The Athlete in Me Won’t Stop

“Defiant”

I like that.
Please continue to be so, and may the odds always be in your favor.

I have a spinal condition, (nothing like the author's) that also leaves me feeling "in-between." Mostly, no one would know or notice, but there are specific barriers to what I can do, occasions where something is noticed, and greater impact as I grow older. I haven't identified as having a disability, not for any reason of shame or stigma, but because I don't want to appropriate an identity that's not accurate. On the other hand, there is something empowering about claiming one's difference, and the disability justice community is fierce!

The virtue is in the striving; not the accomplishment. Strive onward.

I agree that you shouldn't give up on nerve regeneration. I have two stories of nerve regeneration over time. About 15 months ago, my father-in-law had an operation on his shoulder to repair an injury that had left his entire right arm paralyzed. One doctor said his arm would be fully healed in seven weeks. A wiser one said that it could take a year and a half or longer to get back full function. As my FIL nears eighty, he is looking forward to working in the garden again this spring for enjoyment and exercise. We expect his hand and arm to fully recover. Every day, he gains strength, sensation and function. Likewise, my own father, as a boy, experienced nerve regeneration over a much longer period after having fallen from a tree onto a plow and severing his arm all but for a tendon or two. The physician wanted to amuputate because he said the arm couldn't be saved and would never function again, but my grandmother convinced him to reattach it. She figured it would be better to have a non functioning arm than no arm at all. After the arm healed, my father worked for years first to "open up" the elbow joint, which had healed bent, and then to gain movement and strength. Not only did the arm heal, but my father went on to be a great pitcher and earn his living as a highly skilled artisan. Keep up your own hard work, cherish your body for having survived something tremendous and please continue to share your inspirational story with others!

I can empathize with the author completely. Eight and a half years ago I was a Masters long-distance runner on the wind-down, ready to bow out as gracefully and graciously as a lifelong athlete can when I developed a neuromuscular disorder, adrenoleukomyopathy, and suddenly a lot of things changed. My condition is focal, so I have limited mobility with my right leg and my sense of balance is affected. I cannot run or jump, and sudden stops and changes in direction are difficult and painful, and still, having once been a highly competitive athlete, I make it all look pretty easy to most observers, who can't see me as anything but able-bodied despite my obvious rigid-legged limp - until I have an especially bad day or they watch me try to climb up or down stairs. Then they think that I have a bad knee. Keep working on it, Todd; it might never get as good as you want, but the effort itself, frustrating, tedious, and exhausting, is better than just giving up and taking the easy way out.

I hope you recover as best you can. the experience of that effort will be welcome again when age creeps up. pushing yourself at 45 is a lot easier than doing it at 75. But it's the same drive. and we're on it together.

Your condition is unique so your possibilities of improvement are endless. Im a trainer and I admire you for not giving up. Because of this you will continue on.
Walk until you can walk no more. Live until you breathe your last breath.

Massage, acupuncture, muscle activation therapy and swimming can all improve your range of movement. Switch up your work out and ride a bike!

I worked for a decade in a physical rehabilitation hospital for ten years, and I saw a number of people whose injuries--and resolve--were similar to yours. I could not help but learn from them, and from the physiatrists, physical therapists, occupational therapists, recreational therapists, and family members who worked with them. We had a bike at he hospital that had electrodes that attached to people's muscles that worked the muscles as if the person's legs were actually working. I watched many spinal cord-injured patients use that bike, sweating profusely, but feeling proud when they were done. Thank you for sharing your story. It's one many people need to read.

frustrating for sure. if I were you and I was, I would go for it and not stop.
You will be dead a thousand years.
i relearned walking at 18 and now , 40 years later, marvel at reacquiring my hockey skills and feel that just might have been another person or a dream.

keep punching

I hate categories. If I were you I might fish. Then I wouldn't be disabled at all. I would be that semi one legged guy that likes to fish.

A very thoughtful, well written piece. When one suffers an injury that renders one no longer able to do that which was a part of one's life before - it forces one to redefine one's self. It is much different than when one, due to age or wear and tear, can no longer engage in those activities that one used to do. That disability is gradual, one has time to adjust both mentally and physically to what is becoming the "new normal". In the situation such as described by Mr. Balf, that is not the case. On the one hand, there is the hope that some invention, procedure, medicine, etc. will reverse the situation as quickly as it developed. On the other is the "grieving period" that one must work through so that an acceptance or at least a grudging acknowledgement that this will now be the new normal. It is not easy at any age - and the adjustment that one must undergo always brings with it the "what ifs or might have been that can fill the long hours of the night when one cannot sleep.

You certainly have given this a lot of thought, which is something.

your legs didn't define you,your athletic sensibility did. This attitude and forward thinking has gotten you to this point and will take you further down the road of unknowing.

Thank you for the beautiful article. You have the most important attribute of a successful athlete and that is heart.

Godspeed on your recovery and eventual "acceptance". I know from where you come since I became a paraplegic sixteen years ago but have not let it stop my life from rolling in down the road albeit in a chair.

Don't let a spirit like yours be limited by medicine or science. As we are discovering in cancer, every individual accepts it differently. And then, goes on to achieve widely different capacities! Please join a gym and go at least three times a week. You may be surprised what your other limbs can do, as well as changing your leg capacity! (I know an 83 year old with spinal stenosis who lifts 14 tons three times a week!) And whats this addiction to belong to a specific group!! It is our differences that make us great, AND allow us to achieve our objectives. Good luck for an unlimited future! Alan. [email protected]

I personally grok your limbo-- and your undying athletic fortitude (thanks), and missing the burn. Full mobility is just plain hard to lose. No matter what anyone says, wise words included, it is a great loss, and of course, I've heard of radical acceptance.
Good luck to you. I've heard of Feldenkrais helping in surprising ways.

Athletic endeavor involves pushing yourself beyond your limits and outlasting everyone else.

Thank you for this article. I wish you well on your journey. Don't give up hope for the possibility of slow (perhaps glacially slow) but continuing healing of nerves. I also have a weird partial disability, going on 8 years. It is a delicate matter to balance between acceptance and perseverance, and I slip often, but find my way back. Every week I count little things I could not do a few years ago that I can do now (cutting carrots, for instance). I can no longer hike big mountains or ride my bike around the Rockies, etc. But I've taken up swimming, and little by little I swim farther. We still have so much to be grateful for. And we gain compassion for so many people who live with constant pain and limitation, but who carry on as best they can. keep writing!

Words can be strange. Like people. Understood.Misunderstood.
Transparent. Hiding. Inviting. Distancing. Welcoming. Confusing.
Toxic. Engaging. Binary, as in either/or; as in WE-THEM.
In-between? Not belonging here; not belonging there. No longer
like Then.Not at peace with oneself Now. A challenged identity.
Challenged and challenging behaviors. And opportunities. Uncertainties. Unpredictabilities. Ever present impermanences.And "In-between" can, and does, become a bridge enabling additions to an internal, intimate I, and both former and newer,created social me’s to interact with self and others. Family. Friends, Neighbors. Strangers.Many, many thanks Mr. Balf, for sharing your Bridging quest as you continue moving from-to..

Words can be strange. Like people. Understood.Misunderstood.
Transparent. Hiding. Inviting. Distancing. Welcoming. Confusing.
Toxic. Engaging. Binary, as in either/or; as in WE-THEM.
In-between? Not belonging here; not belonging there. No longer
like Then.Not at peace with oneself Now. Challenged identity.
Challenged behaviors. Uncertainties. Unpredictabilities.
Ever present impermanences.And "In-between" can and does becomes a bridge enabling additions to an internal, intimate I, and both former, and
newer,created social me’s to interact with self and others. Family.
Friends, Neighbors. Strangers.Many, many thanks, Mr. Balf, for sharing your Bridging quest as you continue moving from-to..

It's been more than three decades since our time together at The New Hampshire, but I never pass up a chance to read a Balf byline. Perseverance is a powerful force: It has carried you a long way on this latest journey and may it help see you across the finish line! Best wishes, from one MUB rat to another.

Dear Todd,
Thank you for this very inspiring article. You are a profile in courage and I wish you continued rides and strength and health.

You FEEL you're in limbo... but you are actually a person with a disability. The real question is not whether or not you are disabled: you are (at least for now, at least somewhat). The true choice is whether or not to embrace the fact of your disability.

I recommend diving into being disabled because you have much to gain. There are some losses: your former identity, accepting the stigma of disability (which btw you are carrying already), your ability to do some of the things you love in the way you loved doing them (which btw you have already lost). But the potential gains are rich and real. There is no reason for you to stop being an athlete or dancing at summer weddings.

You know how encouraging you find the support of your elderly neighbors? Younger people with disabilities are going to be even better because they will share your experiences even more. You know how much you loved being athletic? There is a world of athletic striving and accomplishment out there for you if you embrace sports for people with disabilities. You may find a wheelchair is just the right tool for competing in a 5K; that doesn't mean you have to use one to go out to dinner. I find that the greatest gift of disability is to develop creative problem-solving to the level of a superpower. When you have a deep understanding of your abilities, resources, limitations, and most of all your passions AND you can let go of needing to do things the "normal" way, life can be so much better.

These invisible damages are impossible to convey to the average person. Staying out of sight is not an option and I'm glad you don't. You must be a good soul because I would probably be very angry. My RA is like that and it does get trying especially when I look perfectly "normal" and someone asks me what's wrong when I can't keep up like I used to. Hang in there sir.

Ekso exoskeletons?

Thank you for sharing with us Todd. I love these weekly columns here, but yours is the first that made me feel like "one of the tribe" as I have a spinal injury like yours, only in my right leg. I have the added complication of lingering back pain and stiffness with it, so I am not as mobile as you are, but I am trying. As a former champion racewalker, the athlete in me wants to beat this thing. We've all been through training injuries and it should be just like that, where we rehab and recover, right? NOT! I rehab and get a little more mobile, but the buckle in my leg never quite goes away; strong muscles are not enough to make up for nerves no longer firing in my leg and the numbness in it, including to the touch. I have not tried cycling outside the gym, so that might be one avenue for me. Please keep on challenging the limits and writing about it, as readers like myself get renewed inspiration from reading your words!!

I was physically active in life all the way into my late 50's - early 60's. P.P. M.S.
set in and turned that life upside down. Surrender to reality was harder than
acceptance. When there was no question about getting across the room without
a walker, I find myself glad there IS such a thing. I suppose a wheelchair is next and I'll be glad there is such a thing as that when the time comes.

Todd,
Deeply moved by your story, courage and longing. As an aging athlete, glimpses of deteriroration enter my body, periodically challenging the best and worst parts of what is here and what destiny offers. Each day I am able to take to the court to train is a treasure beyond words. And, yet having a pulse on loss gives us the opportunity to deepen our soul.
Be well, Todd

Hang in there. I am 7 years post spinal cord bleed when I was 42. The first few years were very challenging both physically and mentally. I'll always be an "in-betweener" with my numbness and the weakness in my legs. But I continue to improve each year. I now hike, bike, and am a big fan of the Pilates reformer classes. Pliates, for me, has been like next-level physical therapy.

As I write this, I want you to know that I'm not trying to be cruel or trying to minimize the difficulties, pain, and challenges of others. Everyone has their own burdens to carry, and to each of us our own burdens are heavy and real. Sometimes, though, it can be helpful to refocus away from ourselves and give thanks for what we don't have. Until a year ago, my best friend was a hiker, biker, gym rat, tennis and golf player. To some degree, his pride and sense of self came from the power of his body. Very unexpectedly, he was diagnosed with ALS. He is now unable to do any of his favorite activities. He is barely able to walk and has very little use of his hands. He will gradually lose all abilities of his body and will not be able to do anything for himself. With a year or two, he will die an agonizing death from this disease. I'm just trying to offer another perspective. When carrying our burdens, be thankful for what you CAN do, not for what you can't do.

My heart aches for you, and not with pity. With an understanding of exactly what you miss, and long for. For me, I always felt my legs have been something more than a convenience - they were transportation. I always knew with absolute certainty I could go out my door and to the other end of the earth under my own power. Then I too had a back injury that has slowly, slowly, reduced my ability in the years since it occurred. So it's bittersweet. But I understand not wanting to go to the "other world". Stay on your unique path.

Very sorry about your illness.

But surely your legs do not define you - do they ?

You have a strong heart, listening to it may help you
in your defining of yourself.

Thank you. Many of us will fare better because of this piece.

"I hate shutting the door on the possible."

"To pull closer to that world feels like giving up on the other."

"I am close enough to the physical life I adore to touch it... I'm still far enough away that young children stare and acquaintances offer to drive me from place to place."

I wasn't surprised to reach the end of the article and see in your bio that you're a published writer. I was surprised that there was no mention, yet, of Pulitzer or Newbery or National Book Award. You're a tremendous writer.

Thank you for sharing this perspective. You're writing from where you "stand," or aren't standing anymore, and we need to hear your voice. Your legs made you, but so did your writing and your heart. Hope to hear more of each.

Keep going, my friend! You will continue to astonish yourself.

Greetings from an old friend, Todd. We shared an apartment in Kittery, Me. and we played tennis on those famous rd clay courts at the New Hampshire Hotel in Newcastle,NH in 1985 Good memories. After 60 years of tennis and many physical adventures I had to replace my knees. It is always a struggle ,but worth it nonetheless. Good health and cheers mate!

Wow...you've perfectly described my state of mind. I'm 70 and had a skiing accident in January 2014 in which I bruised my spinal cord. I was unable to move anything below my neck. I spent 6 weeks as a rehab in-patient to try to regain function in both upper and lower extremities. I'm using a cane on the left side and continue to work hard in the belief that I'll 'get it back.' I was a collegiate athlete and a life long outdoors person. I feel very much in between. And, sometimes I feel like I am so close yet still quite far from being able to jog, go for a long hike, climb a hill (let alone a mountain), and so forth. I don't think of myself as having a disability but I obviously do. As you say, the athlete in me keeps pushing me along as before toward a goal that's just beyond my reach...for the moment.

I don't know how you managed to get inside my head and read my thoughts. A year after my fall and subsequent c3/c4 diskectomy and fusion, I'm just beginning to regain enough of my gait reflexes to be able to use a cane instead of a walker. I used to think nothing of riding 50 miles on my bicycle for pleasure; now I envy people who think nothing of walking across a room to fetch a book. My consolation is that I can still swim to keep reasonably fit and that I have the support of kind family and friends to cheer my steady, if slow, progress.
It sounds trite to say that you can't change the past; all you can change is your reaction to the past. But if you can think of walking the way you used to think of riding a unicycle, you can derive some pleasure and satisfaction from dealing with disability. Fate has given you a new hobby, you may as well learn to do it well.

Trying to understand reality, whatever it is, has proven to be a difficult task many of us never face. Accepting it is the most difficult and the clear strength underlying this writing indicates the pursuit of that balance.

For what it is worth I respect your strength and fortitude.

Aside from the subject matter, this was a beautiful piece of prose.

I hope you will keep pushing yourself, and that your progress is monitored by others-- as objectively as if you were a science experiment. Your progress may lead to progress for others. Good luck, good healing.

One route to greater freedom, in my experience, was to return to the wheelchair as a sports vehicle. They've come a long way from the modified Everest and Jennings chair that Bobby Hall used in 1975 when he became the first wheelchair athlete to complete the Boston Marathon. I too used a modified E&J for daily roadwork along the Charles River but it was wheelchair basketball that really did it for me.

Back then it was mostly Vietnam veterans and post polio folks in a slow game with lots of collisions and reliance on the pick and roll. Then after Quickie came out with their sports wheelchair, and star players such as Mustafa Hani emerged- a French Algerian who grew up in a segregated education system that put all the disabled kids together all the time - who moved as fast and as fluidly in a sports chair as many kids today do on bicycles and skateboards, everything changed. An extremely competitive intentional alternate sport emerged.

Competitive physical contact sports are a medicine all their own. And using a wheelchair to experience them is anything but failure or surrender.

I am losing speed and capability because I am 73, and have severely arthritic knees. Though I am way slower, I can and do ride whenever possible. Your insights are valuable to me.

Todd I emphasize with your dilemma. I am almost seventy and a survivor of both cancer and heart disease. Mostly I struggle with age related back and joint issues which while not anything like your paralysis slow me down and sometimes make even bending over seem hazardous. As someone who was an avid swimmer and cyclist I haven't done either in a long time. I am trying to make a comeback with walking and find myself constantly looking at my time and frustrated that I can't go faster than a 20 minute mile. It seems like an easy platitude but I have to feel grateful for simply walking, especially when it is not painful. Very different from your situation but I feel a bond with your words. The only grace seems to be in going forward, summoning as much strength as we all can no matter what our tribe, for as long as we can.

Thank-you for this essay, I find it sort of encapsulates the way my husband feels. He does not suffer from an injury, but from a rare muscle wasting disease. However, it doesn't affect all his muscles the same, so although he looks fine standing up, walking is okay if the pavement is smooth, but he can't navigate curbs or steps at all. Also, if he falls down he can't get up without help. He used to run and then before his diagnosis, thought he was getting old and started walking. Then started having falls, some of them bad. He has changed what he does, after some nagging from me. He goes to a gym now and works out there. Always competitive, he's still working on breaking old records. It will not get better, but he is trying to stay away from the walker as long as possible.

There are many of us that are "sort of in between." In 1999, a few months after I injured my foot, a stranger heard me speaking to a friend about how I was doing. He said, "Maybe you won't be able to heal until you stop being so angry." It gave me pause. I never full healed physically but I did find a way to accept my physical limitations and most importantly let go of my anger.
Thanks for writing this essay. It speaks to many of us.

I wasn't an athlete but a workaholic business owner in a physically demanding job. Spinal stenosis is bearing down on my vertebrae. I've lost 90% of nerve conductivity in both sciatic nerves.
I can do most things I try. I think that's the key, trying. But I can't get up off of the floor without something to lean on or by assuming a crab like position that lets my arms lean on my thighs to lift my upper body. I walk almost heel to toe because my legs have little strength to lift my feet. I shuffle along as fast as I can. I can't run because I lack motor control. I rarely drive the car anymore and my wife drives when we go somewhere together. I have a friend who scares me because he still drives though he can't walk without his walker. He has Parkinson's Disease.
There is pain from my back to my feet along with edema. I have strange sensations in my feet. Electric shocks, vibrations, rhythmic taps. I can't bend the toes on my right foot. When I try it hurts at my instep.
I stay busy with household chores and maintenance. I no longer work because I can't stand or sit for long periods. I finally sold the last of the inventory and tools to a past employee with his own business.
I concentrate on what I can do. I haven't forgotten the things I used to do but I don't go there much any more. Right now I'm a little preoccupied with another issue. My daily radiation therapy for prostate cancer.
As bad as you think things are you find that they can get worse.

Thank you for this personal perspective. I don't know how I would have the will to go on if I couldn't get to that "red zone feeling," and you just helped give me a glimpse.

Thank you. Recently suffered nerve damage to my spine and am dealing with similar issues.
Struggle can become a way of life, giving up unacceptable.

Thanks for your thoughts Todd. It can be difficult sitting in on friends' discussions of their workout regimens, treks to distant lands, or their simple complaints of aches and pains that might sideline them for a week or two. 18 years out from my own injury, and with a similar ASIA D diagnosis, I'm reminded we are neither here nor there - paralyzed or recovered. And yet, I would rather have the uncertainty.

I've met so many people over the years in my treatment who soldier on through much worse predicaments; they remind me to get out of my head and just keep on living. I miss the mountain trails, the feel of the ocean, the warmth of the sun on my skin. But there is so much that I've had more time to appreciate in a life lived slower - music, art, literature. And so much that I'm reminded daily that we can contribute back to our communities.

Good health to you.