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I Stand, for Now Walking Is Extraordinary. I Don’t Want to Give It Up.
(about 5 hours later)
For several years now, I’ve had a difficult relationship with wheelchairs.For several years now, I’ve had a difficult relationship with wheelchairs.
In 2014 I learned I had a rare spinal cancer and underwent multiple surgeries. A complication in one of those surgeries caused a spinal cord injury, and I was left with partial leg paralysis. Since then, my goal has been mobility on my terms, and that means walking.In 2014 I learned I had a rare spinal cancer and underwent multiple surgeries. A complication in one of those surgeries caused a spinal cord injury, and I was left with partial leg paralysis. Since then, my goal has been mobility on my terms, and that means walking.
To avoid having to use a wheelchair I have trained almost daily, experimented with stimulation technologies, anti-gravity treadmills, healing therapies like deep massage and Pilates. I made progress, enough to consider disassembling my home’s steel wheelchair ramp.To avoid having to use a wheelchair I have trained almost daily, experimented with stimulation technologies, anti-gravity treadmills, healing therapies like deep massage and Pilates. I made progress, enough to consider disassembling my home’s steel wheelchair ramp.
When I had a postoperative stroke in January, the weakness got worse. The ramp stayed. I found myself craving a seat. I’m only 58. Athletic. I planned for this to go differently, but I am trying to imagine the scenario I can live with. I don’t want to think about using a wheelchair as capitulation, or worse, surrender, but I do, and in part I have only myself to blame. I have framed the fight that way: standing versus sitting, strength versus weakness.When I had a postoperative stroke in January, the weakness got worse. The ramp stayed. I found myself craving a seat. I’m only 58. Athletic. I planned for this to go differently, but I am trying to imagine the scenario I can live with. I don’t want to think about using a wheelchair as capitulation, or worse, surrender, but I do, and in part I have only myself to blame. I have framed the fight that way: standing versus sitting, strength versus weakness.
I have met and read about enough people to know how silly that thinking is. Journalists like myself have reported from foreign war zones using a wheelchair. Dr. Cheri Blauwet, who wrote the essay “I Use a Wheelchair. And Yes, I’m Your Doctor” for this series is a friend of mine. She is a human whirlwind with a demanding medical practice and worldwide travel schedule; she serves on multiple national boards and has a husband and two preschool children. Whether standing or sitting, I aspire to her energy and life force.I have met and read about enough people to know how silly that thinking is. Journalists like myself have reported from foreign war zones using a wheelchair. Dr. Cheri Blauwet, who wrote the essay “I Use a Wheelchair. And Yes, I’m Your Doctor” for this series is a friend of mine. She is a human whirlwind with a demanding medical practice and worldwide travel schedule; she serves on multiple national boards and has a husband and two preschool children. Whether standing or sitting, I aspire to her energy and life force.
Among my tribe — people who have a better than 50 percent chance of doing some form of walking, sometimes referred to as “incompletes” — there isn’t unanimity. Some stop at nothing to walk; some maintain the compulsion is misguided and selfish, potentially life-wrecking. The latter are not resigned to a wheelchair; they select it.Among my tribe — people who have a better than 50 percent chance of doing some form of walking, sometimes referred to as “incompletes” — there isn’t unanimity. Some stop at nothing to walk; some maintain the compulsion is misguided and selfish, potentially life-wrecking. The latter are not resigned to a wheelchair; they select it.
There is no guidebook, no criteria or benchmarks for when to trade legs for wheels. I recently noticed a woman at my Y.M.C.A. who moves so fast in her chair that she is hard to track. She flies from station to station. One day while I was using the stationary hand cycle machine, she wheeled past into the mat area, dismounted in a flash from her chair and began a killer core routine, balancing most of the time from the blue half-moon rise of a rubbery Bosu training ball. I intended to ask her some questions about her workout, but before I could she was gone. For the first time, I began to imagine a world I couldn’t before.There is no guidebook, no criteria or benchmarks for when to trade legs for wheels. I recently noticed a woman at my Y.M.C.A. who moves so fast in her chair that she is hard to track. She flies from station to station. One day while I was using the stationary hand cycle machine, she wheeled past into the mat area, dismounted in a flash from her chair and began a killer core routine, balancing most of the time from the blue half-moon rise of a rubbery Bosu training ball. I intended to ask her some questions about her workout, but before I could she was gone. For the first time, I began to imagine a world I couldn’t before.
My mind often turns to long-held fears about myself. Maybe in reality I look ridiculous double poling around as I have. Maybe people have been wondering, ‘Why doesn’t the poor guy take a load off — what is he trying to prove?’My mind often turns to long-held fears about myself. Maybe in reality I look ridiculous double poling around as I have. Maybe people have been wondering, ‘Why doesn’t the poor guy take a load off — what is he trying to prove?’
The embarrassing moments do seem to be piling up, edging toward critical mass. On a family vacation to Martha’s Vineyard this past summer there was a precarious, slip siding walk on sandy wooden treads down the side of a dune. All eyes on the beach turned my way to see if I would make it in one piece. “You came back?” said an incredulous middle-aged stranger to me the next day.The embarrassing moments do seem to be piling up, edging toward critical mass. On a family vacation to Martha’s Vineyard this past summer there was a precarious, slip siding walk on sandy wooden treads down the side of a dune. All eyes on the beach turned my way to see if I would make it in one piece. “You came back?” said an incredulous middle-aged stranger to me the next day.
A paraplegic friend of mine told me recently that he purposely broadened his viewpoint on this issue, using a wheelchair to get around and more efficiently do the workouts and activities he loves. The chair is nothing more than a transportation device, he said — sticking to that idea about wheelchairs was useful for him. He said he wasn’t giving up on rehabilitation, but instead was making a practical agreement between him and his goal. He gave himself permission. That appealed to me.A paraplegic friend of mine told me recently that he purposely broadened his viewpoint on this issue, using a wheelchair to get around and more efficiently do the workouts and activities he loves. The chair is nothing more than a transportation device, he said — sticking to that idea about wheelchairs was useful for him. He said he wasn’t giving up on rehabilitation, but instead was making a practical agreement between him and his goal. He gave himself permission. That appealed to me.
Yet as much as I understand my friend’s wisdom — the joy that can be found in acceptance, in embracing limitations, and in exceeding or transcending the expectations that most people hold about disabled people — I can’t let go of my sense of wonder and excitement at the human ability to walk.Yet as much as I understand my friend’s wisdom — the joy that can be found in acceptance, in embracing limitations, and in exceeding or transcending the expectations that most people hold about disabled people — I can’t let go of my sense of wonder and excitement at the human ability to walk.
Years ago when I first contemplated a book, I wrote to my editor to tell him excitedly about my observation that there had been 100 million views of the IMAX film “To Fly!” Perhaps I could expose people to an equally wondrous endeavor, “To Walk.” Infants and infants’ parents view it that way, I wrote. The injured and recovered who rise out of wheelchairs do. Walking is extraordinary to the researchers who’ve spent careers studying the complex human biomechanics (and still don’t understand it) and to the evolutionary scientists who have also yet to satisfy themselves with why man rose upright when his ancient ancestors did not. They describe man’s first steps — the byproduct of anatomical mutations in the skull, spine and femur — as the most singular event in human history. I was constructing the book’s arc and building to its assumed endpoint, walking again.Years ago when I first contemplated a book, I wrote to my editor to tell him excitedly about my observation that there had been 100 million views of the IMAX film “To Fly!” Perhaps I could expose people to an equally wondrous endeavor, “To Walk.” Infants and infants’ parents view it that way, I wrote. The injured and recovered who rise out of wheelchairs do. Walking is extraordinary to the researchers who’ve spent careers studying the complex human biomechanics (and still don’t understand it) and to the evolutionary scientists who have also yet to satisfy themselves with why man rose upright when his ancient ancestors did not. They describe man’s first steps — the byproduct of anatomical mutations in the skull, spine and femur — as the most singular event in human history. I was constructing the book’s arc and building to its assumed endpoint, walking again.
But I am a hard case. The only wheelchair I possess I saved for my mother, now 90 and wisely thinking ahead. I went home with it when I was discharged from the hospital five years ago, and eventually I stuffed it in my barn, well out of my sight. The rest of my early assistive tools — crutches, raised toilet seat, walker — are gone. The tale of them strewn rudely across my driveway in a fit of rebellion was an early signature moment in my recovery.But I am a hard case. The only wheelchair I possess I saved for my mother, now 90 and wisely thinking ahead. I went home with it when I was discharged from the hospital five years ago, and eventually I stuffed it in my barn, well out of my sight. The rest of my early assistive tools — crutches, raised toilet seat, walker — are gone. The tale of them strewn rudely across my driveway in a fit of rebellion was an early signature moment in my recovery.
My best friend, Brad, the one who rushed to my address five winters ago to build my wheelchair ramp so I could be discharged to go home, never fails to smile at the rebellion story. It is about right for me, he knows. I’m known for my fight. I can’t help thinking what he will think when I finally take a seat.My best friend, Brad, the one who rushed to my address five winters ago to build my wheelchair ramp so I could be discharged to go home, never fails to smile at the rebellion story. It is about right for me, he knows. I’m known for my fight. I can’t help thinking what he will think when I finally take a seat.
Todd Balf is the author of “The Last River: The Tragic Race for Shangri-La.” He has contributed to The New York Times Magazine, Harper’s, Outside and other publications, and is at work on book about his disability experience.Todd Balf is the author of “The Last River: The Tragic Race for Shangri-La.” He has contributed to The New York Times Magazine, Harper’s, Outside and other publications, and is at work on book about his disability experience.
Disability is a series of essays, art and opinion by and about people living with disabilities.Disability is a series of essays, art and opinion by and about people living with disabilities.
Now in print: “About Us: Essays From the Disability Series of The New York Times,” edited by Peter Catapano and Rosemarie Garland-Thomson, and published by Liveright.Now in print: “About Us: Essays From the Disability Series of The New York Times,” edited by Peter Catapano and Rosemarie Garland-Thomson, and published by Liveright.
The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips. And here’s our email: letters@nytimes.com.The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips. And here’s our email: letters@nytimes.com.
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