Tuesday, July 31, 2007

My Neighbor's Big Fat Soap Opera Funeral

ferncohen.com

My Neighbor’s Big Fat Jewish Soap Opera Funeral

Now normally I would not write about some funeral attended. But this one had a certain significance, both because of its soap opera quality and because of the many lessons to be learned from it.

I am going to use initials and pseudonyms only because I don’t want anyone googling the deceased husband and finding this story. So here goes.

Mr. and Mrs. G have lived in my building for about thirty years. They had one daughter J. who had virtually grown up under our noses. I have to say in all honesty that I don’t think that I have said more than three words to any of them in the twenty-three years I have been living here because they really were not very friendly and I never knew if they had something against me, or they thought their poop did not stink, or they were just plain introverted. But I guess with so many other neighbors and my own life, it was not important enough to try to find out, Fast forward to three years and my fight to make the building put an automatic door for handicapped accessibility, which I only won with the help of the NYC Commission on Human Rights, twenty-one months later. There are people who look at something like this and view it as an unnecessary expense to only benefit one resident, never thinking it could be them at some point. As it turns out, there are other residents of the building who are thankful that the automatic door is there because they use walkers and wheelchairs. It takes one persistent big-mouth like me.

So fast forward to our annual Christmas party r annual Christmas party, last December. Instead of taking place in the lobby, as was customary, it was in the basement board room. As a by-product of my battle, the building now has to make every building event accessible to all. Well within earshot of Ellita and me, Mrs. G. asks the board president why the party isn’t in the lobby and the board president nods over in my direction and tells her the venue had to be changed because of accessibility, and Mrs G. looks in my direction and scrunches up her nose. And they continued to turn their noses up when they ran into me.

So when there was a sign posted in the hallway that Mr. G suddenly died of a heart attack, and gave details of the funeral I must admit that my first reaction was “oh well” .
But then I thought it would be a nice gesture to go. So we booked the Access-a-ride van to the funeral I home, which was on the other side of Forest Hills, and off we went on Sunday morning. There were only six other neighbors there, which surprised me because Mr. and Mrs. G have lived in the building for thirty years. However a lot of the old-timers have either died or moved to Florida.

I think everyone was a little shocked to see me there and the widow said that she really appreciated my coming. We watched everybody pay their respects and then we filed into the chapel. There, beside the casket, the rabbi gave his benediction and turned the microphone to the widow Mrs G, who gave a very emotional and moving about her deceased husband. She told of how he was a “renaissance man”, how he loved the fine arts, music, and good books. She went on to speak about the deep love and admiration they had for one another, what a devoted husband and dedicated father he was, and how she would normally be spending Sunday morning eating scones and reading the New York Times. Lastly, she said how much she would miss this wonderful man, with whom she was – in her words – “joined at the hip”.

Then the daughter gave her speech about her devoted father who was not only loving to his wife, but always there to love and support his daughter. We were left with a warm feeling about a man who seemed to be the perfect family man, if not the friendliest neighbor,

Now, the whole time we were listening to these eulogies, we noticed a group of about twenty people sitting all together near the back of the chapel, away from everybody else. and in front of us. At the end of the daughter’s speech, one of the women in the group in front of me rose and walked up to the front. She asked for the microphone and I noticed a small altercation, and then I heard the mystery woman say “I’m his daughter too”.

She introduced herself as “R;’s first daughter” and pointed to the group sitting toward the back. She continued to introduce her husband, four other siblings and their spouses and children. She ended by saying “I wanted you all to meet us, because we are all R’s family too. We are the children and the grandchildren that R hasn’t bothered to contact in twenty-five years

You can imagine the shock around the chapel. I was even more shocked by the rabbi, who concluded the service with a final blessing and announcement of the burial and address of the shiva, which would be observed by, in his words” C. and R. ‘s only daughter, J. “

Sice I don’t mingle much anymore with the neighbors, and there is nowhere to sit by my building, I have really heard no commentary. I am sure there is more to this story, but I thought it was a great reminder that the past can come back to haunt us. Furthermore we can have friends and neighbors we think we know, but they can have all kinds of skeletons in their closets. And lasly, someone can seem like a perfect saint, and be anything but.

Friday, July 20, 2007

Apt search

ferncohen.com
Some dreams have to die. My dream of living in Manhattan has to be shelved, for now anyway. I went apartment hunting and saw apartments the size of walk-in closets for $2500 a month. I didn’t realize how good I have it, spacewise. So I will look in this same area for a retal, while putting myself on waiting lists for HUD and subsidized apartments in the city. Especially in a wheelchair, I need space, plus a kitchen and bathroom I can get the chair into.

If anyone has leads in the Forest Hills area, please send them my way.

Thursday, July 19, 2007

WOO-HOO Our Efforts in DC Realized--ALS Registry Act Passes

ferncohen.com
I am pleased to attach an e-mail I just received from the ALS Association
And I am proud to have been a part of this:



House Subcommittee Passes ALS Registry Act

We are extremely pleased to report that this morning, the House Energy and Commerce Committee Subcommittee on Health unanimously passed the ALS Registry Act (HR 2295). The bill is now cleared to move forward in the House and next will head to the full Energy and Commerce Committee. This is a tremendous victory and is one of the most critical steps in the legislative process, as most bills introduced in Congress never make it “through Subcommittee.”

During this morning’s session, Subcommittee Members repeatedly stressed the importance of establishing a national ALS registry in the fight for a treatment and cure and spoke of the personal connections many have developed with family and constituents who have been touched by the disease. Members also praised the efforts of The ALS Association and advocates for helping to lead the fight for the bill and for our continued outreach to Congress over the past two years. Since the ALS Registry Act did not specify funding levels for the registry beyond Fiscal Year 2008, the Subcommittee also agreed to authorize $16 million per year in FY 2009-2012 in addition to $25 million in Fiscal Year 2008.

The Subcommittee’s action reflects the strong bipartisan support generated by ALS Association Chapters and advocates from across the country. A total of 261 House Members – well over a majority – have signed on in support of the bill! The Advocacy Department will continue to work closely with the Committee as the bill moves forward.

In the meantime, it is important that Chapters and advocates continue to focus outreach on the Senate. Although we are now closer than ever before to passing the ALS Registry Act, we need to build additional support in the Senate. Currently nearly 40 Senators have cosponsored the ALS Registry Act (S. 1382) and we encourage Chapters and advocates to contact their Senators to ask them to cosponsor this critical bill.

Sample letters you can send to your Senators are available in the Advocacy Action Center of our website, here. A list of those Senators who have and have not cosponsored the bill also can be found in the Advocacy Action Center here.

Thank you to everyone who has contacted their Members of Congress. Your outreach is making a difference! We need you to continue to stay involved in our efforts and together we can pass the ALS Registry Act this year!

If you have any questions or would like additional information, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA.

Friday, July 13, 2007

ferncohen.com
Ok, first of all I am fine, and then some. But now I have even more reason to be infuriated at North Shore Forest Hell!!! And the Executive Director Robert Hettenbach, with whom I have already been in touch, will hear from me again.

Preparing for the event of a possible total tube-change, I arrived at Beth Israel’s Endoscopy unit with Ellita schlepping my bi-pap, in the event that I would have to “go under”, an event which frightened me to no end. It is risky for anyone to go under anesthesia; anesthesiologists are among the specialists who pay the ighest malpractice insurance premiums. And for a person with a FVC (forced vital capacity) of about 18%, it is especially risky.

And I had been instructed not to eat after breakfast. So it was 2:00pm and I hadn’t had anything since my Carnation Instant Breakfast at 8:30am. So I was very hungry.

Jody Wiesel, my friend and ALSA volunteer was there to meet me, along with Teresa Imperato, nurse extraordinaire from the ALS Clinic. I told them how much it meant for me to see them there. Jody said “You’re too important to us, for us not to be here”.

So Teresa tells me not to register but instead to lift my shirt and let her see the tube. I tell her it was leaking at the end, she brings me to Frank, the Physician’s Assistant, and asks if he has a cap for my tube. He has hundreds. In iteraaly less than three minutes, he tells me there is nothing wrong with the tube, snips off the end, puts on a new cap, and I am done! So the upshot is that Teresa has access to Frank’s supply of PEG caps, which she knows how to put on. Therefore, if it happens again, I only need to go to the ALS clinic, and Teresa will fix it for me. Ditto to anybody who reads this with a PEG tube; you only need to call the clinic; if it is a cap replacement, Teresa can do it. This makes me want to go to North Shore Forest Hills and scream.

So now we had 3 and-a-half hours until our access-a-ride pickup. We had lunch – I was starving—and then Ellita had her toenails done, while Jody and I explored the neighborhood around Stuyvesant Town/Peter Cooper Village, which has gone really upscale.

Thursday, July 12, 2007

ferncohen.com

Finally got through to Dr. Cohen after his stupid office took 2 days to call and then told me the doctor would call back, which he didn't.

I have to go to Beth Israel's endoscopy unit tomorrow to have my PEG tube changed. I am a little nervous because I may have to be put under, which is risky with my breathing. I just hope everything goes okay


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Tuesday, July 10, 2007

bathing woes with ALS

ferncohen.com
071007
It is amazing what you can get used to if you really have to. Today is my third day in a row getting spomge-bathed. Not too bad, and I am just as clean. But what to do about the hair. I am going to have to go to a local salon and get a shampoo and blow-dry. I am supposed to go to the kickoff party for the Long Island Walk to D’Feet ALS on Wednesday night, so I want to look halfway-decent for that.

I was able to get into the bathroom this morning but I couldn’t make the turn to get into the shower. It involves a pivot-turn on my right foot while holding on to the sink, and then swinging my lleft foot around. If the right foot starts to turn before I get the left foot around, it’s all over. Then the ankle turns and I am standing on a twisted foot, and starts to swell up, I get fatigued and out of breath, and it only gets progressively worse. I tried three times and then I gave up. I didn’t want to get so fatigued that I wouldn’t have the strength to get out of the bathroom or, worse yet, fall and break a bone(s).

I am trying to get my gastroenterologist on the phone to make an appointment this week.
And I am also trying to find out from Home Medical Equipment if my bed can be fixed, or if Medicare bought it, in which case I will have to pay for repair. After 2 years Medicare purchases equipment so then the repairs become the patient’s responsibility.
I slept in the recliner last night and woke up with no backache, which I can’t say for my nights in the hospital bed. Maybe I should just sleep in the recliner from now on—that hospital bed has never been comfortable!

Warren stopped by last night to pick up my I-Mac manual because he is going to put my old desktop on eBay. Saturday, Ellita and I met Jody at PS1(Museum of Contemporary Art). I could actually live in Long Island City—great neighborhood resurgence and magnificent views of Manhattan. I may just take a field trip over there and look around. I could hang out at Gantry Park on the water and shop at Costco……worth a look.

My mercury problem is still looming, and my rep is on vacation. Thank goodness for ALSA and the loan closet!!!!! I also told the attorney that I would feel more comfortable sitting with him and going over the contracts before I sign. They amended the erroneous selling price of the original, and now give me 5 days after closing to vacate, after I questioned the original stipulation, where I had to move out before closing, which was crazy!

Monday, July 9, 2007

ferncohen.com
071007
It is amazing what you can get used to if you really have to. Today is my third day in a row getting spomge-bathed. Not too bad, and I am just as clean. But what to do about the hair. I am going to have to go to a local salon and get a shampoo and blow-dry. I am supposed to go to the kickoff party for the Long Island Walk to D’Feet ALS on Wednesday night, so I want to look halfway-decent for that.

I was able to get into the bathroom this morning but I couldn’t make the turn to get into the shower. It involves a pivot-turn on my right foot while holding on to the sink, and then swinging my lleft foot around. If the right foot starts to turn before I get the left foot around, it’s all over. Then the ankle turns and I am standing on a twisted foot, and starts to swell up, I get fatigued and out of breath, and it only gets progressively worse. I tried three times and then I gave up. I didn’t want to get so fatigued that I wouldn’t have the strength to get out of the bathroom or, worse yet, fall and break a bone(s).

I am trying to get my gastroenterologist on the phone to make an appointment this week.
And I am also trying to find out from Home Medical Equipment if my bed can be fixed, or if Medicare bought it, in which case I will have to pay for repair. After 2 years Medicare purchases equipment so then the repairs become the patient’s responsibility.
I slept in the recliner last night and woke up with no backache, which I can’t say for my nights in the hospital bed. Maybe I should just sleep in the recliner from now on—that hospital bed has never been comfortable!

Warren stopped by last night to pick up my I-Mac manual because he is going to put my old desktop on eBay. Saturday, Ellita and I met Jody at PS1(Museum of Contemporary Art). I could actually live in Long Island City—great neighborhood resurgence and magnificent views of Manhattan. I may just take a field trip over there and look around. I could hang out at Gantry Park on the water and shop at Costco……worth a look.

My mercury problem is still looming, and my rep is on vacation. Thank goodness for ALSA and the loan closet!!!!! I also told the attorney that I would feel more comfortable sitting with him and going over the contracts before I sign. They amended the erroneous selling price of the original, and now give me 5 days after closing to vacate, after I questioned the original stipulation, where I had to move out before closing, which was crazy!

Saturday, July 7, 2007

feeding tube and bed woes

ferncohen.com
I am having a really tough time. None of this is anybody’s problem but mine, but it is so tough to handle these things when you can’t speak, and when you can’t get anywhere without calling access-a-ride with a day’s lead time.

First, my Mercury talking machine is still broken, and I am getting no response from the rep. Then on Friday, after my afternoon tube feeding, I closed the cap as I usually do, only to have everything spewing back out on me, all over the floor and my clothes – my whole lunch, some breakfast, and overall stinky stomach crap. I called my GI doctor who said I could meet him at the ER and he would change the tube. Problem: he is in Manhattan, and so are his hospitals. The only way I can get to Manhattan is by Access-a-Ride, and I need to call them a day before.

So he told me to go to a local ER and they would have to get a GI Dr, ti change my tube. So Ellita and I went to North Shore/LIJ in Forest Hills at about 1:30pm. We got an ER bed right away and within a half-hour I was seen by the attending physician, who said he would change the tube. Then, he forgot about us. At about four o’clock, a nurse came in and Ellita told her we were still waiting for the doctor. The doctor came back, and said he was supposed to go home at 4, but he “would see if they had a PEG tube”. He came back with some orange catheter, which was much thinner in diameter and said “we don’t have what you need, so this will have to do”. So then he proceeded to deflate the balloon that holds the tube in my belly and pull on the tube, saying “I can’t get this tube out”. He saw he was hurting me, so he stopped and put a clamp on it the size of a cuticle scissor and walked away. I said “I can’t walk away like this” and he said “then tie it up with a rubber band.” I asked him to call a GI doctor and he refused, saying that a GI doctor won’t come to the ER. Ellita and I walked out and came home, It was now 5:00pm, and we put a rubber band around the tube. That is how it will have to stay until I can get in to see Dr. Cohen in Manhattan. I have to call him Monday to see when I can get an appointment, and then go in on Access-a-Ride.

It is now Saturday morning and I have been up since 4:00am. My hospital bed went haywire, and the head keeps going up and down by itself. I think Medicare may have purchased it, so I probably have to pay to repair it, I doubt if they can come until next week, so I will either have to sleep in my recliner or my wheelchair until then.

These are my problems, and I have to deal with them. But it is so difficult with this disease to deal with anything.