageously with Alec. I can’t imagine why he thought I was unstable and not ready.

I was much more disappointed than I let on.

“Is there any more Champagne?” Alcohol would have to suffice as comfort this evening.

“I only opened half a bottle because it was late, but you can have the last glass,” he said.

I liked that Alec respected the fact that I was a dedicated lush. Realizing I had lost this round I tossed down the rest of the champagne and announced I was going home and was ready for my goodbye kiss. He allowed me this one luxury, a tiny peck on the mouth when I was leaving. The champagne and the emotion of the evening had left me a bit reckless so when he bent to kiss me I held his lapels and ran my tongue lightly over his bottom lip. “I couldn’t marry Robert because I’m kinda, sort of, in love with you,” I whispered. His eyebrows went up in surprise and his smile widened.

“Pazienza, mia amore” he said and put his finger to my lips, signaling that that had been enough of my naughtiness for one evening.

Windows on the World was located on the 107^th floor of World Trade Center One and from its main dining room you could see Manhattan, Queens, Brooklyn and New Jersey. The room was arranged in raised platforms and sunken pits so that every table had a perfect view, all 300 seats. I stood on the top step leading down into the Thirties’ pit gazing out of the windows. All of Manhattan was spread out at my feet and the lights of the city sparkled and moved. I could feel the energy, the aliveness of the place. I loved the restaurant. It was Saturday night and my pit was filled with animated diners and the waiters were busily rushing back and forth filling orders. Alec was working in the wine cellar as he did every Saturday night. I glanced over my tables looking for possible wine orders so I would have an excuse to go back and see him. I had become the number one Captain in wine sales and everyone there knew why. It was no secret that I had launched an all out campaign to win this man. He was gentle and kind and drop dead gorgeous. Six feet tall with almost black hair stylishly cut and the slim well-defined body of a dancer.

His eyes were enormous and deep brown with extra thick long lashes. His face was almost too pretty to be a man’s except for the saving grace of a two inch scar that ran down the right side of his chin. He had gotten it in a skiing accident. The scar, far from detracting from the beauty of the whole, made his face incredibly handsome and added that little bit of danger look I love. During the day he danced with the May O’Donell Modern Dance Troupe in the city and studied ballet at Dance Studio 101 on Lafayette Street.

Looking down into the pit I saw my mark, table thirty-two, their entrees would be leaving the kitchen soon and I had a guest who had finished his glass of wine. I walked up to the table casually resting my hand on the back of my thirsty guest and faced the Host of the party. “Your entrees will be arriving shortly, would you like another bottle of the Brouilly or would you like to see the wine list again?” The host noticing the empty glass in front of me ordered another bottle and then another guest requested the wine list so he could order a bottle of white for the women’s fish entrees. I smiled graciously. I was such a pro. I took the white wine order and headed off to the cellar for another peek at my Adonis.

On my way through the kitchen to the cellar I paused to check my hair in the reflection of the cashier’s plastic booth. I pushed open the cellar door, but was disappointed to see Alec was no where in sight. I sighed deeply and allowed my shoulders to drop dramatically. I grabbed the bottles of wine and laid the dupes on his desk. Duplicate copies of each order were required so Alec could keep an accurate accounting of what left the cellar.

Rats. Why was I trying so hard anyway? It had been three months since my declaration of love in the cellar and nothing had changed. He spent time with me, talking, walking in the city, and eating out: but if I ever tried to slip into the booth on his side or take his hand he discouraged me. Maybe he was gay. It simply wasn’t normal for guys to turn me down. Maybe I was out of my league. Alec was far more educated, elegant and worldly than I. Maybe I had way too high an opinion of myself. After all, Tony wasn’t attracted to me anymore. Maybe at twenty-four, I was losing it.

“Hey, you back here again? You’re moving serious amounts of vino tonight aren’t you?” Alec had come up behind me. I turned and those melted chocolate eyes were on me. I was under his spell again.

“I try to do my part.” I said.

“Keep up the good work.” he said as he walked past me with a new pile of wine lists to fold.

Keep up the good work? This man perplexed me to no end! I went back to my station and vowed I would have my waiters pick up every bottle I sold the rest of the night. It was a vow I kept for, oh, maybe thirty minutes before I needed another fix. The truth was I really enjoyed flirting with this man knowing I was safe. I would not be able to do this with other men without finding myself in trouble. It was rather charming, him playing the coquette, the unattainable one. I looked forward to our Saturday night together in the cellar where I would entice him and he would send me home alone, but tonight might be a short one. The restaurant had been very busy and I had a late table which was still seated and it was near midnight. Last train was one am.

As soon as I said goodbye to my guests I dashed back to the cellar for whatever time remained. Alec greeted me with a big smile, “I thought you might be a no show tonight.”

“Very funny, you did not. I had a late table. What’s to drink?” I said.

“Well it is late, I could open a half bottle of the Corton-Charlemagne, you like that and I will make my train…or, I could open a bottle of Perrier Jouet Champagne, but I will miss my train. So, will it be Corton- Charlemagne or Champagne?” He paused for my reply looking me directly in the eyes waiting for my response. The significance of his offer registered right away. He had called my cards. I could feel the heat spreading from my chest up my neck and over my cheeks. His smile broadened and I realized my mouth had dropped open but no sound came out. “Do you need a minute to think it over?” he said. “No, no I don’t, I would like champagne.” I affirmed. I so wanted to sound like my usual bold, saucy self but I was sure he could hear my heart beating like a cornered animal. He had trumped me! He casually reached into the wine bucket by his desk and withdrew the champagne. There was no half bottle in the bucket. He had not anticipated a refusal. He opened the champagne and began talking like any ordinary night about the service that evening, the new bands he liked, dance class that day and I sat, mute, sipping Champagne. A loud buzzing noise in my ears accompanied by the pounding in my chest kept me from hearing anything. “You okay?’ he said. “You’re so quiet” Now he was smiling like the Cheshire cat. He was enjoying my discomfort.

“Why don’t we get out of here” he said. “You go down and get ready and I’ll meet you by the elevators, okay?” A very weak “Okay”, was all I could muster.

I sailed rapidly down the staircase to the 106^th floor where the employee locker rooms were. My mind was racing with stupid things like, did I shave my legs and what underclothes did I have on. Darn, darn, darn he was so in control. He had reversed the roles in a moment. I took off my captains’ uniform and stuck my foot in the sink, my feet smelled terrible after service. I think I gave myself almost a full bath with a paper towel and hand soap. I refreshed my makeup, fluffed my hair and sprayed myself with Dioressence. It would have to do. I was shaking, this man had me shaking I was so excited and terrified.

I dashed out to the elevators where he stood relaxing against the wall. He straightened when he saw me coming. When I got near he slipped his arm around my waist lifting me up to his face and kissed my forehead, “You’re beautiful,” he said and guided me into the elevator.

“Grand Central Station Please.” Alec instructed the cab driver.

“Grand Central? I thought you weren’t going home?”

“I’m not.” he said.

“We’re not going back to my apartment?” I said.

“We’re not.” He replied.

“Where are we going?” I asked.

“Someplace.” he said smiling. I was not to have a say in this. He had firmly taken the wheel and if I wanted to ride along it would be on his terms. Studying his handsome profile in the back of the darkened cab I had an epiphany. It had always been on his terms. I thought I had been pursuing him, but he had been pursuing me. After my break-up with Tony I had gone through men like panty hose. I had made a sport of it like shooting tin cans off a fence. I had gone a bit too far with Robert and had the poor man proposing then I unceremoniously dumped him. Through it all had been quiet, patient, beautiful Alec. Alec taking me to a dance class, walking me through the park, sitting over coffee listening to my tales of woe and bad dates. He refused my advances, refused to become another trophy on my shelf. Waiting until he had my full focused attention for five months until now. I thought our relationship was starting tonight but it had started months ago. I was just the last one to know.

We pulled up in front of the Grand Hyatt Hotel and Alec instructed the driver to stop there and paid him.

“We’re going here?” I said eyes wide. He just smiled and took my arm guiding me through the revolving doors. We rode the escalators up to the main lobby and Alec went to the desk and checked us in. I thought we would be going directly up to the hotel room but Alec is much more sophisticated than that and he led me to the restaurant and got us a table, a booth. He put me in first and this time he slid in right next to me. He ordered champagne and appetizers. He didn’t ask me what I wanted because he already knew my favorite things. All those months he had been paying attention. Some men would have been all over you but Alec just took my hand and raised it to his lips kissing my knuckles gently. “I’m glad you came” he said voice low, his eyes lifted to mine. I could see the glow of desire in them.

I don’t remember much of the meal, just laughter and talk about our ex’s and what they would think. I was becoming more relaxed and Alec decided it was time to go up to our room.

He still had not kissed me and I anticipated a gentle and slow getting to know each other, until the door of that hotel room shut…… I really do not know how to describe what happened next. I just know that he was so completely in charge that my participation was hardly necessary. My feet were off the floor the second we were through the door and I learned what a male ballet dancer actually does. I use to believe that those ballerinas did all the work but, now I see that they are in very expert hands. Hands that know how to pull a wrist or spin a waist, hands that direct and lead with confident strength taking the ballerina through the movements. I had never in all my life experienced anything that came even remotely close to this. It was like a beautiful, powerful, passionate dance. Shock and awe are two words that come to mind. When it was over, several hours later, we were on the floor. The bed had collapsed. I had pillows tucked all around my body as he had carefully arranged them and he had draped himself over me like a protective covering even under the blankets. I couldn’t sleep. I was trembling so hard my teeth were chattering and I was watching his beautiful face as he slept. I was ruined for life. No other man would stand a chance after this. I lay there thinking that this is the kind of man I would walk through fire for. What I didn’t know was that someday I would have to.

In the morning there was breakfast and lots of tender kissing then we dressed and he put me in a cab.
”Aren’t you coming with me?” I said.

“No, I have to go to California for two weeks.” He said.

“But…” I never finished the sentence as the cab pulled away from the curb and he was gone. I was left alone wondering what had happened and how this might change my life going forward. I went straight back to my apartment to soak in a hot tub and rest. It took me three days to recover.

Dating at the Nursing Home

noreply@blogger.com (lisa uncorked) — Tue, 01 Jun 2010 17:46:00 +0000

To find ones self in a mental institution is, I believe, the sorriest state that can be achieved on this earth outside of being burned at the stake, buried alive or on "the rack". Even those last three options were preferable as they were mercifully of shorter duration. I could not grasp that my own beautiful Alexander should end up in a place such as this. This was truly beyond my worst nightmare. I can honestly say that my preconceived ideas of what incarceration in one of these institutions would be like was not only correct but far worse and somewhat better than I had expected. Far worse because I had not anticipated that it would be exactly like jail and he would be treated more like a criminal than a patient and better because there would be those few human beings in the system that had compassion and courage and would try to help us the best they could.

The first 3 months as they attempted to stabilize his behavior and look for an appropriate placement I basically stayed in bed and howled like a wounded animal. I am sure I appeared much more like a candidate for the loony bin than Alec did.
Days went by as I alternated between visitation with Alec and stretching out on my couch like "Camille."

Finally in November they placed Alec in a state nursing home for those with neurological diseases. It was an hour away from me. He was only 50 years old and I was faced with having to date my husband again. Two date days a week, picking him up from the nursing home.

I was so heartbroken. I knew Alec was very unhappy about this but I knew I could no longer care for him alone. Despite my grief, I was determined that if we could not have the life we had dreamed of together that we would enjoy what we had. I would see to it that we had as much fun as possible and that he would always feel loved, important and a part of the family. With that in mind I drove the hour to the nursing home singing along cheerfully with the radio preparing myself to give my husband a pleasant and exciting afternoon.

To this end, I had purchased really nice youngish clothes for him. He is still a handsome man and I wanted to see him clean and well dressed as I had always done when he was home. The problem was that the nursing home kept misplacing them and putting on these horrific garments. One of the worst was this pair of, I am guessing here, beige, easy to diaper change, Sear’s Tough Skin, bad boy pants with snaps up both sides that kept coming undone. It was date day and I was NOT taking him out like that! I rummaged through his drawers and found not a single item that I had bought for him. So, I determined that the first stop we would make was to Target where we would purchase appropriate attire before going on to lunch and a walk in the park.

Well as luck would have it there were no parking spots close and I didn’t have my handicapped parking tag in the car. Now we had a bit to walk and Alec's gait is a bit like a drunken Frankenstein. Often I think my husband looks like Mel Gibson doing an impression of Tim Conway. People were staring at us and some were laughing but I kept my eyes focused forward on the door. Alec seemed to be really slowing down so I turned to look and to my horror his pants were down around his ankles and he was standing there in a pair of padded underwear with a diaper sticking out of the top! I had no idea that this atrocious combination was under the bad boy pants!

I think I screamed a little. Quickly I bent down and pulled up the ugly pants and began trying to deal with all the snaps. I am sure my face was a deep shade of aubergine.

As soon as we were safely in the store I stuck him in one of those carts you can drive and began instructing him so he could quickly move to the Men's department. All did not go well. After a rough start he seemed to get the hang of it but as we neared the Men’s department he hit the gas, so to speak, and turned off the wide aisle and into the clothing racks. Did you know those things are on wheels? I did not until that very minute as he picked up about 6 racks and sped towards the dressing rooms.

The two women in charge of the dressing rooms looked a bit stunned but I had no time for explanations as I was rapidly choosing items from the racks attached to Alec’s cart. I grabbed a pack of big boy underwear and helped Alec out of the cart and once again the snaps gave way and the pants hit the floor. I didn’t bother to redo them I simply ushered him into the first dressing room calling out the number “4” to the women at the counter who made no attempt to stop me. By this time I probably looked a bit wide-eyed and dangerous, and I was steering this lumbering half naked man in a diaper by a hunk of his sweatshirt.

When I felt that Alec was suitably clad I tore all the tickets off the clothes and walked him out to the cart. I told the girls at the desk that I would pay for the clothes at the register but I was under no circumstances putting those pants back on him. They were very sympathetic and completely agreed with me. In fact they helped me to untangle the racks and held them out of the way while I guided Alec back onto the wide aisle as if I were bringing and airplane to the runway.

The rest of our date went much better. We had a nice pizza lunch and went by the book store where I read to him and bought him a fancy coffee drink. We ended with a nice fresh air walk at a local park before I finally took him back to the nursing home. After settling him into a pair of clean pajamas and tucking him in for a nap I left. Alone in my car, I cried all the way back from the nursing home.

The Betrayal

noreply@blogger.com (lisa uncorked) — Wed, 19 May 2010 17:57:00 +0000

I know- it is long time between posts.. Somewhere in August when I had Alec committed to the State Mental Institution, I stopped breathing. Grieving is like living in a foreign country where nothing is familiar and no one speaks your language. I remember when I first moved to North Carolina I realized that being in a completely new environment forced you to live in the moment. No auto-pilot. Every where I went a vague anxiety accompanied me. The simplest tasks were difficult. Which grocery store to shop at? Which aisle was the coffee on? Who do I call to have the gutters cleaned? Surrounded by people I still felt isolated and alone. There was little of the adrenaline filled excitement of travel where a sense of adventure and exploration were balanced with the certainty of going home after the trip. This was home now, nothing would ever be the same.

So it is when you lose the great love of your life. Only Alec wasn't dead, dead would have been a blessing. He was the living dead and I was the unmarried, married woman- the not single, single mother. There would be none of the comfort of a funeral where friends and family would gather over casseroles to honor the life he had lived or console me in my loss.

I had dumped the most honorable loving person I had ever known into an open grave and the only consolation I could be offered was "You made the right decision, there was nothing else you could do." As if I had had my dog put to sleep.

I lost the game I had been fighting for so long. From the time Alec had begun to act strangely and gone from a confident successful man to a helpless child I had promised him and myself that I would keep this family together. That I would by sheer force of will continue on keeping things "normal". It had turned out to be a weird normal but still I had managed to persevere. We would celebrate the holidays, go on vacations, attend the children's functions, we would continue. I was not to be defeated. I promised him I would take care of him no matter what- and I failed. I don't like losing under any circumstances but the stakes were so high on this one. In my defense I had taken the only path available to me. I had had no advance warning so I could plan for the future of this disease. My earlier cries of alarm were dismissed by family and friends and the chaos and relentless consumption of assets this illness had caused left little to fight with as it pursued it's course of destruction.

The dream was over but the nightmare was only beginning. I have to tell you that from my experience mental health has not progressed much since the dark ages and the things I will share with you in some of my future blogs will be hard to read. By now you know that I am cheerful by nature and can find the humor in almost every situation but I have really struggled through this part of our journey. I only wanted to share the most uplifting parts, those that would encourage, but in order to be honest with those who must also endure through this disease and those others to whom life has given tough paths to follow, I feel I must tell it all. So get ready and get out your Kleenex.

My Hero

noreply@blogger.com (lisa uncorked) — Sun, 22 Nov 2009 16:55:00 +0000

It was barely 8am on Thanksgiving day and I padded into the kitchen, my bleary eyes focused on the hot pot of coffee waiting. Alec was standing at the counter his back to me his beautiful broad shoulders, long torso and tapered waist a silhouette in the light that streamed through the kitchen window above the sink. He smelled of soap and spicy cologne. A lock of his still damp, dark hair fell on to his forehead and he brushed it back with his forearm, his hands full of the butter and fresh herb paste he was stuffing under the skin of the turkey. I stood, leaning against the doorway to watch him as he finished his preparations and slipped the bird into the roaster and washed his hands.
"You're up early," I said. He turned and was across the kitchen in two steps his arm under my house coat and around my waist his free hand slipping inside my nightshirt to cup a breast. "Stop it, the kids!" I protested, giggling. "What was that this morning?" he growled into my neck, "you were so hot." "Me, I was asleep, I get credit for that?" His hand continued its wandering down the backside of my pjs. "Quit," I giggled and squirmed as he tried to kiss me on the mouth,"No, I have morning breath and I'm dirty." "I married you because you were dirty." he said quite seriously and continued on his mission undeterred until I acquiesced. "Now may I have some coffee?" I pleaded. "Okay, but I'll make it." he said. After I was seated comfortably at the table with a steaming cup of Italian dark roast he returned to the dinner preparations dumping a bag of fresh cranberries into a pot of water and measuring out the sugar for the sauce. I was happy. I was grateful. And I had this wonderful man to thank for it. How had I gotten so lucky to find someone like this? Handsome, kind, gentle and he could cook! Whenever you think while reading this blog, that I am some sort of hero to put up with what I have or care for Alec the way I have, remember this, he was my hero first.

The Sign

noreply@blogger.com (lisa uncorked) — Wed, 04 Nov 2009 00:53:00 +0000

“The events of this year proved to me that there is a point at which perseverance is no longer a virtue but at best an exercise in futility and at worst a means of suicide.” - me

I can’t believe it has been over a year since I posted on this blog. This was one of the most difficult years of my life. The events of this year proved to me that there is a point at which perseverance is no longer a virtue but at best an exercise in futility and at worst a means of suicide. What was I thinking? I know the exact point at which I decided that I “would have” Alec involuntarily committed, but that was way past when I “should have.” What were the signs? Yes, his ability to care for himself had declined, that had been happening for years but when had it slipped this far. It began with my laying out his clothes and toiletry items for him in order and he would go through the routines himself. Then I had had to make a little numbered list. A short time later, I had to modify some of his items offering him an electric shaver and toothbrush to make things easier. At some point he began to get stuck and I would have to give him verbal prompts to start him up again. It progressed to my having to finish his shaving and teeth. One day I found myself drying him off and dressing him, (it is really difficult to push on an adult man’s sock!). Eventually, I did his whole routine right down to underarm deodorant and blow-drying his hair. Even things I had been able to take him out for were gone, like having his haircut, so I had to learn to do these things also. Was this the sign?

OR, was it when nine-year-old Sophia and her BFF Jane posted signs on Alec’s bedroom door-

A really fierce DAD

Do Not come in for safety reasons

This DAD has been placed here for mental reasons so we ask you to not pet or stick your hand through the door

P.S. It might bite! Do Not touch DAD

A skull and cross bones was added at the bottom to help the illiterate or those Europeans that might wander in.

No this was far too subtle for me to pick up on.

His ability to feed himself was also declining. When I was still working full time I would prepare him a large breakfast, which he would eat and then I would leave an equally large lunch in the fridge for him to heat up later. I soon noticed that he was not getting the lunch out of the fridge so I made things that would not spoil and left them on the counter. In the afternoon I would clear them from the dining room table. Shortly after this I noticed he was eating his lunch at the counter, but not finishing it. Then the day came that I returned home from work late and he was very hungry, walking back and forth past his lunch unable to initiate the action of eating it. It was at this point I knew I couldn’t work anymore.

But his eating would become more troublesome yet. My girlfriend Lesley said that he ate like a Hobbit. It wasn’t long before he began getting me out of bed at 4am demanding what would come to be known as First Breakfast, which was always cereal fresh fruit and milk, cooking not being a possibility for me before I have had my coffee, followed by his bathing routine and Second Breakfast. This was a large cooked meal consisting of 3 eggs done is various manner generally with cheese and some veggie, served with toast, waffles, bisquits, pancakes or rolls of some sort with sausage or bacon. Then came Elevensies, a giant Greek yogurt with honey nuts and fruit, then Lunch, Supper and Dinner, equally large meals, prepared fresh- all of this by 4:30 in the afternoon. One day he began shoving so much food in his mouth at one time he couldn’t swallow it, so I began to cut the food in small pieces and sit with him monitoring how he ate it and making him pause once in a while to breathe. Slowly his ability to maneuver his food into his mouth was gone and so ended our lunches out. Now I had to actively feed him. But this relentless malevolent disease does not stop there, no- he stopped chewing and started choking and I had to go to a softer diet. Still this did not seem like a sign that I should throw in the towel. Was this the sign?

OR, maybe it was when Morgan called me at a wine tasting to get some help with Dad.

I was in a clients shop serving up a lovely cherry red, herbaceous pinot from the Central Coast of California and a chunky bold Cabernet from Napa. I was dressed professionally and quite a crowd had gathered to listen to my lively banter on food and wine possibilities when my cell phone began to buzz.

“Pardon me a moment,” I said to the guests, “Yes, Minnie, (my affectionate name for the 17year old)?”

“What? He did what? Yes. I’ll speak to him, put him on. Alec? Listen I want you to let Kara go right now and give the cookie dough back to the girls! Do you understand? They will give you some cookies when they are ready. And I don’t want you chasing them. No it is not time for the baby to go home. What did you do with the baby? No, no! Under no circumstances are you to lock the baby outside, is that clear? You already did? Go get him- wait, give the phone back to Morgan. Morgan? Did you know he put the baby out the front door? Well, go get him! Jane is in the closet? Which closet? Did he put her there? Oh, he just knocked her in because he is so clumsy- he took her juice box? Get her another one. Put him back on- Alec? I think it is time for you to go to bed. I will be home in an hour now you go on up to bed, ok? “

I turned back to my guests. “Sorry about that.” A handsome young Father who had come in to buy some wine with his two little girls in tow said, “Sounds like that Alec is a handful, kids can be challenging.”

“You have no idea,” I replied, and proceeded to pour myself a generous serving of the Cabernet. “Let’s taste this together shall we?”

No, again, this was too subtle for me. I still did not realize that I had lost control of the situation. To me denial was just a river in Egypt. I knew it wasn’t normal that I had to hide at night to sleep, eventually having to get in my car and drive down the block and sleep in the car. This worked quite well until the heat of the summer and the pesky mosquitoes made it impossible to rest and I had to start finding new hiding places in the house. I would lock myself in the art room curl up in my Papasan chair and try not to breathe too loud for fear he would find me. “Tap, tap, tap, Lisa? Tap, tap, tap, Lisa?’ on and on it would go until I could finally fall asleep despite the tapping.

All of these things I bore as a natural progression of his illness. He was still Alec to me and I loved him with all of my heart and wanted to make his life as happy as possible. And I wanted to keep our weird family together. It had become like the story of the boiling water and the frog. That if you put a frog in a pot of cool water and slowly begin to turn up the temperature it will boil to death without ever trying to jump out of the pot. But, I am not a frog, and I was reaching my boiling point. It began with the dragging.

Too Many Pets

noreply@blogger.com (lisa uncorked) — Wed, 19 Mar 2008 13:26:00 +0000

This incident took place 4 years ago when I was trying to sell my home in New York. The strain of working two jobs and caring for a family had left some areas of my life in chaos.

Too Many Pets

I don't really know how the pet situation got so out of control. It happened slowly at first and then like a video going viral on youtube, it seemed to explode over night. It is obvious that I have some emotional holes to fill due to the stress and grief of our situation. The relentless change this disease was bringing to our lives left me in a state of ongoing reorganization. I had been working two jobs for over a year and I just didn’t have time for everything. That being said, I truly believe another irritant helped to create this pearl of chaos and that was the “animal rights” lunatics at the ASPCA.

I had on three separate occasions, several years apart, and at different locations in Westchester County, attempted to adopt a kitten. Although I had three healthy and happy children, it was somehow determined that I was not responsible enough to own a cat. The third time was the worst. Attempting to adopt two white kittens, once again, I was turned down. This time because I had allowed a cat I owned to have a litter of kittens before having it fixed. I believed that raising a litter of kittens was a mandatory childhood rite of passage. All the kittens were wormed, given shots, and packed off to good homes with a bag of their favorite food. I believe I had handled the entire thing very responsibly. The ASPCA disagreed. I got into such a heated argument with the Forgotten Felines headmistress that she followed us into the parking lot.

“I would never allow someone like you to adopt one of my cats! I would never allow any of my cats to breed,” the deranged, animal worshiping nut was screaming.

“It's obvious you have a problem with breeding, maybe that's why you have 11 cats instead of any children or did you adopt all these cats because nobody else would sleep with you?”

“Get off my property,” her voice had lowered so I knew with satisfaction I had really gotten to her.

Oh, I'm leaving and you know where I'm going? I'm going to a puppy mill to buy an expensive pure bred dog!” She drew her breath in audibly so shocked that she couldn't speak. Despite the lack of cooperation from the ASPCA or maybe because of it, I found myself this particular morning the distraught owner of 12 cats, four dogs, two hamsters, one undersized, illegal turtle, and a tank of fish.

We loved our pets. When you don't have much money they are a great source of entertainment. Kittens in the Velcro stage, that age when they can run about but still cannot retract their nails, are especially fun. We spent the entire morning the day before playing with them. Alec would walk through the kitchen in his bathrobe and one of the kids would sneak up behind him and stick a kitten to his back, sort of like a kick me sign, and we would laugh and watch him walk around totally unaware he had a rider bobbing and swinging behind him. I stuck four kittens to the front of my bathrobe collar then strutted about the kitchen modeling for the kids.

“Our model Lisa is wearing the latest in Spring fashion the new classic trench coat from Armani with a lovely, kitten collar.” The girls howled with laughter.

My buff- colored Cocker Spaniel, Dr. Watson, came into the kitchen to see what all the excitement was about and we decided to see how long each of the kittens could ride him. My then 12 year old daughter, Morgan, would grab a kitten and set it on Watson's back right between his front shoulders where he couldn't reach and I would start the timer and just like the rodeo we would see how long each kitten could hang on. Watson would turn in circles, winding his way across the kitchen floor trying to grab the little tail of the kitten and the kitten would meow and hiss and hold on tighter. Later on, I would find Watson asleep with two little kittens curled up on top of him. They gave me so much pleasure, from watching the girls bathe with Greenie the turtle swimming around the tub or finding Rusty the hamster stretched out on a Barbie couch, in front of the Barbie TV, after his latest escape. They were always up to something funny.

However, I was not enjoying this morning. Last night our Papillon, Tippy, had run off and we had not been able to find her. She was a notorious tramp. I truly meant to have her fixed but money was so tight and it was over $500 for this operation. Usually she just ran out the back door and across the street to the neighbors. First, because there was an un-neutered male dog there, probably the ugliest dog I have ever seen, named “June”, by the BK's that lived there. We called them BK's, short for bad kids, because they were positively evil. They were always shooting someone with their BB guns or stealing or destroying property. Two, I believed we had one of those animal rights lunatics living in the house next door to them, and a feeder to boot. These are people who feed every animal that comes on their property so it is only natural that these animals keep coming back to their doors. I hated feeders.

The Feeder had returned our dog several times. Tippy always went straight to her house. Mind you we weren't letting Tippy out. We had children and children are not careful about the closing of doors. Tippy would simply dive out after my youngest, and she would never notice. But this upset my neighbor terribly. It wasn't that she didn't want the dog on her property; it was just that she was worried it was going to be hit by a car and killed. It turns out that she had a dog that had met that end, and seeing how she had no children this dog was like a child to her and her guilt drove her to protect dogs who might be similarly endangered. At first I sympathized with her and felt very bad and I truly tried to keep the dog in the house but I felt it was cruel to have her tied to a door in the house all day long.

The children were off to school and I was considering my shower and how to go about finding my dog when out the living room window I see the Animal Control truck pulling up in front of the Feeders house! I knew immediately that while I was running up and down the street last night calling out “Tippy! Tippy!” distressed and worried, she had been sitting smugly behind her Walmart curtains watching my unease and planning how she was going to teach me a lesson. There was no time for a shower. I was simply going to have to head out the door in my housecoat, hair sticking up, and no makeup.

As I rushed to the door I noticed a scurrying motion in my peripheral vision. I looked again and there was Smokey, one of our hamsters, who must have escaped this morning. Glancing around I noticed two of our 12 cats dozing on the sofa, all excellent mousers, and decided I’d better catch him and put him back in the cage before going outside to deal with the Animal Police. I bent down and grabbed the errant little rodent from behind, but he was not pleased and did not recognize this as a rescue attempt, instead he bit down with his sharp teeth and hung on like a Pit Bull Terrier.

The reaction I had was automatic and not intentional. I brought up my arm in a wide arc like someone performing a Kung Fu motion, fully extending it with a sharp stop at the end. Smokey's grip was no match for the power of this maneuver and he let go sailing across the living room and smacking into the wall with an audible “thunk.” The force of the impact propelled him forward and he dropped with a splash into the fish tank. Fish scattered instantaneously to the sides of the tank. I watched, in horror, unable to move, as he began swimming up from the bottom of the tank. When he reached the surface I turned to look out the window and saw that the Animal Cop now had my little Tippy in his hands and was heading towards his truck. I looked back at the tank and thought “How long can a hamster tread water?"

Not knowing the answer I ran across the room, grabbed the fish net and plunged it in the tank scooping up the hapless creature. I dropped it into my other hand. It did not bite this time, which proved to me that hamsters could be trained, although the means seem a bit extreme. I ran straight out the front door arms raised yelling “That’s my dog! Stop! That’s my dog!” all the while gesturing wildly with a wet hamster. Four cats had followed me out the door, one I nearly fell over. Now I am yelling at my neighbor, cats running in and out of my legs, “How dare you call Animal Control on me!” I was shaking my fist at her. When I realized I still had the soggy little hamster in it and I quickly shoved him into my housecoat pocket.

The animal control officer headed up my driveway and returned Tippy to me. He seemed truly sorry for the situation. “Try to keep the dog inside,” he said. We know about her, she calls all the time. “ I have been looking for this dog all night, I was very distressed, and she had it the whole time.” “Well, he said, she’s a bit of a lunatic.”

The Circus

noreply@blogger.com (lisa uncorked) — Tue, 19 Feb 2008 15:36:00 +0000

I love the circus. It's loud and colorful and exciting. When I was younger I wanted to run away and join the circus. I didn't really have an interest in doing any of the acts, I just wanted the clothes. If I did have an act, it would be the dog act, then I could dress up the dogs in fabulous outfits too.

The Ringling Bros. Barnum and Bailey Circus came to Raleigh and I took the whole family. Now, if you have been following my blog at all, you know how sick my husband is. You would think that I would remember this and make accomodations for it. But I don't. I know Alec loves the circus and I buy regular tickets and off we go; accept we don't.

The first adjustment I should have made was an earlier leave time. I did not. Here's how things went.

"Ok, everyone in the car!" (you may have noted by now that in many of my stories, this is how the dialog begins.) Everyone files out happily to the car. Ofcourse not. Minnie is not happy. She is burdened with mounds of homework and is having an anxiety attack.

"How long is this thing?Do you want me to fail Chemistry?"

"Hours and Hours. Don't worry about Chemistry. If you flunk out you can always wash elephants for a living. Think of this as career research. You should be excited! Other children would be happy and grateful if their parent bought circus tickets."

"In the middle of the school week? Didn't they have any weekend tickets available?"

"Weekends are too crowded; weekends are for conformists."

"Weekends are for people who work."

"Pfft."

"Fine, I'll just stay up all night, then I have to take that cold bus so early in the morning.."

"Ok, I'll drive you to school tomorrow, you win. You are so not fair."

"I didn't buy circus tickets for a Thursday night during the school year."

"Pfft."

"I'm happy and grateful ," says little Sophia.

"Yes you are, and you are my favorite child tonight." Morgan rolls her eyes "Whatever.."

"Where's Dad?" Dylan says as we settle in to the car. I gaze towards the door.

"I thought he was coming," I said. We wait. I see Alec come out the door...then go back in.

"Uh oh, I better see what's keeping him." As I come in the front door he heads up the stairs. He is not wearing shoes. I head up after him. "Honey, lets put your shoes on. We need to leave now. I give him his shoes and guide him to the edge of the bed helping him to sit down. For a long time it has been kind of like living with Mr. Rogers in regards to his sneakers and sweater. Deciding when to wear or not wear the sneakers and the sweater is a big deal, followed by that slow routine just like in Mr. Roger's Neighborhood. In my mind I hear "Can you say, hurry the f___ up?" But I stand, outwardly patient and calm. "Ready?" I take his hand and lead him towards the stairs. I let go and walk quickly down the stairs only to find he has gone back up and into the bedroom. "Alec? Honey, did you forget something?" He comes back out and starts once more down the steps. And then he turns around and goes back up. "Alec, we need to leave, can I help you with something?" He comes back out of the room. This time he has no shirt on. "Alec, wait there." Realizing I will need backup, I head out to the car to get Dylan.

"Dee, I need you. I can't get Daddy out of the house."

"Why are you bringing him?"

"Because he is your father and a part of this family and he loves the circus and needs to be with us. Now just get out of the car and give me a hand!"

Dee and I stand at the bottom of the stairs watching Alec, walking shirtless, up and down the hall.

"Ok, I'll go up you stay down here." I lead Alec back into the bedroom explaining as we go how we need to put our shirt and sweater on and leave so we make the circus on time. I help him back into his shirt and go into the closet to rumage around for his sweater, which he hung up again. I emerge to find his shoes off. One more time through the sweater and sneaker routine and I grip him firmly by the arms and direct him down the steps. Halfway down he turns around and I block his way. "Nope, down you go." He turns and gets to the bottom of the stairs this time before turning around. Back up he comes. But I have moved halfway down and block his return. I look over at Dylan by the door and begin to get a fit of giggles. "Ok Dee, this time when he gets close to you, grab his arm get him out the door, and close it fast." This works! He is out of the house. I lean against the stair way laughing at how absurd this is and then the tears start coming. "No, I will not cry! I will not, I am going to the circus with my family!" and out I go. I see with satisfaction that every family member is safely inside the car secured in seatbelts.

Arriving at the RBC Center we are directed to a parking spot no where near the entrance. I have forgotton that we have a handicapped parking tag. Dylan is incredulous. "You park us right next to the entrance at the health club when Dad isn't with us, but in the back of the parking lot at the circus when he is?" You must see, I just don't think of us as handicapped, it hasn't sunk in. I think of the tag as a perk. I believe that after all I have had to endure I deserve the closest spot to Walmart. We slowly, and I do mean slowly, make our way to the entrance, the children walking way ahead and glancing back only when I yell for them to slow down.

Inside the atmosphere is charged with excitement and the smells of cotton candy and hot dogs. Brightly colored booths are everywhere selling toys that light up and spin, stuffed tigers, and elephants. We get to our section and I realize I have made another error in judgement. The stairs down to our seats are steep and narrow with only an occasional handrail for support. I should have taken this into consideration when ordering tickets. I didn't.

The clowns are already entertaining the crowds while everyone gets seated so the noise level is high. Alec freezes. His gait, just on flat surfaces, is awkward and uncoordinated. Stairs are much more challenging. I stand next to him trying to steady him but knowing that if he falls I'm going with him, cause there ain't no way I can hang on to him. We are on the second level and I can imagine us falling and tumbling down a long way before we come to a rest against the balcony rail. I can feel everyone's eyes on us as we slowly make our way down, me cautioning and speaking quietly to Alec the whole time. The children are urging us too hurry up and I am shooting them my slitty, evil eye look.

Finally we are seated. Even though I realize many people are staring at us because of Alec's strange movements and mannerisms, I am happy. We relax into our seats and for the next two hours are thoroughly entertained and transported into the intriguing world of the circus. Close to the end was the Human Cannon Ball couple. Yes, they were married, human cannon balls! They shot out of the same cannon! After the Circus Master quieted the audience, there was a drum roll and BOOM- out they shot all the way across three rings to land on their backs on the big air-filled mattresses. They leaped up immediately, sparkling capes flying behind them as hand in hand they ran to the center ring and bowed in unison to the crowds. It was inspiring. I turned to Alec and said, "Honey, why don't we do that anymore?" He turned to me and then he laughed out loud. I started laughing too and we held hands and exchanged that look that only two people joined at the soul can share.

On Being Overwhelmed

noreply@blogger.com (lisa uncorked) — Sat, 02 Feb 2008 14:36:00 +0000

If I had to name the biggest obstacle I have to overcome it would be the condition of consistently feeling overwhelmed. I have good reason to fell overwhelmed. I have two teenagers, one 7 year old, three dogs ( all purebreds, but that is a different story), one cat, one fish ( that I have replaced five times) and a husband who has full blown Huntington's dementia in his forties. I own my own home and up until July of this year I had a full time job. Surely a feeling of being constantly swamped with too many conflicting activities and responsibilities is a daily fact of my life. But there is another reason. My brain is simply to complex for the input of modern society. Simply put, I think about each thing I do too much.

For example, a month or so ago, I attended an all day scrap booking meet-up. Scrapbooking is not a simple hobby to pick up and take to someone’s home, like say knitting. Getting ready and packing my “stuff” to go took me three full hours. You must understand that I own enough art supplies that if I were to add up all the receipts, I could make a good down payment on a house. I will spare you the explanation for how I decided what to take with me because anyone may have been daunted with so many choices. No, what really threw me off was that the hostess asked that everyone bring a “snack to share” Three little words that would ruin my entire morning. In my defense I did attempt to go to the local supermarket, less than one-quarter mile from my home, and on the way to the meet-up, to pick up a simple “snack to share”. I took a small basket and wheeled it through the store for 10 minutes looking for something appropriate.

I live in North Carolina and folks are polite here and even though the cashier looked exactly like a bored basset hound she managed to greet me with a somewhat less than enthusiastic “Good Morning” on the way in. I wheeled straight to the dairy section. The cheeses looked mundane and machine manufactured and many were labeled “cheese food” which translated means, “I don't even contain any milk.” I took a look at dips, the contents were extremely long lists of ingredients, such as, hydrolyzed corn, silicon dioxide, disodium inosinate, for heavens sake spell check doesn't even know what these are! No, I don't want those. All the baked goods contained partially hydrogenated fats and high fructose corn syrup, no. I came up to the counter with an empty basket and asked for two packs of cigarettes. Please don't bother to write and tell me that there is a misconnection in someone who wouldn't eat high fructose corn syrup but would smoke. The cashier regarded me warily and if I were still in New York she probably would have said something about the empty basket, but as I said, folks are polite here.
Back in the car and ten minutes in the opposite direction of the Meet -Up, I was in Trader Joe's, my favorite food shop, happily filling my cart and then chatting with the cashier about the delicious and healthy food I had gathered.

I arrived at the meet-up on time; I am always on time, with a full bag of groceries. The hostess was surprised when she saw my bag, undaunted, I went directly to the kitchen counter plopped down the bag and requested a cutting board, sharp knife, pair of scissors, one large platter, several small bowls, and a bread basket. Snipping open a package of Italian Proscuitto I began to lovingly fold each long slice and place it on the large, white, oval platter she had given me. Next I opened the triple crème Brie Cheese and began to make perfect slices so it would be easy for people to eat.

About this time another guest arrived. She came in and placed her box of Krispy Krème glazed doughnuts on the counter and went into the main room to set up her crafting area. In the mean time, I was opening up the truly magnificent quality Gouda I had brought that had just the right amount of buttery texture and nutty flavor, which I sliced into pieces the exact size of the Brie. I was filling two small clear glass bowls, one with wine cured, Greek, Kalamata, pitted olives, and the other with an antipasto salad of roasted vine tomatoes, fresh mozzarella cheese, extra virgin olive oil, artichoke hearts, oregano, roasted garlic and sea salt, when more guests arrived, one with a store bought veggie platter and dip and one with a store bought fruit platter.

Someone brought a bag of mixed bagels. All placed their items on the table and went directly into the crafting area. I was now slicing a beautiful French baguette into uniform slices cut on an angle and heating up the spinach and artichoke dip. Still more guests coming in and leaving bags of chips and generic sodas on the table and heading into the crafting area. I was just putting out a box of whole grain, preservative and hydrogenated fat free crackers for the dip.

As the last of the guests arrived and everyone was now in the main room beginning their crafting I was opening up a large container of milk chocolate and dark chocolate covered almonds and a container of crispy, chewy, apricot and pecan glazed gourmet popcorn. Finally, after placing a bottle of Mojito Lime and Spearmint sparkling water on the table I was ready to head back to the car and get my scrapbooking supplies. Looking over the spread I had prepared I felt a little ostentatious. Everyone seemed to enjoy it though and the hostess found she didn't need to make us lunch.

Why do I do this? I can assure you I am not trying to impress anyone, I just can't keep from over complicating the issue. My thinking goes something like this. I'll just get some good cheese and crackers. As I am choosing cheese I think “Maybe someone won't like Brie so I better have a contrasting semi-soft textured milder cheese as well. Oh, look fresh baguettes! But is one enough? I better get some crackers too. Gee, it would be nice to have some fresh greens with this as a garnish and something a little salty. Ummm, the olives look good. I should bring something sweet, everyone wants something a little sweet..... and, on and on it goes. $50 dollars later I have a “snack to share.”

This morning, once again, I get up, and like an alcoholic after a binge, I resolve not to be so complicated but to just get on with the day. Stop over thinking, stop considering all the choices. Do things simply. I make my husbands breakfast. Let's see, I'll just make him some nice eggs and toast. That's easy! I crack three cage free, omega eggs into the pan. He really needs more calories, humm, I know, a handful of this nice shredded cheese mix will be good, but what about veggies, ah, I have some spicy mixed baby greens and I'll just saute some of those little grape tomatoes..... Fifteen minutes later He has a fresh fruit cup, omelet, shade grown Sumatra coffee, blueberry juice and two slices of Ezekiel bread with French butter. I have forgotten what I needed to do next. I am overwhelmed. Oh well, there's always tomorrow.

The Hoop-a-thon

noreply@blogger.com (lisa uncorked) — Fri, 01 Feb 2008 11:44:00 +0000

(Below is another sample chapter from my book. This took place shortly after Alec was officially diagnosed. I was in the grieving process, a process which is never ending with this disease. This was my first function as a member of Huntington's Disease Society of America.)

Hoop-a-thon

It was much colder than I expected and I wasn't dressed for it. I have never understood my reluctance to put on a coat. I feel the same about carrying a purse. I will shove everything into pockets even going to the extent of making extra pockets a consideration when purchasing clothing, (Yes, its a lovely evening gown but it doesn't have anywhere to put my compact.) I was sorry I hadn't put one on this particular morning, because the wind was whipping my legs and my tears were freezing onto my eyelashes.
It had been one long pity party morning for me. I put on make-up; it slid off my face and onto the front of my shirt. I dried my wet face, changed my shirt and reapplied, only to have it then drip into the sink while I stood there trying to work up my courage to attend the day’s event. I cleaned my face and decided to go without. I didn't really care how I looked. At that moment I didn't really care about anything except letting God know how really disappointed I was in him. My mind was sending up a continuous string of angry, hopeless thoughts.
“Ok, let's go. Come on everyone in the car.” I ordered as I handed my six year old, Sophia her jacket
“Alec, are you coming?”
“I think I'll pass.”
I sighed, “Of course you will.” and my eyes began leaking again.
“It's o.k. Mom?”
This comment came from my eldest daughter Morgan who had bravely volunteered to sacrifice her pride to shoot baskets for us today. Morgan is a truly brilliant, loving, devoted child, who is also truly not athletic, so I was touched by her willingness to represent our family at the Huntington's Disease Hoop-a-thon. My son, Dylan, was supposed to shoot for us but he had to begin his new job at Trader Joe's that morning and Morgan was taking his place.
In the car the two girls immediately began to bicker. Morgan didn't like Sophia's hair and was attempting to fix it. Sophia was having no part of it. I was experiencing the beginning of a panic attack and while foursquare breathing, I stuck my hand in the glove box, rummaging around for my bottle of “Dr. Bach's Rescue Remedy.” I don't respond well to conventional medications. My physician had tried to convince me to take some sort of anti depressant, anti anxiety medication, but I declined. The Rescue Remedy was a combination of five flower extracts said to calm anxiety but I had a suspicion that the 60% French brandy they were contained in was the active ingredient. I took four drops under my tongue.

“Just let me get it out of your eyes!”
“No, I am a kid and I don't have to be a fashion girl every time I go out.”
“Well, you look ugly.” Sophia begins to cry. “Mom, she said I look ugly!”
“You look beautiful Sophia, Morgan leave her alone, pleeaaassse!”
“ I'll just put it in a pony tail, you like ponytails.”
I was ignored. I took four more drops, then considered discarding the dropper and just tipping back the bottle but decided that arriving someplace before noon with brandy on my breath might cause a scandal. I reached back into the glove box and produced a spray bottle of essential oils and began energizing my space.

“Ewwww!” both girls chimed. “Mom please, stop.”

Finally we arrived at Cardinal Gibbons Catholic High School, and here I stood in the parking lot, frozen tears, no makeup, reeking of essential oils and French brandy, herding the girls out of the car and into the gymnasium.
The gym is large and modern in cool tones of green and gray. There are six regulation size baskets and around each are groups of teens and adults shooting baskets one after the other from the foul line. John Canning, the President of our local chapter of HDSA, and his wife are standing behind the table welcoming people as they come in. Mary Edmondson, John's sister comes over to greet us. I don't know what she says to us. My face is hot and my ears are buzzing, I feel a bit faint. This is not a club I want to belong to. We get our Hoop-a-thon tee shirts and I sign Morgan up for the Women’s team. Sophia is very excited.
“I want to shoot, Mommy.”
“Sophia this is for big kids and grown ups."
“I can shoot. I'm good at basketball.”
I look down at her tiny frame. “Sophia, look at the size of those boys,” I say pointing to the Irish Catholic High School basketball team that is practicing in front of us. “You don't reach up to their knees.”
“ I want to help Daddy. I want to shoot,” she pouts.
“Come on let's watch Morgan shoot,” I say trying to distract her.
I send Sophia over to the snack table to see if I can get her mind off playing basketball by bribing her with a donut. It works for the moment and gives me a chance to sit and look around.
It is obvious by the dance like, ceaseless movement by some in the crowd that they are victims of this disease. I think of my handsome husband sitting at home, probably in front of the TV watching the weather with the sound turned off, for hours. I feel very lonely and can feel my face beginning to contort into the ugly cry. I want to be supportive to Morgan and try to be a bit of fun so I take a deep breath and reach into my pocket, producing a bottle of Wild Rose extract, which the bottle informs me, “helps you feel interest and joy in life when you feel apathetic and resigned to the situation you are in.” I take four drops.
It is time for Morgan to shoot. Each person gets a total of three minutes to shoot as many baskets as they can from the foul line. Sponsors pay for each basket they get in. This event earns quite a bit of money for HDSA, the Huntington's Disease Society of America, to help fund research for a cure. Morgan is nervous but determined to do her best. The buzzer sounds and Morgan shoots. Well, she sort of flings the ball from the front of her chest while simultaneously kicking her right foot up behind her and I can't help but think of Sandra Dee kissing a beau in those old black and white movies. After three minutes Morgan sunk a total of three baskets. I cheer wildly. Everyone else pats her and tells her she did fine.

Sophia huffs, “I can do better than that. I want to shoot!” One of the women on the team says, “We'll sponsor her if she wants to shoot. She can shoot on the women’s team.” I am worried she will be disappointed but one look at her excited little face and I give in.
Up to the foul line she goes and takes a couple of practice shots that don't go anywhere near the basket. She is not deterred. The buzzer sounds for the start of her three minutes. She squats into the granny position and heaves the ball towards the basket. It goes in and we all cheer. She squats again and in it goes! Then again and again and they all keep swooshing into the basket. She looks like a small mechanical wind up monkey. Occasionally, she misses one but the rest head straight and true towards the basket. I am crying again but this time it because I am laughing so hard. Morgan's mouth is opened so wide you could fit a bowling ball in it and her face is bright red. People are coming down out of the bleachers and they are counting the baskets out loud- 12, 13, 14, 15, 16 – A tall man with a thick southern accent comes over and whispers to Morgan, “You ought to be ashamed of yourself, you know your sister will have bragging rights on this for twenty years.” 17, 18, 19- then the buzzer sounds. Nineteen baskets in three minutes! Everybody is cheering and giving Sophia high fives. Her face is lit up like Las Vegas. I give her a big hug. “Wow!” I said, “You sure can shoot!”
We went to the bleachers and sat there laughing and accepting congratulations when Mary told us that Sophia's name was being called over the loud speaker. She took off running to the awards table in the center court where she was given a trophy. She had won the women’s division! Cameras flashed as pictures were taken of her with the President of HDSA. She stood there with her Hoop-a-thon shirt hanging down past her knees holding her trophy up high and I was reminded of the story of David and Goliath. I had been feeling hopeless and defeated with little fight left in me and this small child never looked at the size of the baskets or the height of the players. She just wanted to help her daddy get well, and shoot some baskets. My two daughters taught me an important lesson that day. I sent up a prayer of thanks to God, maybe he wasn't all bad.

The blind poodle

noreply@blogger.com (lisa uncorked) — Wed, 30 Jan 2008 15:11:00 +0000

The blind toy poodle is annoying me. It is 5 am and I am standing bleary eyed on my back deck watching as my three dogs run out into our large fenced in back yard for their morning duties. The blind poodle safely makes his way down the 8 steps to the yard following the other two- but there it ends. Dashing and bounding across the yard he bangs head first into a tree. For the next thirty seconds he riccochets from tree to tree and it is like watching a sick game of pinball with the sound turned off. Finally he finds a spot in the center of the lawn and lifts his leg high to pee on "nothing". I can't help but think,"You just found six trees!" I shouldn't be so upset but this is so like the rest of my life. Why do the ones I love have to be broken in some weird way?

I think back to when we first arrived at our new home here in North Carolina. At the time my children were 16,13 and 5. It was our first day in our new home and I was taking the children out to explore the town. Alec had opted to stay home and rest. I had forgotten a book that I needed to return to the store and I asked Alec to retrieve it from the house for me. Opening the front door he began to skip, leap, and bound across our front lawn extending his hand with the book in it through the open car window with a flourish.... From the back seat I hear my 16 year old say, "Is he skipping?" I can also feel the weight of the 13 yr olds head as it hits the back of my seat, she is muttering "We will never have any friends;they will all think that my father is crazy." To understand this you should know that before this disease my husband was a dancer and performed in the "Nutcracker" every year with the local Ballet company. But the skipping thing was new. I had noticed it first at the gas station when I asked him to go in and get some drinks. He skipped, both ways. When Alec had returned to the house I realized I had also forgotten my purse. I decided not to call Alec, I went back in myself. On the way out the door I was suddenly hit with an urge and I skipped, leaped, and bounded over the front lawn and opened the car door with a flourish. Both teens looked astonished, "What are you doing?" they chorused. " Now the neighbors won't think your father is crazy, they will just think that our family is very happy."

This morning I am not in the mood to see the humor in this. I call the dogs back in and stand there on the deck sipping my coffee as they arrive. Ofcourse, the blind poodle is last. My papillon always helps him to find the steps by standing at the top barking and scratching at the top stair. She is my only female dog and she is a natural caretaker. My male cocker spaniel sits obediently at the back door his mind on his morning biscuit. A true male. Most times the poodle guided by the papillon makes it up the stairs safely, but the last few times he hasn't. He starts out well at the bottom cautiously taking the first two stairs then all of a sudden he bursts up the last few and falls off the top one. The first time it happened I sloshed coffee all over myself. I thought for sure he had broken his neck, but no, he was fine and made a second attempt which was successful. But I realize this morning that it is time for me to start walking down the stairs to get him. He won't be able to do this for himself anymore. I am sad and it makes me cry and cry. Way out of proportion to the circumstance. It is another loss. But it is just like the losses I am going through with Alec as each day goes by and I lose a little bit more of him. One by one the things that he could once do are stripped away and one by one I pick them up and grieve each passing.

Job Shadowing

noreply@blogger.com (lisa uncorked) — Sat, 26 Jan 2008 21:56:00 +0000

My husband follows me where ever I go. Now those of you whose husbands do not have HD probably think I mean that he tags along wanting to be with me or that jealous and possessive he actually gets in his car and stalks me when I leave the house. That is not what I mean. He can no longer drive much less stalk. He follows me from room to room in our house staying a few feet from me at all times. For example, my computer was in the shop all last week so I went to our 15 year old daughter's room to check my e-mail. He followed me into the room and simply stood there staring at me he whole time I was on line. He does not say a word. This was more than 30 minutes. I finally tried to distract him by asking him to please take Morgan's garbage out. This made things worse because he began digging through her garbage deciding that this or that could not be thrown away because it had to go in a different bag or to the recycle bin or maybe we could use it. Morgan returned to her room to begin her homework and saw her father digging through her garbage bag. She looked at me making eyes and hand gestures that pleaded for me to please get him out of there. E-mail time over.

When I was working I just had to tolerate it. Many times I would have to work from home and for the hours I would sit at my desk working on the computer or making phone calls he would sit directly in front of me, not 3 feet away, and silently watch me, sometimes offering helpful comments. "Did you return Gary's call?" "Don't forget to place the order for Peg." Living through me. Participating in life the only way he has left. Sometimes I feel like a medium. Don't get me wrong, I love this man. When we were first married I hated to be away from him. If I had to leave on a business trip I would take one of his shirts with me to sleep in, so I could wrap myself in the smell of him. But this is just weird and sad. I feel so guilty when I finally lead him down stairs and put him in front of the tv and ask him to stay there awhile. Guilty that I am still healthy and can participate in life. So sad because the person I wanted the most to spend my life with can't join me, but just stands silently in my shadow.

Lisa vs. Social Security

noreply@blogger.com (lisa uncorked) — Thu, 17 Jan 2008 14:42:00 +0000

(Below is a sample chapter from the book I am writing. It gives you a quick idea of what life is like for me now. I would enjoy hearing your comments.)

Alec has been pacing back and forth on the same 15 feet of floor for over four hours now. He doesn't speak. He hasn't bathed in a week. Or changed his clothes. His nails are long and his greasy hair is plastered to his head. The people from hospice arrived dutifully each morning to bathe him, but he is agitated. I would be too if I thought my wife was taking me to be executed.
“Alec, honey, we are just going to the Social Security office to sign the children up for benefits.” I neglect to mention that I also need him to sign papers to make me his designated payee, as this would give me motive.
“Come on now, I know you don't want to shower but let's at least change your shirt.” I try to pull his shirt over his head but he pushes me away and continues pacing. I talk to him a bit more and try again and this time he does take the shirt off. I turn to get the clean one and he puts the dirty one back on. I sit down heavily on the bed. “Fine, we shall go as we are.” I get everything ready to go so I don't have to run back for anything. I realize I may have trouble getting him in the car.
“Ok, it's time to leave, let's get in the car.”
“No.”
“Alec, for Pete sakes, I am not having you executed. Where did you get such a crazy idea?”
Suddenly he speaks. He hasn't said much more than “No” for several days now, so I sit and listen.
“You are writing my obituary.”
“What?”
“With that woman.” He speaks with difficulty, his throat hoarse, a combination of the movement disorder, poor coordination and difficulty finding the right words.
“The woman from adult care? “ I realize how he came to this conclusion. First there is the presence of hospice in the house; then there is the “no resuscitate” notice posted on the refrigerator, and the woman from adult care I was hiring so there would be some one with him when I went back to work. She had asked questions like, what did he do when he was working, what were his parents names, what hobbies did he have. All questions to help his caregiver have things to talk about and do with him while they were there. But, because of his dementia, he put the clues together and comes up with obituary. It wasn't that I hadn't spoken to him of these things but in his state he just couldn't understand. I tried explaining it to him again but it was useless.

“Look, we have to go now. We have an appointment.” I take his hand and begin guiding him towards the stairs.
“No!”
“Alec, we need this money to care for the children. Don't you want to care for the children? You may have this disease but you still have responsibilities to your children.” He heads back into the bedroom to wear a hole in our floor and I think if he keeps this up in one week he'll fall right through to the family room below. I sit down on the stairs. I think, that's not so bad he'll pace back and forth, wear a hole in the floor, fall through to his death, and of course they won't resuscitate, (see note on fridge), then this will all be over and I will place a personal ad on eharmony.com and meet a wonderful man and remarry and honeymoon in Bermuda... Suddenly Alec appears at the top of the stairs.
“Ok, he says.” He has had a sudden change in heart.
“Ok?”
“Let's go.” he says and out we went. He got right into the car and the trip out to Raleigh was uneventful.

We had an appointment, so we only had to wait one hour before we got in. Alec sat quietly the whole time, evidently resigned to his fate. Our interview was with one of the most starched; buttoned up women I have ever seen. She looked like one of my southern aunts in the sixties. Her hair had that sort of pin-curled look carefully teased into place and her side burns were little semi-circles that looked to be locked in front of her ears with Dippity Do. She wore a white blouse, buttoned all the way to the top, and a pink cardigan with tiny white pearl buttons. Her desk was immaculate. She did not smile nor did she ask us what we were here for she just sat and waited for me to speak while looking us both up and down. The expression on her face made me feel somehow dirty.
I explain that we are here to apply for the children's benefits now that Alec had been approved and that I would like to be made designated payee for my husband.
“This appointment is for Mr. Brough, I will need to speak with him.” she explains with some irritation. She pronounces our name “bro”, which annoys me, it is pronounced “bruff” like rough with a B in front, I explain with some irritation.
“ This is my husband Alec,” I say glancing at Alec whose eyes are wide with fright and his nervousness is causing more movement in his body than normal.
“We let the clients speak for themselves,” she says, “It is Mr. Brough's decision if he would like to have you as his designated payee.” I realize with horror that her opinion is that I am not taking good care of my obviously very sick husband. I look down at my own neat clothing and painted nails and then at Alec’s unkempt appearance and it dawns on me that the most likely scenario in her mind is that I am slowly poisoning him for his Social Security check.
“He has Huntington's Disease,” I say as if that makes everything clear.
“We assume that our clients can handle their own financial affairs unless they decide they would like someone else to do it for them.”
“I understand that, but Alec has dementia and he hasn't been able to handle any financial affairs in years and while he was just granted benefits he hasn't worked in seven years or driven in four and I have full care of him and our three children.” She turns to Alec, dismissing me completely.
“What is your full name?”
“Alexander Brough.” he responds, slowly and with difficulty.
“How old are you?”
“47”
“ What is your mother's maiden name?”
“Triandaphilodus.” Even I am impressed that he came out with his mothers name so quickly.
She turns to me.
“He seems perfectly competent to me, as long as a client can answer questions for himself we consider him competent.” I know of course that he can't even choose to make a sandwich much less handle bank accounts or pay bills.
“Alec do you want me to be your designated payee? You know, to pay our bills and take care of the house?” He is silent once again. “Alec if you don't make me your payee you have to make the phone calls to Social Security yourself and handle the bank accounts and you know you can't do that right now.” He does not respond. He has become a complete mute.
“Mr. Brough, let me explain what rights you will be signing away if you sign the papers making her your payee.” She then tells my husband, who believes that I am trying to have him killed, that he will not have any access to the money, he will not be able to make any decisions about how it is spent, nor will he be able to put it in a bank account with his name on it.
“Is this what you want?” she finishes. He looks at me as if he is genuinely scared to death of me then slowly shakes his head no. I realize that I am losing this argument and the utter frustration I feel at trying to care for someone with this disease and our children all alone just overwhelms me. I begin to cry and feel angry all at the same time. I turn to Aunt Bee and I begin a monolog about the last 13 years, about our wonderful marriage, how much I love this man and how long it took to get a diagnosis of this horrible illness, about losing all of our savings and selling our house and fleeing from New York all the time with my husband believing that there was nothing wrong with him and that his ex employer and I had conspired to keep him out of the wine industry. About Hospice and the need to get back to work and about not being able to get him to bathe for a week about our children and about how sick I was of telling this story! While I was telling her all of this her face was screwed up in a pinched sort of way. Seeing that I had not quite convinced her I turned to Alec.
“Alec, do you know where we are?”
“Social Security,” he said.
“And why are we here?”
“To have me arrested,” he said.
I turned back to Aunt Bee again, “I rest my case.”
Her eyes showed alarm and then her expression seemed to soften a bit.
“Well, I'll draw up the papers, but it is still his decision whether he signs or not.” When she had finished, she pushed the papers across to Alec and handed him the pen.
“Alec, honey, please sign the papers,” I pleaded. He picked up the pen hesitated looking back and forth from Aunt Bee to me, then finally he scribbled down what sort of resembled a signature. It was over.

I led him out side and just as we got to the curb to cross the parking lot to our car he halted.
“We have to go back,” he said.
“No we're finished Alec, we're going home now.”
“No, I have to stay.”
“Why do you think we have to stay honey?”
“ We sold the children.”
“What?” My tone was flat. I stood there with a blank stare trying to get my mind to grip this new development.
“I signed the papers and sold the children. I have to stay to save the children.”
I tried grabbing his arm and pulling while telling him that was ridiculous and we needed to go home. Alec pulls away from me and begins heading towards the door again. From the corner of my eye, I notice the security officer standing and moving towards the window, his brow beginning to wrinkle with concern, and I realize things could get a lot worse if some walrus- like, gun- toting official comes out the door towards Alec. This will only reinforce his paranoia.
I have to say that this is one of those times that I just had to stop and marvel at how truly crazy my life was. My phone was full of calls from clients ordering wine and needing information. My sales were going down and my boss was asking why. I just wanted to call him up and say you want to know why? I'll tell you why. Because instead of calling on accounts I am standing in the parking lot of the Social Security office explaining to my husband that we haven't sold the children and that he doesn't need to stay here and be executed! That's why! You think I am doing poorly, but I think I am a freaking super hero to be answering my phone, returning calls, placing orders, picking up children, grocery shopping, paying bills and dealing with this lunacy all at the same time!
I realize that any attempt at a rational explanation would be fruitless, so I try to just go with the flow.
“ They said I could take you for donuts first.” I said.
“Donuts?”
“Yes, you can go have donuts first, they said it was ok.” He looked a little suspicious but he likes donuts and he got into the car.

We picked up the donuts and I just continued driving towards home when he remembered that we had to go back. I don't know why but I tried again to explain things to him.
“Honey, you are a good man, you have never done anything bad to anyone, you have not sold your children you just signed them up for benefits, no one is going to arrest you, you are not being executed, you are just going home where I will take care of you and we will have a nice dinner tonight and watch some television.”
He looked at me like he really wanted to believe me then he said, “Ok, then tell me why all these people are following us.”
I looked over my shoulder and sure enough, there must have been twenty cars are more behind us on the broad boulevard. So keeping in the spirit of the day I said, “You're right, let's lose them! Without signaling I abruptly turned right onto the next side street into a neighborhood of shady trees. I turned down street after street glancing into my rearview mirrors. Alec was really into it; he kept turning around and looking over his shoulder. “Did we lose them?” I asked, looking over at him.
He turned to me and actually smiled, “Yes.” he said.
I reached out my hand to take his and smiled into his eyes, “Good, then let's go home.” And we did.