Friedreich's Ataxia Parents Group
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Young People With Friedreich's Ataxia Speak Up Goeff Fox, "Joy" Chelsea Chamberlain, "Chelsea's Musings", May 2005
A few Christmas’ ago, I think it was Christmas of 2002; I was finishing my first semester at college. Much to my parent’s irritation and concern, I was not yet using a wheelchair. I did use it, however, for outings that would require a lot of walking… if only to minimize the time of walking like a ‘drunk.’ Anyway, a week or so before Christmas, my best friend asked me to join her and her family to Zoo Lights. The Phoenix zoo dresses up the whole park in Christmas lights. It is just a fun opportunity for friends and family to spend a nice winter night together and enjoy some hot chocolate and the cold… if you can actually call Arizona winters ‘cold.’ Jessica –my best friend-, her brother, a friend of his and myself were having a great time. We were running around, well I was rolling as this was one of the few times that I was using my wheelchair, and laughing and having a fun night. Jessica and I are always laughing about one thing or another; our laughing got us into some trouble during jr. high and high school. We were taking a break from looking around and decided that we wanted to share a pretzel and a coke. She pushed me up towards the concession line. We were making fun of her brother, or something like that… whatever it was that we were laughing about, was quite amusing to us. We were waiting in line laughing when this little old woman came up to us. It is hard to judge height when you are sitting down, but she could not have been more than 5’4. She walked right up to me and pinched my cheek – no seriously, I have never seen this woman in my life – and says to me: “It’s so nice to see you people smiling.” And I looked up at her, knowing perfectly who ‘you people’ were and asked: “Well, why wouldn’t I be?” Seriously, why wouldn’t I be smiling? I had and still have no reason not to. I am alive, I have friends, I have family, I have freedom, I have an education, I have the ability to be anything I want, I am not hungry, I have clothes on my back, I have food in my stomach, and I always have a chair. You know not many people can say that. I never have to worry about finding a chair whether it be at a party, club, movie, or anywhere… I always have a chair. Granted being in a wheelchair sucks on many levels. My parents probably hate that I just used the work ‘sucks’… they hate that word, I think it is a generation thing. Sometimes things do just suck and being in a wheelchair is one of them. There is no denying it, there is no way to sugar coat it. It is not really the wheelchair so much as it is the reason why I am in one. Having a neuro-muscular disease is hard. The future is much more scary, daily life is that much harder, and remembering the past - the days when I could do certain things – is hardest. But a person cannot live in the past, and they certainly cannot live in the future. The only place a person has to live is right now, today. I have many things to cry about. The fact that I have a terminal disease kind of puts a damper on things. But I cry about other things. I cry about getting a bad grade. I cry when I fight with my friends. I cry when I have boy problems. I cry at sad movies and happy ones. I cry at the really corny Hallmark commercials. I have a lot of things to be afraid of. I am afraid of snakes. I am afraid of hospitals. I am afraid of bees… ok, in my defense I cannot run away from them. I am afraid when my friends push me in my wheelchair and they have been drinking. And I am afraid of tomorrow. But tomorrow is going to come whether I like it or not. And being in a wheelchair makes all of this a bit more difficult, but it is nothing that I cannot handle. None of us are given more than we can carry. When I asked that old lady why wouldn’t I be smiling? That made her so happy. She bent down and kissed me right on the cheek. As sweet as that was, it was highly disturbing. Jessica and I have now added that into our book of memories. It was a good night. I have had many good nights in the two years since that has happened. Now I am 21 and using a wheelchair full time now. I have had to break boundaries with my wheelchair. I have had to break my comfort zone many a time. I have to do it each and every day. Do I like it? No. If I could change it, would I? Hell yes. But it doesn’t matter if I like it, and I can’t change it, so I have two choices. Closet myself away so that I do not have to feel pain and people do not have to see me in my wheelchair, or take the pain and live my life. I choose the pain. Sometimes it really wares me down and I fear defeat is coming. But I am like Rocky, just when you think I am down, I come up swinging. I take the pain, because along with that I get comfort, love, joy, and laughter. I have so many wonderful memories that if I were to leave this world tomorrow, I would have no regrets. I laughed, I loved, I believed, I cried, I yelled, I got in trouble – still do actually – I have lived the life of any other 21yr old with a few alterations. I am grateful for each day I have been given. I refuse to guesstimate how many days I have left, because really, that just takes the fun out of life. Chelsea Chamberlain |
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