Thank you so much for sharing your story. I had a work colleague whose mother is a lot like your grandmother. He and his twin brother were born with muscular dystrophy, and doctors said they would never be able to walk unaided. Their mom ignored that diagnosis. and both learned to walk at an early age and grew up active in sports and the outdoors. The world needs a lot more people like their mom and your grandmother.
52
As a retired physician who dealt with many patients with chronic disabilities I found this essay spot on, educational, and, simply, the Truth. The Truth about Medicine and its paradigms, the Truth about owning who we are and our sovereignty.
169
You have a beautiful use of language. My 90+ yr old aunts
gave me this advice"if a doctor gives you good news believe them if they give you bad news don't believe them they don't know everything"
69
I'm reminded of Wilma Rudolph, who was born premature, contracted polio, and was told by her doctor that she would never walk. But with her mother's unflagging belief and support, and lots of hard work on her part, Wilma went on to become an Olympic gold-medalist in track and field.
75
I am so glad that you had an adult, your grandmother, who helped you to be all that you could be.
But I am also pretty horrified by the advice you were getting from your particular doctors. I also have cerebral palsy, although a much milder case of hemiplegia, only my left side. Many years ago, I was taken to a crippled children's clinic, as they were then called, where I had a wonderful doctor, Dr. Kompeer. Instead of focusing exclusively on my problems, he told my parents, "she's not more breakable than other kids. Let her go ahead and do everything she can do."
Of course, that didn't cure my cerebral palsy, which I will always have. But I took that advice to heart and have lived a fairly adventurous life, including sports like hiking and sailing, which don't require a perfect body.
I am so sorry that the medical profession hasn't used Dr. Kompeer's example more, because "be everything you can be" is, in my opinion, even more important advice to those of us with CP than for everybody else.
48
I had a mother much like Mr. Altmann's grandmother. At 14, I broke my neck in a construction accident that left me paralyzed from the neck down. Three weeks or so after the initial injury, I began getting the return of feeling and function. Overtime, about three years, I learned to walk again with an arm crutch. Several hand surgeries allowed me to write and dress myself. This was all do to the efforts of doctors, physical therapists and my mother as well as friends and family. My mother told me that nature neither rejoiced nor mourned my condition. Whatever life I would have was in front of me, not behind me. Nearly 60 years has passed since I was injured. I finished high school, college and law school. I have practiced law for 40 years. I am married with three adult children and eight grandchildren. Life has been good not withstanding the obstacles.
73
Thank you for this article. In my experience as a physical therapist working with individuals post-stroke or brain injury, friends often remarked, “that must be depressing.” Not in the least. The power of the human spirit and the plasticity of the brain open the door to limitless potential. Your story is a prime example, and should give anyone who reads this the fuel to persevere and exceed expectations. Hard work? Hell yes. Possibility of improvement: always - with no date of expiration.
59
It is unfortunate that this person was cared for by a doctor who thought he had the power to forsee outcomes. I am a physician (internal medicine) and scientist (biochemist). I have many years of experience in patient care but rarely saw outcomes being presented in an absolute fashion. Doctors don't have this power. The patients were almost always presented with information given as a statistical probability dependent on outcomes in studies of different treatments or nontreatments. There have been great advances in neuroscience in the past few decades. It is now recognized that the nervous system has some plasticy and ability to make new neuronal connections with the right therapy. Years ago this was not thought to be so. Physical therapy is a good and efficacious treatment for many physical disabilities.
Doctors are human and not perfect. My son's pediatrician told him that he should get used to being "short" because his height was significantly below the median in 5th grade. He is now 19 years old and over 6 feet tall. Lance Armstrong was told by the head of M.D. Anderson Hospital, a famous cancer center, that he would die in 6-12 months. He then recovered and went on to win the Tour de France 7 times. My 80 yo mother was told by her cardiologist she was going to die soon, had her given "last rights" and scheduled for hospice. I decreased her medications, told her she had no reason to die, and gave her PT. She went on to live independently to over 100. Don't give up.
51
Dear Mr. Altman, you know and you'll never forget :"DON'T EVER GIVE UP!!!" I take my hat to you, having experienced a much easier task; learn to walk properly after polio and aseptic necrosis (disappearance) of the left hip joint. One leg short, I was limping badly and the target for unfavorable comments. My mother to whom I ran for help looked at me and told me: "There's only one way, you HAVE to learn to walk, and I'll see to it". I still hear these words from 65 years ago. The means and methods have changed, but the most important component did not, the will to achieve the goal, no matter how tough and how long it takes.
You've done it and you'll keep at it.
My blessing,
Ami
24
I believe that even well-meaning doctors have to "cover" themselves by presenting a worst case scenario.
About ten years ago a good friend of mine was shot. He was 6'8'' tall and 300lbs of solid muscle.
He took eight 9mm bullets from a psychotic neighbor who went off his meds and had a gun.
My friend was supposed to never walk again. I watched him go from a wheelchair, to a walker to a cane. He lives in a five story walkup. The last time I visited, he told me to call when I was downstairs, as his buzzer wasn't working, and he'd have to come down to let me in.
Doctors don't know everything.
33
One of my favorite memories from my time working in a sheltered workshop is dancing with a wonderful man who had cerebral palsy with such great spasticity that he was unable to feed and toilet himself. He used a wheelchair but that never stopped his huge smile and big heart. Being black and from a rural area, he had little if any formal schooling, but his personality kept our sheltered workshop humming.
Everyone needs to be encouraged to reach their full potential, disability or not, physical or mental disability or not. Without seeing Mr. Altmann's gait, I venture that it is beautiful because he is moving under his own power, because he didn't give up and neither did his grandmother.
22
Loved this column. Thank you for sharing.
3
Idelio Valdes was the most beautiful, healing, loving and inspiring person I’ve ever met. He never let his disability stop him. He, also, was inspired by his grandmother.
https://www.fddc.org/news/award-nomination-form
I found the tone of this article very off putting. I'm surprised that other readers liked it so much.
if doctors are so evil, don't go see them.
I'm not sure what 'ableist' means except that it's irritating.
Very hostile article.
1
Beautiful.
2
This is an inspiring piece that contains a major fallacy. Mr. Altmann confuses the medical model (which I am not convinced he understands) with his pediatrician's misapplication of the medical model. It is discouraging to see people in the humanities poo-poo science and scientific theories.
3
Statistics.
Science lives it and breathes it because to be proper science, "truth" must be generalizable.
Unfortunately, when generalizations are applied to the individual, one gets something quite a bit like determinism.
And determinism is about as pessimistic as it gets.
8
Lovely and heartwarming story. I admire your courage, dedication, and sensitive soul. Nice to have people such as yourself on the planet to remind us to be sensitive and caring to everyone we meet as we know not of their life sufferings.
8
I'm abled and have no experience remotely like Mr. Altmann's. But I'm a physician and scientist who knows how limited our knowledge is of human physiology and biology. No doubt there are limits on what we can and can't do, but no one fully understands them. Statistics, though useful in may situations, are based on population averages; no individual is a statistic. I always cringe when I hear someone say in a movie that they have six months to live. Most doctors never say such things; and if pressed, will only give median survival: half will live longer, half will not be so lucky.
That said, suggesting to a patient that anything is possible has its own downsides. It's always a balance to maintain hope, but not burden the patient with dashed hopes, or with unrealistic expectations. That balance is very hard to strike when dealing with something as complicated as human bodies and minds.
30
My late partner was a physical therapist who made house calls to several patients with multiple sclerosis. One, a lawyer, became "disabled" at a fairly young age.
However, with several PT visits a week and attention to exercises, he was able to continue working in Surrogate Court as a hearing officer until retirement age. Yes, he needed an aide to assist him throughout the day. But his mind was agile and engaged in his work, which certainly gave him quality of life.
Sadly, his health insurance balked at covering the costs of his weekly PT visits. Such irony in that, with PT, he was able to live a full life which means contributing to the common weal through paying taxes!
Mr. Altmnn's article just reinforces the power of the human spirit to seek life.....
21
Never give up! Such an inspiring story that warmed my heart. Thank you for your honesty.
My disability was severe mental illness and I suffered terribly for 35 years. Deep depressions with bouts of mania and insomnia led to suicide attempts and many hospitalizations. But I never gave up. No one else could fix me though. I had to take responsibility for my own recovery which included getting sober and embracing 12-step programs. My life transformed from one of misery to a life worth living. I did have help (psychiatrist, therapist, medications, DBT, Chinook Clubhouse, and working with Windhorse) were among some if the things that helped. But it was ultimately up to me to stop playing the victim. Alternative medicine is high on my list as traditional western medicine has failed to cure my physical ailments. I've made it to 64 and I'm rejoicing!
20
Thanks so much for writing this Mr. Altmann. I especially loved the part about walking to your bed at night and your affirmation of your beauty.
13
In the medical hierarchy, doctors are gods and in general, everyone else is below them. They also rarely examine a patient's ability. They examine charts and films but not a patient's alignment, mobility, or potential for mobility. And they do it in ten minutes. Which is not to say they don't mean well. They are beholden to corporate hospitals, greedy insurers, and they have exorbitant malpractice liability costs. But they are told they are the cream of the crop and the alpha. I know, I've been there.
8
Incredible article. Although I am able-bodied, I have two chronic conditions which gave me much discomfort. I am a Senior Citizen, and I always first see medical Doctors, who told me there wasn't much I could do. Many doctors stereotype older people, assuming we 'naturally' get aches and pains, and we just have to live with them.
Not me. I ignored their comments, did research and found supplements which I now take daily, and my symptoms are practically non-existent. The doctors don't want to hear what has eliminated my symptoms, which is a terrible shame. I urge everyone with pain, discomfort, or like the author, physical limitations, to never give up. Be open to any and all Assistance, and have a positive attitude.
My conditions? Common among the elderly: Arthritis and IBS.
16
@Resharpen: Terrific comment and thank you!
2
I too had some bad expectations after being paralyzed in my left leg and being run over by a car in my parents driveway, before the age of one. A doctor made a misguided injection at my birth. He tried to shift the blame to an attending nurse but my mother threatened suit until he admitted his error. She witnessed the injection. He hit the sciatic nerve. At eleven months somehow i was run over, breaking my right femur, compound fracture, and pelvis as well as some ribs. The path was a lucky one, as any other would have probably killed me. My mother was told that i would loose the ability to walk as a young adult. At 67 I walk well. My injuries don't compare to the author, however I beat the odds with the help of some great doctors and 1950s technology. I do know that my abilities seem normal to most but I am proud to have them.
16
Under the title of this piece, and the subtitle is "By John Altmann" and then in even smaller font is "Mr. Altmann is a writer".
I eagerly await more of your prose.
9
“I still am and forever will be a disabled man”
I recently read a NYT article that suggested you think of yourself as a man with a disability rather than a disabled man.
It’s a powerful distinction in my humble opinion.
Strive onward and kudos to your grandmother.
11
Dear Mr. Altman,
It was a feeling of serendipity to find your essay in The New York Times this afternoon. I had spent the morning seeking an orthopedist for my son and had just arrived home from a physical therapist's office to get some paperwork to complete. I needed a break before diving in again and started to read The NY Times. Your article seemed to be waiting for me as a gift of inspiration.
Your grandmother sounds like quite a lady. Her determination that you would walk and your perseverance are reminders that human beings can accomplish the remarkable in spite of the odds against them.
You have a gift for writing, and you took me on a journey of hope with your words. May other parents who read your essay find your words as inspiring as I did. It is easy to feel overwhelmed at times, but in the end, it is so important to believe there are no limits to what can be accomplished.
Thank you for sharing what if felt like to take that first unassisted step. My son cannot walk or talk; so he cannot use words to share how he is feeling. However, I can see it in his eyes that he wants to try, and you have now become his voice. Thank you.
Sincerely,
Carolyn
47
Thank you for acknowledging your disability and having the courage to push the boundaries set by doctors to that disability. The opinions of people often seem to set those with challenges like yours apart and in a sense that is their disability, their inability to see every human being as equal in dignity. Your efforts it seems were not to be 'perfect' what ever that means, but to see how much you could accomplish with the body you have. Inspiration is not the word for it. Rather it is the courage to be human with what ever challenges we have and that transcends having trouble walking or seeing as is my particular challenge.
4
I was happy to read Mr. Altmann's overcoming a grave disability, despite the prognosis of an early doctor. He was extremely fortunate to have such a driven grandmother helping him to walk. Yet the author's tone at the end of this essay is one of hostility towards the outside world that I don't quite get. Perhaps I'm naive about some people's attitudes towards the disabled, but is Mr. Altmann so oppressed by discimination that he really believes everyone is indeed staring at him?
2
@Tom Quiggle Paraplegic for the last 54 years. To be succinct, yes. It is a strange journey filled with the curious, much ignorance and very often outright stupid. My wife of 43 years noticed and marveled at it on our first date in 1973. He's not being hostile he's speaking a cold hard truth.
3
Thank you for your wonderful essay. I am humbled to learn from you.
2
I was to live at most to 1970 according to the doctors.
I lived as a teenager more fully than I was supposed to and did more than allowed physically for I thought, "O.K., if I am to live a short time, it will be on my terms. " I'm still here "on my terms" getting a PhD in Law and fully healthy 24/7 in activism in/through/by/for human rights for over fifty years.
32
John, thank you so much for sharing your story. You fill me with hope.
6
Your story is heartwarming and must not be dismissed as an anomaly. According known laws of aviation, a bumblebee can't fly.
It was fortunate for you to have descended from a grandmother who did not blindly follow medical experts's advice based on their respective filtered data sets. Given that experts's profound ignorance of the electrobiochemical functions of human organisms in diverse ecosystems, it is incumbent upon each patient to take personal responsibility for understanding the limitations of medical experts' advice and act accordingly.
16
I’m glad the author is doing well.
But I wonder what people who have been told they won’t walk, and have tried very, very hard, and still can’t walk, think and feel when they read essays like these.
Or the parents who have moved heaven and earth and spent all their savings on therapies, and their kid can’t walk, or can’t speak.
15
@Di I think Mr. Altmann acknowledges this by not denying his disability. Everyone with a disability tries hard and goes as far as they can with the bodies they have. And in that attempt is their triumph not the idea of some notion of what they 'should do'.
7
Bravo Zulu. No doubt that you and your grandmother have what nobody else can provide. Courage. May I share the story of my son, born prematurely. A brain scan at age 2 clearly showed the lobe with damage and the official diagnosis of CP. My wife and I asked the doctor about the level of impairment. I can still remember hearing "not likely" to the list of skills. We ignored it and engaged our son immediately in PT and OT. It continued throughout his teenage years. He graduated from college and is employed by a Fortune 250 company. He does everything that was on the "not likely" list. He does not drive a car. But, public transportation is readily available to us.
Everyone should have a grandma like yours. It would be a much better world.
32
This is a wonderful story of common sense and perseverance. It, however, makes a common logical error. That error is in generalizing from the individual to the larger group or population. Just because one doctor said no, does not imply that all doctors would have said no. Be very careful in making sweeping statement from a single experience.
8
Grandparents are critical. Kids lucky enough to grow up near grandparents are so enriched. They are patient, have perspective, and often have more time than working parents.
13
Great story. Why the doctor bashing? Medicine is not perfect; there are so many variables that affect any health outcome. Physicians compile the information they have to arrive at the most likely diagnosis and outcome. This approach is not perfect, but it's pretty darn good.
17
Frank, doctors aren’t perfect. Some are downright awful, let’s not continue to keep the medical profession on a pedestal!
6
@Mari
I agree with Frank. He specifically is NOT putting physicians on a pedestal, admitting that the method is not perfect. Physicians are humans, not fortune tellers. They accumulate outcome data of prior similar cases and provide the patient with expectations based on history. Have you ever been diagnosed with anything and NOT wondered "what does this mean for me?" It is their knowledge of the disease process that provides you a reasonable way forward. Sure, the process can change, diseases can be newly managed, and not everyone fits in the same bucket. Agreed that physicians should not be viewed as infallible, but your statement subtly implies that you have disdain for the entirety of the profession. I'd argue that individuals sacrificing vast amounts of time in their formative and early years to help others deserve respect and the presumption of a desire to heal, not the opposite.
9
A great essay, and I appreciate Mr. Altmann's perspective, especially the sentence "And I affirm that my body is beautiful." My godfather was born in the mid-1920s with cerebral palsy. Despite all the limits that were put on him, he has enjoyed a long life. I plan to share this article with him.
14
What a story ! What an effort and strong will ! What a grandmother! WOW ! Very inspiring indeed. Thanks a million for this great story. May you achieve success in your chosen field. I can clearly see that you are a great writer.
20
This just broke me down on my break from work. I was born with Asymmetrical Syndactyly with missing digit and a genetic mutation causing ankylosing spondylitis amongst other chronic diseases. My grandmother had MS and taught me the same lessons in defiance of social standards and prejudices and to live how I choose. No one has ever had such a profound effect on my thinking, your grandmother was a good woman and raised you right.
34
Ta-Nehisi Coates' "Between the World and Me" helps, to the extent it is even possible, for a white person to gain some understanding and empathy for what life is like for blacks and all the other others. Altmann's essay helps too. Perhaps prejudices with respect to human relations will never be erased--so many of them give the false impression of being innate. But the works of Coates, Altmann, and others do open some doors--as shameful and difficult to understand as the revelations may be.
Thank you both.
73
I would think the medical profession is fraught with exceptions and rules, so I wouldn't blame this doctor's diagnosis in this example. We hear about those beating the odds because they are rare, not typical. I would urge a candid presentation of facts and history as we know it so that the patient has a valid perspective going forward. Absolutes in either direction aren't helpful, but then, given today's doctor's bedside manner, there's hardly time for an answered question.
11
Magnificent. Although he doesn't want to be inspiring, his essay definitely is.
7
Great story.
7
The human spirit often achieves far above the expectations of a doubting and credulous world. You certainly have gone beyond. Your grandmother was a remarkable woman.
"Man's reach must exceed his grasp,
Else what's a Heaven for."
7
This is a wonderful example of the understanding that a person is not a diagnosis.
I'm so happy for Mr. Altmann that he is ambulatory, but I think that whether he was ever able to walk or not, his having this grandmother in his life would have ensured that he made something of his life and worked beyond the obstacles in his way.
Every child, differently abled or not, is a bundle of potential and possibilities. It's up to us in positions to help them to see to it that we provide as many opportunities as we can to help these along, and equally importantly, to not stand in their way.
2
I agree with this word for word. There is more in everyone than his medical condition. There is a small boy here in Italy who at 1 month old was in vegetative coma, would never change said the doctors. Cures, his parents, his incredibile will: he now can walk short distances, drives an electric toy car like a master, will start school in September. Does not speak, but communicates a lot. Has a tube feeding to eat because his mouth and a part of the face is paralyzed, but he is: alive, strong, looks happy. He has his ways, his beauty, his life. Who is able, really?
13
"I can’t imagine what it must have been like for her then — at 67, when she should have been enjoying some leisure after all her societal toil — taking on the responsibility of raising a young child, let alone a physically impaired one, in an ableist society."
That society is ageist, as well as ableist, which may have been another daunting factor.
Both ageism and ableism have been enabled by healthcare providers, among others, who have treated medicine as a science, without remembering the basic principle illustrated best by quantum mechanics and baseball batting averages.
I.e., science can predict only the chances that any particle will behave in a given way, but not whether a specific one will*.
"Most" does not mean "all" or "none". (We can say all U.S. physicians have taken calculus and physics, but not whether any given doctor remembers any.)
What exhausts one senior reinvigorates another; you may have benefited your grandmother as much as she benefited you.
It's not unscientific to observe that non-supernatural miracles happen every day.
.
(*It's been about forty years since I read The Dancing Wu Li Masters, so it's probable that a commenter could confirm, deny or phrase it better.)
4
Shoutout to all the healers who help us when the MDs can’t, the grandmothers, parents, partners, RNs, physical therapists, nutritionists, chiropractors, herbalists, masseuses...
20
@DJ and Acupuncturists!
2
So glad you proved the doctors wrong!
3
@Nancy Robertson - The thing is, the doctors are also glad.
2
Bravo!
3
John, I will remind myself of you when I face obstacles I think I cannot overcome.
9
Hooray for your wonderful grandmother! I work in a medical field where I see everyday that someone believing in you can overcome what the book says should happen. We are so much more than the sum of our body parts.
20
A relative of mine -- my mother's cousin -- was afflicted with a form of rheumatoid arthritis as a young girl that left her body twisted and contorted into a pretzel. In the late 1930s, the only thing the medical field could do for her was to provide a series of surgeries in which her disease ridden joints were replaced by rods, and to fuse most of her spine. A few joints still worked to a limited degree -- her hips could still bend somewhat, one shoulder worked to the extent that she could raise and lower her arm to something less than shoulder level, and she could rotate her head by maybe 10 degrees to either side. But her legs were permanently straight, her ankles and wrists were frozen, and although she had some movement in the joints where her fingers connected to her hands, her fingers, too, were permanently straight in the second and third joints. With the aid of crutches, she could manage to walk short distances.
This relative lived a full life, eventually dying at the age of 78. She held a job for years as the local tax collector in the township in which she lived. She had married twice, the second time at the age of 75 (her husband was 99 at the time of their marriage) and outlived her. She even learned to drive, using a specially outfitted and repurposed Checker cab! She was appointed guardian of my youngest aunt after my grandmother died suddenly when my aunt was just 15. She put my aunt through nursing school. She was a force to be reckoned with!
26
I should add that where Mr. Altmann points to his grandmother, my relative had her own mother -- a tough, fiercely devoted farm wife whose grit had been shaped by having to raise four children on her own during the Great Depression after she had been widowed, and who had absolutely zero patience for any kind of self pity.
9
Thank you for your beautiful and heartfelt writing. I had a similar experience with my daughter. She has found her way, I never told her of her diagnosis as a child, I affirmed her capabilities and gifts while giving her all of the support and outside assistance she needed to find her way in the world.
10
I really needed to read this today. I'm sick of doctors telling me to "accept" my pain. Thank you.
14
Mr. Altmann, I get that you don't want to be a fetishized "inspiration" because of taking your physical trajectory into your own hands. But I hope it's ok to be inspired by the quality of your writing, which is stellar.
31
What an uplifting post and thank you particularly remembering all of that,
Be well !
A month and a half ago I had a stupid fall on a perfect dry day on a concrete step. Just one step where I walked through without looking.
Broke my humerus bone, no surgery needed then the surgeon said.
Now they’re scaring me , later might need a rotator surgery.
I am doing physical therapy diligently to avoid that.
7
@B Sharp
I broke my humerus two years ago for the same reason (not watching my step). Physical therapy took care of everything, even beyond the therapist’s hope — she once warned me that people never completely regain full suppleness (like reaching to your right shoulder with your left arm behind your back). This totally motivated me to push myself to do better at every session, eventually proving her wrong! Motivation is a powerful factor.
4
@Joëlle R
So wonderful to hear from you !
Gives me more courage to go further .
These days so many doctors suggests MRI , means more money.
I am planning to go for another month of P T, I am following her advice. It is my right hand . Now I am trying to shampoo with my right, which I barely can .
.
So thank you plenty.
3
Think of the practice of medicine as a business school optimization problem where the key variable are number of patients served, money generated per patient, profit for pharmaceutical companies and medical device companies, and number of lawsuits. Maximize the first three while minimizing the number of lawsuits and you begin to understand why medical professionals so often fail us and why, despite all the years of education and years of intelligence and endurance testing, physicians so often seem as ignorant about medical issues as a layperson. As someone who has gone through medical school, I can tell you that the problem is not with the theoretical “medical model”. It is with the way the medical model is practiced. And a great deal of the blame rests with the traditional “good guys”: the medical education system and the hospital systems in which residents are trained.
Triage doesn’t end in the emergency room. It is the basis of the entire medical system. Physicians are taught how to see dozens of patients with complex problems a day. In order to accomplish this, they are taught to disregard most of what the patient says as spurious and find the signal in the noise. They are largely taught pattern recognition rather than reasoning. Complex cases may require hours of research and thinking. A physician only has 15 minutes.
Medicine is so cultish that physicians will vigorously defend their broken diagnostic process even when it is obviously deficient.
12
The more useful triage would have been to have the child seen by a team which deals in CP and related movement problems. Orthopedic surgeon, pediatrician, geneticists, neurologist, PT, OT, Orthotist, social worker- all in one place, with special expertise and a passion for helping the kid and their families be the best they can. Judge modern medicine by the best it can be, just as we make sure every kid (and adult) is the best they can be.
4
Several years ago I read an amazing memoir about a man who rebuilt and flew antique airplanes. He had a stroke after heart surgery ans was told he would never fly again. Their family got no help or encouragement from the medical community. They decided to do his rehab on their own. After three months of backbreaking work (what they called "school") he was back in his plane, flying. The book is called "Into the Blue." An inspiring story.
6
The “medical model” is all based on averages and probability. It is not gospel.
When my husband was given a progressive and fatal lung diagnosis he was told he had 3 to 5 years to live and once he was on oxygen 24/7 he had a year or two left.
However, our nephew in Spain, a young pulmonologist, told him: “ Don’t pay any attention to the numbers.”
Indeed, he lived 6 years after the diagnosis and survived 2.25 years on oxygen.
Now perhaps it was our quiet life or the literary research he’d been devoted to for so many decades. Or maybe our move to the retirement community or simply the love we had in these years of knowing our time together was short.
But medicine cannot account for those variables. Those are the variables of the heart and the psyche. Love and the spirit.
We see those indefinable variables in this wonderful story of love and devotion and hope.
15
@TheraP
My father had a similar pulmonary diagnosis. After one serious episode his doctor called my mother aside and basically told her he was dying and did not have long to live and to ready herself. My father was about 50 years old. My mother replied "you're not God" and walked away. My father lived - although his condition was chronic - for another 10 years. He was happy and loved. Doctors can give you a realistic prognosis but yet not take away all hope.
5
A wonderful friend of ours fell of her horse 6 months ago. While not in a coma, she has been unresponsive. Two days ago the neurosurgeon felt he could put a drain in her brain and 12 hours later she was waving and thumbs up to a disbelieving family.
15
One of my best friends in college was a woman who had CP. She was born in the US to immigrant parents; her condition was likely a result of discrimination and malpractice; her family won a settlement with the hospital.
First, doctors told her parents she wouldn't live - she lived.
Then, they said she wouldn't walk -- she learned to walk when she was 4.
Then, they said she will likely have cognitive impairments - she finished college in 3 years, got a Master's degree, and works as a therapist to students with disabilities.
Do not underestimate people just because they look or move differently.
34
As a physician, I’m thankfully aware of the limitations of the medical model that affect both patients and doctors wellbeing. On a daily basis I have encountered middle aged patients with arthritic discomfort. Too many deprive themselves of more life by claiming “I’m just getting old”. Yoga and other approaches have taught me that while we can’t slow aging, we can certainly determine how we age. Doctors are stuck in a disease model and often don’t understand the basic concept of wellness. This story is a beautiful example of perseverance and will. This kid was lucky to have such a loving, caring grandma.
24
What a terrific share on the power of determination, both from your grandmother and from you.
Thank you for writing this essay- I am sure I will remember it for a very long time.
7
" in an ableist society.". as a disabled individual, i find the term "ableist" to be condescending. it should not be used.
4
@Richard Gaylord Explain? You find "ableist" - describing our society's discrimination against the disabled - offensive, but still describe yourself as 'disabled'?
My particular condition, Charcot-Marie-Tooth disease, means that there are some things that people without CMT can do that I can't or that I find more difficult - and I do consider myself to be less able as far as walking is concerned, so 'disabled' seems accurate to me, and I'm not offended by it. But to use 'disabled' and find 'ableist' offensive? Explain?
4
It is our brain that moves mountains. Our muscles only move our limbs.
11
The doc blew it. The disability that kept you from walking was not physical, it was neglect. That should be recognized by medical professionals.
8
Wow. just Wow.
4
Kudos to your doctor for not getting your hopes up about something that was far outside the reasonable odds. If he said you should be able to walk and your grandmother hadn't been spurred into going way beyond a normal physical therapy regimen, you might still be immobile, and devastated for failing to live up to something you "should" have been able to achieve. Kudos as well to all the many doctors and nurses who helped you from the time you were born with a debilitating condition until today. I'm sure there have been a lot of them, all working together to keep you as healthy as you can be.
11
Seriously? And what kind of doctor are you?
Presuming you are a doctor or close to one, I can understand the instinct to push back against the critics. You have seen the terrible toll that medical education and training takes and the incessant determination and sacrifice on the part of those who navigate it. As someone in training myself, it has been incredibly hard to work tirelessly every day and then in the back of your mind recognize how obviously deficient the system is. The reality is that medicine completely ignores the value of physical therapy because it is not something that can be easily understood within the narrow boxes medicine likes to put all conditions into. What syndrome do you have? What disease? Oh, cerebral palsy. Yea, you are 7 years old, so you aren’t going to walk.
Never mind the reality that it is a complex pathophysiological process that is lumped together with other forms of brain injury into the general descriptor (cerebral palsy) even though two cases might be entirely different. You know this physician didn’t explain any nuance to the family. I’ve seen the countless narcissists in medicine who would just say “yea you’ll never walk again” and move on. Just recently I saw a neurologist tell a patient they had multiple sclerosis in the same way one might recommend the latest fad diet.
It is only when we admit the failure of our process that we will heal as a profession. We need to grow up. Working hard doesn’t mean we are working smart.
3
@Expected Value Tell me which field of medicine "completely ignores the value of physical therapy"? I am a surgeon and rely heavily on my physical/occupational/speech/swallow therapy colleagues to treat our patients and to further educate me with their expertise. I am sorry to that you so greatly underestimate the caring and thoughtfulness of the field that you have chosen to join. I hope that you find better mentors or you discover the physicians who do truly care for their patients without pride or ego.
10
@Expected Value I'm not a doctor, just someone who appreciates the work they do.
1
I suffer of a chronic degenerative disease (MS) since I was 15 (32 now) and I remember when I was barely able to walk. When I was 21 I met a doctor who said to me that in a couple of years I may not walk at all and encourage me to change my life habits if I wanted to improve because not even with the best drugs and rehabilitation I was able to.
After changing my feeding habits, eliminating toxins, taking care of myself and doing exercise, my EDSS improved from 5.5 to 1.5. Even my brain injuries shrunk
Now I can walk for miles, run races and ride my bike.
Sometimes the change is in us.
36
Dear Mr. Altmann,
Thank you.
I can't stop the tears from running down my cheeks.
A spoiled little kid, I grew up expecting life to give me everything I wanted and getting angry whenever it did not.
I wonder how my life might have been different if, when I was 7, I had gone to live with your grandmother. What a woman she obviously was! Perhaps my keen intellect wouldn't have been trampled by my father whom I could never please or my ability to truly love others hindered by my mother who loved only herself. And perhaps my anger towards them is just another part of my own failings.
And you have triumphed! Never having run around with abandon, never having played baseball, basketball, or any "sport"as well as all the other things people with normal movement skills can do.
Late in life I have matured a little from the brat I once was. But I still have a long way to go to be the man I am capable of becoming and that you so obviously are.
Reading about your success gives me a little more humility and patience while I still strive for my own.
God bless you Sir!
16
@Richard Phelps
A child who develops without love and support is surely as challenged as one who lives with a chronic disease.
1
What a wonderful story. So many rich elements. I have learned over the years to accept medical science's advice when it's very well established but to be skeptical of everything else. A few hundred years from now, people will look back on these times as the dark ages in medicine, with its focus on treating symptoms, its lack of patient specific disease models, and its lack of focus on treating holistically, including, especially, nutrition. The story also advocates for simply accepting and celebrating people as they are, or as they might become, which is a wonderful and badly needed message.
2
My father's (he has passed away) has CP; she does not have the use of one arm and walks with something of a limp. I know she endured daily grueling PT. I have truly never thought of her as disabled, even though she's disabled bodily right in front of my eyes. I simply see her, I know my father also saw her as the woman he loved, end of story. Not a disabled woman. In fact, I have to willfully think of the fact that it takes her longer to do zillions of everyday tasks with one hand; because she does them better than most. She is not a perfect person; she's a person.
3
Your eloquently written piece is instructive and heartening.
I deeply admire what you have been able to accomplish by force of your determination, under the auspices of your wonderfully fierce grandmother. Most of all, I embrace your statement: "I can be lulled to sleep in the knowledge that my relationship with my body is not imposed on me by others,...[i]t is in my sovereignty, a relationship I get to define and affirm." This applies to everyone in the world, each of us dealing with defects of one kind or another, or faced with prejudice about skin color, size, shape, etc. You have expressed an essential and profound truth and conveyed your hard-won sense of triumph. I pay homage to you.
17
Most physicians are not well educated about how to assess function or to help people improve their function beyond medical treatments. I know this because when I specialized in geriatric medicine, I learned more about how to help people function by teaching them to change the way the do things (e.g. sit instead of stand when cooking), providing assistive devices, and examining what modifications can be made in their homes, workplaces, schools, etc. In particular, occupational therapists and physical therapist colleagues taught me a lot. Medicine is complicated and so it should not be expected that MDs will know everything or have the time to help but my impression has been that these therapists are underutilized. Doctors need to be reminded they can help and refer patients to them.
6
Your grandmother has the right idea; let no one tell you that you can't do for yourself. Even if you don't ultimately succeed, life is all about moving on, trying and doing for oneself. You did it. That is a fact.
4
A lucid and thoughtful piece from someone who lived the challenge.
I always struggled with doctors stating authoritatively "We" ahead of their pronouncements. Who exactly is "we" ? Do doctors fall out of the normal human curve on intelligence, originality of thinking, hard work? Of course they do not. They are as imperfect as everyone else. But rather than owning their imperfection and saying "I", they choose to play along with the old myth of doctor's infallibility and all knowing presence and say "We". Do they teach to behave like that in medical schools?
Brain is a wondrous, living organ. When injured, it has capacity to heal, compensate, and change as other organs do. The outcome is dependent on the nature of injury, patient's resolve, wisdom and experience of the therapist. Our knowledge in this area has expanded by leaps and bounds. If you travel to third world countries and see how brain injuries are treated you would be horrified, it's basically a prison sentence.
But the latest developments in neuroscience, technology, and particularly association between neural memory and physical movement are yielding fantastic outcomes. Alas, much of the art of what's possible remains out of reach of many because of insurance coverage, doctor's ignorance, or accident of one's location on earth.
Articles like these help push that boundary. Thank you John Altmann.
4
Well done, John. Not just your breaking preconceived notions about your mobility, which is of course amazing, but your terrific writing.
13
When we deduce the likelihood of possible outcomes from well defined mathematical descriptions, the predictions are not based upon empirical data, things that have happened before. When we predict the likelihood of things from facts established from empirical evidence, we are relying upon what has happened to do so. The difference should be evident that the later would change with new empirical evidence. Medicine is mostly based upon empirical evidence. Nature produces life forms by the process of natural selection which follows no designs and specifications which allows deducing what must be. What medical doctors predict is likelihood not certainty.
7
A good friend of mine was severely injured a few years back and told the same thing. A surgeon even put off the initial operation by 24 hours saying it would not make a difference. Not being willing to accept this, he and his wife demanded to have him moved to a hospital where the surgeon would jump right in. As a result, he's walking today and able to live an active life with his young son. These days, he regularly sends images of himself walking to those who helped him AND those who played golf instead of coming in to do the work. He's a testament to the power of human will.
Thank you for sharing your story.
17
I worked as a psychologist and a rehabilitation counselor with disabled individuals for 32 years.
This is an inspiring piece on how we can stretch ourselves to do more with our bodies and our lives.
Would that we all had a grandmother like this to inspire us in our dreams.
14
It would be very unusual for a doctor to tell a patient that she will not walk again. It is common for doctors to say "may not" and the patients hear "will not,
11
@Mike Murray MD
Thank you. Physicians are obligated to discuss worse possible outcomes, and patients frequently take that as "having their parades rained on."
4
Doctor here, mathy guy, majored in physics in college.
Prognosis is inexact and based on statistics and probability. Your doctor said you wouldn't walk. What he likely thought is that, given your situation and given the clinical course in other patients with similar disorders, the probability of you walking was low. And it was.
Most folks don't understand probability and uncertainty, so your doc likely simplified things.
When I used to talk to my patients about chances and odds, I got blank looks. I don't generally do it much anymore unless the patient has a background in a quantitative field. Even college graduates in non-quantitative fields don't understand these things. Heck, even some people who have taken statistics don't get it.
14
@vbering Words have meaning, and there is a huge difference between "may not" and "will not," regardless of probabilities. And people understand that difference.
Doctors need to be careful what they say.
23
@vbering One does not need to be a "mathy guy" to understand "the probability is low" versus "it ain't gonna happen". Nor does one need a background in a quantitative field to understand that some things are by nature inexact.
Doctors owe their patients clarity. I am appalled by the idea that a physician would simplify to the point of inaccuracy based on an assumption around what "most folks" are capable of understanding.
15
@vbering
I respect and believe your personal experience in your field, but your assumption that that a doctor simplifies a prognosis because patients wouldn't understand the ramifications of probability is, IMHO only rarely true.
In my 82 years, it has been the doctors who do not understand just how fungible their science/art is.
Unfortunately, early on, situations I have been part of have involved the deaths of both a father (at age 28) and a son (at age 1) rather than the triumphant success achieved by Mr. Altman. After those, and several other "near misses" I began to carefully consider doctors' advice (which I always approach as informed, but no more) and often either modify or, occasionally, reject it.
It is not my intention to denigrate the work of medical professionals, whom I generally admire, but rather to give you a viewpoint from the other side.
Suffice to say, yesterday an MD, after an extensive examination, said I was "very healthy." With that, we were able to have a conversation about a treatment for me, with the MD changing it in the end to one decidedly less severe than the original one proposed.
It is a pleasure to work with people like that.
2
You've clearly overcome a lot; I am a physician that works with kids who have been diagnosed with CP. When parents ask me for prognoses or predictions regarding future motor functioning, I always tell them humans (even of the doctor variety!) aren't smart enough to know what the brain is capable of. My line of work does provide a different perspective: while others may see you as disabled or feel sorry for you, I think you are one of the lucky ones, in that whatever prenatal insult occurred, it clearly affected only motor areas and spared your wonderful intellect! Many of my patients can't say the same.
23
Yes, it’s a real problem when other people hear about my (non-visible) disability and then decide (for me!) what I will be able to do. People have told me that I will never be successful in my field, simply because they don’t see how they themselves could be successful with my disability. Well guess what — I’m a totally different person with reserves and determination that they’ve never dreamed of and I know better than anyone what I’m capable of.
13
You may not want to be an inspiration but you are. I am a 79 year old woman who has had a lifetime of experiences;the way you wrote about your experience of life expands even more my sense of the extraordinary possibilities of human relationships. Thank you,.
25
Many cheers to your Grandmother! Thank you for your courage and sharing your perspective.
23
@D. Olson
yes, many cheers to the grandmother.
And many boos to the American health care system, where insurances won't cover chronic PT for people like the author (or any chronic disease such as parkinson's disease). Regardless of what the doctor said or how wrong he was, it takes families to pick up the slack for patients who get 10 or 20 (or maybe 60 if they are lucky) PT visits a year.
3
I commend the skill, art, and humanity you exerted to allow us all to explore and reflect on disability and the relationship to subjective aspects you adroitly address.
Professor Thomas Kuhn, most notably, defined paradigms as exemplar problem-solutions that are used to socialize members of a discipline into the basic theories and presuppositions of that discipline. Put simply, paradigms are the model examples relied on by a discipline to teach how the world works.
However, Kuhn was addressing paradigm for the scientific community and I find it, as your grandmother did, incomplete and not the only paradigm for the subject matter.
The subject matter, your medical condition, is related to several paradigms and I believe all the stakeholders are enhanced through exploration and understanding of them.
An example, I recently had myasthenia gravis (MG) present at age 66. It inhibits my voluntary muscles movement; it does so by confusing/preventing my nerve signals to release a chemical that allows my muscles to contract.
MG is known as the great weakness but in my case there are drugs that battle the antibodies and allow the chemical release.
However, in the course of other medical services, a PT in frustration asked "Do you know what MG is?" and a hip replacement surgeon, in response to my conveyance on how MG affects ambulation, stated, "I know what MG is!"
I now know what ableism is, well done Altman. You have identified a chronic public health problem
4
Tears in my eyes. Simply beautiful. Thank you for your words.
7
Thank you for this story that inspires us all to live a life of determination and knowing that one can rise above it all.
16
What an inspiration! What we don't know about medicine, science etc is far more than what we know.
13
The beauty of this victory has me humbled and moved. Whatever it is that organizes this cosmos and our lives surely must be embracing your extraordinary grandmother. . .just as it has embraced you through her. Thank you for this powerful essay.
34
I just want to add that there is nothing wrong with using a wheelchair. I resisted one because I had this idea growing up that I would just prove everyone wrong and also because I had never seen a good wheelchair. I was also very angry about the surgeries that had been done to try to "normalize" me and avoid wheelchair use and I felt like if I used a chair the pain really would have been for nothing
Well it was for nothing but instead of fighting against anything I just do what works for me. My bones are severely deteriorating in my late 20s due to years of falls and unassisted walking. If I had used a *good* wheelchair part time as a kid, walking now would likely be easier. An ultralightweight rigid manual wheelchair allows me to go further and faster than I can on foot. I still walk most of the time but I use a cane when away from home.
26
@JJ Thanks for letting people know that wheelchairs are fine. You might try what I have shifted to (at age 79), which is a pair of trekking poles and a lightweight backpack. The poles take practice and perhaps some assistance, but you will find them to be better than a cane for irregular terrain. Physical therapy and working out in a gym with a trainer will gradually make a big difference in strength, balance, and self confidence. If your condition is degenerative, as is mine, you are young enough to likely benefit from light-weight exoskeletal assists. For now, look to the Endependence programs in Berkeley, northern Virginia (encv.org) and other socially supportive locales to learn about amazing wheel chairs and other assistive technology.
Your grandmother, my mother. We are all capable of far more than most people will ever expect of us. Thanks for reminding us.
6
To the grandmother who stepped in and turned things around, (and indeed to all the grandmothers who intervened at great personal cost) the utmost honor is due. That she was willing and determined to risk crushing disappointment in hopes of achieving great joy is evidence enough of her character and love. Wise, wonderful grandmother.
168
@Phil Brewer. Everyone needs someone like her in their lives.
9
As 65yo who is struggling with osteoarthritis, your story has inspired me to never let it get me to stop walking, no matter how hard those knees creak! You (and your grandmother) are amazing!!
58
Your story inspires me to "Keep on Truckin'" at my advanced age.
27
Remember when Forrest Gump’s braces became undone and Jenny called “Run, Forrest, Run!” What an exhilarating feeling to have the ability to move without any assistive device.
We should all have such a loving grandmother to give us power as Mr. Altman’s. What a blessing.
21
Thank you for this. I don't know what it is to have your disability, but I have a child who has a milder form of CP. I have always wished that the world could see her as I do. Whole, beautiful, human.
106
@Katherine Hahn You would be surprised to know how many people do, and will!
3
Pediatricians especially need to learn about the family dynamics of their patients. Had this patient not had a grandmother who was so involved, caring and so invested in her grandsons future, the doctor may have been proved right. But the power of belief is something that has not as yet been biochemically understood. It’s potentials are vast. Best if doctors offer cautious optimism rather than blind pessimism. Especially towards young children.
47
@Meena
We don’t actually know the doctor’s exact words, nor are we told whether he was ever aware of this patient’s progress. I have little doubt he would have been delighted to be “wrong”. Doctors give their best educated guess and are usually delighted to see a better outcome.
15
I'm amazed that the author could remember in such detail something told to him when he was 7. Perhaps it might be a story his grandmother told him to encourage him and highlight her importance in supporting him.
Repeated studies have shown that many times even adult patients have said doctors told them things which were contradicted by what the doctors said in their notes that they actually told them.
8
@Steve He remembers it because of his grandmother's reaction.
21
@Steve- In spite of some of those studies, some of us have accurate recollections from early childhood which can be substantiated. My mother verified that I could recall an accurate representation of an apartment I left when I was two and a half. It is not beyond reason that the writer remembers the doctor's statements accurately just because some other people can not.
55
@Steve
I have a birth defect and had 7 surgeries plus countless medical visits as a child. You can bet I rememeber many awful things from those times, some of them no one was around to witness besides me and the medical professional of the day. I rememeber because the trauma forced my brain to relive those memories over and over. I also have stories from others that fill in some gaps I don't rememeber. Overall, most doctors are pretty negative about disability. They also often write inaccurate notes (I've had to go through both mine and my partner's medical records to fix inaccuracies). So my guess is most of the time if there is a discrepency the doctor simply wrote the wrong thing down. For example, a terribly botched surgery left me with permenate physical harm. It was extremely painful. Most people never know the kind of pain I was put through. Yes the official notes say I was in no pain after having two of my bones sawed apart incorrectly. Hmmm. Considering I rememeber the awful pain and in a bed sobbing and begging my mom to make it stop I know it was the doctor's notes that were wrong.
31
The power of determination, persistence, and self-efficacy should never be underrated. Mr. Altmann reinforces this. So many people without disabilities are disconnected from their innate power because of social or non-biologic constructions, like the baby elephant at the circus tethered by a bicycle chain that grows up to accept the boundary of circumstance, a bicycle chain that would snap easily. I had a friend in college with cerebral-palsy, and he was energetic, unapologetic, and tolerant of misplaced sympathy. He changed my immature thinking about disability.
33
@Charlie
And love, the power of love. The grandmother's influence was immeasurably important in this story. If the author hadn't landed in her care, would he have surmounted the challenge as he did? We don't know, of course, but there's no doubting the importance of her support and belief in him.
4
I was treated as an adult outpatient at several local hospitals until I learned to walk with Locomotor gait training at Magee Rehab 6 years after Grade 5 SaH left me wheelchair bound. Specialized rehab hospitals have a great deal to offer. CHOP and other children's hospitals for pediatric intervention. the key for me was finding a neurologically centered rehab hospital with clinicians who have treated similar conditions for decades.
23
@Maureen
Thank you. The writer never says whether or not a second opinion was obtained. So glad you persisted in a way that didn’t require an amazing grandmother, as not everyone has one.
6
@Pundette thank you for your lovely comment. best of luck to you as well.
1
Such an important piece. Physicians in our system deal with likelihoods based on models derived from what patients report and what the physician observes. Our society has more or less followed the aphorism "You don't build models on outliers." Mr. Altmann is, at this point, an outlier. The question, it seems to me, is "Why is he an outlier?" Is it because he truly is or because we have built a construct that makes him one? Given how much we obviously don't know about human biology, it would be a sin to continue to build and follow constructs that involve the destruction of hope and the marginalization of human beings.
45
Good for him! But sometimes things don't work out no matter how hard you try. Or then it may be one needs to try in another direction.
13
Finally, the sociopolitical, socially constructed nature/aspect of disability hits the mainstream. Thank NYT for publishing these articles. Look forward to more, and more under "Top Stories" as well.
31
Thank you- As Chair of a department of pediatrics, I have shared this with my faculty.
122
Great to hear. Too often, medical (and other) professionals
aren't aware of the many ways in which our human attitudes, methodologies, and built environment are the primary factors in turning a human *difference* into an actual disability. And too often they aren't aware of the many, often simple, changes or shifts that would make certain differences less disabling. Furthermore, and perhaps most important, we need to challenge the myth and cult of human independence and, instead, see that we all are interdependent, and stop fearing dependence on one another to the point that disability and, by extension, people with disabilities, become fearsome to us. This fear allows or compels is to deny our societal role in creating disabling social, architectural, methodological conditions -- which in turn leave us afraid of disability and imagining that life with a disability is necessarily, naturally an awful and diminished life, and that it is individual bodies that are determinate of disability, and not also the in-reality, with creativity, malleable environment, around and within us.
16
Thank you for sharing your story with us, Mr Altmann. It is a fitting epitaph both to your wonderful grandmother, and to your own courage and determination.
69