A young woman has watched her dad die of Huntington's, but her fight isn't over... |
Most people hate waiting in hospital lobbies, but it really isn’t so bad once you get used to it. After a while the plastic chairs, metal carts, and sterile smells of latex and stainless steel seem ordinary, like a tacky couch or a grandmother’s choking perfume that you get accustomed to over time. I have spent more time in hospitals over the last few years than most people spend in their entire lives. All of the nurses at County General know me: over the years they have probably spent more time with me than with their own children. The folder reading “Hayworth, Raymond” was such a ubiquitous part of the landscape of the main desk that I suspected it went weeks without ever glimpsing the storage shelf. Today is the first day I’ve seen them in over two months, since my father passed away. For his last year I took care of my father at home, but I stayed friendly with the nurses when I brought him in three times a week for tests and check-ups. At first they had tried to convince me not to opt for home care, “It’s too much for someone your age to have to shoulder, Melissa, no one expects you to take this on...” But we were a pair, and that was all there was to it. My mother died when I was only two, and ever since then it had just been the two of us, and nothing, not even something as insidious as Huntington’s disease—a progressive disease that robs its victims of control over their own bodies—was going to change that. He was self-conscious about being a “burden”, but I made it clear that I would be wherever he was, end of conversation. He always said that it flooded him with guilt every time he saw me sleeping in a plastic chair or picking at a meal from the hospital cafeteria, or having to sit on the tile floor to spread my textbooks out around me to study as we waited on yet another set of test results. I knew that underneath his bravado about “showing this disease who’s boss” he really wanted to be at home, in his own bed, where his border collie could sleep at his feet and he could look out the window at his beloved mountains. His way of holding onto his last shred of pride--and believe me, there is nothing like a progressive neurological disease to shred your pride into ribbons--was to claim that home care was just as much for my sake as for his. And he was right. At home, he could have his dog, he could see the mountains, and he didn’t have to put up with a roommate watching obnoxious game shows at obscene hours of the night. As for me, my chemistry textbooks tormented me just as much no matter what surface they were scattered on, but at least at home the chairs weren’t plastic and I could eat cheap food from my own dishes instead of cheap food on plastic trays from the cafeteria. *** “Hayworth . . . Melissa?” The head nurse, my old friend Nurse Miller, calls my name, with a slight question in her voice. Seeing ‘the Hayworth file’ in her stack of records has been routine for years, but it was always his name, not mine. “Just a checkup,” I assure her as I head towards the examining room, not needing any directions in this place that was as familiar to me as my own home. . . actually even more familiar to me than the apartment I’d recently moved into; I hadn’t been able to stand living alone in that ranch-style house full of so many memories. I settle onto the paper covered examining table, and Nurse Miller pokes her head in to say that Dr. Hansen is running a teensy bit behind, but he will be in shortly. No hurry, I think to myself. The examining room is decorated with oil paintings of peaceful countryside scenes, calm dirt roads lined with wildflowers, and horses grazing next to a quaint wooden fence. Dad had been a horseman (and yes, people at the stables got a kick out of the competitor named "Hayworth"), his specialty was jumping competitions. As a kid I loved to sort through all of his ribbons, arranging them by color, by size, by year, picturing him astride his horse in flight over death-defying flight to earn each one. He was a small man, his light frame ideal for jumping—barely five foot six and lucky to weigh one-twenty. That worked to the advantage of us both in the end, though, when I had to lift him in and out of bed, bathe him, and do various other things that were increasingly beyond his capabilities.. At first he had insisted on struggling from his wheelchair to bed himself, but after a while, as his disease progressed, it was impossible. Near the end, when I was rotating his limbs to exercise them for his prescribed daily physical therapy, his eyes would brim with pain that he could no longer voice, even if he had been able to find the words in the first place. Not physical pain, but anguish at our situation: that his twenty year old daughter’s daily routine involved of moving his uncooperative body for him. That look in his eyes was far more sorrowful than the grimaces from physical pain. Eventually his eyes were the only thing he had complete control over; his speech became so slurred that he was embarrassed by it and preferred to stay silent. But even when he lost the power to turn his head, those bottomless blue eyes took in everything within their range. For years I had poured everything I had into the care of my father. I fed him, dressed him, bathed him, driven him to doctors’ appointments, administered his medicines. And then I lost him. I knew all along that I was losing him, it was like a car crash, when you can see the oncoming vehicle getting closer and closer, knowing it is about to slam into you and turn your world upside down, but feeling your brain slow down to lock you into the horror of seeing it frame by heart-rending frame. Some people might be bitter about this, but I had always known how the story would end, the doctors has been mercifully upfront about the prognosis of Huntington’s, so there were no tragic surprises in his case, and so most of the grieving was done before he was actually gone, allowing us to deal with it and move on to a more peaceful mindset of just getting through a single day at a time and being thankful for each one. I don’t know who felt the loss more acutely. He was forced to see me spend my teenage years nursing him as he became more and more helpless, watching all of my friends head off to college while I settled for correspondence classes that I could work on without leaving his side. Likewise, I had to watch his disease slowly take him. I could write a book on the symptoms and progression, after coexisting with the beast of a disease for so many years. It would be fair to say I know as much about the “in’s and out’s of it as many doctors.” That is the reason why I am now sitting on a paper-covered examining table, my fingers drumming on my thigh, then the table, then my wrist watch, then the table again. In spite of the friendly chatter with the nurses, this is a business visit, not a social one. I am not drumming my fingers out of impatience or nervousness. My fingers are drumming themselves. *** There is a short rap on the door, and Dr. Hansen enters. He doesn’t say a word. The look on his face speaks volumes. The disease that stole my father away before my very eyes, the disease that I endured along with him, the disease that has been an intimate part of my life for so many years as I struggled to help my father combat it....the disease has now come for me. |