I was on a radio show a few months ago, and the subject was “women’s health.” The lovely young interviewer asked me what my health regime is — how I define health. I told her I felt lucky, felt grateful for what I called my health.
I have thought a lot since that moment, because in that moment I censored myself in a way — something I seek never to do to my readers or my listeners. And I asked myself why I had done so.
The complete answer would have to be: “Well, I was born with mild spina bifida — the condition in which your vertebra do not completely fuse, thus exposing the spinal cord. I managed well after a spinal laminectomy a few years ago — my symptoms — of numbness, chiefly — had resolved after this surgery. But then in 2013, I tripped over two panels that were loose in a midtown New York drugstore. My surgeon, when he was telling me what my life would have to be like post surgery, said: ‘you can do most things — just don’t fall.’” But in 2013, I fell.
It was a terrifying experience. My young teenage son was with me and he tried to find out how to help me, as I lay on the floor, having had the full impact of the fall against the site of my surgery and my fragile spine. It is excruciating to see security camera video of that moment — as my frightened son tries to help me, I try to conceal my agony and fear, and, a few minutes later, as the drugstore’s staff quickly and with no look of surprise, pick up the two loose baseboard panels and sweep them efficiently out of sight.
Today, the truth is, I am legally partially disabled. I was aware that, though I write openly about just about every aspect of my life, I have been reluctant to put that fact out there. I do feel a social stigma admitting to having a disability — complicatedly, one that is not visible. And I feel shame at stating that pain is part of my life. The American ideal, of course — being successful, admired, sexy, accomplished — does not include being partially disabled or having chronic pain in one’s life. Though this is a condition that millions share with me, we don’t talk about it without fearing being marginalized, derided as not a winner in the Darwinian race; I found that my own partial disability was something I had an instinct to self-censor.
And being partially disabled, and many days in chronic pain, has changed my life, of course, and also my definition of what health is. It has made me question our society’s ideal of perfect health being the only state that is acceptable. As like many people who live with chronic pain, pain has become my teacher. Anyone who lives well with pain, in my experience, at some point speaks about the lessons pain gives. The same is true for me.
For one thing, having pain and partial disability, means having a second or third job. From spinal injections to doctors’ visits to so many MRIs; from keeping records and submitting insurance claims; from explaining to the neurologist what the surgeon said and to the surgeon the neurologist’s latest finding; the act of addressing pain and disability, let alone neurological injury, takes hours, days, even more. It is easier in other systems; when I was in Britain, I just walked into my designated clinic, sat down and spoke about my condition to my local GP. But in America, it is a second job to manage the management of what cannot be managed.
For another, my kind of injury changes how I see the body. I have been writing since I was 23 about the “beauty myth”, and how it kept us from living fully and happily in our physical selves. Well, add a spinal injury to that point of view. Today, I have (and I am not proud of this) almost no patience with what I used to call sensitively, patiently, “the beauty myth.” It used to be sad for me to hear able-bodied young women, or women of any age, describe how they loathed their bodies — how they felt fat, unattractive old. Today, when I have a miserable-to-consider list of things I can never do again physically — not run; not dance without pain; not ski, not ice skate, not roller skate, not jump, not do karate, not fly in small planes, not go down stairs easily; not go up the stairs easily; not do impact cardio; not jump on a bouncy castle, not parachute, not go on rides at Disneyland, nor run, not run, not run….I feel, I am sorry to confess it, a profound lack of identification with those struggles that used to draw so deeply on my empathy. While I know there are all sorts of cultural pressures on women about their bodies, being partially disabled makes you have zero patience with giving in to those pressures. Models? So what. You can run and jump. The willingness to accept any nitpicking at all about this incredible cosmically amazing gift that a healthy body is — an intact spine — legs that run, nerves that function — seems — at worst, shortsighted to me; or at least a sad capitulation; or deeply misguided. I wish every woman who is burdened by beauty ideals, could experience life with a spinal injury for even a small part of one single day. They would go back to their healthy bodies filled with gratitude and delight. You feel you are aging, your waist is not small enough? Thank God, thank God, for your healthy body; at least you can dance, jump, run.
It turns out that absolutely everything worth doing on the planet physically, involves impact. Now I can’t do any of it. It is like walking around inside my own glass fishbowl, scared of being jarred; of spilling the precious and limited water that I have, that any more impact — even one more jarring, one more such fall — would scatter irrevocably.
Then there is the strangeness and grief of a neurological injury. The time I was in my doctor’s office and he diagnosed me with a condition, arachnoiditis, that involves loss of every function, and then early death (seems I don’t have it — but that was one dark sushi dinner with my best friend, that night after the diagnosis). Being told by my surgeon that my nerves are ‘clumping’ — and so dedicating myself to an anti-inflammatory diet, to swimming, to yoga, to no sugar, to all of the graspings of straw that might keep worse neurological symptoms at bay; to the indescribable experience of finding numb spots appear on one’s body — here; and here. You learn that feeling — simply having nerves that conduct sensation properly from one’s skin to the brain — letting you touch; connect; keeping you from the terror of thinking — if I can’t feel the top of my foot, or under my instep; how long will it be till I lose the ability to feel the earth? To feel a hug? The strangeness of a neurological injury — buzzing under one’s skin as one tries to fall asleep; or the twitching of neural impulses — let alone that dull, or angry, or unbearable, or dull, or angry — pain at the site of where four hinges made of titanium hold my nearly dislodged spine together — the four slender titanium hinges that were all that held me together, like a silver thread threading beads of me, identity, consciousness; beads and threads that banged down with my full weight against the floor and jarred me into debility and into unthinkable symptoms, one April afternoon of 2013.
So why did I say to a Women’s Health interviewer that I felt “healthy”? Because having a disability and having pain have changed my definition of health.
I have two choices; I can give in to thinking about, narrating, and creating an identity around my injury — creating a self around all the things that hurt and all the things I will never ever ever ever do again. If I did that, though, I would be so depressed and lost, I know I couldn’t function. I have two children and am a single mother. I simply don’t have that choice.
Or I can change how I think about my disability and my spinal pain. I do compartmentalize; it is true. I can’t walk around naming myself as disabled first, as politically incorrect as that might sound, because I would feel overwhelmed and would cease to function as I need to. There is some denial, in order for me to be more than my injury, my fears. I do feel that a healthy day is a day in which I meditate; I swim; I drink smoothies made with anti-inflammatory turmeric, cayenne pepper, blackberries, MSM powder for joint health, barleygrass, wheatgrass, brown rice, chlorella, and kelp. And try to think about other things when I am overwhelmed with grief at all that I can never again do. A healthy day is a day in which I am grateful for what I have — that I am not in a wheelchair; that it isn’t the worst case, or at least not yet; in which I am grateful to have modern medical treatment; in which I am grateful to taste, see, feel; and in which I am grateful for a partner who understands when there are things I can’t do; trips I can’t take; positions I need to change on a long flight — a partner who is also partially disabled, a combat veteran, which empathy and acceptance does help.
Maybe we need to change our societal definition of health. Maybe health isn’t being perfect. Many millions of us have hidden disabilities or hidden pain; migraines or diabetes; heart conditions or hemophilia or epilepsy or mood disorders or other things you can’t tell by looking at someone.
Since I have had this injury, I have heard many, many stories about such hidden disabilities. Maybe being “healthy’ isn’t being without suffering. Maybe we should redefine a “healthy” person as one who refuses to be defined by ill health or limitation; — whether or not she is in a wheelchair, or blind, or a paraplegic, or an amputee — or less dramatically, has a neurological injury, or blinding migraines, or lupus or rheumatoid arthritis or some other pain that doesn’t obtrude on her looking perfectly well; maybe she is “healthy” if she chooses to love her body, though it withholds from her the full range of human possibility; maybe she is “healthy” if she chooses to engage with her life on whatever level her condition allows her, while still refusing to let her condition wholly define her.
One of the most lasting lessons is, I fear, the lesson of pain.
Chronic pain is, as writers have pointed out before me, truly another country. When you live with chronic pain, you learn its tenor, its dimensions; pain has a life of its own; it is not just ‘better’ or ‘worse’; because it really never feels like part of you, or if you accept that it is part of you forever, you know something in you related to hope, will die. Chronic pain is almost like a savage animal you are forced to live with all the time; it has an almost feral quality; some days ravenous, others quieter. It changes your personality, because it depletes your reserves; it wears down your ability to be peaceful, to be humorous, to be patient.
Standing in line waiting to be seated on an airplane can turn into absolute purgatory, especially with an invisible disability and with chronic pain, because the passengers who are taking their agonizingly slow time getting settled, don’t see the anguish they are causing you with their delay. No one who has not experienced it, can imagine that standing still while holding a rollaway, could be excruciating; but then you turn into one of those angry, unreasonable people. With a silent disability and chronic pain, you face people in cars or trucks waiting for you to cross — slowly — at a crosswalk. They don’t understand why you are, from their point of view, dawdling; once when one guy actually revved his engine when I could not move fast enough, leaned out and yelled at me for taking so much time, I walked right up to his furious face and yelled back — “I am wearing a back brace! I am moving as fast as I can!” He retreated, stricken, and I felt both justified — and horrible.
It has been such a lesson for me — there is a Buddhist proverb, treat every person you meet as if they are fighting a mighty battle; and certainly chronic pain which is invisible, is that mighty battle no one sees. It is a victory IF no one sees it but that doesn’t mean it isn’t always there — waiting to humiliate me, to teach me and everyone around me my limitations; to force me to lie down flat in my office when I am consulting students…shocking them; to force me to lean against pillars or walls at events; to force me to cut short conference calls because I have to stand, or cut short standing conversations because I have to walk, or cut short work on chapters because I have to lie down. Days with more pain make me feel a thousand years old; they force an equation in which the things that cause able-bodied people delight — like walking, dancing, moving fast — ramp up the agony for me. Yet if you give in to pain — and lie still, at an incline, which is the only thing, along with gentle walking sometimes, that doesn’t actually burn and stab — then you get worse; the paradox is that your only hope of managing your pain is to actually do what your physical therapists tell you — to try to swim, try to walk, try to use the elliptical machine. . Your body then becomes your adversary, something to overcome; pain — not curiosity, not adventure — is its language to you.
My partner has pain now because in the past, he served his country in war. My pain has no such noble origin. It was caused by stupid or callous human decisions. So my lost wellbeing and mobility have no receptive meaning — no worthy story I can tell myself; mine is nihilistic pain. Its communication to me is meaningless — there is nothing redemptive about it, especially if the pain was caused by stupidity and carelessness; it’s like having been hit by a drunk driver. There is no higher meaning in it past the lesson of basic endurance, except that terrible things can happen that are a complete pointless waste of human life and a completely unnecessary erosion of human energies; and that is one of the saddest lessons my pain has had to teach me.
But the fact is, I am far from alone. Millions of us quietly are fighting such battles, though you wouldn’t see those facts from our Facebook pages or our casual contacts with friends and colleagues. That could be the meaning in its meaninglessness.
Pain has taught me that I am a member of a brotherhood and sisterhood that encompasses millions — maybe most of us at some times. The millions of us who are not perfect; who are dealing with loss or struggles; I am honored to be in that humble and courageous company now, though it was not by any means my choice.
Still; if I am truly honest, the truth is I miss what I can never do again.
Is there a politics that comes out of the experience of disability, or partial disability? Many people are radicalized by dealing with physical impairment.
My health issue has led me to empathize more than I used to do, with those whose physical disabilities or needs place them in a category in which they are specially, or usually worse, treated.
So I was struck by this bill introduced by the Oklahoma legislature — that would allow public schools in that state to use physical restraint and even isolation in dealing with children with mental or physical disabilities.
No doubt the perceived need for a bill such as this one came from some real-life situation or real emergency; but the fact that this bill allows administrators not just to permit restraint of students with disabilities — but also actual solitary placement, actual isolation — seems extremely sad to me; even Victorian.
Once again people with disabilities — this time, mere children — are being treated as a special case in ways that I feel are bound to stigmatize and isolate them further.
What do you think? Are you a parent of a child with special needs of some kind, physical or cognitive? Do you support this bill that would allow teachers to restrain such children and isolate them in school settings? Or do you disagree with this approach? Do you have a disability yourself? If so does that influence how you see this bill? Should other states have policies to restrain and isolate kids with disabilities?
Have your say.