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The first story in this book is Jackie Waldman's own -- the self-described charmed life -- until July of 1991, when she was diagnosed with multiple sclerosis. It took years, but eventually she came to understand that a person with MS is only part of who she is. Since her diagnosis she's done a number of things, including publish the Courage to Give series. In this most recent addition to the series, Waldman has collected stories of 24 men and women living with MS, who have extraordinary lives, who've gone way ...
The first story in this book is Jackie Waldman's own -- the self-described charmed life -- until July of 1991, when she was diagnosed with multiple sclerosis. It took years, but eventually she came to understand that a person with MS is only part of who she is. Since her diagnosis she's done a number of things, including publish the Courage to Give series. In this most recent addition to the series, Waldman has collected stories of 24 men and women living with MS, who have extraordinary lives, who've gone way beyond slogging through every day, who've found the courage to do new things or old things in new ways, to make the lives of those around them -- sometimes tens of thousands of those around them -- so much better.
In these pages, you'll meet Alicia Conill, an M.D. who continued her medical practice for as long as she could, and then founded a revolutionary course called The Disability Experience, so that health care workers know what it's like to live with disability. You'll also meet Anthony Zaremba, who almost lost his job when his employees thought his shaking hands meant he was drunk or on drugs. His work is with community gardens and making one in Brooklyn wheelchair accessible. There's Loia Feuchter, who started a knitting circle that does philanthropic knitting. There's Dwight Riskey, a senior VP of Frito Lay, who organized a big team to raise money for MS. There's David L. Lander, better known as Squiggy from "Laverne and Shirley," who hid his disease for years. But now he's an Ambassador for the National MS Society.
No Lifetime Guarantees
Life at its longest is way too short. We don't get to choose whether or not we have MS, but from moment to moment we do get to choose how to live with it. If we spend every waking moment either waiting for "The Cure" or waiting for the other shoe to drop, then we don't just have a disease, we are one. The difference between these two states is far more than just a matter of semantics. It's about the quality of life.
When I was initially diagnosed with MS thirty years ago, I was really angry. Because I was so young—only twenty-five at the time—I believed that God owed me a guarantee on the body and all of its parts. I really believed that God had come down personally and done this to me.
Back in those days there were no ABCR drugs, there was nothing. A diagnosis of MS was virtually a death sentence. They gave you a pat on the head, told you to go home and hope for the best, and, if you were religious, to pray.
I walked around angry for several months, really ticked off. Then one day I was riding the bus home from work and a much older man, in his late eighties, fell down at my feet and died of a massive heart attack holding onto my hand.
The only thing that I ever knew about him was that his name was Joseph, but in his ending was a new beginning for me. I realized then and there that God and the world didn't owe me anything. Not one single thing. There are no guarantees in life. Not for anyone. You get what you get in life and what you do with it is totally up to you. As for the answer to that most unanswerable of questions "Why me?" perhaps the answer was far simpler than I had suspected. Maybe the answer could be summed up in six letters. Two very simple words: "Why not?" Pithy. Succinct. And Zen. Very Zen.
I decided that whether I had a week or a day, I needed to make the best of it, the most of it.
If I had to accept this unpredictable intruder known as MS as my lifetime companion, then let it take on meaning and function in my life. Let it serve as my teacher. Let me learn from it whatever life lessons I'm meant to learn. Let me become the ever-vigilant student so that some day I may become the teacher. Let this be the purpose of my soul.
A couple of weeks after the incident on the bus I was walking by an appliance store that had a whole bunch of television sets in the window. Only one of them was plugged in and turned on. On that TV set was nothing but static, and as I watched it, I couldn't move. It dawned on me that that was how I'd been leading my life since my diagnosis. I'd been acting as if I was trapped in front of a TV set with static on it. That's when I formulated my "TV set theory of life." I really believe that when we're born God and the world gives every single one of us a TV set with hundreds of channels. Endless opportunities to learn and to grow. One channel has static. My static channel happens to have MS on it. Everybody in the world has their own static channel. I realized that I could sit in front of that static channel for the rest of my life or I could get up and change the channel. I decided to do the latter.
That doesn't mean I never have a bad day, but it does mean that I limit my pity parties to a half hour. I know for a fact that every minute I spend feeling sorry for myself is a minute I'll never get back.
Over the years, I believe, I really have changed the channels on my personal TV. I've had good times, good jobs, and good friends. Sure, living with an unpredictable disease makes some things more difficult, but in the end, they are all doable.
Well, that philosophy worked pretty well for more than fifteen years. Then, in January 1988, I developed a terrible case of bronchitis. Since I'm a believer in trying natural things first, I was taking a huge dose of vitamin C. Not the time released gel caps of the twenty-first century, but those big old horse pills. One of the pills lodged in my throat and I literally started to choke to death—on a vitamin C tablet! A friend of mine was there and he did the Heimlich maneuver. He started CPR and saved my life. Up to that point I had believed that I would certainly perish from something related to MS. Realizing that I could choke to death on a vitamin pill, that such things happen, was another huge wake-up call for me.
Since being diagnosed with MS I had more or less given up on the physical parts of life. I had focused most of my attention on the cerebral, the emotional, and the spiritual. But the vitamin pill incident made me realize that I wanted back everything I had surrendered to MS. I wanted it more than I had ever wanted anything in my life. I decided I had to make something amazing happen in order to celebrate what I saw as the second half of my life. It had to be something so outrageous that it would take everything that I had and still more—something that would help me reinvent myself and reclaim my physicality. That was when I decided to run my first New York City Marathon.
I had absolutely no idea how to run a marathon; I just knew that I would. I pictured myself crossing the finish line wearing a designer tracksuit, wind blowing in my hair. Of course that was not the real picture at all.
Then I decided that I was going to do it without appliances. Back then I could still get by some days without a cane. But I couldn't take more than eight or ten steps before falling on my face, so I went out and bought some hockey pads for my knees and my elbows and a crash helmet. Another unrealistic picture of how I would cross the finish line. Then I realized that I could have either my little fantasy of crossing the finish line or I could have the real thing, and if I wanted the real thing, I had to find out how to get it.
I called Road Runners, the governing body of the New York City Marathon, and they put me in touch with an organization called the Achilles Track Club—an international running club for disabled athletes. Thanks to them, I began my real training.
When I first decided to do the marathon, I made a list of all my assets and the reasons I believed I could do it: a highly developed sense of the absurd, a really great sense of humor, the ability to achieve long-term goals that require planning and multitasking. These were at the top of my list.
Then I made a list of all my deficits, potential liabilities that might thwart my plans or put a damper on my dreams: limited eye-hand coordination, unsteady gait, no strength or endurance.
And finally, I made a third list—of all the ways I could fix the items on the second list. I tend to think up very tactile, down-to-earth strategies. I realized I could play pinball to improve my eye-hand coordination; I could enroll in an Afro-Brazilian dance class to improve my gait; I could do weight training to improve my stamina and endurance.
For almost ten months that first year I trained with an amazing support team. In the beginning I could only do five blocks one way and five blocks back, but that's exactly the trick. Just as you do with anything in life, you build and you build and you build.
In November 1988 I "ran" my first marathon in nineteen hours and fifty-seven minutes. It was the fastest race I have ever run. Over the years, my times have ranged from nineteen to thirty-three hours. To date, I have completed a total of seventeen marathons, fifteen in New York, one in Boston, and one in London.
As I've gotten older, of course, I've gotten slower. Also, I'm now a diabetic, so every two miles I have to stop and check my blood sugar and look at my feet for blisters because I have neuropathy so bad I wouldn't know it if I got a blister.
Folks are always amazed that I'm able to do 26.2 miles and stay awake for more than twenty-four hours. The truth is that there are no magic tricks. No smoke and mirrors. Like any major goal, I just break it down into a series of manageable stages. The first year it was a mystery, an unknown adventure. Now I plan things differently. I know that a certain person will be there to support me at mile three, that there will be a coffee break at mile five and a bathroom break at mile seven. Just like everything else, if we look at it as one long never ending road, it's completely overwhelming, but if we break it down into smaller segments with treats interspersed, then the miles become doable fragments, proving once again that the whole really is greater than the sum of its parts.
People often ask me which of my marathons was the most memorable. Hands down. No contest. November 2001.
On September 11, 2001, I was working three blocks from the World Trade Center as a third shift supervisor for an employment agency. The only reason I was spared was that my first shift replacement was five minutes late. If she had been on time, I would have been standing at the bus stop under the twin towers when the first plane hit. The woman who was standing there was doused with seventy gallons of jet fuel oil. She died six weeks later. Along with tens of thousands of New Yorkers I barely escaped with my life that day.
For a long time, I grappled with the memory of everything I had seen and heard on that terrible day. Why did I get to live when so many others perished? Someone was five minutes late and I'm still here. If she had been on time I surely would have perished. Was life really this random or was there a divine plan to things? After thinking about it and praying over it for a long time I realized it really didn't matter which was true. The point really was that I am still here, and I know without a doubt that each day that I live is bonus time. Another day for me to rededicate myself to my missions in life—dedicating myself to the fight against MS and traveling around the country helping people reinvent the words win and achieve.
I completed the 2001 New York City Marathon in a little over twenty-eight hours. What an extraordinary day. Thirty thousand runners took back our city one block at a time. For many of us it was the beginning of the healing process that continues to this day.
Ultimately, for me, a marathon is far more than a big race cut into bite-sized pieces. It's a metaphor for life. It's about doing that thing that we think we can't do. It's about moving past where we would ordinarily give up in real life and knowing that once we have done so, no one can ever tell us we can't do something we really want to do. We know both literally and metaphorically that we have what it takes to go the distance in life.
I really believe that 99 percent of the people in this country do marathons every single day of their lives in one way or another. They raise children, work second jobs, live with MS, and so on. All those things are marathons. A marathon is not just a "run" in terms of miles, but is about the intensity and commitment with which we lead our lives. For all we are and all we do, we need to give ourselves the finishers' medals we deserve.
Over the years the MS, diabetes, and the marathon have certainly been excellent teachers. They've taught me the value of humor, faith, and discipline. They've shown me that humility and vulnerability are the precursors to strength. I know now that winning is not always and necessarily about being first. It can be, but it doesn't have to be.
No, winning is about doing everything you do from the center of your being, with everything you've got. Winning is about having a dream and implementing a plan. It's about viewing those unforeseen, adverse circumstances that appear to block our way as lessons and opportunities. Ultimately winning is about putting one foot in front of the other until we get where we have to go in life. No doubt about it, in any life there's a lot of hard work to be done. But along the way there's so much magic to be had.
I have a poster taped to my bedroom wall. It's the last thing I see before falling asleep and the first thing I see on rising. It is a picture of a nameless, faceless runner on what appears to be an endless road, with the caption, "The race belongs not only to the swift and the strong, but to those who keep on running."
Words to live by.
Editor's note: For many years Zoe led a team of runners called the Marathon Strides Against MS. The team raised more than $2 million for research and programs.
To learn more of Zoe's story, see her book The Winning Spirit: Life Lessons Learned in Last Place, Doubleday, 1997.
When Doctor Became Patient
Dr. Alicia Conill
Those of us chosen, in a seemingly random way, by chronic illness also have a choice to make—the choice to live. I made that choice on a damp November day in 1995. Each morning that I struggle from bed to my wheelchair, or each night that leg spasms and pain keep me awake, I choose again.
It should have come as no surprise. Everyone I have ever spoken to about MS, as a physician or as a fellow patient, tells me there are always warning signs. Episodes of discomfort that pass. The activities you start avoiding without realizing it out of fear of triggering those "silly" symptoms. For me, it was an intense dislike of hot weather, occasional blurring of vision, and transient numbness and tingling. Well, certainly the fatigue could be explained. I was training to be a doctor and sleep was a luxury—and not one I indulged in often enough. I had reason to be tired.
I figured I would join an academic clinical practice where I would care for patients and teach students and residents the science, and even more importantly, the art of medicine. My schedule would finally allow for sleep. Even after my dear grandmother was diagnosed with an expanding abdominal aortic aneurysm and needed surgery, from which she developed complications that would result in an almost six-month ICU stay, I continued to believe that modern medicine would prevail in restoring her to good health and I would check in with a daily phone call and occasional weekend visit. Wrong.
Every night I would board a train from Philadelphia to NYC, catnap in a chair next to my grandmother's bed, and board the 6 A.M. train back to Philly. Then, I began inpatient rounds and outpatient office hours. Admittedly, I held the innocent notion all young doctors share. I thought I was invincible. Wrong again.
After six months, my grandmother died, but not before the first sign surfaced that something was really wrong with me. I had already developed transient blindness in my right eye, which lasted approximately eight weeks before resolving spontaneously, and a persistent numbing and squeezing sensation from my butt and crotch area to my toes. But I convinced myself that the transient blindness was a corneal abrasion and the diffuse numbness a slipped disc.
Looking back, I am of course embarrassed at this admission. I believe I am an excellent diagnostician, but everything changes when doctor becomes patient. Fear and denial overcame all my diagnostic skills. Did I know? Yes, I knew. But, I wasn't going to be the one to break the news to myself. When the wise and kind neurologist said, "This is multiple sclerosis," some part of me wasn't really surprised.
Nine years later, on a crisp fall day, the colors around me vibrant and breathtaking, I accepted a friend's invitation to a barbecue even though I would only know a handful of people there. Of course people asked. "Alicia, what do you do?" I paused and replied, "I used to be a doctor." My friend looked at me in dismay and interjected, "You're still are a doctor!" What my friend didn't know is that only a week earlier, in a voice lacking emotion, eyes avoiding mine, my neurologist (obviously not the same one who confirmed my diagnosis) told me that I was now totally disabled and could no longer practice my profession.
It was just a routine visit. I expressed my concern about loss of sensation on the tip of each finger, which sometimes interfered with my ability to confidently perform physical examinations. I had to take extra time to be sure I did not miss a bump, a lump, or alterations in the rhythm and intensity of pulses. I had already cut back on office hours because the symptoms were always worse after long days, and at this point I had been using a three-wheel scooter for several years. Most of my patients were aware of my diagnosis, especially as it affected my legs. This new symptom, however, was invisible to the naked eye and easier to hide from others and deny to myself.
Excerpted from People with MS with the Courage to Give by JACKIE WALDMAN. Copyright © 2003 Jackie Waldman. Excerpted by permission of Red Wheel/Weiser, LLC.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
1 No Lifetime Guarantees: Zoe Koplowitz
2 When Doctor Became Patient: Dr. Alicia Conill
3 Gardens for All: Anthony Zaremba
4 Creating a Cure Map: Art Mellor
5 Organizing a Team for Charity: Dwight Riskey
6 Always Be Authentic: Jill S.
7 If You Follow Your Heart and Use Your Mind, You Can Achieve Anything:
8 Focusing on Wellness: Kelly Walker-Haley
9 Coming Out About Ms: David L. Lander
10 Make Your Life Count: Jean Griswold
11 Anything Is Possible: Marie L. Stallbaum
12 The Knotty Knitters: Loia Feuchter
13 I Wasn't About to Just Stop Living: Mark Blum
14 Discover Your Gifts and Share Them: Pam Allen
15 Taking the Path God Chose for Me: Holly Woodard
16 You Must Live Your Life Anyway!: Carole Biskar
17 The Healing Spirit of Faith, Creativity, and Companionship: Dr. Brett
18 A Box to Put My MS In: Matt Oelfke
19 The Universe Always Guides Us in the Right Direction: Nancy Heine
20 From "I Can't" to "I Can": Sister Karen J. Zielinski
21 Normalcy Is What You Make It: Nicole Fouliard
22 Don't Just Sit There, Do Something: Donna Boldt
23 Late Bloomer: Bob Neil
24 Never Give Up Hope: Kelly Sutton
The National Multiple Sclerosis Society
About the Author
Posted September 27, 2003
inspiring stories of hope and guts, like mark blum who created mission with bikes, when ms curtailed his career and life choices. the subject of the film 'pedaling a dream,' what a story... what stories in this great testiment to folks with ms. buy. help.Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.