Archive | JOURNEYMAN

Setting the Record Straight

Recently I received an email from someone I had thought to be an old friend.  She is a doctor at a prominent children’s hospital in the Midwest.  She ripped into me for writing and talking on television about chronic conditions while she is faced with telling parents their child is going to die of terminal cancer.   I do not envy her that job, though she must think I am playing ping-pong.

To suggest the issue of chronic illness rests somewhere at the end of the line is preposterous.  Chronic conditions are reaching pandemic proportions in America.  These are incurable diseases, and as we are able to  live longer with them, Americans are breaking the health care system.

When I wrote my second book, Strong at the Broken Places, charting the lives of individuals with serious chronic diseases, I kept close tabs on the statistics.  In2008, according to the CDC, ninety million Americans had a chronic sickness.  Today, only five years later, 133 million Americans live with at least one chronic condition.  That is perilously close to half the population.  Here is what that means.

About seventy-five cents of the healthcare dollar goes to treat a chronic illness.  By 2020, the number of chronically sick citizens  is projected to grow to an estimated 157 million, with 81 million having multiple conditions.  Reduced to its simplest, we are screwed. Each year, 7 out of 10 deaths in the U.S. are due to chronic diseases. Heart disease, many  cancers and stroke.

Our fabulous politicians have reduced the issue to a numbing set of numbers.  When the healthcare issue was discussed and debated in presidential campaigns, the content seemed to come out of actuarial tables.  The human cost was largely ignored.  Policy wonks do not know from people.

Guess what?  This is all about you and me, our parents and children, friends and neighbors, cronies and colleagues.  That would be a lot of flesh and blood, not just numbers for Paul Ryan to throw around.  This is us, and I am not sure we know it.  We have to do something about this.  Now the administration wants to stay in Afghanistan beyond 2014, and resources keep getting thinner.  Let’s stop killing and begin saving lives.  If we leave that godforsaken place, we can afford to put medical research back on the map.  Our children and theirs will thank us when their lives are saved by what might not have been if we had not come home.

And to my friend in scrubs, I suggest you go back to medical school for a refresher course.

 

Fear Strikes Out

For those who read and reacted to my last blog post about pushing away fear, please allow me to clarify one point.  If you are laboring under the misapprehension that I have mastered the issue of fear, I have not.  A person cannot live with an illness carrying the possible outcomes MS carries with it and sleep soundly every night.  Not possible.  The challenge, I believe, is overcoming the paralysis of living scared and go on with life.

My father and his mother battled multiple sclerosis most of their lives.    Each was confined to a wheelchair at he end.  I see an old wheelchair quietly parked in a corner almost everywhere I wander.  Even in my dreams there are rolling chairs.  I I sound obsessed, I do not believe that is the case.  The image is indelible, but it cannot stop me.  There is too much to do.  Life goes on, even from a sitting position.  I will make it work, and so will you.

There was a center fielder for the Boston Red Sox in the late 1950s named Jimmy Piersall.  Piersall suffered from bipolar disorder when little was known about the sickness.  Jimmy was just “crazy.”  He got the right help, and his team gathered around him.  Jimmy Piersall beat the disorder and went back to his game.  He found the right help and had been open and honest, and heprevailed over his fears.  Hence the name of the book and movie about him, Fear Strikes Out.

I did not get where I am overnight.  For me, finding peace took decades.  We are running a marathon.  For Nancy, who imagines lying helplessly at the bottom of the shower, do something.  I installed  strong bars on the walls of my shower.  I have a seat that folds down.  Each has saved me on occasion.  This is what I mean about the paralysis of fear.  Prevent the accident before you are lying horizontally, gargling water ‘til you choke.

I still say FDR was right.  He sat in a wheelchair for so long  and understood the limited life.  I would say he made up for it

What would FDR Say?

A surprising number of comments on my blog posts refer to fear.    On falling, one person wrote,  “I forwarded the link to your blog to my close friend who also has MS and is too afraid to speak up about it as she fears she is going to loose more than just her health every day. Fear can be just as paralyzing.”

Huh?  How does speaking out threaten health?  And what does she mean by her fear of losing more than her health?  I do not want to  trivialize or make light of the concerns of any sick soul, but what is the deal?  Is the MS Mafia watching her house?   Speak out, my friend.  Words are therapeutic.  Express yourself and know the freedom that travels with thoughtful comments.

I am a big believer in counter-phobic behavior.  Do what you fear the most.  It will set you free.  I covered wars for the networks when I was legally blind.  Crazy, perhaps.  But the act was liberating.  If you are afraid of acknowledging your own MS, get over it.  You freaking have the disease.  Live with it. Take control.

FDR declared at his first inauguration. ““The only thing we have to fear is fear itself.”   Or, ‘”We have nothing to fear but fear itself’”  Depends on who you talk to. Ether version suggests that we should face our fears boldly and with courage, rather than  a wimpy whisper before them. We should not live in fear of our fears. We should master them, and not let them master us.

That is today’s free advice.  We are going out for pizza now, though I am afraid of get cheese stuck in my teeth.

 

 

Falling Together

My last blog about Falling proved what I too frequently forget.  Sometimes with a chronic condition we feel isolated, as if we are the only people with a nagging problem and suffering alone.  Falling is not the problem but the result of the problem.  It is not just MS.  Chronic conditions may be wildly different, but the situations patients face and the emotional fallout are remarkably similar.

Case in point: Consider Nancy Cincotta, who commented on my Post, To Fall:

“The falls have become intolerable. Yet there is nothing to do about it. Sad.”

Nancy may have MS, yes. Or she may have Parkinson’s. Perhaps she had a stoke. The precise problem is not the point. In this case, the resulting tumble is the debilitating issue. I am not a role model because I do it wrong. Falling is a part of our lives. I treat biting the dust as a grim fact of life. I gather my belongings and get helped to my feet, apologizing all the while as if I had done something wrong. Of course I call attention to myself in the process and make a big deal out of a minor incident. Why not spot a friendly face and ask for an arm? No explanation is required. People are friendly and happy to go out of they’re way, especially in New York. Why do we make such a big thing out of a minor spill? Why trumpet our condition? Let’s not play victim anymore than we have to.

Another option, of course, is to buy a bottle of cheap gin and pour it over our head.  Then we can blame the alcohol.  By the way, when I first used a cane, a neighbor approached Meredith to ask what was wrong.  Upon hearing it was MS, she expressed relief.  “We thought he was a n alcoholic.”  People are nosy, especially neighbors.Screw them.

 

 

To Fall

Fall is my favorite season, my least favorite activity.  Yet I cannot stop the drop down.  Generally, I do not  bite the dust like a tree, though usually there is someone around to hear it.  For me, the descent is strange, a slow motion collapse that cannot be stopped. My legs give out.   I grab onto a chair, towel rack, anything that seems sturdy and strong.  But I know the die is cast.   My legs can carry me nowhere.

I crumple, falling on top of myself.  My MS will not allow me to reposition my legs on time, to extend them away from my toppling body.  So I just fall on them, wherever they are, whatever position they are in.  Last night, I caught a knee is a vulnerable position, pinned down on a hard floor.  The pain was exquisite.  Remember Chester on Gunsmoke?  That’s me.  And Mr. Dillon is nowhere to be seen.  Where is a sheriff when you need one?

It used to be different, a graceful but public event.  I wrote about it in an online column for AARP: The Magazine:

 My body stretches forward in perfect flight, parallel to earth, with arms outstretched as if to grab the air. Launch has been involuntary, and the landing pad is a sidewalk or street, busy with pedestrians or vehicles on the move and unkind cracks that sent me flying in the first place.  Grace is gone, lost with a thud and a gasp, with personal effects that seem to tumble down gradually from space.

This is my life, Kitty Hawk revisited, primitive flight.  At least the Wright brothers had a goal, a dream to work toward.  All I want is to stay on earth, feet planted surely on the ground.  Illness has its own plan and the power of lift-off.  I cannot control the disease process overtaking me and choreographing my every misstep and crash landing.

The public humiliation got to me.  The incident always was humiliating.  But at least I could make my unnecessary apologies, dust myself off and move on.  Times have changed.  Falls seem to come at home, usually when I am alone.  I am not going to apologize to the dog, at least in this lifetime.  When Meredith calls often enough and no one answers, I know I can expect a friend or policeman to drop by.

I guess MS has improved my social life.  But at those times, I sure do want to be alone.

 

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.