Friday, August 31, 2007

Co-op board woes, still

I can’t remember the last time I felt so despondent, frustrated, and just plain powerless. I will never know why the co-op board rejected my buyer. He is a doctor with a six-figure salary and a debt-to-income ratio of 15%. I had to let go of the Roosevelt Island apartment. It had been so hard to find a landlord who would take me with my only income being my disability check. I was close to a beautiful apartment about three weeks ago, and I didn’t get past the final approval. So I was ecstatic that this building would work with me.

So now I am back to square one, showing the apartment all over again. My realtor is going to re-submit the buyer’s application with additional assets this week. But I don’t know what my board wants. They are not obligated to tell me either. My email to the board members re-explaining my situation, and asking for their help in telling me what they are looking for, was ignored. I have lived in this building for 23 years, and these are my neighbors!

For someone in my condition, there are even more complications with going to stay somewhere else temporarily. If I went to the family out of NYC, the bureaucracy involved with getting my case transferred, would be a mess. By the time it was straightened out, I would probably have the apartment sold, and ready to come back. And I would lose my CD-PAP (consumer-directed care plan), and the aides with whom I have an established relationship. They would all get different jobs while I was away, and I probably would not get them back. Ditto for the social worker’s suggestion that I go to a nursing home for “respite care”. Not to mention that other people’s homes aren’t modified for accessibility, and NOBODY KNOWS how disruptive the presence of an ALS patient is in the home.

So I met yesterday with the real estate division of the company that manages my building. Maybe they can find a buyer more “suitable”, that the board will approve. Maybe they are in te “inside track” and can figure out what this board, who rejected my buyer without even an interview, wants. And it seems that I can get into the bathroom and/or shower every few days or so; on the other days, I get sponge-bathed. As this disease progresses, I begin to accept things that, just a few months ago, were unacceptable to me. Like bathing outside the bathroom, or sitting on a portable commode. Things I am happy no one ever told me would happen. Things I would never have imagined I would think are normal and okay.

Sunday, August 26, 2007

Co-op Sales Woes

ferncohen.comSunday, August 26, 2007 7:51 AM CDT

I've had a terrible blow.
After nine months of open houses, viewings, and numerous measures to make this apartment more attractive to buyers-- not to mention a couple of price-drops, we finally found the perfect buyer. He is a physician, single, excellent credit, and very low debt-to-income ratio. My realtor, Tim of Citi-Habitats

It had also been a long road to find a suitable apartment. There too, Tim and Peter from Citi-Habitats had some frustrations. So imagine my relief when we found the perfect apartment in Roosevelt Island, where everything is wheelchair-friendly-- it was purposely designed that way! As far as I was concerned, this was a disabled person's utopia!!!

About the same time we found this place, my buyer submitted his application package to my co-op board. A few days later Tim received an email from my management company, the language of which indicated that my buyer had been approved.
Excitedly, I arranged for the lease-signing on Roosevelt Island.

I was literally sitting in the Access-a-Ride van to sign the lease, when Tim called my cell phone to say that he called the management company for something, and was told that my buyer was rejected the night before, with no interview!

We are all baffled. Furthermore, Tim and my attorney have called the office, and their calls have not been returned. I am told that the board does not have to give a reason for the denial, but we would like to know if there is something we can do to make the application more desirable. Since they did not interview him, it's not about liking or disliking the person.

I am crushed. I don't even know if Tim is willing to stay involved. This management company, who came on board with the building after I contracted with Citi-Habitats, has their own real estate agency. We are not obligated to use them, but if I had known this service existed at the beginning, I would have used them.

Tim told me that he was cool if I wanted to turn it over to them to sell, because he knows that I have no time to fool around. I sent an email to the management and the co-op board saying that I really needed their help. I explained what they already know: that I have a serious fatal, and disabling disease, which has made this apartment difficult for me. I further explained that I could no longer get into my kitchen or bathroom safely, and needed to sell the apartment to enable me to move to a more suitable place. I asked for their cooperation in telling me what I could do to market the apartment better, and even offered to drop my present broker and use them, even though it meant that all the work the broker did for the last nine months would have been for nothing.

Despite the fact, that the building manager has not returned our calls in the last couple of days, he responded quickly to my last email, from his Blackberry no less.

He said he would contact me Monday to "let you know how we can assist you" I will hear what he has to say, but I will have someone with me who can also listen, and take notes. However, Tim wants another stab at presenting the buyer, and I think he should have that courtesy. Therefore, I am not going anywhere right now. Sponge-baths and portable commode will be part of my life a little longer.

Friday, August 17, 2007


In thinking about changes and adjustments with ALS, I am reminded of a story I heard on the radio about 15 years ago while I was driving around Atlanta during a sales-blitz for my then-employer Cayman Airways. At the time, I roared with laughter, but I don’t find it so amusing anymore. The radio guy was talking about Walter Hudson, a 1200-pound man in Hempstead, Long Island. Hudson had gained so much weight that he was eventually confined to his bed. Before that, he worked, until one day he couldn’t fit through the bedroom door to leave. Well, the radio DJ said “I’m trying to imagine what happened the day Walter Hudson realized he wouldn’t make it to work that day because he couldn’t get through the door…..hmmmm…….let’s all imagine the phone call ‘Hey, this is Walter. I’m calling to say that I’m not coming to work today. I’m calling in fat!”

I don’t find it so funny anymore. One day I had to call up my school and tell them I wasn’t going to make it to work anymore. Not because I didn’t fit out the door anymore. I couldn’t make it to wor anymore because my school wasn’t accessible and it wasn’t safe anymore to fold up my walker, have someone help me up the two flights of steps—one outside and one inside—just to get into the school building. Once inside, there was no elevator, so I couldn’t get up to the third floor where the classrooms were. My principal sent me classes of students to the auditorium, with 10 textbooks for 60 students. So when it was obvious the Department of Ed was not going to find an accessible school for me, I had it. So you could say I called in “fed up” or “resigned to the illness”.

And so it is with ALS. One day you can; the next day you can’t. If ALS affords us any luxury, it is the luxury of gradual change. The slower the progression, the longer you have to adjust to each change. At the ALS clinic, they tell you to always prepare for the worst-case scenario, which is bound to come sooner or later. Because of the time it takes to get equipment, you order the wheelchair while you can still walk, and the augmentative speaking device, or “aug-comm” while you can still speak. Between the first evaluation, through the paperwork and approval by Medicare, to final delivery, can be several months. In my case, it took a year to get my wheelchair. Since I needed one before I got my own, I had to take advantage of the ALS loan closet.

There is a threshold you cross, that reminds you the disease is progressing. One day your voice is a little too nasal, on another day, you sound drunk. Until one day, too many people are not understanding a word that comes out of your mouth. One day you are walking with a cane; the next day you are falling way too much. You graduate to a walker, until one day, you can’t get down one block. And finally, you can’t even stand on your own. It is difficult to plan for that “worst-case scenario”, because you can’t imagine it ever happening. But it does; it always does.

Thursday, August 9, 2007

Do Unto Others


A few days ago, the widow whose husband’s funeral I attended, came to my door. She thanked me for coming, I asked her how she was doing, and with her voice cracking, she said she wasn’t doing so well. She thanked me for expressing concern, and then said “If there is anything I can do to help you, please let me know.”

Maybe it’s a good thing I can’t speak, because I wanted to say “that would have been nice to hear three years ago”. Of course, I won’t call on her, because by now I have adjusted to not expecting anything from anybody. But if I showed her I can be a good neighbor, and if it made her think for one moment about helping someone who could use a little help, then I did some good by going to her husband’s funeral.

In these times of air-conditioning, computers, and cell phones, we tend to forget the importance of face-to-face and person-to-person contact. It is so easy to get wrapped up in our own little worlds, and forget about that sick person, that elderly person, that widow or widower who is left alone after the death of a spouse.

I am guilty of this too. I wish I had looked in on my elderly neighbors when I had the strength to do so. One of the reasons I attended my neighbor’s funeral was that I felt it was the right thing to do. And now that the mourning period is over, and the visitors have stopped coming, I’m sure Mrs. G. is going to go through a painful depression.

So I thought I would take this opportunity to enlighten those who never know what to do, or what to say. I can only speak for someone in my situation, but a lot can apply to your friends, relatives and neighbors with cancer, MS, or any chronic illness, or to anyone who lost someone through death. Sometimes all you need to do is bring some food, dessert, or beverage, and watch TV or a DVD, go to a nearby park, or store. I know, in my case, I don’t need anybody to bring me groceries anymore, since I have aides round the clock, but an elderly neighbor might be very grateful for that, especially in nasty weather.

Sometimes, your neighbor doesn’t need someone to run errands. Sometimes, your neighbor or friend wants to have some company for a little while. Aides and nurses are not friends, and they don’t take the place of a social life. I know that I am very grateful when a friend comes to watch a DVD with me. In my case, and in the case of anyone who really can’t go places alone, a trip to see a movie is golden. When possible, take your friend for a stroll on a boardwalk, or just to a park. We chronically-ill people tend to stay to ourselves inside when we don’t have anywhere to go, like to the doctor’s office. I make a weekly trip to see a therapist in Manhattan. Most weeks, that is my only outing, This is the first summer in my entire life that I have not seen the ocean. I look forward to my two support groups a month; it is when I get to see my friends in the ALS community. That is my time to share about my ALS.

The rest of the time, I am not my disease. Some people want or need to talk about the illness, the surgery, the cancer. But there is a person inside, and I get my “ALS fix” at my support groups. Otherwise, I watch TV, follow politics and current events, and love to look at art and photography. Jody from the ALS Association met me at PS1 Museum a few weeks ago, and we had a great time. I didn’t talk about my ALS, although I can’t hide the fact that I have it. And unfortunately ALS is not pretty, and makes other people nervous and uncomfortable.