Keep On Keeping On

The awful transition from player to spectator, sitting in the stands as others scramble for the ball, can be slowly traumatic.  Meredith and I used to hike together, climbing the steep slopes of summer or biking the back roads, watching foliage change. Those are gone.

Perhaps that is a metaphor for the conventional life. Oh, to be active again.  Such opportunity on the planet is to be cherished, even celebrated.  For many of the sick that begin their life of loss in youth, autumn comes early as the physically active life stands at a distance and we are forced to sit it out.   

For those of us who knew the exhilarating expectation of the limitless life for at least a few decades, the quality of loss is different from those who never knew it.  Our hands grasped the fullness of life.  We had it all before we had to watch in horror as so much of what we loved slipped through our numb fingers. 

Arms, Hands, fingers begin to fail.  The silver screen of vision has begun to fade to black.  Standing has turned to sitting.  Muscles have shrunk.  The list goes on.  My diagnosis of MS came at twenty-five.  Vision in both eyes was ravaged by thirty.  Function faded through the years, and he crumbling continues.  One thing I can say with conviction, though, is that I have a great life.

I know I am a broken record.  We cannot allow ourselves to become victims.  We must live as fully as we can.  Sometimes we can flourish.  This is our one shot on the planet.  Why squander it feeling sorry for ourselves?

I am no hero.  And there is no prescription for making our lives work.  But we must stop building fences around ourselves, then complain that we are closed in.  Opportunity is out there.  Let’s not take the easy way out and assume we cannot do something or that we will be denied the chance.  We have to reach down and find strength from within.  Don’t look for it under the Christmas tree.  When we think the  world says we can’t, we have to tell ourselves we can.  We must never let illness allow us to lose faith in ourselves and sit it out.

I am a prisoner of the grandstand seat only in my mind, when I get down on myself for being less than I was, too often forgetting I am more than I was because I have learned life the hard way.  Those can be powerful lessons.

Often, we cannot do it alone.  I know I cannot.  Meredith is my friend and ally.  She knows intuitively when to back off.  She also understands I need to be pushed and knows when to lean into me.  Her touch may not be gentle, but neither was Vince Lombardi’s, and he knew something about winning.

All of us want to be winners.  What is the point of the exercise if we just give up?

The Short Haul

So here I am, perusing the Sunday Times, ready to focus on Obama’s screw-ups on healthcare and House Republican meltdowns of the moment. Anything but my blog.   Then I turn a page.  Never turn a page in s newspaper when you want a day off.  Leave well enough alone.  The stupid blog was asleep, and I wanted to join it, in separate beds, of course.  But I cannot escape MS, in my life or on page A18 of my hometown newspaper.  Damn.

Katie Comodore, an artist,  has lost vision in her left eye.    She believes it is a tumor pressing against her optic nerve and looks forward to a glass eye.   Right.   I pause and diagnose Katie with multiple sclerosis in an instant.   A no-brainer.   She goes blind in the eye.  Surprise.  I have been at this too long.

Vision returns.  The article says Katie  would  have preferred  a diagnosis of  cancer, why is not clear, maybe with its clean. more reliable recovery.  There is a leap of faith.  MS means a long trip wearing blinders.  MS  sucks, actually, as  Katie will soon learn.  No cure there, no boundaries, and the fire doors are locked.  Cancer is no treat, either.   Pick your poison.

Katie and her family have coped with MS for more than five years.  I want to say, try forty.  Except they may know and have mastered the magic I have not.  What do I know?  This is a new era for MS-niks.  It is the jigsaw puzzle that confounds.  Katie has been diagnosed with Crohn’s Disease also, a debilitating assault on the bowel.  MS is all over my family.  So is Crohn’s.  The puzzle pieces fit tightly.

“There are a lot of people that don’t take the diagnosis well and fall into despair.” Ms.  Commodore told the Times.  She was awarded monies to pay for a personal trainer.  Katie is okay for now,  but writers and reporters  focus on the moment.  MS is not a sprint but a marathon.  God bless Katie.  She has her act together but has a thousand miles to travel.

I am an old dog but ready to learn new tricks.  Seniority counts for nothing with MS.  I have ne tenure.  Feel free to fire me whenever.


The Other Side of the Coin

Meredith liked my last post, the one about handling a bad diagnosis with grace when it comes.  “It was well written,” she said.  Then Meredith added her postscript.  ”Why don’t you write about how angry you get?” she challenged.  “Talk about your despair, about how many times you say you wish you were dead?”   Oh, that.  She got me right between the eyes with that one.  I preach calm resolve.  I do not always live it.

There is, of course, a difference between dealing with a diagnosis, a relatively short-term process, and holding onto a positive attitude for a lifetime of living with an incurable illness.  I am here to tell you that cannot be done perfectly, accept, perhaps, by Clark Kent.

When I fall in the kitchen, a shattered glass or plate around me like storm debris, when I cannot stand and feel the pain of my collapse, in an arm or leg and deep in my psyche, there is an explosive reaction that comes in an instant.  No, I do not calmly note that this, too, shall pass.  My language is coarse, the decibel level high.  Darkness closes in as I react.  Mortality seems inviting in the moment.

These disruptive demonstrations have a powerful effect on Meredith.  For that reason, alone, I wish I were better at maintaining control.  I am not.  We are left with a wounded wife standing over her sheepish husband, who still cannot figure out how to put his feet back under him.

It is tempting to write off the incidents as releasing steam so I do not become a mass murderer.  But I have to consider more than myself.  I will occasionally erupt when the kids are around, but generally I leave off the part about designing my demise.  I know I hurt my wife because my echoing cries go in one ear and stay there.  Letting off steam may help me, but I know I am doing Meredith no favor.

Language is powerful.  If you are going to gargle with nitroglycerin, beware of the consequences.

When Bad News Arrives

My phone rang this morning with a familiar request.  Would I talk to someone just diagnosed with multiple sclerosis? I am often asked to speak to a usually young person who has been diagnosed with the sickness.  Leave me alone, I think.  What do I know? I ask myself.  There are no answers, only questions, doubts, fears.  Okay, I say, but have him or her call me.  A friend or relative may think someone wants to talk, but often the poor confused soul just wants to hide.  I get it, and more often than not, my phone does not ring.

So here is my unsolicited, perhaps unwanted advice.

Slow down.  Take a deep breath and do nothing.  Finding the perfect neurologist, as if one exists, can wait.  There is time later.  Do not dive headfirst into an MRI machine.  You’ll get a headache. I will get you an appointment next week.  Sit down and think.  You are not going to wrestle the beast to the ground.  But you do need to coexist with it for a lifetime.  You have signed up for a lifetime membership in this club, which will not expire until you do.

MS is a mind game as much as a disease of the body.  Are you going to be victorious or a victim?  Too many of us construct fences around ourselves, limiting us by assuming the worst.  I am a believer in healthy denial.  Do not deny the disease.  That is a losing hand.  Deny the certainty of possible outcomes.  You have started on a journey without end.  Learn to live with uncertainty.  You do not know where your journey will take you.  Your attitude will play an important role in your health.  Chill out.

Join a gym.  Get in shape and stay there.  Body strength can save you when you need to hold on or fall carefully.  And you will feel better and look healthier by dropping the weight and toning up.  Learn to respect yourself.  MS too often attacks self-esteem and confidence.  You are psychologically stronger than you think.  Do not forget that.

Please learn to laugh.  Illness is arbitrary and the theater of the absurd.  Crying gets you nowhere.  “I am thankful for laughter,” Woody Allen noted, “except when milk comes out of my nose.”  Actually, that can be pretty funny, too.  Do not overlook what your family and friends need to cope with your situation.  A positive attitude will lighten their load.

Yeah, I know.  Well they do not have MS.  Yes they do.  We are not alone.  Our families and friends walk in our shoes with us, no matter how we stumble.  I helped raise three kids who had to live with my condition.  We laughed a lot.  Never tears.  When I could not button a shirt or tie my shoes and got angry with myself, they called me on it.  When I swore a blue streak at the top of my lungs, my youngest threatened to wash out my mouth with soap.

Know this.  You will survive.  And you can have a good life.  But you have to work to make these things happen.  Toughen your skin, my friend.  None of this will be easy.  Accept that.  Your future has not been taken from you, only your directions to Easy Street.



Dollars and Disease

Our Berlin hotel ov.erlooked the Brandenburg Gate, a powerful symbol of that city of challenge and change.  We had come from visiting our daughter in Prague and were exhausted.  My walking was bad, and my gut ached, colon cancer’s gift that keeps giving.  I hurt and muttered to Meredith that I really just wanted to go home.  I gazed down at the gate, sensing its power and realizing how weak my self-indulgent attitude really was.

Why was I not just taking it in, grateful for what I have in life? People long for experiences like this.  In the end, being home and feeling miserable are not a ticket to better health or just feeling whole.  And here I was, in one of history’s great spots, moaning and groaning like a child.

How lucky am I?  I see the world, not the plain interior of some apartment where I sit because I can do no more.  Medical bills eat up money.  People must make hard choices.  I see the sick struggle up the steps of buses, the disabled hobbling down steep steps to the bowels of the subway, waiting for a train. I ride in taxis or car services.  How lucky am I?

We enjoy first class air travel and spend nights in great hotels.   We have a life that is out of reach for the many.  It is better to be moneyed and miserable.   I get it.  Chronic conditions and cash work well together.  Wealth does not buy health, as The Beatles pointed out years ago.  But assets and attitude can be joined because suffering in comfort beats the options.

This is no small matter.  I know I cannot feel guilty for living among the Haves when there are so many Have Nots out there and in need.  None of us should lose sight of the fact that illness drains individuals and families of nest eggs and necessary resources.

We live in a nation with a preposterous system of medical care.  No nation on earth spends more on healthcare and gets less.  Maybe if we spent less on pointless foreign wars and cleaned our own house, we would see fewer lonely and sick souls on our trains and buses.

When I walked

Here was a movie I did not want to see.  Too close to home.  I read about it in the New York Times.   Of course, I knew I would end up going.   It was inevitable.  A young filmmaker documents his descent into the horrors of MS.  I had been there.  In fact, I am still there.  I was not bored with the storyline, only too familiar with it.    The pain would be personal.  I could feel it already.

Multiple sclerosis is progressive debilitating disease.  MS also is a mind game.  It is an illness of loss, which leaves us to constantly measure what we used to do and can do no longer.  Jason DaSilva is a documentarian, diagnosed at a tender age with multiple sclerosis.  He looks like a ten year old with facial hair, a babe in the woods.

Jason does not just battle MS.  He cohabitates with primary progressive MS, virulent and virtually unstoppable.  His slide starts fast.  The condition moves quickly.  The young man moves from cane to walker to scooter with breathtaking speed, almost as if the movie is being speeded up.

The film is about the evolution of approach and attitude, not just the toll on his body.  When I Walk should be spoken in the past tense.  DaSilva leaves his feet stunningly rapidly, presumably never to return.  That is a mighty blow.  Where he travels from there is a telling journey.  The battle moves from his spine to his head.  The skirmishes north of the neck become high drama.

Jason struggles to keep making films.  He travels to places he has visited.  In his head, he watches old films in preparation for new ones he sees in his mind’s eye and will not complete.  Shooting from a sitting position and a new definition of mobility are roadblocks.  His return to India is heartbreaking.

Jason’s struggle is tougher than mine, though there really is no hierarchy of suffering.  I battle secondary progressive MS.   These categories of MS are distinctions without a difference for the chronically healthy.  We all look alike.  But we travel different highways, some hillier and more treacherous than others.  Jason is lost and struggles to find himself.  His mother dishes out tough love so vehemently she either keeps Jason leaning forward or just needs a good smack.

The professional world presents endless challenges for the disabled.  Too often, employers see us as damaged goods.  Given the chance, we become good employees because we work so hard to prove ourselves, demonstrating we can still do it.  Frankly, we are struggling with ourselves to convince the guy in the mirror that we still have the magic.

The social marketplace is tough and requires two extraordinary individuals to make it work.  Jason and his girlfriend Alice share highly personal moments with us.  Alice does not live in Fantasyland.  She expresses her doubts and fears openly, eyes wide open and fully aware that as Jason can do less for himself, she must do more.  Her role as caregiver becomes fulltime work.  They are grownups beyond their years.

Their commitment to each other seems to know no bounds.  When I Walk is a movie worth seeing.  The film is less a treatment of MS than the story of a young couple facing challenges they did not invent and finding their way to happiness.  Too many of us choose to be victims.  Jason and Alice point us to a better way.

Where are you, Teri Garr?

Where are you, Teri Garr?  I know you are out there somewhere.  You make me laugh.  Belly laughs still echo in my head.  You are talented, Teri, but more important; your sense of humor never seems to suffer.  You have jousted with MS with grace and humor.

We have sat together at dinners and on television programs.  Always a treat.   Giggling or throwing back your head to let go is a valuable coping device.  I know you get it.  I have often quoted you on MS, that multiple sclerosis is “a scum sucking pig of a disease.”  That is as accurate as anything we will discover in a medical journal.

I have often stolen that line, with attribution, of course.   The thought is irreverent and a bit defiant, a way to raise your middle finger and get away with it.  You have never played the role of victim.  I admire that.  The self-serious sick are boring.

So where are you?  The phone just rings off the hook.  I suppose you may be on a job somewhere.  Maybe you are far away, shooting a movie.  I hope you still are working.    I do worry that you are sitting there, alone and silent, pushing others in your life away.    I have been there.  The phone rings.  I am by myself and do not move.

When the spirit suffers, the sick often withdraw and hide.  If we wonder who is calling, we make no move toward the sound.  We isolate ourselves because we just do not want to engage.  That idiosyncrasy is hard to explain to the chronically healthy.

I will try.  When I feel bad about myself, my life and body, I know how vulnerable I become.  I cannot cry alone, and I will not tempt fate by withstanding sympathy from others.  I detest sympathy.  So I just step away and go deep inside myself, into my cave.  And I am safe.

I retreat when my walking weakens, if I am dropping whatever may be in my hands, when my memory falters.  Ya da Ya da.  Sometimes I just do not feel right, physically or emotionally, and I pull the ripcord.  It is not that I am embarrassed.  I am past that.  I just do not want to be on display or explain.  Do not Disturb, the sign reads.  Leave me alone.

I just want to be by myself.  No crime there.  No wife.  No kids.  Just me.  They get it.  This is self-indulgence, at its best or worst or neither, I recognize.  But is it a problem?  I suppose that depends on how long the solitary state is maintained and, of course, who you ask.

Families should know each other and understand if not anticipate behavior patterns, foibles, flaws, whatever.  There are many ways to get through a life of sickness.  And there are eight million stories in the naked city.  This has been one, and the cement is dry. 

Taking charge

Yo.  Hit Pause.  For those of you who know sickness or are about to, for you out there in cyberspace who have family, friends or neighbors or folks you hardly know dealing with disease, allow me to pose a question.  The answer will be revealing and offer plenty of food for thought.  You will be stuffed.

When times are tough, most of you are passive patients. You put your futures in the hands of doctors with their own agendas.  Too many do what is good for them.  Are you and all the others going to sit back in your most comfortable chairs, the ones with a place to stick your drinks within arm’s reach, and know you have dumped your medical mess in a stranger’s lap?

Not me, brother.  No way, sister.  That lazy approach is a high risk method of restoring health.  Will you be saying to anyone who will listen, it is his problem now or up to her?  If you choose this passive path you are out of your freaking mind.  Too many of us do exactly that and live to regret it later.  Or not.

We show more care shopping for cars and sound systems, invest more time comparing other consumer items than we do for finding doctors to guard our bodies.  That is short sighted enough when we are healthy.  All of us are playing at the same table, and gambling with our lives makes no sense.  When luck ebbs and runs dry, suddenly it is not a game.

Okay, you are sick.  Decision time approaches with lightning speed.  You have been knocked down.  What are you going to do?  Are you going to get involved, be proactive and learn about what ails you?  Will you think for yourself and become your physician’s partner?  You can help make choices or turn to the nearest angel in white and say, cure me.  Just don’t get me involved.

Everything has to be easy.  And quick.  No muss, no fuss.  A treatment cannot hurt.  No mas.  Your comfort zone must remain comfortable.  Well, buddy boy, that is not how it works. Take the field.  Join the team.  You do own it.

A friend was diagnosed with gastric cancer and told his days were numbered.  I received an email from him asking me to call him at a hospital in Maine.  His doctor had told him he was dying and advised him to go into hospice care.  My friend regretted he would not see New York again.  Defeat came softly across a hundred miles of telephone wire.

A week later he was back in New York with his old oncologist.  He was enrolled in a new clinical trial.   He had taken control and bought more time.  “Every day is a victory,” he told me.  When the hourglass was empty, he left with the satisfaction of having spent more days with his wife, daughter and grandson.

I never have been one to do what I am told.  That has kept me in water too hot for comfort.  Sometimes taking charge keeps a head above the water.  It is easier to breathe up there.

A new hope

The challenge for those living with chronic conditions is to learn as we live and work with our doctors to identify therapies that will help us and ease whatever pain.  Too frequently a patient discovers an ammunition shortage–leaving him or her with no end game, hardly a surprise because there is no end.  These are incurable illnesses.

When Meredith and I attended an adult stem cell conference at the Vatican, we knew little of what to expect.  Now anyone who can read is aware that there is a never ending controversy about the use of embryonic stem cells in research.  The link to the abortion issue is too close for comfort among many Catholics and conservatives.

It seems that most research today uses adult stem cells.  Hence the Vatican conference and the Church’s interest in moving beyond the anger.  Then I learned that a lot of stem cell work is done with autologous cells.  That means the patient’s own stem cells.  Who can argue with that?

So there we were in the middle of Rome, in good cheer and eating good food.  Each day could be taken at face value, with no agendas in play, only the full potential of an emerging therapeutic modality.  I let down my guard, and my mind opened.  And so, I was receptive to all I was hearing from eminent scientists from around the world.

I was blown away.  Not only are diseases being treated with stem cell therapy, organs are being grown in labs.  And nobody claims it is morally wrong.  The research was credible, the stories stunning.  And this was now.  Today.

I chaired the panel on autoimmune diseases.  We focused on multiple sclerosis.  I described the patient experience and played traffic cop for the other panel discussions.    There were doctors and patients telling their stories.  One presenter was Dr. Saud Sadiq, an MS specialist from New York.  Much of my presentation had centered on hope, how difficult it is for patients to discover and sustain it.  I also spoke of the loneliness of illness, no matter how loving our families and friends.

Dr. Sadiq quoted my words frequently in his presentation.  He demonstrated how tuned in to patients he is, which is his reputation.  He met Meredith and our grown children who were at the Vatican to discuss growing up in a house with chronic sickness.  They spoke at a lunch and certainly earned their supper:

We spent a week in Rome.  My head was swimming with possibility.  Conventional therapies had failed me for decades.  Optimism and hope were alien concepts.  Something inside me was simmering, on a very low boil on the rear of the stove.  The sensation was unfamiliar.

It seemed a stretch to relate all I had shared to myself and the losing battle I was waging against a progressive neurodegenerative disease.  I played with fantasy, a game too dangerous to play in the past.  It was all understated.  But it was there.  The genie was out of the bottle.  I felt no ambivalence.

I ran into Dr. Sadiq as we left the goodbye dinner.  He smiled and said, “Come see me when we get back to New York.”

Chronically on our own

This blog is about me, except it is about you. Everyone says that, I know.   People do relate to being sick.  I have MS.  You have whatever.  Or your spouse or a kid does, a close friend or neighbor.  Who speaks for us?  Not me, friend.  I was not elected.  So we have to speak for ourselves.

A life battling a serious chronic illness becomes a slog through treacherous terrain, hell with no hope.  These chronic conditions are incurable and tough to treat.  This illness, heart disease, diabetes, mental illness, etc., guarantee pain and suffering.  What I am trying to say is, being sick sucks.

Permit me to offer a short primer.  Five years ago, 90 million Americans lived with a chronic condition.  Now, more than 133 million of us do.  Staggering, huh?  Aging baby boomers are the problem.  And the population only gets older.  75 cents of the healthcare dollar pays for chronic care.

Get it?  Republicans don’t.  Long term care is hugely expensive.  And these are not just statistics.  They are real people.  Us,  Our parents.  Aunt Margaret, you know, the one with bad breath.  Who is going to pay for all this?  The GOP cannot stand that footing the nation’s medical bills will be no picnic, and it has to happen.

My forty years of dancing with MS have been no picnic.  Two bouts of colon cancer were icing on the cake.  I have a good life.  My advice to those living under the same life sentence is, get used to it.  Own it, and find your own good life.  It is out there.

Over the years, I have lost vision, mobility, use of arms and hands.  Then there is cognitive function.  My pal Teri Garr, one of the funnier folks on the planet , refers to her MS as, “a scum sucking pig of a disease.”  But what do you really think, Teri?

These conditions all are sucky.  They are different and hit different parts of the body in various ways.  What about the emotional fallout?  The coping issues that go with chronic illnesses are remarkably similar.  They bring practical problems and change how we see ourselves.  We are going to share thoughts about that.

I plan to track my experiences with harsh chronic illnesses on this blog.  I am not special.  My difficulties probably are no greater than another’s, but I write and share.  I am willing to share with others.  Sharing is important.

When cancer came, and MS did not take kindly to the competition, I wrote a series of essays about the dueling diseases for the Science Times section of The New York Times.  My editor told me I had a large following because I had no M.D. after my name, referring to the many doctors who write for them.

Screw the docs.  Patients want to hear from each other.  We want to know what it it was like.  How did you get through it?  I already know to take Vitamin D and wash my hands after I use the bathroom.  So I do not read the docs.

I want to hear from you.  Honest.  I am a patient, too, making it up as I go along.  We really do have a lot to tell each other.  And think of the doctors and hospitals we can trash.  This will be great.  Think of the therapy bills it will save.