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.