Archive | JOURNEYMAN

A Dangerous Game

I have spent forty years dancing with a disease that knows no hope.  Doctors made that clear on diagnosis.  As the start of my stem cell clinical trial draws near, I cannot let go of my wonder at what to expect. My mind is wide open.   Sort of.

Stem cell therapy always had been about the future.    When we participated in a large adult stem cell conference at the Vatican in April, it became clear that there are stem cell therapies being offered now.  I am lucky to be part of a trial recently approved by the FDA.

But hope is a dangerous game.  Bleak expectations have ruled my life.  Faith in the future is fragile.  But now it exists.  If I allow it.  The jury is out.  Trust does not come easy.  Ask Charlie Brown if he ever managed to kick that football.

Mine long has been a crisis of spirit.  I had given up the fight against my status as a diminished man.  Do not fight battles that cannot ne won..  The task has been to keep my spirits up and anxiety down.  That was a slog.  Every instinct in me has resisted playing victim.  But what I would not put into words was clearly readable in my eyes.

The inevitability of physical decline has been a sad fact of life. There has been nothing anybody can do about it but endure the ride. With chronic conditions there is no necessary endpoint.  It is not just MS. Many other horrible chronic illnesses are loose in the land.   They are incurable, and the script of our lives has not yet been finished. 

And so we learn to live with ambiguity.  The ride is a descent of various angles and turns.  My rate of decline most certainly will not match my neighbor’s.  The speed varies.  But we do not get better, or so we have been told.  Until now.

Am I to believe my health will improve?  I cannot go there.  I am not ready.  Maybe it will.  Maybe not.  My history has taught me well, that there only is disappointment and more disappointment.  But somewhere inside, I do want to believe that all things are possible, and giving up hope leads to no answer, either.

Season of Hope

How ironic that a holiday ends in tragedy with a train careening out of control outside New York. In my mind, the holiday season begins with Thanksgiving. Holidays bring a season of hope, now tempered by the recognition of loss.  How sad that the two coexist.   

Our final visit with my father had been in the midst of winter festivities, and then he was gone.  I cannot stop myself from taking stock of my own deterioration in these moments.  I am not in great  shape, yet 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 no longer drive or walk more than a block, read voluminously or cook.  That is sad. But 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 died 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.

Happy Holidays.

 

Who am I?

 

When battling a chronic illness occupies the better part of a lifetime, it is tempting, though a trap, to use health issues as the focal point to focus the camera on your own life.  What do you do?  Oh, I have multiple sclerosis. But what do you do?  I have MS.  That’s a fulltime job, pal.  For the many who feel doctored to death, it sure does feel that way.  The idea that we are trading in a broader identity can be lost.  Pity.  We can lose sight of who we really are.

I am the husband of a beautiful, successful woman.  Our identities have merged, and we take from each other.  Our bodies, too, have come together, and we have given to the other.   Who are you?  A guy with MS.  Perhaps I am missing something here

Who am I? you ask.  Well, a father, I say.  I have three who are young adults.  The oldest works in Shanghai.   He works building nuclear power plants and is fluent in Mandarin.  His brother is a television reporter in Spokane, his sister studying in Prague now.  If you ask them who I am, they will say a New York Times best selling author or simply a pain in the ass.  I doubt the letters MS will cross their lips.

I, of course, do not lose sight of all I no longer can do.  Those limitations stare me down and wear me down.  I am less than I was and feel doctored to death.  People like me spend too many hours in ruts and no longer see ourselves for who we really are.

I am legally blind, having endured too many bouts of optic neuritis, which steals vision from many in broad daylight.  Also, I am blind in a more far reaching way.  No longer do I see myself for what I am.  I am a captive of loss and can only see what is missing.  What is intact and still there is around the bend, out of sight and sadly beyond memory.  Another connection broken.

A Peace Diviodend

A Peace Dividend

Reprinted frm my column for AARP: The Magazine on

The occasion of the Obama proposal to keep troops in

Afghanistan beyond 2014.

 

Our imaginations fly to airplanes and crowded subways or any possible urban targets we are spending billions to protect.   Americans watch if not wait for something dreadful to happen.   That is a sad fact of life.  Talk of terrorism floods our lives as our search for security may be permanent. Clearly, that is necessary, though our national obsession  has pushed us to make bad choices.

The American military commitment in Afghanistan makes no sense.  Osama bin Laden was hiding in Pakistan, the American born terrorist Anwar al-Awlaki eliminated in Yemen.  We are not fighting countries, just freelance terrorists.  I am a citizen living with a chronic illness, a club whose members represent virtually half the population,   Many are victims of  an enemy lose in the land, operating with stealth within our borders.

Diseases, organisms and infections come in the night to kill and wound without mercy.  Able bodied men are laid to waste.  Women and children perish. Carnage is arbitrary.  This is terrorism by any definition.   These terrible conditions are cruel.  And we are doing precious little to protect ourselves.

The military budget is sucking up funds once intended for medical research.  The NIH budget for the vital work of this research stands at about #30 billion.    Sound like a lot of money? It is the equivalent of what we spend in Afghanistan alone every two and a half months.  Throw in what we still are spending in Iraq on top of that.

Medical inflation drops the real value of the NIH budget to below the $29 billion, where that budget sat for years. The 105th Congress did vote to double the NIH budget in    1999 and  stood strong until 2003, but when we went to war in Iraq that year, those funds dried up.  If this  sounds like the old guns and butter argument, amend that to read guns and human life.  That is what medical research is all about, protecting our lives.  As time passes, the population ages and sickness rates only increase.

We are living in an era of discredited federal spending, as if any expenditures are poison or a ponzi scheme.  Dr. Elias Zerhouni, Pres. George W. Bush’s NIH chief , pointed out in 2006 that returns on medical research monies are a measurable net plus.  Spending $2.60 for every American each year  on strokes has lowered the death rate by 70% in the last thirty years.

An investment of about $3.70 per person over the same period for research on coronary disease has decreased the mortality rate by 63%.  And cancers, our national nightmare, are on the defensive.  “For the first time in recorded history,” Dr. Zerhouni wrote in an NIH bulletin, “ annual cancer deaths in the U.S. have fallen.  And  there are ten mil     lion cancer survivors.”  You cannot argue with success.

“In any given year, the number of NIH grants is limited not by promising scientific ideas, but by the amount of money appropriated by Congress,” according to Bradie Metheney, a journalist who frequently writes about NIH. “Today, only one in five talented researchers who submit grants to NIH will receive funding, a historic low. Budget constraints in Washington are leaving four out of every five of the best scientific ideas unfunded.”

That leaves a lot of great ideas floating into space.  But medical research is not on the national radar screen.  Americans are more concerned with jobs today than issues of war and peace or our national health.  It should be noted that as many as 300 thousand jobs are tied to the giant medical research apparatus at its current size.  Presumably, increasing the NIH budget would serve as its own stimulus package, even as it protects our collective health.

No reasonable and realistic person questions the wisdom of protecting national safety and security.  American public opinion, though, lines up against the war in Afghanistan.   A majority of Americans now see that war in Afghanistan as not worth fighting, and just a quarter say more U.S. troops should be sent to the country, according to a recent Washington Post-ABC News poll.

The life and death drama plays out in the villages and mountains of that far away place.  All of us need to realize that our health wars are fought in scientific laboratories at home.  And many here are casualties of our questionable wars because there are scant resources left to do the vital work of research.  Our priorities are very wrong.

 

 

 

 

 

Suffering a Setback

I am in trouble.

The seriously sick cruise along ignoring our sleeping limbs and body parts that ought to be in the shop for repairs.  What else can we do?  I stopped beating my breast when the bruises were too sensitive to look at, never mind touch.  I tell myself this should be the end of it.  No more.  Even Jean Valjean  was released from bondage, his sentence served, at least temporarily.  Now I am back in the slammer, as it were, unable to use my arms and hands normally, even to walk more than a short distance.  This is going to make an escape difficult.

Shit.  Here we go again.

Forty years of this.  I never get used to it because I fool myself into believing it will end.  Progressive diseases progress, as I am fond of saying, and these episodes will not end until I do.  Uncertainty is an ugly bedfellow.  We know trouble is out there, lurking in the shadows.  Problems are inevitable.  Why am I so surprised?  We cannot beat the reaper.

Meredith wants to buy a portable wheelchair.  “I cannot hold your weight,” she tells me again and again. I realize how hard this is on her, and I know she is right.  I cannot bear the thought of that chair.  I have written about fear in previous blog posts.   My father and grandmother completed their time on earth in those contraptions.  Their ghosts sit in some forgotten corner.

And I have to move on.  I know that.  Tomorrow I will start three consecutive days of IV steroid infusions, an anti-inflammatory that can tamp down an immune system on overdrive.    The steroids may calm my body, coaxing it back to where it was.  Or not.  A friend once advised me to develop my tolerance for ambiguity.  I still am working on that.

Whatever happens, the world will continue to revolve, and life will go on.  Who I am is in my head, not my shoes.  I need o be funny again.  My stream of consciousness needs to flow.  Friends need to go back to rolling their eyes when I speak.  Only then will I know things are okay.  Maybe this, too, shall pass.

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.