Archive | JOURNEYMAN

Peeing Down Under

My ideas get goofy sometimes.  Plenty of evidence of that.  Last night, I had dinner with a couple of old friends.  We were fighting yesterday’s wars and not drinking water.  Alcohol only stimulates a bladder already confused by MS, the gift that keeps on giving.  I had never eaten at this place and did not know my way around.  I grabbed my cane to head toward the back of the restaurant, where I assumed the facilities were.   I discovered what I always hope to avoid.  There was the dreaded steep stairway down.

My descent was slow and cautious.  I felt I was on a ladder with steps.  God bless handrails.  The slow speed of my trek was made more exciting by the urgency to reach my destination.  I have yet to lose that race but have come close to a tie.  Relief was tempered by anticipation of the climb back north.

I got back to the table, glancing at my wine glass, still not quite empty.   I was not even tempted.  Two round trips were not gaining entry to my future.  I said to my companions, I am going to put together a short guide to identifying eating and drinking establishments where restrooms are located on the same floor as the tables.  Meredith suggested finding places without stairs to gain entry from the street.

As with any city, New York has an army of older and disabled residents and visitors who would appreciate any guidance they can get.  Ours is an old city full of dungeon bathrooms in public places.  The Americans with Disabilities Act exempts public structures that predate the legislation.  That means a huge group of restaurants are free to stick restrooms twenty-six feet under.

My only question is how I am going to identify these businesses spread all over New York City.  I don’t see taking my cane and hobbling around five boroughs, much as I would like to do that in the freezing cold.    This is going to be a challenge.  Anyone have any ideas?  By the way, you are welcome to steal the idea of writing this short book.  I would rather read than write it.

GetOver it

 

Here I am at my hypocritical best.  You have the disease.  You lost the lottery.  Get over it.  Children are starving all over the third world.  You probably have food in your stomach and a roof over your head.  Deal with the disease.  Accept what is, because it is not going to change.  Those with any debilitating chronic illness, not only MS, should ignore this advice.

I accept nothing and urge you to do the same.  I am not at peace with my condition.  I live in a state of siege.  My father was a physician who made it to ninety co-existing with MS.  When he had to retire too early, he accepted it, almost embracing sad reality.  “I am not angry,” he would tell me.  “What is, is.”  I would just silently stare at him, keeping my counsel.  I walk around pissed off, doughboy helmet perched on my head, bayonet fixed.  I look ridiculous.

Years ago, I never failed to notice that a week could pass without a single thought of my illness.  Yes, these were healthier years.  I spent a decade at CBS News covering news around the world, and when I was ducking bullets in Beirut or diving under old trucks  to avoid gunfire in El Salvador, I had no time for thoughts of serious sickness.  I came home, and the MS moved in, refusing to leave.  I attempted to continue ignoring the predator, but I could not insult the invader.  It just hung around and made life miserable.

Is it good to accept?  My dad would say, yes.  I say, hell, no.  Accepting is waving the white flag of surrender.  I believe I must fight with whatever meager means at my disposalJoin the gym.  Go to physical therapy.  Push hard, then push again.  Tell yourself you are going to win.  And believe it.  My mentor of long ago was Fred Friendly, Murrow’s old partner at CBS News, with whom I studied at Columbia.  Fred would proudly declare, “I never went to college, but I could will things into being.”  He, alone, seemed to believe it, but it was his fuel for living.

State of mind is a significant factor in battling illness.  Few would disagree with that.  Piss and vinegar combine well.  Throw in a pinch of self-delusion.  Believe you are going to beat that which cannot be beaten.  Not to parrot Norman Vincent Peale, there really is power to positive thinking.  “Stand up to your obstacles,” he wrote, “and do something about them. You will find that they haven’t half the strength you think they have.”  Did I just quote Norman Vincent Peale?

That is okay, because the reverend was right.  Grab the bull by the tail and swing it around your head.  Of course you will get a hernia.  Sometimes I feel like Walter Mitty.  I know life is hard, but we do have to fight on  Or else just roll over and play dead.

 

 

 

 

Reading Reaction

That pictures speak louder than words may in fact be true.  The video of my bone marrow aspiration screamed, watch me.   Certainly it was  more interesting than anything I have to say.  Marrow was sucked from my breastbone because bone marrow and blood are a storehouse for viable stem cells.  Months ago, I did not know that and learned only as I traveled the stem cell highway.

I am reasonably certain most people have no idea how stem cell therapy is done, either .  The aspiration procedure appeared grim.  It was not.   Pressure and pain are very different.   We tend to think of stem cell therapy in future terms, unaware that increasingly  these space age medical procedures exist in the present tense.   Were folks drawn to the moving pictures to be horrified?  I confess that thought did occur to me.  It did not look like fun.

Actually, it was not fun, but was not horrible.

What individuals seem to have taken from the post is hope.  That is pretty cool.  Those who suffer serious sickness long for something to hold onto.  There can be a port in the storm of sickness.  The possibility that even while  being saddled with a chronic condition, health can improve brings a warm sunrise to a difficult life.  Illness drives optimism from the soul.  Rekindling the fires of that hope is difficult.

I love what people had to say.  From Sandy:  “Thank you for sharing your journey and battle. I am my husband’s caregiver and hope is desperately needed in battling this disease. He’s now in a wheelchair but continues to fight.”  I don’t want to sound self-serving.   This is not about me.

There is a palpable need loose in the land.    People face poverty and deprivation for which there is no broad agreement on how to fix a failing system.  That is sad.  The sick have our own needs.  Stem cell therapy is not a quick fix.  We are at the starting line, and it is too soon to draw conclusions about saving the sick.  But who can be against stem cell therapy?   I believe it is the future.

I am moved by ethe many expressions of hope.

 

 

The Great Stem Cell Caper

No.  That is not a corkscrew uncorking an expensive bottle of wine.  It is a medical device being screwed into my breastbone, creating a path for a hematologist, or blood doctor, to harvest bone marrow.  We videotaped the procedure because most of us, including me,  know little about the process of stem cell therapy.  But I am learning fast.

It all started in Rome, at the Vatican of all places.   Meredith and I participated in an adult stem cell conference.  I spoke and listened and learned, realizing cell therapy is not merely a future tense therapy.  The more I understood, the more I wanted in.  Cell therapy is the future. of medicine.

I am at the start of a new FDA approved, Phase One clinical trial for stem cell therapy for MS.  The sun has come out.  I am going to chronicle my stem cell journey on this blog, using original video and the written word.  For most of us, stem cell therapy is a mystery.

Stem cells are large, undifferentiated cells, meaning they are blank, ready to become whatever necessary to heal the body.  Stem cells can replicate any of the 210 cell types in the human body to supplement whatever function the other cells perform.  The stem cells here  will be autologous, meaning my own.  That lowers the risk considerably..

Bone marrow contains a rich trove of stem cells.  Marrow was extracted from my sternum in late August, in a procedure known as a bone marrow aspiration.  Meredith and a son Gabe videotaped the event for this blog.  The procedure looks more hideous than it is. The video is rated PG13.

The stem cells will be mysteriously processed for three months,  then infused into my spinal fluid.  They will become neural stem cells, cells of the central nervous system.  The cells will travel through the spinal fluid to my brain stem, where my lesions are.  In theory, the injured portion of my spinal column  will regain some function.  This has not been done much.  There are no guarantees.  I will believe anything when I see it.

My neurologist, Dr. Saud Sadiq, is a pioneer, confident but cautious.  He agrees with me that we both are explorers.  I like that.  It beats meandering down the beaten path.  People with threatening diseases cannot afford to be risk averse.  Inaction means simply giving in.   I take nothing for granted but am  guardedly hopeful.  Please stay tuned.

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.