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.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Monday, May 7, 2007
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