On Saturday afternoon, a friend I have known on and off for about 20+ years, came so we could go to Dunkin Donuts. It was about 2:30 by the time Ellita got my coat and scarf on, and my Mercury talking machine mounted on my wheelchair. She left to do some shopping because she likes me to have privacy with my friends. My friend let me know that she had to leave by 4, to go down to Macy’s, and then she had an appointment to get her hair blown out before she went out for the evenng. Okay, I was grateful that she found time in her busy schedule to spend some time.
Let me relate the events and tell how it feels to be in my position. I am not trying to be ungrateful, but I am definitely the first friend she ever had to get ALS, so she doesn’t realize how it feels to be me.; most people don’t. I hear that it’s kind of similar when a friend gets cancer, although I have the added accoutrements of wheelchair, diminished hand dexterity, and inability to speak. But I’m hoping someone will read this and know a little bit more of what to do/not do with a friend who gets a disabling disease. In fact, I hope with all these entries, someone somewhere learns how to comfort a sick friend. It’s too late for me; I’ve scared everyone away already. But, chances are that we will all have a friend with whom we will have to deal, with cancer, AIDS,MS, Parkinson’s , or any host of diseases in this age of treatments and cures that help sick people live loner.
So we get to Dunkin Donuts. I want to order a chai tea and a donut. I can do this; I have done it before. I have a miniature version of my Magna Doodle that I keep in my purse. I write “chai tea latte and gingerbread donut”. Te clerk nods; no problem. He is perfectly comfortable with it and so am I. My friend yells “Go to the table” I go to take out my money. I am slow, but I can do it. The clerk is patient, as I find most counter people in my neighborhood to be. My friend is noticeably agitated. She orders me again to go to the table and insists on paying. I feel this is a little infantilizing and then I remember that everybody always wants to pay, and it feels weird. So I go to the table, and she helps me get the straw in the chai tea, which ids help I always need.
So I remark that I haven’t seen her since the spring and wondered where she was all summer.
“Oh, I went to Long Beach so many times on the Long Island railroad with [she mentions another friend]
I say “this was the first summer I never saw the ocean. I really miss the beach”
“Oh, it was so nice. Too bad you can’t go anymore”
“But the LIRR is totally accessible and there are matted paths on the beach now for people in wheelchairs”
“Okay so next summer, you should pick yourself up and go with the aide”
She didn’t get it. Aides are emp;oyees; they’re not friends. When the do their twelve-hour shift, they go home to their own friends and family.
She gets up and puts on her coat. She is afraid of being late for Macy’s, or maybe the conversation was too difficult.. I am not finished with my chai tea, but she is standing over me and pointing to her watch.
I am grateful that I got to go out and be in the world, but I wish everyone realized that trains, beaches, theaters, many restaurants, cinemas, etc are all accessible since the Americans With Disabilities Act was passed more than 15 years ago But they are nt comfortable with taking me along. Maybe it’s the talking machine and how long it takes for me to do thins, like pay. Maybe they feel they have to pay my way, which they don’t have to do. Whatever it is, it is. If just one person reads this and remembers it for that time when she finds out that a friend or family member is disabled, by a stroke or other illness, then I’ve done my job.
I try to be grateful for one thing a day. This week I am grateful for a Chanukah surprise from my high school friend Marjie, to Louise for coming to do this month’s bills. I am also grateful my brother-in-law Claude did the four-way trip to pick me up to take me to Thanksgiving dinner at his and my sister’s house, where I got to see the kids. And for Ellita who got a fifth aide, Keter, in my care rotation. So now we have more flexibility if someone gets sick, or goes away. And, yes, I am grateful to the friend who took me to Dunkin Donuts, even if she didn’t take me along to the beach this summer.
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.
Monday, December 3, 2007
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I've been reading your blog regularly lately and have postet a comment a couple of times. When I read this last update, I must say I got mixed emotions. You're doing a great job explaining how life is like for disabled people, especially with ALS, and I absolutely found your friend's behavior rude and ignorant. Of course, I don't know how well you know each other. However, I did feel some sympathy for her as well, knowing it's very difficult to know how to behave correctly around people with special needs and it's easy to become anxious and stressed out even though the intent is good. When reading your dialogue I somehow felt you could have been a little bit more direct with her and asked her straight out is she thought she could find the time and effort to take you to the beach next summer. Just a thought...
I just started reading your blog a couple days ago. Now, I am so hooked that I have to go back and read everything! I LOVED this entry. It was great, and I am quite impressed with your own patience and tolerance. Just reading it, I got more upset than you did, saying aloud with my one year old near by (You F-er!) aimed at your guest and the previous commenter.
You rock! You do have a unique story - because your voice is unique, your talents are unique, and darn, can you tell a good story! You talk about other als books, but their voices are NOT YOURS! Write your book, please. And send it to Nan Talese @ DoubleDay. She published Frye's book. You rock! I'll email you her email address...
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