Living Forward -- A New Normalcy

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Here is a link to an excellent article about "Living Forward" with a disability


and in that spirit, I decided I would just merge my 3 blogs into one, because it reflects who I am, as a whole person. I started out by writing about my life as an ALS patient. Then, I started a blog about my life growing up as a boomer. Then, I recently started a third blog about Rego Park. But then I had less and less to say about ALS, not because I don't have it anymore, but because my life isn't only about ALS anymore. I am forging ahead in a new normalcy. I am lucky to have reached a plateau in my progression, and I hope to stay here for a long time. I have had to find a new purpose, and a lot of new people in my life. Sadly, most of the people I knew before have had trouble dealing with who I have become. Who I have become is not fundamentally different from who I was. But the outside packaging has become too scary and too hard to deal with, for most of my friends and relatives. So I went through periods of intense loneliness, depression, and disappointment. I still go through all of those, but I am able to take it for exactly what it is: that other people can't take my disability or that they can't adjust to the more dependent person I have to be now. I can't just get up and go the way I used to. People have to come to me and do certain things for me. Whether that means that I attracted only takers in my former life, who depended on what they could get from me, and now can't give, or whether these relationships meant more to me than they did for the other person, is neither here nor there.. What is important is that I have a few of the old people who could make the transition with me, most who couldn't, and some new people who never knew me able-bodied, and who befriended me despite, or maybe because of, ALS.

At this time last year, I had hopes -- a cure for ALS, the chance to move to a more suitable [accessible] place to live, fulfillment of a "bucket-list" of things I wanted to do before I die. Now I have no hope of a cure in time for me, I'm stuck by circumstances in a very unsuitable and inaccessible apartment, with no hope of ever being able to get out. And, the bucket-list? Well, let's just say it kicked the bucket! With very few people in my life willing or able to accompany me places, and no more money to pay for alternatives, I have very little hope of going very far away from my four walls, and no hope of my finances ever improving. On the top of my list was to publish a book. I was willing to self-publish to move it along, but that's expensive. It's not likely that a legitimate publisher would pick it out of the millions of manuscripts they receive every year. So I am down to writing 500-word articles for online publication for a few dollars, or gift cards. It's a daily struggle just to have enough to buy groceries and health items, let alone pay the bills and high-interest credit-card debt from before ALS.

Anyway, this is how it's supposed to be with a catastrophic illness. I am supposed to be worried aout where my next penny is coming from. I'm not supposed to be able to buy anything beyond absolute essentials. I'm supposed to be just grateful to be alive, and grateful for the 3 or 4 people who find time in their busy schedules to do my bills or meet me at a museum. I'm not supposed to expect anything more. And I do look at children with cancer, homeless people, and the people in Darfur as much worse off than I.

And I've learned that a lot of those people who come to support groups who claim to be surrounded by friends and "loved ones" are often saying what everyone wants to hear, because the friends don't come as often anymore and the "loved ones" go to the caregivers' group and cry about how exhausted and angry they have become, even admitting that they never imagined what they had signed on for and saying that if they had known, they never would have done it, but in the same breath saying that they don't regret it and would do it all over again [I know "huh?"]. I heard one "loving, supportive" wife admit that her [very wealthy] husband's decision to go on mechanical ventilation made her furios ["what about ME?" she said] [He ultimately went to the ER in crisis, and was not intubated, I imagine on his wife's orders, and died. She is living very nicely on the money he left, which would have been used up if he were allowed to live on a vent, possibly for many more years]. All this makes me happy I am not married, because my decision not to "vent" was circumstantially made for me.

And so I will put everything in this one blog, because I am not just an ALS patient, and the people who read this like to read everything else I write. And maybe one day, I can find the resources to publish a book. That's about the only thing left on my bucket listthat is remotely possible, because I don't need anyone to do it with me. The trips, cruises, the one-day excursions, painting my apartment, making it more accessible, tooth whitening, anything not covered by medicare or medicaid -- forgotten!

ferncohen.com
Check out my recently published content on AC:

The Tourist's Guide to the New York City Subway

Who is This Man?

Answer to the quiz from last time:




Okay, so in my last entry, I posted a picture of a very distinguished-looking middle-aged man, and I asked you who he is.






yep, Mike Nesmith of the Monkees, who is living very nicely off his mom's fortune. Betty Nesmith, Mike's mom, was the secretary who invented liquid paper!

Update

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On Saturday afternoon, a friend I have known on and off for about 20+ years, came so we could go to Dunkin Donuts. It was about 2:30 by the time Ellita got my coat and scarf on, and my Mercury talking machine mounted on my wheelchair. She left to do some shopping because she likes me to have privacy with my friends. My friend let me know that she had to leave by 4, to go down to Macy’s, and then she had an appointment to get her hair blown out before she went out for the evenng. Okay, I was grateful that she found time in her busy schedule to spend some time.

Let me relate the events and tell how it feels to be in my position. I am not trying to be ungrateful, but I am definitely the first friend she ever had to get ALS, so she doesn’t realize how it feels to be me.; most people don’t. I hear that it’s kind of similar when a friend gets cancer, although I have the added accoutrements of wheelchair, diminished hand dexterity, and inability to speak. But I’m hoping someone will read this and know a little bit more of what to do/not do with a friend who gets a disabling disease. In fact, I hope with all these entries, someone somewhere learns how to comfort a sick friend. It’s too late for me; I’ve scared everyone away already. But, chances are that we will all have a friend with whom we will have to deal, with cancer, AIDS,MS, Parkinson’s , or any host of diseases in this age of treatments and cures that help sick people live loner.

So we get to Dunkin Donuts. I want to order a chai tea and a donut. I can do this; I have done it before. I have a miniature version of my Magna Doodle that I keep in my purse. I write “chai tea latte and gingerbread donut”. Te clerk nods; no problem. He is perfectly comfortable with it and so am I. My friend yells “Go to the table” I go to take out my money. I am slow, but I can do it. The clerk is patient, as I find most counter people in my neighborhood to be. My friend is noticeably agitated. She orders me again to go to the table and insists on paying. I feel this is a little infantilizing and then I remember that everybody always wants to pay, and it feels weird. So I go to the table, and she helps me get the straw in the chai tea, which ids help I always need.

So I remark that I haven’t seen her since the spring and wondered where she was all summer.

“Oh, I went to Long Beach so many times on the Long Island railroad with [she mentions another friend]
I say “this was the first summer I never saw the ocean. I really miss the beach”
“Oh, it was so nice. Too bad you can’t go anymore”
“But the LIRR is totally accessible and there are matted paths on the beach now for people in wheelchairs”
“Okay so next summer, you should pick yourself up and go with the aide”
She didn’t get it. Aides are emp;oyees; they’re not friends. When the do their twelve-hour shift, they go home to their own friends and family.
She gets up and puts on her coat. She is afraid of being late for Macy’s, or maybe the conversation was too difficult.. I am not finished with my chai tea, but she is standing over me and pointing to her watch.

I am grateful that I got to go out and be in the world, but I wish everyone realized that trains, beaches, theaters, many restaurants, cinemas, etc are all accessible since the Americans With Disabilities Act was passed more than 15 years ago But they are nt comfortable with taking me along. Maybe it’s the talking machine and how long it takes for me to do thins, like pay. Maybe they feel they have to pay my way, which they don’t have to do. Whatever it is, it is. If just one person reads this and remembers it for that time when she finds out that a friend or family member is disabled, by a stroke or other illness, then I’ve done my job.

I try to be grateful for one thing a day. This week I am grateful for a Chanukah surprise from my high school friend Marjie, to Louise for coming to do this month’s bills. I am also grateful my brother-in-law Claude did the four-way trip to pick me up to take me to Thanksgiving dinner at his and my sister’s house, where I got to see the kids. And for Ellita who got a fifth aide, Keter, in my care rotation. So now we have more flexibility if someone gets sick, or goes away. And, yes, I am grateful to the friend who took me to Dunkin Donuts, even if she didn’t take me along to the beach this summer.

ferncohen.com
I am trying to find a contractor for the renovation. If anyone knows a contractor s/he can recommend, send it on. They have to have all NYC licenses. I have the plan drawn out by Antoinette of the ALS Association.

I always get a little melancholy this time of year. I didn’t even put the “Trick or Treaters Welcome” sign on my door and didn’t buy candy. Just couldn’t get into it this year. Some mornings I can’t wait to get out of bed because I have so much to do, and other mornings I think “why bother”. Sometimes I value what little solitude I have, like when the aides go to do the laundry or shopping. And other times, I am agonizingly lonely and count the days to my next support group meeting or my next visit from my Jewish Federation volunteer. Sometimes I can live in the moment, and other times I worry – about whatever holiday is coming and whether I will have to go through it alone, about bills that need to be paid, about the “what ifs”, or sometimes I create something to worry about. Or even worse, I obsess about the “shoulda”, “coulda”, and “woulda”. I am now thoroughly convinced that if I had sold the apartment and moved to an expensive rentals, I would have been consumed by thoughts of “when the money runs out….”. When you own a house, condo or co-op, it’s hard to give up the “owner” mentality and become a renter, especially when the monthly payout of mortgage and maintenance is a lot less than rent, even in this area. It was probably a fantasy I was living out, and I guess I needed to go through it., and get it out of my system.

Twelve years ago, my mom died on October 29, and she was buried on Halloween, which happened to be her favorite holiday. So I get very melancholy this time of year. It always seems like everybody is having a lot more fun than I am. I am finally getting my rubber stamps and other craft supplies that I don’t use for sale on
eBay. I need to get rid of the stuff to make some room, and I also need to raise funds for the renovation.

Every once in a while, I get an unexpected surprise. Two of my former students sent emails. One did a search and found my blog, and the other found me on classmates.com, where I am listed as a faculty member for the
Academy of Environmental Science in Manhattan.

Ch-Ch-Ch-Changes

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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.

Do Unto Others

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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.

Apt search

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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.

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

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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.

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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feeding tube and bed woes

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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.

post-birthday "what-now"

ferncohen.com
I was dwelling too much on those near and dear to my heart that I didn’t see around my birthday, that I wasn’t focusing enough on whom I DID get to see. I am so grateful to Jen and Judy, who came last Sunday to with a birthday cake and some gifts – a Starbucks card, Lindt truffles, and shower gel from Bath and Body Works. On the night of my birthday, I went to Appleby’s with Louise and had one of those alcoholic dessert drinks, which was more dessert than alcohol. And we shared this dessert thing, which was like a hot apple crisp with ice cream. I got cards from Debbie, Michelle Auletta and others. Even Gulshan brought me some Pom juice and Indian sweets. On my birthday, Ellita bought me dinner, and she bought me some body spray and lotion from Victoria’s Secret. Cheryl, her mom, bought me shampoo and conditioner from Victoria’s Secret. Norma sent a blast e-mail to everyone in the ALS community telling them it was my birthday, so I got literally about 100 e-mails.

Lynette’s first husband, and father to her eldest kids, died 2 weeks ago and she had to make an emergency trip to Guyana, so Gulshan has been working every single night since June 1. Although she was a trooper about it, I know it was difficult. Lynette came back to work last night and she had had her wallet stolen, so she was not a real happy camper.

And finally, there is one thing worse than not being invited to a Fourth of July. It’s being invited to a celebration I can’t get to. I am invited to Jeanellen’s family annual Fourth of July bash out in Eaton’s Neck and I can’t get there. I don’t think anyone will be able to drive with me, and the LIRR station is nowhere near there. I was invited to the Yankees game on ALS Night but it came in the middle of the aides’ shift change, so I couldn’t work it out. It is all so frustrating that, when I DO get invited somewhere, I have to depend on other people to get me there. It makes me so angry to lose my independence.

ALS and birthdays

It was my birthday yesterday, so let me just say that I can't believe another birthday has gone by.

Life can change in an instant -- a sudden illness, accident, anything can happen. We all never know which birthday will be our last; this is true for everybody. In Januar, 2004 I was told I have a fatal disease and most likely had 2-5 more years left. But so many people are dead in an instant, without any warning at all, or fall ill and are on the road to death from then on.

So I am grateful I was given the gift of timw. Because ecen with ALS, I have seen others diagnosed after me who are already gone. We all have to be thankful we are here today.

To write with emotion or not?

I survived DC, and I will post about that awesome experience probably over the weekend. But right now I am so exhausted (in a good way) that I feel as if I have “jet lag”. And I want to catch up on some stuff that had been laid aside, not only for the past three days, but also in the week or so prior to my trip, in favor of preparing mentally and physically (getting clothes ready, for instance) for no only DC but the Ride for Life the week before.

A couple of ugly monsters reared their heads right before and after my trip. The first was Joe Gaines, whose comment in my caringbridge guestbook, I will try to recreate. I deleted it the moment I saw it. It was signed Joe Gaines with an email joesgirlz3@yahoo.com. I’ve tried to email him but, not surprisingly, he didn’t reply. Almost verbatim, the majority of it was like this “I find it discouraging that you have such anger toward your family and friends. If I were one of your friends, I would rethink the relationship. The fact that you have ALS is tragic but people have lives. You are just trying to get other people to feel sorry for you and you have a lot of nerve asking for money.” He went on to say that he has been where I am now and he understood that people couldn’t be there for him, or something like that. Well it sounded hauntingly like an email I got from someone about a year ago, so maybe Joe Gaines is a pen name, or maybe a random troll.

All I know is that I can’t write about my experience with ALS and not include the normal emotions like anger and depression that go along with it. And many people have written to me asking if I need money or anything, so I thought providing a link to my paypal account would be helpful. If anyone is offended, he/she doesn’t have to read this. So one bad posting out of many positives isn’t bad. So many people wrote to me telling me to continue posting to my blogs, emotions and all, to let one disgruntled sicko spoil the fun.

I do feel that this is such a two-way mirror of sorts, though. Everybody can see me, But I can’t see them. I actually had people come up to me in DC and say “So you’re Fern. I read your blog.” And a few people told me I inspire them. So, I will keep going. And I know that some people who are not in my life anymore read this. Maybe they really care or maybe it’s a way to keep up with me without actually having to deal with me or ALS. So be it.

I also came home to a crisis. You see, with this Consumer-Directed Home Care, it is up to me to fax over the time sheets to Concepts every Wednesday. So before I left, I made sure to fax over the time sheets for the May 18 payroll. Well there is a line for my signature, and I forgot to sign. Had I been home, this would not have been a problem; Concepts called on Monday and left a phone message informing me of the error and telling me that I could sign the sheets and fax them back by Wednesday at 3 to make payroll. Well, guess what. I got the message when I returned last night. So I called Concepts this morning and it is too late, so my aides have to wait for the following payday, which is June 1. I told them that I will front them money for any urgent bills. From now on, we are all going to double-check each other and make sure everything is signed and complete before we fax over the time sheets. My fault, what can I say? I won’t do that again!