MS=Opportunity. Opportunity to not take my abilities for granted: to pay attention to my buttons and zippers, the way my wrist turns when I flip pancakes, the ease in which I bring food into my mouth, the way my feet follow one another without a moment's thought and how easy it is to use this instrument that I call a body.
I don’t know the facts of my dad’s Multiple Sclerosis diagnosis. Unlike my brothers, I don’t have vivid memories of an actively moving dad. I remember watching a movie when I was 4 in the basement with my mom when he came home early from a sailing trip because he was having vision problems and it was scaring him. He was wearing red suspenders when he walked through the basement service door. This memory of red suspenders is my ONLY recollection of my father walking without any kind of assistance. I don’t know where all the other recollections went because everything before this was a dad I didn’t know and everything after this was canes, walkers and wheelchairs. It’s as if this memory suspends itself above all the others just so I won’t forget it. It is so vivid: my dad walking with red suspenders and weird waterproof shoes. He walked so beautifully. You won’t see your parents walk beautifully until they lose the ability.
For some reason, the majority of us have an optimism in which we feel we are immune to disease. It’s okay to admit it. I have no business even acknowledging my naiveté with the genes I’ve been dealt, but still, I remain hopeful that I possess something no one else does that will keep me safe from disease. Why? Because I don’t want it, I’m not ready for it and it scares me. I can’t imagine my dad ever thinking that at 51 he would be dead from Multiple Sclerosis. I imagine he thought what we all thought – I’m strong, I’m healthy and those things don’t happen to people I know. The facts are: he was strong, he was healthy, he did take care of his body but he was not immune. The 12 years of boxing he fought, the games he battled on the football fields of Columbia Heights and St. Thomas and the softball games he played recreationally were but tiny pieces of drowning flickering light after his diagnosis.Let’s consider the life of an individual for a moment. Some people manage to live to 80 these days, the lucky ones live into their 90’s and the miracles live to be 100. In the infinity that life has on earth, 100 years is but a blip on the radar screen. The people that live long enough to maintain their ability and health until old age when knees and hips and backs have problems because the human body is not meant to exist much longer, are considered lucky. Then there are people like my dad, whose abilities get stripped earlier when their minds aren’t ready for it. I wasn’t ready for it either, nor were Travis, Taylor and my mom. Five lives changed forever after his diagnosis. My dad lived to be 51, his diagnosis came at 38 which meant he had 38 years to live free of disability. 38 years is short. When my dad was diagnosed he had a 10, 8 and 4 year old and he had only been married for 11 years. 38 years is a blink.
My dad was talented, strong and smart, just like you reading this. He had things going for him – me, for one. He managed a couple of companies, worked long hours and he knew his shit (and if he didn’t know his shit than he knew how to talk his way into knowing it). He was a coach for my brother’s sports teams, a divine breaded pork chop maker, a bit of a short fuse, a bragger, a flirt, a deep laugher, a chocolate lover, a prankster, a hard worker, etc. He had passion, pride and gusto for life and a personality to beat. And he loved my mother fiercely. He was never shy about his emotions, assertive and gentle. He was often misunderstood and sometimes much too abrasive and he never knew when to shut his mouth. But what my dad isn’t, is a man defined by Multiple Sclerosis.
Why I am really writing this, on the week of March 14 2011, is to make you aware because it could happen to you.
It’s extremely difficult to talk about losing our abilities. Our abilities are what keep us and allow us to work, talk, have sex, eat, play – not to mention wipe our asses, smoke cigarettes and turn the channel on the television. We have this incredible instrument that allows us to pursue our wants and needs without having to think about it. Our brain tells us to punch a key on a keyboard and our body does it. It’s a small miracle I am able to type this essay without thinking about the keys I’m actually pushing. When we are stripped of those wants and needs, we suddenly realize how valuable being able to tie a shoe or take out the garbage really is.
I can try as I might to imagine what may have gone through my dad’s head when he lay in bed, completely helpless, and listened to my mom and brother scream at each other into the wee hours of the morning. MS physically confined my dad to a bed and trapped my mom into isolated parenting. I can also try as I might to imagine what he really thought when I had to remind him four years later that his wife was still dead. MS robbed him of a short term memory. I can try as I might to understand how far low his self-esteem dropped when the friends who played softball with him, called him to share beer, sailed with him or just talked business with him suddenly vanished when the wheelchair became a burden. And I don’t want to imagine what it felt like to be in a nursing home at age 48. He lost his license to drive from MS. He lost his job from MS. He lost his ability to walk and it eventually took both arms right after it robbed his fine motor skills.
My dad couldn’t feed himself, brush his teeth or even smoke a cigarette. He couldn’t change the channel and on multiple occasions he would watch Looney Toons until someone would notice and help him. On more than one occasion he lost control of his bowels and bladder. If he had the flu or if he ever had to throw up, he had to do it on himself because he couldn’t stand up to make it to the bathroom. It took 2 hours for him to get out of bed in the morning, assisted by a nursing aid. Strangers (nursing aids) showered him so my mom could have a break. Eventually, because my dad remained motionless for so long, he developed sores on his back and butt and one was so deep near the end of his life that you could see his tail bone. Are you uncomfortable yet?
Let me flip this paragraph to drill home the point: You can’t feed yourself, brush your teeth or smoke your cigarette. You can’t change the channel on the television so you watch Looney Toons because you’re too embarrassed to ask for help. On more than one occasion (uncountable occasions) you lose control of your bowels and bladder. Where? Driving the car, in church, at work, at the bank, at your son’s baseball game, etc. What happens now? You get a “bag” – a catheter to catch your pee and you’re only 45 years old. If you feel sick, make sure you turn your chin to your chest and throw up on your shirt because it’s less of a mess. Your damn legs just won’t make it to the bathroom fast enough. It takes you 2 hours to get out of bed in the morning so forget about the TODAY show, the scrambled eggs and the cup of coffee because by the time you make it to the kitchen, it’s almost lunch. People you don’t know will be getting you naked, putting you on a seat in the shower and washing you because you can’t do it yourself and because your partner needs relief from caretaking. Yea, it’s not easy taking care of you but don’t feel like a burden. And how do those huge sores that will never go away feel on your ass? Pretty painful, right? Don’t try to move to relieve the pressure from them. It’ won’t work.
The paragraph above is what MS did to my dad. I did not think of him as disabled or unable nor did I feel sorry for him. He taught me lessons that no one would have been able to. He never gave up. He never felt pity despite the loss of friends (and family) in spite of his disease. He always smiled. He always laughed. Despite his motionless body, he continued to interact with the only two grandchildren he would ever know. He never, ever thought of himself as unable and he never thought less of himself. When people stared or when children pointed, he took it as an opportunity to show him what it means to be human. He tried. But above all, he always felt himself lucky because he had a beautiful family, he was alive, he had a working mind, he could still enjoy chocolate and he still knew how to love. My dad taught me what it means to truly live.
Disclaimer: I just want to make a note to point out that not all people with MS will die from it. In fact, most don’t. And not all people will become paralyzed from it. In fact, most don’t. But it doesn’t mean that it won’t happen.
