Wednesday, September 5, 2007


Before I post this, let me give a disclaimer. I appreciate everything everybody has done for me. Yes, I know there are people out there worse off than I – children with cancer, people dealing with ALS who have small children at home. And, finally, I acknowledge that people have lives, that the world owes me nothing, and that it is nobody’s fault that I have ALS. So I am just going to express what I feel. It is not directed to anyone in particular.

I am finding the need to reinvent myself. Due to Louise’s driving, and an aide accompanying, I was able to go to a Fourth of July party and a post-ride celebration. But, aside from those two afternoons, I have been stuck inside this apartment. Summer came, and summer went. This was the first summer of my life that I never saw the beach or the ocean. I don’t fit into normal society anymore. Despite everybody’s well meaning offers to come and get me out, to the beach, the park, the museum, it isn’t going to happen. So I have had to discover solitary activities: learning digital scrapbooking, reading, TV shows, etc. I am trying to find ways to get to the movies and other activities, without depending on the friends from my past.

That said, it was all the more frustrating this summer because I am hating this apartment, and this building. When I went to work every day, and came home at night, it was tolerable. Now that I am stuck inside, it is maddening. When I get out to go to the ATM or the grocery, I am reminded again how all the Americans are moving out and how Russian this neighborhood is. It hurts to know that 6 board members, my neighbors, hold my destiny in their hands. They decide whether or not I can move out. Two of them know me for the 23 years I have lived here. When I sat on the board, and even before when I was healthy, my neighbors stopped me in the hall, the elevator, in front of the building to to talk. I listened to their problems, exchanged stories with many fellow teachers who lived here, and fielded their complaints as a board member. Now, some of them look down when I pass, or talk to my aide about me, while I am sitting there. And now, six of them could give a rat’s ass tat I need a more appropriate place to live. There is some secret reason they rejected my applicant, a doctor with excellent financials. I don’t know why, and they refuse to tell me. I have hired the building manager as my realtor, and I hope that helps. Maybe he knows more of what this board wants. Maybe it will be more difficult to reject a buyer that he presents. I can only hope. This whole thing has been a mystery to me.

So I am finishing up a chapter in my book, which will NOT be about ALS. I have no heroic feats to write about – I am not brave or heroic. If writing has anything to do with my ALS, it is that ALS has forced me to stay still enough o finally write things down. I still feel lonely and sad, and hope soon I will have a bathroom I can get into easily, and a kitchen where I can get MY OWN snack, or my own cup of tea. And, most of all, I hope to find peace within myself and with myself, because someone in my condition can’t make new friends, and I can’t socialize any more with the “normal” world.

A friend who has been battling cancer asked me recently how I can stand going to my monthly support group. “I want to go places where nobody knows I have cancer”, he told me. I explained that I can’t do that, that the ALS community has become my social life because I can’t move in normal circles anymore. I can’t hide my ALS; it’s out there in everybody’s faces, and it causes fear, discomfort, and even disgust. I wanted to make him a tee-shirt that says “I have cancer” and dare him to wear it for one day, to see if the world doesn’t suddenly treat him differently. I wish I could walk around in a world that doesn’t know I’m different.

1 comment:

Anonymous said...

Hi! I have been searching the internet about ALS recently and came across you blog, and just wanted to say I think you are a remarkable and brave woman fighting this terrible disease. Friends come and go throughout life, but unfortunately very few friendships are strong enough to stand through a long journey of illness. I don't think your loss of friends means that you have made less impact on other peoples lives than most people have. Take care!