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Kid Stuff

March 25, 2011

Shortly after Ben watched in horror as I tumbled backwards down the stairs from the second floor into the foyer, he sought answers. Ben was maybe six, but he had seen enough. What is wrong with Dad, he asked his Mom, lights safely out, blankets tucked tight around his little body. That was the venue of choice for hard conversations. Truth was spoken that dark night, and there was no turning back. He had learned the term, multiple sclerosis.

A decision to open the curtains and bathe our three children in the bright light of open dialogue had been made. Kids do not miss a trick. They know when something is wrong. They are the smartest ones in the house. I grew up in the generation that was told nothing. And so we coexisted with our worst fears, no doubt exaggerated by excruciating silence. If you want happy, secure kids, try truth. Let the kids in on the facts, tough as reality might be for them to process.

When cancer came calling a few years later, we sat our three down, and I told them what was happening. “Are you going to die?” Gabe, or middle guy immediately wanted to know. I don’t think so, Gabe, I answered, certain of nothing. “Then will we get our Christmas and Chanukah presents,” he followed up. I figured we were doing something right as he cut to the important stuff.

Years passed, and my health issues were integrated smoothly enough into the family culture. Or was that wishful thinking? The kids kept their eyes on me, ever mindful of my limitations and the dangers on the path of a sight impaired guy on a cane. Lily, our youngest inherited Dad when her brothers went off to college. Sometimes she is alone with me when I fall. She offers to help but does not have the strength to do much. She looks at me. I cannot read her eyes.

I want to believe that our easy openness has paid off. Probably I never will know. Our children fear for me and must bear the terrible weight of wondering what lies ahead of them in their lives. I am the third generation in a direct line to fight multiple sclerosis. Will there be a fourth? There is no way to know. One of them has had two MRIs, medically unnecessary, psychologically vital.

They are hyper-demanding to know every fact of my life relating to health. When I embarked on an experimental regimen of chemotherapy for the MS, an increasingly common course of therapy, I made sure I told the children. When one came home from college and saw my white hair and hair loss, he was furious. “You never tell us anything,” he complained bitterly. A harsh reality had overpowered the memory of my nonchalant news.

I feel so bad for them. The calm and casual attitude provides no antidote to the pain inflicted by coming face to face with a condition no one should have to see. Nowhere was that more evident than in a Boston hotel where all of us gathered for a family wedding. The building was so large, the corridors so long and my walking so weak that I wound up in a wheelchair just to get around.

My self-conscious discomfort was surpassed only by my children’s horror as they witnessed their father’s descent to a sitting position. The look of vulnerability was lost on no one. There were tears on that occasion, though kept beyond my line of sight.

Our children are better people for seeing close up that life is not fair and knowing that there is suffering in the world around them. Meredith keeps reminding me that I am a positive role model, a guy who has remained productive and, for the most part, happy to be alive.

My mother said once that if she had known that any of her kids would inherit a neurodegenerative or any other awful disease, she would not have had kids. I responded that not existing really is not a happy alternative and, besides, I have a good life. I think my children understand that. We laugh and love each other, and in the end, we seem to believe that everything will be all right.

But I know I kid myself. My children’s pain knows no end.


March 19, 2011

Gabe, we’re home, I yelled up to our middle kid, on a break from college, as we walked in the door. I repeated the call. Silence. “Gabe, we’re back,” Meredith announced loudly. “Hey mom, he replied. Is Dad with you?” That was not the first time someone just did not hear me, but I cannot grow used to it. I try to raise the volume but cannot find the strength to be heard. The inability to project is my constant reminder of a weakening body.

We head into a revolving door, and I, being occasionally polite, invite Meredith to go first. She continues walking into the store, the revolving door stops, trapping me within. I cannot push it. To make matters more awkward, people are waiting to get in and see my cane. So they just wait. No one wants to be the one to knock me over. The stalemate continues until I summon the strength to conclude the circular journey and enter the store I do not want to browse in the first place.

This is relatively new to me. Progressive diseases progress, and it probably was just a matter of time. The other day, we ran an errand. I am the non-driver always riding shotgun. When Meredith parked the car the other day, it leaned slightly to the left. I was not able to joust with a little bit of gravity and could not open my door. I would throw my weight against it, but the door would swing closed before I could get even a leg out. Meredith was looking at a brochure and was long gone.

When I could not drag my right leg into a cab before the sliding door closed, a nice young woman, waiting for a bus, walked into the street to hold the door until my leg was safely inside before letting it close. All of these incidents accumulate, adding up to an aging man who feels as if he could blow away in the wind or get punched out by a girl scout.

Everyday I look around me on the streets of New York. I hobble along as people of all ages brush by me, not rudely, only hurriedly. I stop and stare at strangers running up or down subway stairs, their arms full, paying no attention to their feet and whistling a happy tune. How do they do that, I wonder. Watching them makes me dizzy.

It is terrible to be surrounded by healthy, happy folks and to feel old and frail beyond my years. If I kept a ledger of every incident, each flaw and crack in my armor that demands my psychic attention, I would have little left to spread around my family and in my work. There has to be a formula for getting past these annoyances.

That is what they are-annoyances-and that should be my ticket away from taking them seriously. A bad haircut is an annoyance. The problem is that these incidents are harbingers of what may increasingly happen to me in my life, where my illness may take me. The phrase, may take me, offers some comfort in the absence of the words, will take me.

One of the challenges to living with a disease like MS is to tolerate ambiguity, not comfortable for the many, needing and seeking resolution. Who knows where this process will leave me? Actually, I have been knocked off my feet by the winter wind blowing off the Hudson River. The studio where I write faces the river, and I feel like an old kite when I leave the office on some days.

I am growing frail. That is not a fear for the future but a reality of today. Deal with it, I tell myself. Work at home when the weather is boisterous. Ask for help, opening heavy doors. That is not my strong suit, but it beats thanking strangers who pause to lift me from a prone position on the sidewalk. I did not ask for this, but neither did the many millions who struggle to survive and fight psychic battles along their journeys.

My aging mother still serves as a role model for me. She is too thin, a bit unsteady on her feet and reluctant to walk on or even near ice. High winds keep her off the street, and life’s aches and pains can throw her. Despite her predictable fears, she loves life and thrives on new adventures. The lady adores her grandchildren and her own kids, even me. Mom is not afraid to board a train or plane if there is something or someone she wants to see at the end of her trip. She is not afraid to die. My mother will be ninety on her next birthday. I should do so well.

Teaching Humanism

March 10, 2011

The residents rushed to my bedside in the middle of the night, a young Israeli woman leading the charge and jumping onto my bed to insert a tube through my nose and down my throat. “Wait!” I cried out. “You don’t understand what just happened.” But the young doctors descending on my room could not be stopped. I was vomiting, but not from the aggressive cancer surgery. That had been a week earlier. Rather, I was emptying my insides because of hallucinations from quitting morphine cold turkey. I was perfectly lucid, if only they had stopped to listen to me. I threw the tube against the wall, the new docs out of my room.

“Interns and residents on the floor see their work as a paramilitary operation,” an older attending physician explained the next morning. “You were right, and they just were not listening.”

Teaching new physicians to listen and, more important, to actually hear, is, I believe, missing from medical school training. The traditional medical school formula keeps students in the classroom for the first two years, and then throws them into exhausting 36-hour shifts at teaching hospitals. Making it through the hospital training becomes its own struggle to survive. Too often, patients become cases, not people, a collection of symptoms rather than human beings with real stories and real feelings.

There is a way to inject humanity into the system, but it has to start on Day One, when medical students still remember why they wanted to become doctors in the first place. First-year medical students should meet real patients during their first week at school; some schools require this already, but most do not. They should travel alone or in pairs to people’s homes. That’s where patients feel comfortable, and where they are most likely to speak their truths openly.

Older people will treat these students as physicians and probably be thrilled that the students look them in the eye instead of focusing on their charts. Medical students soon will learn the power of story, that it is not just the clinical information that matters. A vulnerable job situation, a troubled marriage, a kid who smokes marijuana  are salient realities that bring something to bear on illness and challenged health.

Doctor-patient relationships need to be nurtured in routine care over time. That process must not wait for a crisis and begin in a hospital. By that time, it’s too late. Patients never get to say what’s really on their minds. And physicians never get to know their patients on all levels.  

There’s an empathy gap in medicine today, forged by the limitations of managed care, high-tech medicine and the cacophony of large hospitals. Patient voices have been reduced to a whisper, if they’re heard at all. Medical schools can change that, by protecting young doctors’ capacity to find their empathetic selves. By introducing students to patients early on, medical schools can light a beacon — and hope that it illuminates a path to their best instincts.

The Last Straw

January 20, 2011

Enough is enough. The sick get sicker and wonder why. My anger flares. I did not ask for this latest siege and feel I have put up with plenty already. My dues are paid in full. The impact of piggy-backing illnesses is cumulative, and there are only so many bricks I can carry up the mountain.

Almost four decades and three conditions, in addition to the attendant complications that can be laid to constant stress on my body from MS keep me constantly close to the edge. I am weary, tired of the struggle, the fight in me waning. My frequently offered Faustian bargain: I will deal with what I’ve got. Just do not add to the burden, holds no sway with the powers that be. Bastards.

“The MRI and X-rays are clear. You need a lumbar fusion. These two vertebrae are hitting each other and a nerve is caught between them. We have to separate them to stop the pain.” I blankly stared at these complicated photos hanging over lights on his wall. I visualized the doctor playing with an Erector set and screwing his contraption to my bones.

“When do you want to do it,” he asked, fiddling with his stethoscope. His hammer probably was in his tool kit. Tonight, I answered. The pain was getting to me. Of course I did not want to get splayed that night or any other. I had been dumped on cold slabs in too many over-air conditioned operating rooms already. Surgery had become my recurring nightmare. I wanted to run, but I could barely walk.

The chronically healthy do not understand that sometimes the rest of us are weary to the bone. I had endured back surgery once already. I knew the razor sharp pain, the bayonet in the back. This I knew: I do not want this. But pain was my constant companion, anyway. The thought of the post-op journey to the bathroom or down to the kitchen made me want to cry. No. I cannot do this again.

I had to. I knew that, also. The alternative would be a life sentence of pain. Make your peace, I told myself. It would not be easy.

I hate hospitals. I fear then and avoid incarceration there at all costs. Nothing much good comes from a stay in the hospital, only the probability of leaving sicker than when I arrived.

After too much hospital time, fighting my battles with multiple sclerosis and colon cancer through the years, I had casually announced to Meredith that the next time I planned to enter one of those horrid institutions, my life would have to be hanging from a thread, such as after getting run over by an eighteen wheeler.

But back from the future. The challenge of enduring this spinal surgery came down to what kind of a life I want to live. I struggle every day with limitations enough from years of living with MS. Do I want to add to those weights around my neck? It does take discipline to summon the resolve to embark on a course no part of you wants to take.

An Aneurysm Scare

January 13, 2011

“The doctors who read the MRIs think they may be seeing an aneurysm in your brain,” my neurologist reported. A throbbing silence permeated my head.  I could not process the information, could see only my children’s faces looking at me — and the doctor — in confusion. I wasn’t terrified, only cold; a chill ran down my spine.

A week before I had gone for a routine MRI, common for people like me with long-standing MS. These procedures have patients lie flat at the narrow entrance to a tiny torpedo tube, then get pushed deep into the machine, unable to move because the quarters are so tight. My nose itches the moment I am swallowed by that chamber of horrors, where thunderous noise travels up and down your body for an hour or even 90 minutes.

The follow-up exam took place just as my wife, Meredith, and I and the kids were about to leave for Jamaica on our first vacation in years. My shorts and T-shirts and books were already packed. “Where is this cerebral IED?” I asked the neurologist.

“Next to your pituitary gland,” came the immediate answer.

“Isn’t that deep in the brain where nobody can get to it?” I asked. 

“There’s only the suggestion of an aneurysm,” she said.


An aneurysm is a blood-filled bulge in a blood vessel, usually an artery, resulting from weakening, often caused by disease. An aneurysm can lead to a stroke, a bleed that cannot be stopped in remote areas of the brain.

“Get an MRA” — or magnetic resonance angiography, a detailed scan of the arteries in the brain — the neurologist said. “We’ll know much more after that.” Of course, she was going away for the holidays, as was I.  A week of ambiguity and worst fears unleashed lay ahead. The way I saw it, this was a life-and-death situation, and there were not enough piña coladas in our tropical paradise to distract me from what might overtake my future. How does anybody process possibility?

I decided to focus on the fact that my oldest child a college senior, was showing a new taste for Cuban cigars. His slightly younger brother and his sister, about to graduate from high school, were buying rum drinks at the bar on the beach and signing my name. All are solid citizens in real life, and those distractions were not carrying the day. It was time to get serious.

Living with a chronic condition such as MS requires a variety of coping mechanisms, one of which is repeatedly reminding yourself that things could always be worse. As difficult as our lives are, we’re probably not going to die next week or next month. But suddenly, with the possibility of an aneurysm lodged deep in my brain, my coping arsenal had just lost a weapon.

Staring down the barrel of a gun is very different from dealing with a disease that merely diminishes the quality of life. Suddenly, my long-standing problems seemed like child’s play. I do not want to die. I need to see my children finish growing up, and I need to meet their kids. I want to grow old with Meredith.

Maybe we do not appreciate what we have until we are faced with losing it. I may end up in a wheelchair from MS.  That has been a worst-case scenario for years. Okay. Probably I can live with that. And my eroding vision — well, perhaps I can handle that if I can bargain for enough years to see who the next generation marries and catch a glimpse of the kids they produce. There is no shortage of Faustian bargains when we’re playing for keeps.

I lounged in the warm winds and faced the fact that I was upset. I had kept high emotion at a distance for decades, dealing with disease. There was no hole to crawl into now. Meredith kept urging me to wait and forgo jumping the gun. That struck me as the classic partner position. I could not postpone the sense of impending loss. When we returned home to learn that the critical test was negative and all I was losing was sleep, I groped for meaning and closure. I found neither, because life is precious, and there is no shortcut around that.

Operating to Save an Eye

December 17, 2010

An unusual feeling of anticipation danced through me as I was wheeled into the operating room a few weeks ago. I was in an upbeat mood. “Here we go again” had become “This has to help.”

Optic neuritis, a vicious condition caused by my long-standing multiple sclerosis, had taken away pieces of my vision over three decades, leaving black holes. A thousand microscopic blind spots that once were filled with light and color and the texture of what lay before me were now just empty spaces.

But there was something else now: a fog shrouding what I could see, an aura blanketing all that was visible. Each day was like making my way through a blizzard. No longer could I read a newspaper, a book, a menu, anything.

“You need to have those cataracts removed,” my neuro-ophthalmologist announced after his last examination. These were steroid-induced cataracts, a consequence of decades of using powerful drugs to counteract the inflammation brought on by my MS flare-ups.  My right eye was too far gone and not worth treating. Vision in my left eye might be improved.

Cataracts hit nearly 22 million Americans age 40 and older. By age 80, more than half of all Americans will have cataracts. Some argue that much cataract surgery is unnecessary. For me the procedure was a necessity. My ability to function productively hung in the balance.

“We are not anesthetizing you heavily,” the ophthalmologist explained. “I want you to be responsive.” I had never heard so many alien sounds, whirring and hissing. That must be the laser, I figured. “We are going to shine an obnoxious bright light in your eye. Just bear with me,” the doc had told me earlier. True to his word, he filled my eye with a light that could have illuminated a runway.

There was no pain, only pushing and pressure that made the procedure uncomfortable. “Tell me if you’re going to move,” I was warned. I lay so still, they might have figured I passed on to another dimension. “We’re getting close,” I was told. “I just need to put a few sutures in your new lens.” A needle in my eye? Now wait a minute, I shouted in my head.  But even that needle and thread were not too bad.

There has been too much surgery in my life, all grim. This one wasn’t grim, but it was surreal. I realized how much trust I was putting in one person. Vision is precious.  Mine certainly was in a precarious place, even before the surgery. My vulnerability became acceptable when I reassured myself that I felt good about this doctor. All we can go on are our best instincts. The stranger the procedure, the more we feel out of control — as if we’re ever in charge in an OR.

I know myself well enough to realize that when I’m desperate for an outcome, I’m ready to go with my gut. I liked the guy. The hospital was great. Right there, I was in a new place. Still, trust does not come easily for me when it comes to doctors. I liked that he marked the left side of my forehead above the eyebrow with an X that could be read at 50 paces. At least I sensed my leg would not come off.

The operation failed to produce the desired result. But a month of steroid eyedrops did help, and I regained some vision. Still, it’s a bitter pill — but it never was a sure thing to begin with. Long ago, I had stopped believing any new drug or procedure would help me when it came to multiple sclerosis. Nothing ever has. I just don’t ever want to look back and regret not trying everything I could.

I broke that rule this time around and allowed myself to think — really to hope — that the cataract laser surgery would be different. I really did believe my vision would improve. Optimism never has been my strong suit. A progressive, degenerative disease will knock that right out of you. I have learned my lesson. My mental health is protected when I keep expectations in check.

After a Stroke, a Song?

October 1, 2010

Harvey Alter’s voice suggests a man in search of his song. His speech has a musical tone, but at some moments the words themselves seem computer-generated, intended simply to spit out thoughts that make sense. His deeply human laugh begins in his belly when he strains to say something he knows is funny. But this is a vast improvement. For Harvey, a 62-year-old criminologist, there used to be only silence.

His journey began one day in 2003. Harvey was in his Greenwich Village apartment, putting the leash on his dog in preparation for their ritual morning stroll around the neighborhood. “Suddenly, I was disoriented and felt dizzy,” he remembers. “I stumbled and tried to gain control, but couldn’t.” Harvey was having a stroke.

Each year, about 795,000 Americans suffer a stroke, and more than 143,000 of those people die. But even for survivors, stroke puts everything they know at risk—their identity and skills, their dreams. Harvey’s very ability to think, all that rests in his mind, was in peril that day.

There were workmen in the apartment when it happened. “I tried to say, ‘Help me,’ but my speech was gone,” Harvey recalls. “I tried to say, ‘Call 911,'” he says. “I pointed to the phone. I think there was desperation in my eyes.” It seemed to take forever to convince the workmen, who spoke only Spanish, to do something. Anything. At first, they thought he was crazy.

Harvey thought of the warning signs of a stroke in progress: a drooping mouth, uncontrolled movement in the arms, unintelligible speech. How in the world did he know that? “I give credit to the media, the talk shows,” Harvey says now. “They have taken time to explain this stuff to us.” Recognizing the signs of stroke in himself, Harvey felt powerless. “I thought I was going to die,” he recalls. “To me, that loss of control meant that it was a stroke, which equaled death.” At the time, his partner was out of town. Harvey had no advocate—he was alone.

But in a way, each stroke sufferer is alone, he says emotionally: “So many of us have gone into the Valley of Death. Many of our brethren did not get out. I am singing to you now, trying to spread the word.” He pauses. Like many people who have experienced stroke, Harvey has aphasia: a compromised ability to make sense of and process words. Though some people do recover from this condition, for many it becomes a lifelong struggle. “I live in the country of Aphasia,” Harvey says. “There is no return. Once you are there, you’re there.”

There are two kinds of stroke, ischemic (a clot) and hemorrhagic (bleeding). Harvey had a clot that blocked the blood flow in the left side of his brain. This caused paralysis on the right side of his body. His face drooped on that side. And because the brain’s language center is located on the left, Harvey had difficulty stringing words together. Mostly, out of frustration, Harvey said “no.”

After two years of difficult therapy that did little to help his speech, Harvey’s therapist at St. Vincent’s Hospital asked him to sing. The request seemed strange: he hardly could talk. But the therapist wanted to try a technique called melodic intonation therapy. Words usually originate in the left side of the brain, but music—a magnet for pulling out words—comes from the right. Harvey began with “Happy Birthday,” and the lyrics began to make sense to him. Harvey was learning patience, and at last his brain was being trained to adapt. With much work, he learned to use the rhythms of music to coax out the words he wanted to say.

Stroke is a leading cause of long-term disability in America. The journey back to normalcy is arduous and uncertain. To sing loud and clear—or as close as he could come to that—is what Harvey did in his desperate effort to find his way home.

Harvey no longer works as a self-employed criminologist. Now he devotes his life to helping others escape from the country of Aphasia, running several support groups at Saint Vincent’s Hospital and Marymount College and founding an organization called the International Aphasia Movement that will provide the latest information and help to aphasia sufferers by aphasia sufferers.

There is a huge untapped market for such services, and Harvey Alter is paid precisely nothing to mine it. This is what so many of the chronically healthy cannot understand about those of us with chronic illness: how can we muster the energy to serve others when we’re dealing with the same problems ourselves? The answer is that we see so much suffering around us. We realize there are others much sicker than we and in need of our help.

I have been asked if I would trade in my MS to be disease-free. I always answer no. This is who I am, and now I have a job to do that is more important than any job I have done before. There are no heroes here, no medals or merit badges. There only are people who care deeply, flesh and blood like you, individuals who see it all and want to make life better. Helping others offers its own reward.

Losing Faith

October 21, 2010

“Piece of cake,” the orthopedic surgeon said. Then he smiled at me with a cocky grin as we peered together over my MRI films and discussed my imminent back surgery. I didn’t pretend I understood what I was seeing—but I liked the guy. I trusted him. “As a matter of fact, I did a lumbar laminectomy just the other day,” the doctor continued. “The guy was pain-free the next day.”

I was at one of the great orthopedic hospitals in New York City, and I was there because the lightning-sharp leg pain from a herniated lumbar disc was making my life miserable. I wasn’t sure if I needed a neurosurgeon or an orthopedist.  Either would be fine, a Harvard doctor I know and trust told me, as long as he or she had done the procedure a thousand times.

The morning of my surgery, I was administered a cocktail of drugs and wheeled into an ice-cold OR. Pink Floyd was blaring. It had been Bruce Springsteen when the same guy had fixed my knee years ago. This time the anesthesia numbed me into a quiet confidence that my victory over pain would soon be complete, the enemy having been put in its place.

“You’ll have some pain,” the surgeon casually mentioned afterwards, as he said goodbye. When a nurse handed me a prescription for pain medicine and suggested I fill it on my way home, I thought nothing of it.  The fact that the prescription was for oxycodone, commonly used to combat severe pain, went whizzing over my head.

The pain began the next day, as if a conductor had tapped his music stand and started waving a long white baton. The timpani thundered as shots of jagged pain travelled down one leg. I rode with it for a while, but soon the top came off the container of pills.  The pills blunted the pain somewhat, but I fled to bed anyway, each step reinforcing the sensation of razor blades in my left leg. Lying down turned out to be even worse.

When morning came, I pulled myself up by the bedpost, struggled to my feet and hoped not to fall. What about that pain-free guy the surgeon had described? That piece of cake? I was not expecting this.

Five days after surgery, and after an endless weekend, I began to question everything. Had I been at the wrong kind of hospital? Should I have seen a neurosurgeon first? Did my doctor, my friend of decades, mess the surgery up? He had, I just knew. I was losing faith. This was my spine, after all, the cable down my back, holding me together.

This would be my new normal, I feared—excruciating pain morning, noon and night. I called the doctor’s office. Any fever? Leakage? Incision site look okay? “I think you have to be patient. You will get better,” the surgeon told me. Five more days passed with no change. By now, I had pushed everyone away.

My isolation became a multiplier for everything I was feeling. I was not necessarily rational, but there were no dissenting voices to talk me down. Ten days after the surgery, I connected with a pain specialist from the hospital. We spoke for a while. “They tore muscle and nerves from your body,” she said. “It is going to take a while.”

Almost two weeks after the surgery, the pain did move on. But I was spent and demoralized. I usually have a high threshold for pain, but this had been different. Nobody had warned me. Why hadn’t the surgeon, or a resident, or a nurse, or even a janitor sat with me before I left the hospital and told me I might be embarking on the worst two weeks of my life? Why didn’t a pain specialist take me through the process? These are busy people, I understand, but we are talking about short conversations.

The truth is, many doctors just don’t do that. Stitch ’em up and adios. I asked female friends, mothers, if their OB/GYN docs had prepared them for childbirth. Some laughed. All said: No, we were on our own.

We patients are so vulnerable when we make it home from the hospital. The absence of information plays to our worst fears.

If anyone at the hospital had made sure I got an unvarnished view of what lay ahead, that two-week trip through hell could have been different. I feel I can survive anything, if I know what is going on.

So talk to us. Please. Otherwise, it’s too easy to lose faith as we struggle toward recovery.

From Sick to Old

September 30, 2010

Last week was a doozy. That was the week that I spent schlepping from doctor to doctor to try to sort out the various surgeries I’m scheduled to have.

First was the ophthalmologist, who announced that I’d need an operation to remove the steroid-induced cataracts from my eyes. Years of steroid use to try to minimize the flare-ups from my MS have made this rendezvous with the laser inevitable, he said.

The next day, I reviewed the results of an MRI of my lower spine from an orthopedic surgeon, who recommended back surgery for the stenosis and extreme pain I experience every day.

Ironically, my poor eyesight is invariably contributing to my lower-back pain. I sit hunched before the computer, my back twisted all out of alignment and my eyes almost flush with the computer — just to see the words on the page. I wrote my last two books like that, and my back is paying the price.  

One definition of getting old is when you spend as much of your time going to doctors as you do going to work. Another definition is when you talk more about your ailments than you do about politics or baseball. Mostly, old is a state of mind that can be born of long skirmishes with illness.

Growing old is not a happy condition. That is especially true when a person thinks the process is moving too fast for his or her age. Maybe that would include just about everybody; it certainly is true for me.

Getting old is different from aging. Aging is the gradual trip, the journey none of us particularly relishes. Being old, or just feeling old beyond our years, is the destination. Many a reluctant man or woman knows this place, as we are overtaken by our failing bodies.

Too often, I find myself feeling old. The more my jaw clenches in pain, the faster the years seem to add up in my head. There can be a mighty thin line between feeling pain and feeling old. How does that changed self-image alter who we are and how we approach our lives? Feeling old is a visceral feeling more than a thought. Feeling old makes me sad.

When I feel old, the excitement of planning the future fades to getting stuck in the happier times of the past. That implicitly suggests there will be no future. It is not the sense that death is approaching and the end is near. Instead, it’s a vague darkness that washes over any optimism that there will be more for me out there.

It sounds like depression, different only because the feelings are more situational than clinical. I have battled MS for almost four decades and am a two-time cancer survivor. I’ve been sad, anxious and scared, but rarely depressed. Thin lines separate those emotions, though. Seeing an old man staring back from the mirror touches off raw feelings, salt in the wound. All of us want to see the flowering youth with limitless possibilities each time we look. Maybe the hurt is our inevitable aging and sense of mortality, compounded by illness.

Being sick pushes me to measure loss. I am not all I was. Missing in action are the tennis racquet and bicycle; absent are the car keys and power of independence. Gone is the swagger born of high confidence and seemingly infinite options. What I used to be able to and can no longer do haunts.

There is no mystery as to why so many individuals with serious chronic illness feel old beyond our years. Loneliness and isolation are common and take their toll. We shut out others and live in our heads. Living effectively alone fertilizes fears and the negative view of self. This is a complicated mind game.

I stopped looking in the mirror long ago. When I shave I have to glance at my cheeks or neck, but that is it. What I do not see won’t hurt me. But face it, the sick do age faster. There is no game that will change that. I think we have to face our lives. We need to be grateful for what we have and stop crying for what is missing. That applies to more than the aging process.

We are who we are and we must find joy in life. The soldier at war knows the same fear and sorrow at what might happen. I repeat what my kids tell me in many contexts: “Get a life.” 

I add my own addendum: “Live and love. Get on with it. Time’s a-wasting.  What are we waiting for?”

I Want to be Normal

September 2, 2010

We people with chronic illnesses are not normal by any standard measure, often even to ourselves. So many of us live in our heads, sometimes the only safe refuge we know. We are driven there by others, by employers and dates and even casual friends who can say wrong things, even while trying to do right.

Almost all who have lived with a serious chronic condition for an extended period know the unsettling feeling of being marginalized by the chronically healthy around us. We are all too familiar with our own limitations, keenly aware of what others can do as we watch from our seats in the bleachers, forever the spectators. Gradually and grudgingly, we grow used to our second-class status because there is no way around it.

These regular moments frequently lack drama. And invariably they are subtle. There is no smoking gun dropped at the crime scene, little evidence that there even was a crime. The sick see and understand the soft discrimination against us. These exchanges can take place in the marketplace or in schools. Frequently they take place on the social scene, even within our own families.

I want to be normal. Please let me be the same as everyone else. These are the plaintive cries of the chronically ill, who are so often pushed to the side and made to feel different. Hurt runs deep.

Sarah Levin Weiss has battled Crohn’s disease most of her life. “I’ve always had the sense that I begin every race way behind the starting line,” she says. To cope with the ailment’s painful and disruptive digestive symptoms, she’s dependent on prednisone, a powerful oral steroid that has disfigured her face, stunted her growth and caused wild mood swings.

More complicated is that Sarah had an ileostomy, which means she lives every day with a bag that’s connected to her small intestine and hangs from her belly. Part of Sarah’s large intestine was badly diseased and needed to be removed. She refused the procedure for years, even as her doctors gently said it was time.

Who wants a bag, especially in a culture that pretends women do not go to the bathroom? Yet before she had the surgery, she was practically chained to a bathroom, unable to venture very far for fear of accidents.

Sarah glumly asserts that the bag is another sign of not being normal. I say back to her: It is the new normal. The ileostomy has set her free. She doesn’t bleed anymore, which was once a dangerous reality. She no longer closely orbits a bathroom.

Perhaps most important, she has carved out a life for herself that’s as close to normal as she can make it. She’s married to a man who understands her health issues and who supports her when she’s down. They are even trying to start a family.

“I am just trying to figure out what it is like not to be sick,” she admits. “It has been a long time. Can you ever get past the old body image?”

What a burden to carry. Sarah has cut the prednisone and is a very pretty young woman. Her battles are not over yet, though. Maybe those of us who are chronically ill don’t feel normal because we’ve forgotten what it was like. We just forge ahead, creating our own normal.