Friday, September 28, 2007

We Can't Go Back and Change the Past

There is a new TV series called “Journeyman” You can read my review at http://www.associatedcontent.com/article/395381/fall_tv_journeyman.html. The subject of time travel has always been a passion of mine. And it is not for the science-fiction aspect of time travel; it is because I love history, and I would love to have been around in the early 1900s, and I would love to go back to the 1960s as a more mature adult, rather than a child and pre-teen who really couldn’t go out on my own and be a groupie. But I think the reason time travel is so appealing is that we would all like to go back to the past with today’s wisdom. Then we could change the outcome of the present and the future.

But, since we can’t do that, we have to live from our mistakes and errors in judgment. Hopefully, we learn from the past. When we don’t, we repeat destructive patterns. We can live in a world of “shoulda’, coulda’, woulda’” , or we can dust ourselves off and move on. I have thrown out so many things in the past few months to remind me of money spent on frivolous things, or delusions I had. I took acting classes and performed in community theater and had headshots taken with the delusion that I would do it professionally one day. I took art classes to unleash my creativity. I unleashed it, but I don’t even want to think of the money I spent on classes and supplies, and time. I was looking for pleasure outside of myself.

And my latest delusion – that I could find a “better life” if I moved out of here. I learned that selling a co-op and moving were more than I could handle. I got another offer this week, and turned it down. In fact, I took the apartment off the market and Antoinette, the technology expert (and a degreed engineer) at the ALS Association, came over to assess my situation. I will have to have the good part of a wall removed, but it’s do-able. I can make the bathroom and kitchen accessible. I will pay the super to do the work; but the board could stand in my way once again, because they have to approve the work. However, I have grounds to exert rights if they prevent me from alterations for accessibility. With the apartment sale, I was up against a brick wall, and I couldn’t fight it. In the fall newsletter of the building, there is a statement, which goes something like this “although ________ Management [which manages this building] is also a real estate agency, this has no bearing in the board’s decision to approve a buyer. All applications are reviewed equally, and decisions made without building management present”.

So there it was. Hiring the management company as my realtor would not give me an advantage; they could keep rejecting applicants. I couldn’t put myself through that again; it was too stressful, and my ALS has gotten worse in the past few months. And the moving! Sure I had people who said they would help, but in the end, the burden falls on me; people have their own stuff to take care of.

So now is the time to fix up my living space and make it “home”, because my next move, if there is even a next move at all, will probably be to a hospice residence. And again, if I knew then what I know now, I wouldn’t have wasted the last nine months trying to sell this place, not to mention a $35 charge to the building for each open house (there were 6), and exhausting trips (4 of those) to look at rentals. That is time I can never get back.

Monday, September 24, 2007

please read my article about the reality show "Kid Nation"
Here's the link
you can access all my articles there.

Still moving toward holding on to my apartment. After all, it's a good investment and I have equity. I could remove the wall between the kitchen and bathroom, and put in a moveable partition. It's worth it. I think moving will stress me out. And if I live three more years, I could run out of money. Makes me nervous. Now, how to break this to the realtor, and deal with the board, who may not approve any modifications....another story

Sunday, September 23, 2007

dirty hair

I watched a TV show last night called “Kid Nation” about 40 children between the ages of 8 and 14 who were dropped off on the middle of a ghost town with no running water.

Although I do have running water in my house, I can’t get to it. So my day aide has to run back and forth with basins of water to wash me. Very nineteenth century!!! And here is the disgusting part: I have not been able to wash my hair since my salon appointment over a week ago. So Ellita and I set off for the salon yesterday. It started to rain, so we had to turn back. We have rescheduled for today, and I will literally go nuts if we don’t get there.

Well, as I write this, my hair-washing plans have just been trashed. The elevator has broken on my side of the building, and I have to get to the basement in order to get out to the salon. We have no idea when it will be repaired, since it’s Sunday. It is so frustrating to know I live on the ground floor, but I still can’t get out to do a basic thing like get my hair washed.

Friday, September 21, 2007

filthy hair

I am looking at the possibility of reconstructing my apartment for better accessibility, since I am so totally disgusted with this sales process, and I don’t know if this board will ever approve a buyer, when I do find another one. A woman from the open house a couple of weeks ago, made a lowball offer. I asked the realtor to negotiate her up in price, but I haven’t heard from him.

I am so totally exhausted, and my breathing is getting worse, and I don’t feel as if I will survive the turmoil of a move at this point. I have loads of people who have offered to help, but I have no reason to believe anyone will be able to come through. Lives all seem so crazy these days.

So I am thinking of renovating, which would also have to be approved by my board. But I feel I will be more capable of a legal fight if they try to stop me, because I think if I were trying to do construction to make the apartment accessible, I would have the right to fight them.

Of course, there is the issue of where I am going to find the money for such a job. I seem to remember that there are organizations that have grants for this kind of thing. The work has to be done by a licensed contractor, and all licenses and plans have to be approved by the board. When I had my tub removed and the stall shower installed, it was a long process – a few months, in fact.

In the meantime, since my fall a week ago Thursday, I have not been in my bathroom. This means sponge-baths for 9 days now. My hair was washed at the salon last Saturday, when I had it cut and colored. But tomorrow will be a week of no hair-washing. This is the longest I have ever gone without washing my hair in my entire life. I feel terrible, and the hair is starting to smell. I can’t get close enough to a sink to wash it. So tomorrow, I have to get to a salon. It’s Yom Kippur, but I have lost all Jewish identity with this disease. Even if I wanted to go to a local temple, I don’t see an accessible entrance on any of them.

All I keep thinking of at this moment is my filthy hair, and a body that hasn’t been properly showered in 9 days, and may never again see a shower if I don’t move, or get my apartment fixed up, both of which would take months anyway. I never dreamed that my needs could ever be so basic and primitive.

Friday, September 14, 2007


Yesterday morning, Lynette was able to get me into the bathroom, but when I had a problem making the turn into the shower, I suggested she wash me down while I sat on the toilet. But she was insistent that I should get into the shower. She helped me, and I got in, but I could tell that I was weak. So, when it came time to get out, my ankle twisted and my feet gave way. Somehow, I lost me balance and my handhold on the sink let loose, and I fell into the shower so fast that Lynette couldn’t catch me. At that point, Ellita had walked in, so they both got me up and on the toilet. I was totally exhausted, but eventually we got me out of the bathroom. It’s clear now – no more bathroom. If I am strong enough to get in, there’s no guarantee that I will get out. This morning, Lynette gave me a bed bath, but I couldn’t breathe while I was lying down. And it was so difficult to turn me over, and harder still for me to hold on to stay turned over. Then, I had trouble loosening up to bend my knees to get up off the bed. We are going to have to bring the Hoyer lift up from the basement.

It is so difficult to tend to me now. I feel the aides are really beginning to feel the strain, and one of them seems angry and moody. I have stopped asking her if she is okay, because she just nods her head. I never know if she is unhappy with the work, or me, or something that has nothing to do with me—something from her personal life that she has carried to work with her. All I know is that I don’t like to ask for anything when she is like that. I have expressed to a few people that I feel “shut in” and they tell me to go out to the store with my aide. But when we are out, she walks behind me talking on her cell phone. So I stay inside, because there isn’t even a place to sit outside near my building.

The new realtor brought a woman over yesterday who had seen the apartment during the open house on Sunday. She came with a tape measure. So she is very interested. But then there are those six board members. As if I needed another reminder that my life is not my own, I have to hope that those six board members don’t reject her too, forcing me to stay in a world of bed baths and asking for snacks from the kitchen like a three-year-old. And maybe I had better lay off the snacks anyway and lose some weight so I can be moved.

I joined a group online yesterday to support Barack Obama for president. But then Carol Creamer reminded me that he is not a great friend of the middle class. I don’t feel that I belong to the middle-class anymore. I am definitely a member of a disenfranchised underclass right now, but it was the disregard for the middle class that put me there. So, yes, I still see the need to advocate for the middle class. This leads me back to Hillary, although I don’t think she would give a hoot about my situation. On the surface, I am well cared-for, and my basic needs are taken care of, even though my spirit is destroyed.

Wednesday, September 12, 2007


I had the first “open house” with the new realtor/management company. So far, no firm offers, so I am resigned to being here for a while. In the meantime, I may have to do more to make it all look presentable. Like finally getting rid of the desk, and getting wireless set up here so that I am not confined to this one desk. I

In the effort to make life somewhat tolerable, we have instituted new strategies. First a new morning routine. Now, the night aide wakes me at 6:00am to get me out of bed and into my wheelchair, We hve also raised the bed to make it easier for me to get out of it. Then, slowly and carefully, we get me into the bathroom and, hopefully into the shower. If not, the aide sponges me down outside the shower. At about 6:45 the day aide comes. So for about 15 minutes, I have two aides to get me out of the bathroom, when I am most exhausted.

If I don’t find a buyer for the apartment this fall, I probably won’t find one until spring. So I am operating as if I am staying at least another 6 months. And, most of all, I have to pray that my feet don’t totally give out and/or I don’t become totally bed-bound.

I am also operating on the assumption that I will be alone with myself at least until the spring. There is literally nothing to do in my immediate area, no real parks and certainly no pretty places to sit outside. So I am finding things to occupy my time solitarily. If I am going to be stuck inside I am aiming to write more o my book and scan more photos. I am trying to get through an on-line course in Photoshop Elements, and I am getting totally frustrated!!! I wish I could get myself to a class, but I don’t see that happening.

And IO am conflicted about what world I belong in. My two monthly ALS support groups are my social life, but I also want to go places where I am not just about ALS. My mind and my intellect still need stimulation, and I still appreciate art and beauty.

We lost two people in the ALS community this week. Both people had reached the point where they just couldn’t take it anymore, and refused nutrition. I will miss them both, but I am glad they were able to choose when it was time to go,

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.