Wednesday, December 26, 2007

New Year

I’ve been through a very weird two weeks. First I was broadsided by a crisis with one of my aides. It was about something the new “fill-in” aide said that was totally twisted around and led to one aide thinking I betrayed her. She threatened to walk out and I had to have a long “talk” with the fill-in aide, which isn’t easy when you have to type out everything and your hands get tired. And it is virtually impossible to talk over an angry aide who is raising her voice. It would have been a daunting task for a healthy person, but for me, it was just too overwhelming. I had a day-long crying jag, and at times I had trouble with my breathing. But it’s blown over for now, and I really hope it stays that way, because that stress is something I don’t need.

The bright side: some awesome gifts from friends near and far. I had Christmas dinner with the family yesterday and got more nice gifts. I gave giftcards to the kids, and I filled the tip envelopes for the aides and the building staff with what money I have managed to put aside this year from eBay sales and surveys, etc. So I need to raise money if I am ever going to have a renovation, and a shower and hair-washing again. I am trying to find all kinds of ways to make cash here and there. I’m sure this will never happen, but at least I have a goal, because G-d knows all the dreams I had last year at this time are shot to hell.

So I have my eye on a new prize: I am going to do anything to accumulate cash for new rugs, a paint job, and a renovation. I am glad the stress of Christmas is over. I am grateful to be here another year.

Last Saturday, I had a visit from the nurse at Consortium hospice. We both decided that I am not ready to sign a DNR because I can still fight an infection. Somewhere in this misery I find the strength to keep living. I still think I can make a difference, Maybe I am still delusional. I think that I have learned to accept this life a little longer while I can still write. As depressed as I get, there are still bright spots. The attorney who handled my apartment sale sent me an invoice for $840.00. For months I have been staring at it and wondering what I should do about it. Finally, I bit the bullet and sent him an email telling him that I would have to pay in $50 increments. He wrote back and told me to forget it. It’s nice to see some people have a heart.

Thursday, December 6, 2007

Dusting Off My Boots

I am going to try to get through the day from now on, and count my blessings. I am not going to expect anyone to bring me along with them anywhere. Most people feel uncomfortable with disability and it isn’t their fault. Our society values beauty, athleticism, and strength. We do nothing to teach our children to deal with differences, especially in appearance.

My life can’t get better, so I have to deal with what is now. If there were a grant to modify my apartment, someone would have found it by now. As usual, I am chasing something that doesn’t exist. My goals have to be simple – clean out the apartment from all the stuff I have been “meaning” to sell on eBay. I will read books I have been “meaning” to read. I will stay where I am; I have no strength to move. And when it gets impossible to be cared for at home, I will go to a facility.

I will continue to write, but I don’t think I will publish a book. I don’t know what I was thinking when I thought I could actually sell a book! I don’t know what I was thinking when I thought I would move to Manhattan; I don’t know how I thought I could ever do something like that..

There is a part of me that imagines people laughing at me, thinking “well, yeah…….helloooooo”. Well, go ahead and laugh. I had dreams. They gave me something to obsess about and, okay, waste time and energy. So now I am getting up and dusting myself off. I read about people who raise money with the help of friends and associates. Okay, so that won’t happen here. I hear of people who have formed “Share the Care” groups, and think “hey, I can do that!. Well, I guess I can’t.

My aides are employees; they are not friends, and probably shouldn’t be. They come in, do their hobs, and go back to their lives. They don’t want to go out with me; they don’t want to go out to eat with me; they have their own people to hang out with. They sit near me and talk on cell-phones and text message people in their own lives.

I do have things to look forward to. I can’t wait for Sunday at 8 [The Amazing Race] or the third Tuesday of the month [Beth Israel ALS support group] or the first Monday [MDA/ALS support group. I look for an email from a frien when I open my computer each day, but don’t expect a visit or an invitation to anyone’s house. People promised to take me here, there, and everywhere. They didn’t realize how hard it would be, and neither did I. And yet, it’s actually easier than people think, for me to get around, and it doesn’t take much to entertain me. But they don’t know to find out if a venue is handicap-accessible. Or maybe they are afraid that, if they give a little, I would be thirsty for more. Or maybe they just don’t have the patience or time, like my friend at Dunkin Donuts, for someone who takes twice as long to do anything.

It’s not my fault that I got this, but it’s not their faults either. They have enough stress to deal with, and want a relaxing afternoon or evening. They don’t need someone around that they have to worry about.

All this does not mean that I love the situation. My apartment still stinks. It’s small and it’s dark. My mini-blinds are filthy, and the blind in the kitchen is broken. I haven’t had the urge to change them. My neighborhood still makes me feel as if I am in some foreign country. I am still isolated. I still can’t get into the kitchen or the bathroom. But that’s the way it will be for a long, time, and maybe for the rest of my life.

Monday, December 3, 2007


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.