Advocacy Day 1

ALS= Amyotrophic Lateral Sclerosis aka Lou Gehrig’s Disease aka Motor Neuron Disease
ALSA= ALS Association
PALS= Person with ALS
CALS= Caregiver to a PALS


Washington DC ALS Advocacy and Public Policy Conference Day 1 May 14, 2007


Okay, so I have taken long enough to write about DC Advocacy. I am already finding myself praying that I can be around for next year, although I would do it differently next time, but more on that later. Any pictures are courtesy of Marie Castronovo, whose mom was diagnosed recently, and Ellita, my caregiver. My beloved Nikon Coolpix was stolen in my early days of home care, and I bought a cheap Vivitar 2-pixel camera, but I only brought my camera phone with me. Although when Ellita ordered her Sony Cybershot a few weeks ago, I was tempted to follow suit, but I managed to exercise some restraint, convincing myself that I was okay with the camera-phone. So Maria was my angel-paparazza.

So I woke up Monday morning at an obscene 5:15am to be bathed and dressed in time for the 6:55 Access-a-Ride pickup. Ellita had left at 1:00 pm on Sunday, relieved by Gulshan. But Saturday, she had packed most of my stuff. She arrived at my house at 6:30am on Monday, so I had two people helping.

We arrived at Penn Station in plenty of time and met up with Jody Wiesel and Jackie Reinhard from NYC ALSA and Maria Castronovo, whose mom has ALS. We pulled into Union Station in DC shortly before 2:00, and were transported by wheelchair-accessible bus to the hotel. Ellita, Louise, and I checked in at the Marriott Metro Center, and put our stuff down and checked to make sure we had the roll-in shower, which we did. As well as a huge bathroom, with grab bars around the toilet. YAY!!!!!

So we were a little late for the “Roll Call of Chapters”. This was actually more entertaining than I expected. A representative from each chapter came to the front of the room and gave a one-minute talk about their chapter, including but not limited to, how many delegates they had, including number of PALS. For the first time in the four-year history of ALS Advocacy, there were delegates from each of the 50 states, including Alaska and Hawaii. Some chapters encompassed more than one state, and some states, including New York and California, have more than one chapter – eg. NY has the Greater NYC Chapter, which includes N. and Central New Jersey, and the Upstate Chapter, which is basically everything from the Catskill Mountains on up. Each representative was given exactly one minute to speak, and someone rang a bell when the minute was up. At either side was a screen with a map of the state. Remember that bell I mentioned that rang when the minute was up….well it rang to cut off every speaker, except our Kate McNamee who, although not a native New Yorker, must have learned quickly enough how to speak fast, because she came in under that bell. And, by the way, our chapter had the biggest delegation—59.

After roll call, we all went to an outdoor patio for a sumptuous buffet of Asian fusion cuisine. And then off we to the World War II memorial, with the Washington Monument in back of us, and the Lincoln Memorial at a distance in front of us, for the candlelight ceremony. First we heard from Rekha Basu, an Iowa journalist, speak about her husband Rob Borsalino, another respected journalist, who died last year of ALS and left Rekha and two young children. We heard from two former baseball players, and then it was time to light our candles. It was an impressive sight; all the PALS in wheelchairs, with our friends and families ----a sea of candles in the dark. I went to sleep that night exhausted, but so happy I was able to be in DC for such a moving experience.

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!

We only Reap What We Sow

After Sunday I had the chance to take a good and hard look at what kind of a friend, neighbor, daughter, sister and aunt I have been. I am not beating myself over the head; I am just being honest with myself. I didn’t do all I could have done. I could have taken family leave while my mother was dying; I was afraid of having no money coming in -- the joke’s on me -- look at my financial situation now! I could have, and should have, moved in with my parents and taken care of them; my dad was recovering from hip surgery while my mother was dying, and was in another hospital when we got the news about my mom. Instead, I chose to work, going to the hospital every evening and on the weekends, and even going to rehearsals for a play I was in.

Was I an exceptional aunt? No. I did what any aunt does and nothing more. Ditto for the kind of daughter I was to my dad after my mom passed away. And now, I couldn’t be an attentive daughter and aunt if I wanted to. I can’t talk, drive, nor walk. I am literally of no use to kids. I was a mediocre employee, always concerned with “taking care of me” and not wanting to do anything extra that would take time away from ME. I was really not a great friend; I did what I had to do, and no more. In short, I cannot be angry that nobody is really “there” for me now. I wasn’t particularly caring to my elderly and infirm neighbors either, so what right do I really have to expect anything from any of them?

I am at more peace than I have ever been. I am not angry with friends, neighbors, family, or former co-workers. The next time I get depressed because it is a holiday or occasion and I have nowhere to go, I can ask myself instead “If the roles were reversed, would I do anything for anybody?” And the answer is “probably not”. We never think anything like this will happen to us. We think “my family, friends, and neighbors should _________” but why SHOULD they? I never put my life aside, so why should anyone else? Knowing this, facing it, and admitting it to myself has been liberating for me. I can look at myself at a function or event for ALS, and instead of wondering “why did nobody come to support me?” I can say “Why SHOULD they? Would I have been there? Or would I have also made a lame excuse and do something more fun?” I am ashamed to admit my response. I would have written the same lies to people that they write to me-- “I am thinking of you (yeah right!!), praying for you (also a lie -- I didn’t pray at all for anything), and I will be there to see you really soon and we will go out and have fun (yeah sure, I figured you would be dead by now) but I have been so busy (yeah right --I have no husband, no kids, and a studio apt to clean -- who am I freakin’ kidding?).

On the other hand, I am thankful for people who really HAVE put their busy lives aside for me -- Andrea Bryant, whose ex-husband died last summer from ALS, and who came over with pastries, and to help me sift through old photos to decide what to keep and what to discard (why DID I take a picture of that animal/building/person anyway? And what WAS I thinking when I cried for weeks or months when that guy dumped me, and I swore I would never meet anyone as perfect as he ever again?). I am thankful for the tulips Haley and family sent to me, and to Stacey who sends me little-- and sometimes big-- special surprises in the mail to brighten my day, to Andrea’s sister Marisa and Jennifer Bush for their surprise gifts, for Jeanellen, Barbara, Maureen, and Beth for their BIG gesture to make life easier for me. And to the Ride for Life people for helping me on the Ride, along with Ellita, because they saw that I didn’t have anyone with me to help me hydrate, go to the bathroom, and eat my lunches (Ellita was riding in the van, so I needed someone to walk beside me to attend to my needs -- drinks, sunscreen, breathing challenges etc). For everyone who really IS thinking of me and not just saying it to “do the right thing”.

I’ve stopped emailing anyone anymore to ask “how are you?” My attempts to connect are interpreted as “Why did you abandon me?” And I laugh, because I wonder what the messages really want to say. Hmm. Let’s see
“I haven’t been in touch because the idea of spending an afternoon/evening with someone who has to type conversation on a computer and who gets more food on her shirt or the floor than she gets in her mouth, is just not very appealing to me”.

“ I have been having regular barbecues or outings with people but the idea of bringing someone in a wheelchair who can’t talk anyway, is really not something I want to look at and need to expose my family and friends to. It’s just so unpleasant.”

Or maybe just this:

“It’s just too much trouble to have you and, after all, you weren’t such a good friend anyway”

But most people would just say “Aren’t you dead yet? Wow, I know I said we would get together, but I didn’t really mean it and, quite frankly, I figured you would die before I would even have to make good on my promises. Oops.”

Or just like the end of a date “I’ll call you”.

Inspiring Others

It has been a busy weekend for me. Saturday I met the Ride for Life at a church in Corona and we rode through East Elmhurst past LaGuardia Airport to Astoria Park. Then on Sunday I was driven to Brooklyn in the morning and I rode with the Ride for Life over the Brooklyn Bridge and all the way up to Columbia University on 116th St, At Columbia we were met by a huge crowd. We were eleven patients with their friends and family members had ridden our wheelchairs (I was with Ellita) all that way, met by supporters and other patients, some on vents, with more family and friends waiting for us. The family and friends who went with us either rode in one of the vehicles beside us, or walked with us all or part of the way. We were an amazing sight. The walkers handed out flyers about ALS and passed around canisters for bystanders to drop in loose change.

At Columbia there were presentations in their outdoor quadrangle. There were speeches by scientists, Chris Pendergast, and Valerie Estess whose sister Jenifer Estess died of ALS, and who founded Project ALS, one of the recipients of Ride for Life funds. But the most awesome sight was 6,000 pinwheels stuck into on the lawn (photo above),, to represent the 6,000 people who died from ALS last year.

Then came a multi-denominational hour-long ecumenical service in the chapel. I put Ellita in a taxi and went back into the chapel alone, surrounded by hundreds of people. There were patients, family and friends of patients who already died from ALS, and family and friends of the patients who are still alive. They came from long distances too -- many from New England and even Pennsylvania. It was extremely moving. Not being a fan of organized religion, and being alone, I was reluctant to go in. I also saw that it was so emotional, and I was afraid of losing control. But I went in and I was surprised to find out how non-religious and spiritual it was.

When the service was over I went out to wait for my rude home. All around me were my fellow patients with family and friends comforting them. Inever saw so many crying adults, male and female, in my life! And what amazed me was that I held it together. The Ride for Life people came up to me, told me how happy they were that I was able to join them this year, and make sure I had a ride home. I thought of what a sight I must have been, the only patient alone in a wheelchair, waiting for a ride home, and I shed a few tears, and then I laughed. I had the inner strength to hold on while the whole area outside of the chapel was bawling. I had emailed everyone I knew to tell them I was doing this Ride, and to come along if they could to support me. I actually got a few responses like “I am busy that weekend, but I will be thinking of you.”

Then I realized that we have to INSPIRE people to love and support us. The difference between “I’m busy and can’t make it but I will be thinking of you” and actually showing up, is not the responsibility of other people; it was my lack of IMPACT on those people. Why was N. Babylon HS there on Thursday to support Jeanellen’s mom Mary more than a year after her death, and raise over $13,000 at a fundraiser a week before that? She must have inspired that kind of devotion. When I had to leave teaching, I heard from one teacher, and NOT ONE student. Mrs. Muerphy worked a year after her diagnosis, with the support of the students, school district and her colleagues. I sat in an office and nobody came to even talk to me, until getting up the flight of steps into my school became so dangerous I had to leave, and never got assigned to a wheelchair-accessible school as I requested.

I have former co-workers from my jobs with the travel industry whom I emailed before the Walk last year, and I got two small checks. I went to work on time every day, did my sales calls or taught my students, stayed out of trouble, tried to get along with everyone, and in most cases kissed the right butts against my will, to keep my job and survive. But after I left each airline, hotel, or school, I was forgettable. If this were American Idol and I were being judged by Simon Cowell,, he would say “Fern, that was a good enough performance, but nobody will remember it.” I went to all the bar mitzvahs and the weddings (two since ALS), gave the right gifts, remembered the birthdays, gave or sent the gifts. I did enough to get by, acted acceptably enough to get invited back. But I didn’t inspire anyone, excluding one friend who really did have to work yesterday, to put aside time in a busy weekend to give a part of the day to come walk or share with us. It’s not anyone else’s fault or selfishness or even lack of caring, and I don’t take it personally. I am so grateful for my inner strength. I am grateful for my slow-ish progression and deterioration,, and I am so thankful that I can use my hands. So many of the other patients have lost the use of their hands. Yesterday for a moment I felt like the kid who wasn’t chosen for the volleyball team, the student whose mom didn’t pick her up from school, or the girl with no date for the senior prom. But the Ride people kept telling me that they hope to see me on the Ride next year. If I am still alive, I intend to be there, even if I have to pay someone to drive me in a rented wheelchair van. In my life so far, in my jobs, in my relationships, I “showed up, but it wasn’t enough. Woody Allen said “seventy percent of success is showing up”. I beg to differ, Woody; I think “showing up” is less than 50-- the other part is giving, listening, thinking “outside the box”, sharing, and inspiring. I am the living proof, and yesterday was my reality-check. And I am okay today.

My first day of Ride for Life

Ride for Life Day 6 North Babylon to West Babylon

On Thursday morning we were greeted by the marching band and cheerleaders of North Babylon High School. Outside of the school was a huge sign “We remember Mrs. Murphy”. Mrs. Mary Murphy was Jeanellen’s mom, who died about a year and a half ago after a 13-month battle with ALS. Jeanellen’s whole family was there. They brought her wheelchair and hung the flag from Ride for Life with her name on the wheelchair. We were all in our wheelchairs with our name flags and there was Mary’s empty wheelchair with her name flag. You got the feeling Mary Murphy was there with us in spirit. Jeanellen made an emotional speech. And I looked over at Jeanellen’s dad and I saw that he was very emotional. He had met his wife when they were both teachers in the elementary school down the road.

The band played and the cheerleaders danced and then we set out for our ride into Babylon and then West Babylon, followed by 100 North Babylon High School students, bikers and walkers, including my aide Ellita and of course Jeanellen. As we passed the elementary and middle schools, the little ones were all outside, holding signs they had made in crayon with quotes such as “Ride for life -- stamp out ALS” and “We love you, ALS patients”. They were all so cute and so sincere.

I skipped today, which was Syosset to Oceanside because I could get a ride to the starting point but not home from the finishing point. Tomorrow I am meeting the ride in the afternoon for lunch in Corona and then riding to Roosevelt Island. Sunday is a big day. We start at Cadman Plaza in Brooklyn, go over the Brooklyn Bridge and over to Washington Square Park for lunch. Then we go up to East Harlem to the birthplace of Lou Gehrig and then over to the West Side for a ceremony at Columbia University and finally a prayer service at the chapel at Columbia. I am hoping I make it through that long, long day.