Archive | AARP

Season of Hope

October 30, 2011

In my mind, it begins as Thanksgiving approaches.  Holidays bring a season of hope, but tempered by the recognition of loss.  How ironic that the two coexist.  We recently had an October near-blizzard.  Trees and homes, anything stationary and standing enjoyed a blanket of white that called up memories of sleds and school being called off.  The air was full of driving snow as we set off to buy bushels of apples for our ritual homemade apple sauce.

Driving was treacherous, and when we pulled up to the apple warehouse, Meredith warned me that I better wait in the car.  “You will never make it through the slush,” she told me.  Every cell in my body wanted to brave it.  I knew what kinds of apples to select, how hard or ripe they should be.  More to the point, choosing the apples is half the fun.  The rest is hard work.

Our recipe and tradition came from my family.  I wanted to take charge, but a pretty loud internal voice advised me to sit still.  We were reduced to cell phone contact as Meredith cruised the open air barn in search of other treats.  I was stuck in the front seat, still with my seatbelt fastened. I could not even find the radio station I wanted.

Kids were laughing as they negotiated the slushy path.  All I could think was, another one gone.  My life is punctuated by what I used to do as I no longer can live up to memory.  Making applesauce is a big messy undertaking.  Apples must be washed and quartered, stems removed.   My family has forbidden me from taking butcher knife to apple.  Unsteady hands and failing vision have made the task risky business.  Apple sauce and blood do not mix so well.

We have opted to keep our ancient food mill, forgoing the ease of electricity for the old fashioned challenge of the hand turned blade.  This year I was horrified to realize I no longer have the power in my arm to turn the crank.  Once again, the task had to be handed off.

There was a pumpkin scented candle burning, a roaring fire in the hearth.  And there is nothing like the smell of applesauce coming together to remind anyone what time of year it is.  Our kids coming home from college soon, and even our oldest living in China making the annual pilgrimage.  All brought warmth to our lives.

Our final visit with my old man had been in the midst of winter festivities.  I cannot stop myself from taking stock of my own deterioration in these moments.  I am in bad  shape, but my life is so full.  A happy and successful family with bright futures couple with my own satisfaction of past achievements and current projects.  My life is not sad, determined as sometimes I appear to be to see it as so.

I have lost so much.  I have so much.  I continually remind myself that who I am is in my head.  That is my true identity.  I no longer drive or walk more than a block, read voluminously or cook.  That is sad. Okay.  That is out of the way now.  What I can do is think and write, perhaps making more of my brain than ever before.  I am deeply involved in the lives of my wife and grown children.  In a way it seems nothing less than criminally self-indulgent to focus on loss.

I have written about individuals with horrible diseases that will take them away from us soon enough.  My friend and former colleague is dying of a deadly brain tumor.  What am I complaining about?  I expect to be here next year.  All of us live with what is mysteriously if not arbitrarily handed to us.

We will never explain or understand how it is we end up on the roads  we must travel.   Thinking it to death is pointless.  “Get out of your head,” a shrink once wisely advised.  Just live your life, I remind myself.   Do not try to make sense of life.  This is getting tedious.  I have more constructive tasks ahead.

Chronic Disease: Losing Self-Esteem

October 25, 2011

When my wife, Meredith, and I dropped our daughter Lily at JFK International Airport for a post–high school graduation trip through Europe with buddies, Lily and I entered the terminal while Meredith parked the car.

“You wait right here while I get my ticket,” she instructed firmly as she dashed off to do battle with a ticketing machine. “Yes, ma’am,” I thought to myself. I had the uneasy feeling that I was with a sitter, and she was instructing me to behave myself. My daughter is 18, and I had the horrifying sense that generational role reversal already had set in.

This was not the first time I felt that my physical limitations undercut my image of myself as a strong parent. Self-esteem suffers when a father figure sees himself as less than he once was, unable to assume his parental duty. Humiliation comes quickly. I have written before about the pain of feeling like a child. This is nobody’s fault, only a predictable consequence of dealing with a progressive disease that increasingly diminishes a person.

Our flight home from San Francisco only days earlier made the same painful point. We were out there attending son Ben’s graduation from Stanford. The plane would board in less than an hour. Meredith and I sat at a wine bar, discussing how glorious the event had been and the special horror of flying home on the red-eye, leaving at 11 p.m. and landing at JFK just after dawn. I left my wife at the wine bar and hobbled across the concourse to a restroom. “I’ll meet you at the gate,” I told her.

After exiting the restroom, I began to make my way back to Meredith and the kids, looking for landmarks I had noticed on my way there. My legal blindness is as much a problem in these situations as my limited ability to just to walk. I eyed a fork in the concourse ahead that had escaped notice coming from the other direction; I now had to guess which road to take.

I walked what for me was a fair distance. My legs began to shake, as I began to feel tired and I still recognized nothing. I sensed a familiar panic mixed with strong self-recriminations: How could I have let this happen — again?

My cell phone rang.

“Where are you?” Meredith asked, concern in her voice. I chose to hear that as impatience. “I don’t know where the hell I am,” I half-shouted into the phone. “Tell me anything you see,” she instructed softly. Stay there, she told me after I identified a nearby shop: “I’ll find you.” That familiar feeling of helpless dependence washed over me. “Don’t let me out of your sight without a babysitter,” I instructed Meredith bitterly once we had reconnected.

On the long flight home, I sat wondering why needing the help of another feels so emasculating to me, as if I am less of a man when these things happen. I have to force myself to remember that I do many things well. I function efficiently and effectively, and that is what is important.

I covered wars and wrote best-selling books under difficult circumstances, taking chances and succeeding where others with physical limitations might not have made the effort. There should be emotional currency in the bank by now. More important is that I helped raise a family and was a strong force in my children’s lives. I took on the responsibility of helping them choose colleges they wanted to attend.

As my condition worsens and my body takes leave of me, I need to hang onto all I have accomplished. I was not merely a passenger. I have to stop allowing my worst fears to define me in my own head. I know I am deeply fearful of losing cherished independence. Control left long ago. Friends and acquaintances tell me that, when they look at me, they see only my strengths. I seem to be the only person who sees a cripple in the mirror.

“That’s sad” is about all Meredith will say. “You don’t even see what a strong role model you are for your own children.” I have felt like a survivor for so long I probably do not see more than my private nightmares. Maybe I should lift my eyes and see what a good life I have.

Dollars and Disease

October 20, 2011

The sicker I become, the greater my sense of entitlement.  Weird but true.  So many of the have nots in this land suffer with serious chronic conditions in ways I do not know.  The wallet can feel pain.  These citizens of sickness have no financial buffer and must make major and unwanted sacrifices for the privilege of seeking medical assistance on a regular basis. The sick pay grossly inflated costs.  Those include out of pocket expenses and loss of income because of time away from jobs.  And as patients deteriorate, so does their economic standing.

I have crossed the dreaded line separating those who now must play for keeps from the wounded. I feel like a professional patient.  That carries a hefty price tag. L  The new line of work can be exhausting and the hours long.  My illness has taken over my life.

I undergo tests and see doctors, it seems like every few days. I travel distances all over the city and to another state to offices and labs, hospitals and physical therapists.  And I wait.  There is a common look on the faces of those who sit silently in waiting rooms, staring at magazines they are not really reading.  Frequently their eyes have an empty look.

The devastating part of this picture is that many have to stop doing what they once did for a living.  Most human beings cannot hold down more than one fulltime job at a time, and for many, the employment office is at a hospital registration desk.

Filling out forms and waiting in line are a poor substitute for honest work.  That is our healthcare system at work.  The psychological cost to patients is high.  Bureaucrats have tremendous power over us.  And we sit in a corner dreaming about returning to a humming office and having the cash for flowers or a bottle of wine.

How about the rent or the latest payment on the car?  How are these people to pay for food and clothes for their kids?  Ask Buzz Bay, who was profiled in my book, Strong at the Broken Places.

In some respects, I am a lucky fellow.  I worked in television news for a quarter century and did quite well financially.  My good wife inhabits a space high in the stratosphere of television.  I would say she prints money, but she would kill me.  Let’s just say she is quite successful and does not worry about where the next jar of peanut butter will come from.  I have been writing books and these columns and have not taken up fat cigars, but the hours are of my choosing and allow doctor detours.

Life is tough for many in a bad economy.  For the chronically ill, with incurable conditions, too often it is a losing proposition.  Costs are staggering.  Many of us go uninsured.  Financial institutions are unforgiving.  It is heart breaking to see the sick slowly lose everything they have worked a lifetime to achieve.

I am sick.  That is true.  But I can afford the creature comforts to ease the journey.  More significant is the confidence that we will not lose our home or miss a meal.  Our two children still in college will finish their educations, and they will be launched in their lives.  I realize it makes little sense to feel guilty.  I do feel horrible.

Peace Now

September 27, 2011

I felt unusually self-conscious as we moved through the teeming streets of Shanghai this summer, wishing not to stand out as we shopped with our son, Ben, for his first apartment.  Any twenty-two year old graduating college, fluent in Mandarin and securing employment plying the booming Chinese economy deserved to be the center of attention.  I just did not want to fall on my face and embarrass anyone, including myself.

We were in and out of large department stores and small shops, going about our business, when Meredith suddenly made a startling observation.  In our days of moving around Shanghai, we had not seen a single disabled person.  There were no wheelchairs or walkers anywhere, no signs of sickness.  An old man on a cane stood out.  The next day came a second headline.

“Richard, have you noticed everyone staring at you?”  Then she added this.  “People seem to back away.  Nobody offers any help, even opening a door for you.”  My vision is so damaged, I had been roaming the city in my happy cocoon, noticing nothing.

As I began to pay attention, I, I did notice that no one came near me.  The issue had a familiar ring.  I have written that in our own country, people do not want to see the sick and disabled, that our popular culture rewards beauty and physical perfection.  People look away because we spoil the view.  After a while, that attitude is hard on anyone’s self-esteem.

And I thought Americans can be cold.  This vast country seemed to offer a more extreme lack of connection, cold harsh judgments if not a cold shoulder.  And where were the Chinese suffering souls who had to exist in a land so large and populated?  We spent the remainder of our expedition talking about this subject, which made me reconsider my own feelings of isolation already in place.

When we returned to the states, I could not shut off my brain.  I had developed a bad case of the creeps.  The chronically ill and disabled suddenly were lepers.  A few phone calls led me to Dr. Qiang Yu back in Shanghai, who teaches the mechanism of Chinese medicine at their Academy of Science.  Dr. Yu quickly confirmed my observations.

“Disabled people are not respected in our culture.  They stay hidden,” he explained.  “They are not seen on the streets.”  I described the Americans with Disabilities Act, which  mandates that all people be accommodated in public places.  “I know that,” he responded.  “Our facilities are not adequate.  People do not pay attention.  It’s a bad situation in China. They just want to make money.”  I wonder how that makes the sick feel. “They are not proud of themselves.”  How about ashamed?

I realize we do have it pretty easy in America.  But the instincts of the Chinese may not be so different from ours.  Maybe we control our worst instincts, but that t does not mean they are not there.  Perhaps that just is what Americans hide.

It is not as if many of us have not experienced discrimination by the chronically healthy at home.  I  long have thought less of myself because I am sick.  No doubt that has caused me to believe others must share that view of us as diminished.  Blaming yourself for being sick is self-destructive, though it feels involuntary.

Chinese society becomes a negative role model to be sure.  I resent others for doing what I freely foist on myself.  They hold up a giant international mirror that reflects an imperfect and sometimes mean world.  We are better than that, and people like me should appreciate that and think more of ourselves.

Turning in my Medals

October 16, 2011

After the seminar, we shook hands in that way which suggests familiarity, though we had never met. We did not disengage for a long moment. The panel at Harvard’s Institute of Politics, where I once had been a Fellow during a break from CBS News, mixed it up on press coverage of presidential elections, a subject of great interest to both Elizabeth Edwards and me. Our brief encounter afterward was in code and punctuated by intense eye contact. I admire your grace, I said softly. “Back at you,” she answered quickly. “You and I are better people for what we give to others.” And then she was gone.

I never saw Elizabeth again.

Elizabeth Edwards seemed at peace. I am not. It was as if she moved through life inside a bubble, in an aura of tranquility. She was gravely ill, though she had not yet been publicly betrayed by her husband. Implicitly, I realized I know no peace. For me, The Sea of Tranquility rested only on the moon. Yet people who read or listen to me think I am the prototypical well adjusted human. An imposter is more to the point.

I present myself as all I wish I could be. Maybe we all do that. The more I project peace of mind, perhaps the faster I will discover that prized state. I believe that the sick and suffering in fact are anxious if not frightened. We fear the unknown. Who does not? So we crave relief and imagine that others hold the keys to the kingdom. Of course, that is not necessarily the case, but many of us need to believe it is true.

When two bouts of colon cancer piled on my multiple sclerosis a decade ago, I wrote a series of columns chronicling my journey in the Science Times section of The New York Times. The public response was strong, largely because I did not have an M.D. after my name. I believed then and now that ordinary folks draw strength from each other. The Hell with the doctors. We want to touch and be touched by each other. How did you do it? We wonder. I have to know.

Hence, power is ascribed to me. How did you make it through that? I am asked by audiences. You are an inspiration, I am told by individuals. I ignore these well intentioned plaudits. I wonder if people really understand how angry and fearful I am. When I speak the truth about my conflicted state of mind and admit my tough emotions, audiences quickly tell me how courageous I am to open up. Oh, please, I say loudly in my head. There are no heroes here. All of us just try to make it through the night.

All of us overhear others in coffee shops or on street corners, speaking too loudly and announcing, it seems to anyone within earshot, I could never deal with that or I can’t cope. The truth is, they do not know what they are talking about. Until they stare down a crisis and are tested, people do not know what they can do. So they sell themselves short.

I have come to believe that we are all stronger than we believe. We wander through life believing we are going to cave any minute. That is why we look to others to show us the way, as if any among us has the map and can guide us across rough terrain. Try purchasing your own compass.

We travel different roads. Some lean on therapists or support groups. Others, myself included, choose to go it alone. There is no right or wrong way. Just understand we all make it up as we go along. There are no medals or merit badges for coping, at least there should not be. A happy life is its own reward. Maybe we should quit looking for others to anoint and spend more time in front of a mirror.

Please take my medals back and pin them on your own chests. You will grow into them. My college age daughter, our youngest, once looked at some plaque lying around. She asked me if I had noticed that no one in the family ever gave me an award. Actually, yes, I answered. “Ever wonder why?” she inquired with a straight face.

Sickness through Different Eyes

September 27, 2011

I felt unusually self-conscious as we moved through the teeming streets of Shanghai this summer, wishing not to stand out as we shopped with our son, Ben, for his first apartment.  Any twenty-two year old graduating college, fluent in Mandarin and securing employment plying the booming Chinese economy deserved to be the center of attention.  I just did not want to fall on my face and embarrass anyone, including myself.

We were in and out of large department stores and small shops, going about our business, when Meredith suddenly made a startling observation.  In our days of moving around Shanghai, we had not seen a single disabled person.  There were no wheelchairs or walkers anywhere, no signs of sickness.  An old man on a cane stood out.  The next day came a second headline.

“Richard, have you noticed everyone staring at you?”  Then she added this.  “People seem to back away.  Nobody offers any help, even opening a door for you.”  My vision is so damaged, I had been roaming the city in my happy cocoon, noticing nothing.

As I began to pay attention, I, I did notice that no one came near me.  The issue had a familiar ring.  I have written that in our own country, people do not want to see the sick and disabled, that our popular culture rewards beauty and physical perfection.  People look away because we spoil the view.  After a while, that attitude is hard on anyone’s self-esteem.

And I thought Americans can be cold.  This vast country seemed to offer a more extreme lack of connection, cold harsh judgments if not a cold shoulder.  And where were the Chinese suffering souls who had to exist in a land so large and populated?  We spent the remainder of our expedition talking about this subject, which made me reconsider my own feelings of isolation already in place.

When we returned to the states, I could not shut off my brain.  I had developed a bad case of the creeps.  The chronically ill and disabled suddenly were lepers.  A few phone calls led me to Dr. Qiang Yu back in Shanghai, who teaches the mechanism of Chinese medicine at their Academy of Science.  Dr. Yu quickly confirmed my observations.

“Disabled people are not respected in our culture.  They stay hidden,” he explained.  “They are not seen on the streets.”  I described the Americans with Disabilities Act, which  mandates that all people be accommodated in public places.  “I know that,” he responded.  “Our facilities are not adequate.  People do not pay attention.  It’s a bad situation in China. They just want to make money.”  I wonder how that makes the sick feel. “They are not proud of themselves.”  How about ashamed?

I realize we do have it pretty easy in America.  But the instincts of the Chinese may not be so different from ours.  Maybe we control our worst instincts, but that t does not mean they are not there.  Perhaps that just is what Americans hide.

It is not as if many of us have not experienced discrimination by the chronically healthy at home.  I  long have thought less of myself because I am sick.  No doubt that has caused me to believe others must share that view of us as diminished.  Blaming yourself for being sick is self-destructive, though it feels involuntary.

Chinese society becomes a negative role model to be sure.  I resent others for doing what I freely foist on myself.  They hold up a giant international mirror that reflects an imperfect and sometimes mean world.  We are better than that, and people like me should appreciate that and think more of ourselves.

Physical Therapy: Choose Wisely

June 23, 2011

I never longed to be a Marine. Probably it was that aversion to physical punishment that kept me from physical therapy, too. The prospect of hurting so I could eventually feel better holds little appeal. For years, physicians and family have told me that I’d likely benefit from PT, but I’ve resisted — until now.

Now, after multiple surgeries, my back is so weak that I can barely walk. My doctors have made it clear that my only hope of regaining strength is an intense physical therapy regimen. And so my days of denial have ended, at least on this front.

As with any practicing hypocrite, I became an instant convert, deeply committed to challenging myself with the most rigorous PT program I could find.

Of course, I had no idea where to look. I talked to friends, only to learn that each of them knew the perfect person. Their shoulders — or their knees — do not hurt anymore. What more proof could I want?

But I decided to play it safe. I called and made an appointment at a highly regarded rehab facility about 20 minutes from my home. They needed a prescription and an insurance card, and the deal was done. The grounds themselves were magnificent, with quiet roads leading to a series of buildings that provide hospital-based and outpatient services. I arrived and walked down a long corridor, passing patients on canes and walkers and in wheelchairs, all casualties of neurological or other conditions.

My hopes were high for about 10 minutes, before Nurse Ratched set out to evaluate my condition. She began by simply watching me walk. She kept shaking her head. “You’re a danger to yourself, even with the cane. You look like you’re going to fall,” she announced. “You need a walker.”

I haven’t fallen yet, and I’ve used a cane for years,” I replied. Already I disliked her.

Next we ran some simple tests: She had me walk a course she had laid out in the large room. She had me sit in a standard chair and stand — five times. “You’re failing every challenge I’ve given you,” she announced soon enough.

I had walked the course too slowly. She never told me to walk it as fast as I could. I had asked her if I could use my arms to help me stand up from the chair. “Do what’s most comfortable,” was her reply. Then she deducted points because I used my arms to help me stand. Her conclusion: “You’re very weak. I don’t know what we can do for you.”

You don’t talk that way to a patient looking for help. Care providers are powerful people in our lives. She could have encouraged and motivated me — but instead, she did the opposite.

Based on the nurse’s recommendations, the center designed a toothless exercise program for me that would not have challenged a grade-school kid. This was not therapy at all. Obviously, the therapists had given up on me before they even started. I had asked for one person to work with me for continuity but saw a new face every time I arrived. The treatments were not challenging; the PT staff were condescending. When I left for the last time, no one ever bothered to ask why.

I sat around at home in my gym shorts, all dressed down with nowhere to go. I remembered that my wife Meredith had liked the physical therapy she had after she tore both hamstrings while training for a marathon. The place she went was called Spears, which sounded lithe and sharp enough for me.

Within minutes of my first session there, I was sweating. I was on my back, feet atop a large rubber ball. The trainer would push or pull or move the ball diagonally. My job was to sense the direction and resist. He understood my physical weaknesses and pushed and prodded, getting me to endure difficult exercises to strengthen muscles. There was no condescension, only professionalism. The trainers wanted feedback: “Talk to me,” mine demanded. “How does it feel?”

The lesson? Physical therapy can be valuable, but shop carefully. Respect is a powerful motivating force. I am content with the blood, sweat and tears — and I’m getting better.

Chronic Disease: The Invisible Illness

June 9, 2011

Earlier this year, a long-overdue meeting took place between chronic illness advocates and White House officials about the flood of chronic conditions threatening our collective health. It was about time.

As recently as six years ago, the National Center for Health Statistics, a division of the Centers for Disease Control, estimated that 90 million Americans lived with at least one chronic illness. Some argue that literally half the population — roughly 150 million of us — deals with some sort of chronic condition.  How do we account for such rampant growth? The most obvious explanation is that the vast cohort of baby boomers — those born between 1946 and 1964 — is aging, with the first boomers turning 65 this year. Eighty percent of all people over 65 have a chronic condition. 

Another factor is that more illnesses, including some cancers, used to be killers. But extraordinary advances in medicine allow doctors to treat them, and now they are considered chronic. Chronic illnesses by definition are incurable, but often they can be treated, with symptoms kept in check. 

As a result, vast numbers of us live with chronic illnesses, and our needs are too little understood. Often, our illnesses or disabilities are invisible to the world around us.  That may be why some people do not really believe we are really sick. But you look so good, becomes our inside joke. Our warm smiles and rosy cheeks belie the seriousness of whatever ails us.  People want to believe we are healthy, and if we look the part, then how bad can things be?

Sarah Levin Weiss, who was profiled in my book Strong at the Broken Places, is a case in point.  Sarah has Crohn’s disease, a ghastly degenerative condition that can ravage the digestive tract.  Sarah has been on regular oral steroids for much of her life. “But my cheeks are rosy and my face round, and others think I am the picture of health,” she once told me, long ago. 

How is she today? “Well, I’m six months pregnant, and people say I am glowing,” Sarah told me recently.

When I heard this, I was shocked and elated. Sarah and her husband had been trying to conceive for some time. “And I have been having problems with my stoma,” she added.  Sarah has an ostomy, and the stoma is the flesh tube that connects belly and bag. “I constantly look down and see it and realize I will have this for the rest of my life. I hope that having a kid makes me feel normal, positive instead of negative.”

Chronic illness is a private hell. Our lives are altered, our strengths and abilities diminished. Sometimes we need special access to buildings and transportation. Some of us need extra time or attention to perform life’s little tasks. We endure a constant need to explain, to educate and convince others that we’re not more trouble than we are worth.

Jennifer Jaff, an attorney who heads up the group Advocacy for Patients with Chronic Illness, argues that ignorance and squeamish reactions to the sick stem from a fear that illness can strike anyone at any time. “We represented a 20-year-old woman with intolerable pain from head to toe,” Jaff told me. Her insurance company had cut her off. Two of three doctors did not support her appeal.

What people need to realize is that we are not talking about nameless, faceless persons down the block or around the corner. If we are lucky enough to enjoy good health, a family member or friend, neighbor or colleague is anything but.   

Jennifer Jaff gets it, because she lives it every day. Jennifer, like Sarah, lives with Crohn’s disease and a painful inability to digest food, accompanied by chronic nausea.

But people can’t see her sickness. It’s not a broken bone. We can’t see heart disease either, or diabetes, neurological problems, or pulmonary disorders. Diseases of the mind are rarely obvious. And we are not looking anyway. 

Pain and Surgery Recovery

May 26, 2011

Very little was spoken about what to expect after the surgery. I thought I understood and just said, “Let’s do it.” Spinal surgery would be a new experience, but I trusted my instincts.  The lumbar fusion took about four hours.  Two days later I fled the hospital, anxious to sleep it off in my own bed and return to a busy life.  I was in pain, but so what?  No one was happy with my hasty retreat, but physician and family knew better than to try to talk sense into me.  Meredith, my wife, could only mutter, “I hope you know what you’re doing.

Before surgery, the pain was razor-sharp.  Every step was a nightmare.  My back was on fire.  The crisis had started years earlier from a herniated disc in my lower back. That pain had festered through the years as I developed spinal stenosis — a narrowing of the spinal canal — with vertebrae pinching nerves in some places and creating bone-on-bone pain in others.           

My prognosis was clouded by my multiple sclerosis.  No one could say with certainty how successful the surgery might be, because they didn’t really know which piece of the physical deficit was muscular and which was neurological. In spinal surgery patients with MS, neurological function does not always return.

After an uncertain first few weeks post-surgery, when the pain seemed almost unbearable at times, everything seemed to be getting better. I was just about ready to rejoin the world outside when I arose one day to discover that my back was so weak I could barely stand straight. I could not walk more than a few feet without finding a surface to lean on.  I couldn’t even carry a cup of coffee or a glass of water into the next room. This new normal was a body hunched over, looking as if it would fold in half and crumple to the ground.

This went on for weeks. I freaked. I told my neurologist I was having an MS flare.  Frequently, the patient is the first to sense trouble, so my problems were taken seriously.  I had four consecutive days of steroid infusions at an MS center, where drugs were pumped into my body to reduce inflammation. On the final day, I was dropped off less than a block away from the clinic.  I barely made it to my appointment, collapsing in the doorway.

But the real question remained: Was I having trouble recovering from the back surgery? Or was the situation more ominous, with my MS becoming increasingly difficult to control?  Could it be that the nerves in my back were misfiring and the large muscles that support my spinal column were failing to receive the proper signals?

I’m having a relapse,” I told Meredith, having little factual basis for the claim. My worst fears were at work, and the wheelchair in my mind’s eye was inching closer. My surgeon argued that I was only recovering from the surgery. But then why had I been getting better, only to suddenly get so much worse? There was no way to know.

Have you ever found yourself having to start over, to go back to the starting line to begin again? That’s how I felt, only the starting line had been moved. Lately, it seems, that starting line is a moving target, slipping further and further behind where the other runners start the race.

Walking like an 85-year-old does not put a bounce in your step when you are just wandering into your 60s.  I have to find a new way to cope, at least in my head. I always try to remember that who we are resides north of the neck. The identity of a basketball player is in his soul, not his sneakers. This container of mine is flawed, but the contents remain sound.

In typical fashion, my questions came after the spinal surgery. Only then did I begin to appreciate how long the recovery takes.  The role of physical therapy became clear.  I learned that PT could take up to eight months for this type of operation. And I am not your average back patient. I am carrying multiple sclerosis into every therapy session.

Now, months post-surgery, I still have pain, and I still wonder: Am I having a relapse or a persistent problem healing? Will I mend or will I forever forward have to grasp solid, stable objects as I walk?  I will dwell on that during many sleepless nights.

Desperation

May 17, 2011

“I am planning to go on a hunger strike to publicize the plight of the chronically ill.  The World Health Organization said that chronic illnesses have reached global epidemic proportions and now cause more deaths than all other diseases combined.  Yet, it is harder every day for me to find help for the people who call us in desperation.”

Desperation. I know that word.

This was in an email from Jennifer Jaff, an attorney who heads up Advocacy for Patients with Chronic Illness. It is hard to know if Jaff’s professional frustration drives desperation or if it is personal pain. Jaff lives with her own chronic conditions. Jennifer fights Crohn’s Disease and a painful inability to digest food, accompanied by chronic nausea. “People are quietly dying.  They have invisible illnesses, so they face disbelief and a lack of support and understanding.”

Desperation is an odd emotion. It is intense, dark, hopeless at its core. Sometimes desperation is wild and out of control. Then it becomes frightening. Faith in the future crumbles quickly. I have been there. Colon cancer was a cakewalk compared to vanishing vision or limbs gone numb and useless from MS. Too often these bring structural change in the body, destined never to know the cyclical swing back to normalcy.

Days ago, I walked through Pennsylvania Station, headed for a train to Washington, D.C. A lightweight bag was slung over my shoulder, sparsely packed to avoid weighing myself down. Halfway across the large waiting area adjacent to the gates, I knew I was in trouble. I could not take another step, and as my legs wobbled uncontrollably, I thought I would crumple to the floor. I had a video in my head of impatient travelers just stepping over me. I felt defeated. Defeat turns to desperation quickly enough.

I was approached by a woman who worked for Amtrak. She said, “You need a wheelchair.” She did not ask but just told me. I nodded and said nothing. Ten minutes later, I had rolled to the train and was in my seat. Is this my life now? was all I could wonder. Rapid-fire memories of sprints down war-torn streets in Beirut and diving under cars to escape gunfire in El Salvador flashed through my mind. I sat in an empty train car, yet to be opened to the chronically healthy and able bodied. I wanted to cry but figured that was not an option on a train soon to be crowded.

On the ride to the nation’s capitol, I opened The New York Times and came across an interview with Stephen Hawking, the renowned British physicist and authority on the cosmos. Hawking suffers from ALS, Lou Gehrig’s Disease, and has spent years in a wheelchair. He only can talk using a computer generated voice. In the Times interview, Hawking was asked what advice he would offer a person diagnosed with a serious disease.

“Concentrate on things where disability doesn’t prevent you doing well, and don’t regret the things it interferes with,” he answered. Then Hawking added this thought. “Don’t be disabled in spirit as well as physically.” This man is horribly disabled, yet he projects a peace of mind I find startling. How can I get to that place?

I do not think I am disabled in spirit. I do feel free occasionally to mourn a man I often hardly remember, the me I once was. I believe that can be healthy, as long as the word, occasionally, stays in the sentence. Loss can not be denied. When I left the train, I found myself stranded on a platform at Union Station, still unable to take more than a few faltering steps.

“Hey Buddy,” a voice rang out from behind. “Get on.” An Amtrak worker drove the baggage cart on a circuitous route through and under the station to the front of the cab line. He pulled a taxi down from the many waiting in line, and in an instant, I was on my way past the U.S. Capitol and headed to my hotel.

I learned a little about saving my spirit and accepting help from others that day, though peace of mind is not in my DNA. I am deeply fearful of the future. My illness is progressive. My body weakens and function departs, slowly but decisively. I know which way I am headed, and I feel helplessness closing in.