I knew the day would come when I would have to say goodbye to my tub-slider. It had been loaned to me from ALSA and it has been sitting in my storage space in the basement, in anticipation of the bathroom renovation which never came, and never will. So ALSA called and asked if I had the renovation yet and if I were using the shower equipment, which retails for $1800, and which can't work n my bathroom the way it is. I had to admit that I wasn't using it, and give it up to someone who needs it. It's only right, but it was tough for me to face the realization that I won't be able to get in the bathroom again. On Monday morning, I have a night aide who graciously stays another 1/2 hour so that she can work with the morning aide to move me a few steps into the shower and give me a shower and wash my hair. But with more room in the bathroom, they would be able to wheel me in a special chair and slide me in the shower. That way, one aide could do it, and I could shower every day. I feel less than human, but I will have to get used to it, because I will never be able to get $7,000 together to renovate.
I have connected on Facebook with a lot of my former students, and classmates from high school. My former students are all telling me how influential I was in their lives. Veteran teachers always told me in my darkest hours "five years after they graduate, they will come back and tell you that you were a favorite teacher. Yup, that's about right. As a matter of fact, several of them have become teachers themselves, and one student -- one of my most talkative and disruptive girls -- told me her students never shut up and it drives her crazy. She apologized to me for being such a pain, because now she's on the other side and knows how it feels. Funny how life turns out.
Sometimes I wish I could wear a sign saying "I had a life before this. I was slim and cute too. I didn't always look like this. I was a teacher and spoke three languages fluently, and studied three more. There's a brain in this broken body. Talk to me." But it wouldn't do any good. On the internet people don't have to look at me, so it's easier. When people email and ask how I am, I tell them "great!" Anything less than that is misinterpreted as bitter. I've found out that I am not allowed to be sad or angry, and I must be an inspiration at all times. It doesn't seem fair that healthy people are allowed to scream and complain, but I am told that nobody will want to be around me unless I am grateful to be alive, realize that there are people worse off than I, and am an inspiration 24/7. I don't know why my healthier counterparts are allowed to forget how lucky they are, but that's the way it is.
I am grateful to have celebrated another birthday earlier this month. On my birthday weekend, one of my aides took me to lunch, her mother bought me a top. Then my family came out to Queens and took me to dinner. The following weekend, Louise and Judy took me for Thai food. Of course, I am very grateful for that.
My braces[AFOs] need to be adjusted, and my shoes have stretched out, making standing very painful until it gets fixed. The shoes are not covered by insurance. Although I can pay the $150, it kills me that products for disabled people are so overpriced. My physical therapy is managing to stave off painful spasms, and the therapists get me to stand and balance, which feels good. I am working out with light weights to preserve the muscle tone I have. I am still working on a program of nutrition to reduce my sugar, stay healthy, and drop the weight I gained. I'm discouraged by the fact that the nutritionist at my clinic hasn't gotten back to me according to her promise to investigate an alternative to the sugar-filled products out there. And my wheelchair seatbelt broke again, but Medicare won't pay for another one, so I have to make my own arrangements for the repair.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, June 23, 2009
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Fern, wow...So many words I can so relate to! Very well said!
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