This week’s Ataxia Profile is number 16…and I have been enjoying bringing them to you. This time, I am pleased to bring you Donna Gregg’s story. I will let her tell it in her words:
I have a disability. There. I said that aloud for the first time yesterday, since being diagnosed with ataxia three years ago. We were at a car dealer with the need to trade in our pickup truck for an SUV. The truck is high off the ground, and getting into and out of it has become quite difficult for someone with a balance problem. Driving it is fine, climbing in and out is not. I didn’t want to come across as a silly woman who is afraid to drive a big, bad truck… so I told the salesman that I had a disability. Finally, I had the courage to use that word.
I am 70 on my next birthday, and ataxia has been coming on for some time. For me, it was very subtle. I’d be in Home Depot, and realize that I was needing to hold on to a shopping cart, even if I only purchased one item. The “bigness” of the store was making me feel quite odd. What could that be? Other times I just didn’t feel quite right, but couldn’t define what that meant to my doctor. Tired? Well, no. Dizzy? Sort of, but not exactly. A little off, like I’m coming down with a virus, but I feel fine otherwise. Then I started the tests. The most significant was testing my blood sugar four times a day in case it was hypoglycemia. No, after keeping a record for 3 months, that wasn’t the problem. I had all sorts of blood tests, checking various hormone levels, checking my ears, checking my blood pressure. So much checking. After 6 months, my doctor referred me to a neurologist, and then I found some answers.
I wasn’t diagnosed with any specific type of ataxia; my brain and cervical spine MRIs came back inconclusive. I have general cerebellar ataxia, with the presenting problem of balance while I’m standing or walking. While I’m sitting down, I feel nothing wrong; I feel “normal”. But walking on uneven ground, walking in a large open-air setting, and even turning my head to look at something while walking can send me to the ground. Over the last three years, it has gotten slightly worse, slowly and steadily. I have come to terms with the fact that there is no fix to this.
What my saving grace is, is that most of the things I love to do, I do while sitting. I’ve read a thousand books in my lifetime, I crochet, knit, and embroider. But my biggest reason to be grateful is that I am an artist, with pet portraits being my passion. I haven’t had to give up *too* much of my life due to this condition. I am indeed humbled by this; I know that my symptoms could be so much worse. I can no longer walk my 68-pound dog, but I can draw her. I can’t spend the afternoon running here and there, in and out of the car, accomplishing many errands like I used to, but at my age… so what?
What this experience has taught me is compassion. When I was younger, I was irritated if the old lady in front of me in Walmart was a bit slow. Now I’m that old lady. Life has limitations, and people mostly just get by with what they are capable of. There is no shame in saying “I can’t to that anymore”, and my eyes have been opened to those who suffer chronic health difficulties. I could have it so much worse, yet I still have to daily accommodate this condition in a hundred little ways. I try to keep them invisible; they are my problem alone. I don’t want to be that person who constantly reminds others of my health woes, and expect to be served. I’ll do what I can, and if I can’t do a simple thing like worm my way through a crowd of shoppers, then I’ll find a seat, do some people watching, and wait till the crowd thins out so I can walk a straight line. I have a disability, but I’m still me.
Thank you, Donna. I appreciate your willingness to let us take a glance into your life. I really connected with your description in the last paragraph of becoming a more compassionate person. I have a completely different perspective on this, also…as I have become, as you say it…now I am that older slow-moving person. I have discovered that Ataxia makes simple things difficult…and I now see people who struggle in a completely new light.
Until next time…Jason