Tuesday, April 24, 2007

bathroom hell

I am living in bathroom hell. I had a leaky ceiling for the third time in two years. By now the waater is raining down in three places and the bathroom floor is lined with buckets. If I sit on the toilet, the gook drips on my head. I am very afraid that this is germ-laden sewage. I wrote a letter to our new management company and they are on the super’s back to get this done. I don’t like to play the ALS card, but this time I pulled it right out of the deck. And Sunday, we were stuck with an already-scheduled open house and had to show the apartment with the water damage and part of the ceiling missing. And now, I have no ceiling over my toilet at all and the super has to go upstairs and rip apart the lady’s bathroom to find the leak and try to patch it up and then he might have to replace pipe.

Tim, my realtor has been helping me by calling the management company and Jeanellen offered to make whatever phone calls I need too. Tim has been a huge help and he also brings people over during the week to see the place too.

I have been slowly emptying out my storage space in the basement and throwing out almost everything. It is nearly empty and next Judy (my Jewish Federation volunteer) and I will tackle the closets. I am dismantling my photo albums and keeping the few that I want to scan.

Yesterday I had the most fun I have had in a long time. Jeanellen picked me up and we went out to North Babylon High School, where Jeanellen’s mom worked, and did a presentation for Ride for Life and signed up about 100 student volunteers to walk with us and to collect donations. Then we had a late lunch at a pub and then we drove into Manhattan for my MDA/ALS support group, where Jeanellen spoke about the Ride, and then Jeanellen drove me home. I was exhausted but Jeanellen and two teachers from NBHS, who were friends of Jeanellen’s mom, joined us and we had a blast. They were all so close to Jeanellen’s mom before she died that they consider it their mission now to help me out too. And, since they are not freaked out by ALS, they were perfectly relaxed around me. And so it seems to be going; the majority of my support system has become those from the ALS community, who aren’t nervous around me, know I have just a little time left and know that I need to have some good laughs before I go. They know to get me my writing board when they see me struggling to say something. They include me in their conversations and wait for me to type out my lines on my Mercury talking computer, and know when I am getting tired. I never felt on Monday that I was an observer; I felt included.

And I am accepting the myths that are just not true -- the ways everybody thinks happen when someone gets a disease like ALS. Friends and family do not rally around and people say things they don’t really mean because they don’t know what else to say. They really are NOT going to have you over their house for Passover and they aren’t going to come pick you up for days at the beach or trips to Central Park. They say they will because they don’t know what else to say. They can’t tell you “Listen the friendship is over because I don’t have room in my life for someone in a wheelchair” or they don’t realize that getting you in and out of the car would be so difficult. And they certainly never thought they would have to see you push food around your mouth or take two hours to eat a meal and get half of it on your shirt. And after the first invite, there might not be any more. Unless, of course, your hosts just happened to have had a relative with a crippling illness and know how it is. This is not an attractive disease and comes with no hope. They know you are dying; there is no hope of surgery or chemotherapy and no one likes to be reminded that some diseases have no hope, and so they feel helpless. And lastly, nobody wants to look at you and know that it could have been him or her. So I am grateful for the people who are around, including new friends I have made, and for the use of my hands so I can still type. And I am thankful that nobody makes those empty promises anymore. I have found things I can do alone and one day when I am at the end, bedridden, I will have my audiobooks and The Amazing Race and all the other television shows I have gotten into.

Wednesday, April 18, 2007

fragility of life

One of the last things on your mind when you are at college at 19,20, or 21 years old, is dying. And even if you are morbid enough to think about death and dying, the last thing you expect is for some crazed and disturbed student to come into your classroom and blow you away! All yesterday, as I was watching the memorial services for the slaughtered at Virginia Tech, I thought back to my days as an undergraduate at the State University of New York (SUNY) at Stony Brook, and tried to imagine myself at 19 or 20, walking to class and then sitting there listening to my French professor (I was a French major, and one of the classrooms attacked was a French class)

Do we need any more reminders of the fragility of life. Those kids will never live to graduate college. They don’t have the luxury that I have been given-- that is, the time to get my affairs in order before I leave this earth. And they haven’t been allowed to live the almost-52 years that I have. And how about that Engineering teacher who survived the Nazis only to live to be a hero; he died trying to save the lives of his students.

But what continues to haunt me is that there were so many signs that the shooter was troubled -- rejection of others, and self-imposed solitude. And now it is coming out that he may have been the target of bullies. Are we so self-absorbed that we don’t take the time to comfort someone around us who may be hurting? So much was this kid hurting that he eventually built a wall around himself and wouldn’t let anyone in. He was probably so used to distrusting everyone that he drove away anybody who tried to befriend him, as a former roommate tried to do. He was so afraid of rejection by women that he became a stalker!

Do we value privacy so much that a student writes obviously disturbed essays and plays, and we are afraid that if we report it, we are afraid of violation? I personally read a play that he wrote for one of his classes -- it was on the web. I was extremely disturbed by the content of the play. I don’t know what I would have done if I had been the course instructor. I know that I referred a student to the guidance counselor once because his English teacher showed me something he had written where he had talked about killing his mother. The guidance counselor referred him to the principal, who did nothing. And when I followed up with the principal to make sure something was being done for him -counseling, referral etc, the principal refused to tell me what, if anything, was being done. All she could say was “Don’t worry, Ms. Cohen, I have it on file that you referred him, so you are covered”. I found out later that nothing was done, and I feared for Jeffrey, even though my butt was covered. And that’s what is important to everyone -- cover your butt and don’t get involved in something that’s not your problem.

On other notes, the weather is starting to calm down. I have another open house this Saturday and hopefully that will make up for the one we had last Sunday during the storm. Now that I no longer file income tax, because Social Security is my only income, the benefit of owning my apartment is not relevant anymore. I am getting ready for the Ride for Life, and they tell me I have to raise $500. It’s really difficult for me to ask for donations when I am going to have to raises money all over again for the Walk to D’Feet for September 30. And Washington DC is coming and on May 9, we are going to have front row outside of the Today Show, and be interviewed by Al Roker. Starting next week and going into the first week of June, Duane Reade Drug stores will be selling paper feet with $1 donations to ALS, followed by a similar promotion at North Fork Bank/

Friday, April 13, 2007

friends' deaths

Sherry Ketzbeau

When you have a terminal illness, and you correspond with, and/or become friends with another person with the same illness, you are bound to have to say goodbye. I never met Sherry in person, but she made me feel so not alone with this disease. She lived in Michigan on a farm and raised show bunnies, so I enjoyed looking at her website, even though I am not in favor of rabbit-breeding.

Sherry was a wife, a mother and a grandmother. I am none of those. I think I recall that Sherry lived 6 or 7 years with ALS.

There are 6,000 people a year dying of ALS. It seems as if every support group meeting I attend brings news of another death and every week on my yahoo group someone else dies. There are those who were diagnosed after me and are already gone. Although I am grateful I am still here, I mourn every time I hear of a PALS (person with ALS) gone.

Stem Cell Research -- Good News and Terrible News

This Tuesday, April 10, the U.S. Senate voted Wednesday on the Stem Cell Enhancement Bill (S.5). it passed 63 - 34, with strong bi-partisan support. Here's the link to see how your Senator voted: http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=110&session=1&vote=00127

OK that’s the good news. And now for the terrible news: this is below the magic number of 67 needed to override a promised Presidential veto. Does all this sound familiar and discouraging? Yes, the vote was similar last fall, the first time the Senate considered this bill. It was followed by Bush's first ever presidential veto. I guess this is like the fight for the handicapped-accessible door in my building -- i.e. unless disease touches you personally, you think it never will.

Thursday, April 12, 2007

censorship,phone, wheelchair

It came to my attention yesterday by a friend that maybe my thoughts and feelings might be causing people to “censor” what they tell me. And it was further suggested that may be why people are not visiting, having me to visit them, or even to email me. So I would say this -- common sense prevails. Yes, if I am sitting in all summer and friend emails me and says “I had everyone (people who know me) over for a barbecue and they all send their regards”. Yes, that could be painful, because I would have gone in earlier days. And if I am sitting in with an aide on New Years Eve and you tell me the details of the wonderful New Year’s Eve party you attended, that could be a little insensitive. But there are so many other things to talk about. All I can say is, let common sense prevail. Imus said something hurtful, and he is off the air. If the comment he made were degrading to disabled people, I don’t think there would have been such an uproar. It’s easier to just avoid us and make believe we’re not there.

You can find out what is going on with me without ever having to deal with me directly. That way you don’t have to worry about saying or doing the wrong thing. I am amazed at how many read this -- they obviously care about what I’m up to. I am not going to censor MY words. Just think -- if you don’t like reading it, you don’t have to. It’s like pushing the “easy button” on the Staples® commercial. Of course many of you figured that out and I don’t hear from you anymore. So be it. I hope by the time my nieces and nephew reach adulthood, people will know what to do and what to say to disabled friends.

On that note, let me say that Haley and Claude picked me up on Saturday for dinner in Little Italy. It was nice to get out into the city, and to have a nice dinner. I hadn’t seen the family since Christmas Day, so it was nice to get together with them. I go once a week to see my therapist, Dr. L, and to clinic appointments four times a year and support groups twice a month. But I never get to stay and enjoy the city, and I do love Manhattan so much. The forces seem to be against me -- there is a storm brewing on Sunday for my next “open house” this Sunday. But we dropped the price by $15,000 and the realtor says he has been getting a lot of calls. I have been continuing to throw out “stuff” so that I will have less to move. I will have to pay the moving company to pack and unpack me, since I can’t do it and I don’t have anybody to help me.

Now, on to the update -- never a dull moment. My phone stopped working on Saturday and I checked to see if Ms. Chelsea got to it as she did once before. But, no -she didn’t. Nancy and MaryAnn did an excellent job of hiding the wires from her. So we could not figure it out and Monday I sent an email to Verizon and arranged an appointment online for Tuesday. When I came back from my therapy appointment Monday afternoon, there was a message from Verizon that a tech had been to the building but couldn’t get in the apartment or the garage where the phone cables are located, because I was gone and the doorman is off Monday. So the tech came and found a spot by my bathroom where the phone cord broke. He assumed it was rabbit-chewing, but Chelsea never goes there, so we figured out that spot is where the wheelchair hits, where it has to park, and where I have to disembark and hang on to a grab bar in the narrow corridor to get my feet going three or four sidesteps into the bathroom. These three or four steps are so exhausting that sometimes I barely make it in there, and land on the toilet catching my breath. I have to go through this All this because the wheelchair won’t fit in the hallway and in the bathroom.

The loss of phone service for three days was not a serious issue because I have the cell phone, and the computer is connected to Time Warner. But I was concerned because my emergency alert system is dependent on the phone, and my aides go out shopping and to do laundry. Yesterday, Ellita went to the laundromat and had to wait for a dryer, so she was gone a while. I had forgotten to tell her to leave something to drink and something to snack on. Well, I can’t get in the kitchen. And even if I could get in there, I can’t reach the cups and straws anyway. So, I waited. So much for independence. I was also concerned about the fax machine when the phone was out. I use the fax to send the aides’ time sheets to Concepts, and my bills to NYSARC.

My wheelchair was picked up for new batteries and repair to the joystick box. I will have to pay for the batteries out-of-pocket -- $385.00 because a year has not passed yet, so Medicare won’t pay. I am also trying to get funds for a laptop, and a digital camera to replace the one that was stolen. I hope to be doing Ride For Life from Nassau County to Manhattan, May 4-7.

Sunday, April 8, 2007

No more relationships

Well I got through a Passover and Easter with some psychic pain as I do most holidays, but it’s over and I am okay. My aides are on Concepts, and no longer afraid that the “agency” will find out if they go out shopping or out of the immediate area with me.

I am hoping that next Sunday’s open house will be the last one I will have to have. I dropped the price a little to get the apartment sold and get out of this building. Twenty-two years here, loots of neighbors, but ALS turned me into a non-person. I don’t know anything about anyone anymore, because no one shares anything about their lives anymore.

Sure, I have people who fly in and out of here, to do this or that for me, and then to go back to their lives. I am this “obligation”, another chore they need to fit in, between the grocery and the laundry. But at least I have people who help with these things. So I am adjusting to my life as a “chore”. I sat in today with my aide watching television movies. My aides are my new social circle. I am more involved with the teams on the “Amazing Race” or the contestants of “American Idol”. I know more about their lives than the people I was once close to. The people on TV have become my new friends. And writing for Metblog NYC and various sites online have become my new occupations. I know people are reading my journals; they know all about what is happening with me. I just have no idea what is happening with them.

Tuesday, April 3, 2007


So on Sunday, Louise came over and we went down to the basement storage cage that I rent for $25.00 in my building. I knew I had a lot of books down there that I could list on eBay. But in addition to that, I also knew that I had some unsold crap from garage sales and flea markets, that I was saving for the next garage sale. Back when my mom was alive, Haley and she and I would have a garage sale once a year. And a few years ago, Haley and I rented a booth two Saturdays at a church on Union Turnpike where we sold used things, and even some new kids’ jewelry that we purchased from eBay in lots.

But then we got to all the stuff I acquired for a future of scrapbooking, stamping, and collaging. As difficult as it is to accept that I will never do that stuff, I can look at it and either discard it or see if it is fit for eBay. Then the bag of supplies from teaching: a bunch of staplers, hole punchers and construction paper. And lastly, boxes of sentimental items -- old programs from my days acting in community theater, old birthday cards and letters I have received, and albums of photos, many of which I will probably scan. I realize that I have become very un-sentimental. Those photos and cards are meaningful to nobody but me. And I won’t be around very much longer. And with every box, Louise kept asking “Don’t you want to save these?” Finally, I said “Don’t you understand I am dying? What am I saving anything for? To put in my grave?”

These things mean nothing to anyone else, and no one else has any use for them. There is nobody in the future who can look at them and have fond memories of me. Why do we save things anyway? I guess we save them to take out and look at in our old age, or maybe hoping we may see people one day and we can reminisce. Or maybe we save things to pass down to future generations, so that they can have memories of us. I couldn’t think of any reason to save anything.

Sunday, April 1, 2007

Concepts-- Finally


As of Saturday morning, my aides are officially on Concepts in Independence. No more dealing with Leslie or VNS. The upside is no more on-call aides. The downside is no more on-call aides. If an aide is out, she gets one of the other aides to fill in. So I need some other people on my list as “on-calls”. Also, Ellita is going to Guyana for two weeks in July.

So I am putting out a call here. The only requirements are a social security number, over 18 years of age, and a willingness to be with me for a twelve-hour shift either 7am-7pm or 7pm-7am. There are forms to fill out, one trip to the Astoria office to process papers and a physical exam in Rego Park. The pay right now is $10.60 an hour weekdays and 11.70 an hour weekends. Double time or double-time-and-a-half for certain holidays. There is no certification involved and anybody can do it, as long as it is not a parent, child (I have none), or in-law. If anyone reading this wants to get on the list in case of a needed substitute, and/or fill in a shift or two in July during Ellita’s absence, let me know or if you know anybody, put her in touch with me.

I have to work out something for Easter Sunday to give Ellita time off at least for part of the day, since I have no plans to go anywhere. I am a little melancholy about Passover. I would like to be at a seder but no invites. It is hard for me to go to a community seder due to the expense (me and an aide) and I have to know that the place is accessible for me and my wheelchair. Oh well, I have had to adjust to a lot over the last few years. And holidays are just another adjustment. Passover should mean sitting at a table with a sizable group of people. I have fun memories of that as a kid. The upside is that I am happy to be alive to see another Passover and Easter go by.

I am adjusting to whole new simpler life. I have found pleasure in interesting podcasts on my i-Pod (thank you again, Marji) and I find myself looking forward to certain tv shows -- I just started watching Lost this year and I still like Law and Order, CSI, American Idol, Without a Trace, and House. I have really gotten into The Amazing Race this season and I can’t believe I never watched it, or Lost, before. I really like the concept of Lost-- that you can start a whole new life where nobody knows you from before. I am sort of doing that to an extent. With the exception of a very few people who knew me before ALS who still keep in touch and come around, I have people in my life now who email me and check in. Some of them I have never met in person, and never will, and others have never known me walking and speaking. They all accept me the way I am. Maybe this is the way it is for me -- that people who knew me before can’t deal with who I am now. Or more likely, I was the one who always took the initiative in those relationships and now that I can’t drive, make the phone calls and the plans, those connections were never strong enough on the other side. With the exception, of course, of a few who can still hold up their end.