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Content © 1999-2009
|As told by Carmen
I will never forget the moment I first heard the words, "Huntingtons Disease." Without even knowing what it meant, I knew it was bad. Worse than bad. After numerous falls at work, my wonderful husband of three brief years had been referred to a neurologist. I thought he was just clumsy, so I wasnt really worried. Until I saw his face.
It was September 28, 1994, our third anniversary. He was late, and Id been working up a good bit of anger because we had dinner plans. I forgot all that when he told me the news. A few days later, we met with the neurologist and I learned I had good reason for my fears.
Daves mother had been sick for quite a long time. I never
met her and Dave had not seen her in years. By the time Dave was diagnosed, she had died.
She had been adopted so there was no family history. When we were dating, Dave told me his
mom was in Pennsylvania, remarried and sick with Multiple Sclerosis. I knew that was a
horrible disease, but not genetic, so I didnt worry. As I began to learn more about
HD, and hear others stories, I heard of this scenario quite often. A lack of family
history and misdiagnosis is not uncommon.
Dr. Chiu went on to tell us the truth. She didnt sugarcoat it or offer us false hopes. For this, I am grateful. She told us that HD is a devastating, degenerative brain disorder for which, right now, there is no cure. She outlined the course this disease would take and sent us on our way.
Dave had a good job when he lived in Phoenix. Hed been laid
off due to an economic crunch, but we had no reason to believe he wouldnt be able to
find employment again. Not long after hed moved to Hawaii after his divorce, we met
and married. Eventually, he got a job with the State of Hawaii, but it became clear after
he started the job that in no way could he perform the duties of a Budget Analyst. I have
to laugh now at the irony of a person in that stage of Huntingtons being a number
cruncher. It just wasnt funny at the time. Dave was tested and it was determined he
was dyslexic. Under the Americans With Disabilities Act, his job was protected even though
we now know he never had dyslexia. Because of the ADA laws, they couldnt let him go
for poor job performance until they had made every reasonable effort to find him duties
that he could perform. They could, however, shift him from
After diagnosis, it was determined by his employers that they had fulfilled the "every reasonable effort" part of the ADA law. Though this was a financial blow to us, it was a relief to Dave. I look back and wonder how Dave managed to do physical labor in the hot Hawaiian sun every day. He was six foot four inches and had dropped to one hundred forty-six pounds.
Even though Dave had been working long enough to receive benefits, he had never passed probation. Moving from department to department had created the loophole the state needed and we were now without his income and medical benefits.
Again we were blessed. His files from the state, coupled with a well-written letter by Dr. Chiu, were enough to get Dave Social Security benefits within weeks of applying. I continue to hear horror stories of the social security system. I am so thankful that in our case we didnt have to go through all the red tape.
While Dave was going through his tests and dealing with HD, I was going through my own series of problems; I had to adjust to being married to a man I knew was dying. It became routine to play referee between Dave and my youngest son from a previous marriage. I had heard that a person with Huntingtons often focuses on one person; Justin became the target for Daves abuse and crazy behavior. Contrary to having a man who would act as a father figure to my sons, it seemed as if I now had three kids.
Dave did all types of crazy things with money. One time, I had a series of bouncing checks. I couldnt figure out why there was no money in the account until I finally pieced together this story. I used to make lunch for Dave and as he had quite a sweet tooth, I always made sure there were cookies and desserts for him. It seems one brand of cookies I bought was popular in the office, so one day he went to the ATM, took out two-hundred dollars then went to the store and bought cookies for his coworkers. His generosity resulted in our having to pay out hundreds of dollars in bank fees. Dave did so many odd things before his diagnosis, it made me wonder what had happened to the man I had married.
Before then, I had never heard of Huntingtons Disease. One thing I know about myself is that I really dont like being around sick people. I remember the looks on the faces of people at church when Dave and I stood and asked for prayer. I was one of eight children and my mother did not have time for us to be sick. In fact, we were each allowed one sick day a year. My younger brother took this quite seriously. He asked mom since she was the mama, could she be sick for two days. Now, I asked those dear friends in the church to pray for Dave. But I also asked them to pray for me. I said something really sensitive like, "Please pray I can handle this. I dont do sick. I always thought if you are sick, get drugs and get better. If that doesnt work, then please have the good grace to die." Of course now that it was my husband who was sick, my opinion of illness changed. I would willingly nurse him no matter what. You can imagine how well that went over. But they got my point. I was in something I really felt ill equipped to handle.
Though people cared, they just did not "get it." People wanted to help, no one wanted to see me in pain. Sometimes the words that came out of their mouths were insensitive at best. My favorite was a friend at church, who a few weeks after diagnosis walked over to me, looking aggrieved. She gave me a big hug. Trust me... she should have left it at that. She said, "I am so sorry to hear the news about David. But thats OK. When he dies, you will still be young and you can lose all your weight and get married again."
That was supposed to be a comfort? You have written off my husband, hastened his death, called me fat, and married me to who knows what kind of loser man all in one breath. I am not normally speechless. But mercifully for her, I was that day. There were many other comments but that was truly the jewel of them all. Thank goodness there were even a few helpful words given by others.
As the economy worsened in Hawaii, it became apparent a move should seriously be considered. I was self-employed and losing my largest client while trying to hold the family together. The cost of living in Hawaii, and the lack of insurance made it impossible to live there. I was devastated. It was bad enough to be losing my husband to something I had never heard of. Now my children, who had never asked to get involved with this man, were going to have to leave their island home of fourteen years as well as their dad.
A long search led us to the Orlando, Florida area. Since moving, life has been a challenge. We are exhausted by the chase for Medicaid and Medicare benefits, and tens of thousands of dollars in debt. Dave was supposed to be my happily-ever-after. Things have turned out just a little differently than I had imagined they would when I promised to marry Dave for better or worse. This was much worse than anyone could have predicted. Certainly I had every right to walk away.
Living with HD is a lonely place to be. When we learned about Daves illness, I rushed to the encyclopedia and found only a brief paragraph about it. I went to the library, and all I could find was medical jargon I could not and did not want to understand. I wanted to know how to cope. There was no support group in the islands and nothing written that I could find that would help. I did start a small support group in Hawaii, but the only other person with HD was a lady who lived in the hospital where the meeting was held. Everyone else was at-risk or positive and not symptomatic. There were no other caregivers.
Huntingtons Disease Society of America did send me some helpful information about the disease itself and how to care for a person with HD. I also bought some excellent books. Yet nowhere did I read of people like me and how they were coping.
Nine months after diagnosis, Dave and I attended the annual HDSA convention in Pennsylvania. I was not prepared for the information overload and for seeing not one, but many persons with Huntingtons. Before the convention, there was a call for writings relating to HD. I sent in a story and was selected to read my piece at the closing session. All the writings were emotional and the tears poured. Everyone in the audience was moved by the courage and love of those who read their stories. My piece was the last to be read.
I had written about my impressions as a wife who has just heard about the disease. Tears filled my eyes and cascaded down my face making it difficult to read. The sounds of others crying made it all the more difficult, yet somehow I made my way to the end of the story. The silence in the hall was punctuated by sniffles and slight sounds, and then the applause began and swelled. The convention was officially over.
Making my way down the stairs, I was surrounded by people. "May I have a copy of your story? I want to give it to my counselor, my doctor, my wife, my pastor, my friends." People lined up to give me their addresses. What I had shared was not great writing. It was nothing unique. But I had managed to capture the essence of what others were feeling, and put it into words. People could identify with my feelings of hurt and anger and loss and fear. They wanted to be able to have something tangible to take and give to others and say, "Read this. This is how I feel."
When things get tough, I have to keep reminding myself of several things. This is not the first disaster I have faced, and it wont be the last. Others have survived worse, and I will survive this. Whatever doesnt kill me will make me stronger. Get the picture? I know that no matter how bad something is, something good can always come from it. Ralph Waldo Emerson said, "For everything you have missed, you have gained something else." I can honestly say I have lost much because of my association with Huntingtons Disease. On the other hand, I have gained many things. I have met some of the most incredible people since we found out the news. These are people who have enriched my life as no one else. I have grown closer to God and have begun writing, that has opened many doors. I have become a stronger, more compassionate person, and have been able to reach out and support many people.
Used with permission; Faces of Huntington's by Carmen