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.

A blogger’s epiphany

Me, a blogger?  Not in this lifetime, I have said.  Blogs are self-indulgent, self-serving screeds, often irresponsible, frequently inaccurate, and commonly incendiary.  I think bloggers like to play with matches.  There is scant evidence that much money changes hands in the blogosphere, anyway, so what is the point?  Bloggers must love the sound of their own voices.

And yet, I have been imagining a blog in my future.  Go figure.  I took the bold step of actually checking out some blogs, searching for any that at least seemed serious.  Voila.  There were interesting sites and sounds.   I read Andrew Sullivan’s blog, for example.  I may not have agreed with much I took in, but I was impressed by his writing and reasoning.

I mentioned irresponsible or incendiary blogs.  Allow me to suggest a few more I words that seem to apply to many blogs: inane.  Irrelevant.  Idiotic, not to put too fine a point on it.  I consulted Dr. Google to identify the most common blog topics of 2013.  Wow.   The blogosphere sure seems oxygen deprived.

In no particular order, the topics commanding the most attention ranged from fashion to relationships, buying and selling to, of course, celebrities.  Not just a few of those.  Clearly, a blog is what you make it, a serious marketplace of ideas or an aspiring cash cow.

Precious few outlets exist for writers these days. We spend a lot of time wandering in the desert.  A.J. Liebling wrote, “freedom of the press belongs to those who own one.”  I do not, but a blog makes me an old fashioned pamphleteer.  A blog is a ticket to freedom of expression without some corporate cipher standing over me and deciding which way the wind is blowing and what sells.  I had enough of that in network news.

My new blog will not be sexy, though serious sounds pretty good.  I hope it will touch lives.  I plan to write about coping with chronic illness.  Please hear me out.   I have been there, and I care. This a s a subject that actually matters to regular people.

There is not a human being in this country who does not know serious sickness, if not staring out from the mirror, then in the family or among friends, neighbors and colleagues.  In five years, the number of us living with a chronic condition has grown from ninety million to almost 138 million.  That is an explosion.  Aging baby boomers have brought this on.

And you want to read about hairless dogs?

All of us are aging.  Eighty percent of Americans over 65 have a chronic illness.  These conditions are incurable and often last a lifetime.  Many cancers and heart conditions, diabetes and GI disorders fall into this group.  And the hits just keep on coming.

Diseases are all different, but the coping issues are remarkably similar.  Chronic illnesses attack our sense of self, our confidence in the future our very self-worth.    The psychological toll can be staggering.   These are the problems that dominate our lives as we grow older.  Our ailments have become the new cocktail party small talk.  And we can use this online space to share our experiences.

Screw the doctors.  Patients want to connect with each other.  We long to touch and be touched.  Sickness can be a solitary journey.  I have endured two bouts of colon cancer and battled multiple sclerosis for forty years.  I have been doctored to death.  I thrive at talking to my own kind.  Patients..  Real people who have walked in my shoes and have no M.D. after their names.

We are a community.  This blog can be our gathering place.  We will help each other over obstacles, take an arm or hand and tell another that he or she is not traveling alone.  Please Join me.  I plan to discuss more than sickness.  There is the press, though some might argue the two are redundant.  I spent decades in various newsrooms and have a lot to say.

We have plenty to talk about.

Journey Man

The shortest distance between points may be a straight line, but that map may not make for the most interesting journey. As I have danced my way across the years on three legs, the third with splinters and a rubber tip, I abandoned the linear path. Now limbs grow weak, but my spirit stays strong. I squint with damaged eyes, peering through fog covering the winding highway ahead. And I see more clearly.

Please join me on the road.