Chronic Revolution

Journey Man is viewed by many as a blog about living with multiple sclerosis, which was not my intention.  It just happened.   I set out to write about the chronic illness explosion in America and around the world.  MS of course is a chronic condition. Approximately 400 thousand Americans live with the disease.  When I wrote Strong at the Broken Places in 2008, 90 million Americans battled chronic diseases.  Now 133 million of us, nearly half the population, fight chronic illnesses.

As a nation, 75 percent of our health care dollars go to the treatment of chronic diseases.   That is what is breaking the healthcare system.  These are not abstract numbers. They are people: you and me, our parents and kids, friends and neighbors.  Politicians fix on numbers when he real crisis is with human beings.

The cause of the huge patient bulge is demographics, the culprits, aging baby boomers.   Eighty-five percent of individuals over sixty-five have a chronic illness, fifty percent have two.  Our national photograph is one of a nation of sickness.

One striking lesson of Strong at the Broken Places is that these chronic conditions, heart disease, some cancers, mental illnesses and many others, all are different.  They strike various parts of the body and affect many systems.  The coping issues that go with them, however, the practical problems and psychological fallout, are remarkably similar.  Many of us watch our own deterioration as spectators, feeling helpless and horrified.

The inevitability of physical decline is a sad fact of life. There is nothing anybody can do about it but endure the ride.  In fact, the train already has left the station for so many.    With chronic conditions, there is no endpoint.  These illnesses are incurable, and the script 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.  That is a fact.

Chronic conditions can be managed and lives sustained, but have no illusions.  The clock is ticking. My slide down seems to be picking up speed. I am trying to figure out how to deal with that.  I cannot change it.  The trick is to cope and move on.

We can live in that dream world of denial.   I have spent my fair share of time there.  Denial is the land of how we would like life to be.  Illness that cannot be controlled does not fit in there.  There are no Faustian bargains.  We hold no chips.

Our pride and self-worth, hope and faith in the future are at stake.  I hope these issues become the stuff of our conversations.  They certainly are the challenges individuals with MS face.  Our brothers and sisters who know other illnesses all too well share the same stake.  All of us serve in the same army.  We could start a revolution.

 

12 Responses to Chronic Revolution

  1. Mark February 2, 2014 at 9:26 am #

    Denial works for me, too. However, I have given up thoughts of getting better. Now I focus on not getting worse.

    • Richard M. Cohen February 2, 2014 at 9:52 am #

      Unfortunately, that is the best we can hop e for now. I look to the future.

      Best,
      R.

  2. Mimi February 2, 2014 at 11:18 am #

    If the patients in the Tisch trial experience a positive outcome, will more sufferers have the procedure available to them sooner rather than later?

    I’m no longer in denial. I’ve entered the panic mode.

    • Richard February 2, 2014 at 12:55 pm #

      Please do either. I assume the trial will succeed because only safety is in question. What happens next and when is unknown. Keep your ear to the ground. There are other places.

      R.

  3. Bill February 2, 2014 at 12:58 pm #

    I have a new level of hope this week with the powerful news of “STAP” (Stimulus-Triggered Acquisition of Pluripotency). Have you read about how this new stem cell discovery might be the “Game Changer” we have all be looking for? Blood cells that can be transformed into “Embryonic like stem cells” by placing the cells into a simple acid environment. Unlike embryonic stems cells, STAP cells come from your blood cells, but have the healing power of embryonic stem cells. Simple, cheap, powerful…Hope!

    • Richard February 2, 2014 at 3:11 pm #

      Read a little. Sounds too good to be true. Maybe it is.

      Best,
      R.

    • spiro spyratos February 5, 2014 at 4:12 pm #

      Sound promising, but a year away from human trials, much less Phase I/II/III and FDA approval. Looks like seven to ten years away.

  4. geof February 2, 2014 at 10:45 pm #

    If one were to look at and focus on all the diseases along with all the random ways we can die, I should think it impossible to live. I’ve lost friends who were healthy to random accidents and others who were sick for years. To some extent, we all, whether sick or healthy, have to live in denial. Father Time may be an old fart, but he’s still undefeated, even if we do occasionally block a jab.

    For some reason every time I begin to think about getting in a boxing ring with Father Time, I think of Ali’s “Float like a butterfly, sting like a bee.” Then I think of how broken Ali is now realizing butterflies are slow and even I squash bees that sting me.

    Given the multitudes of chronic illnesses, do you ever find yourself thinking MS just ages us a lot faster and gives us a broad name to describe our prematurely aging nervous system?

    • Richard February 3, 2014 at 10:39 am #

      Geof-

      I served on a council at the Harvard NeuroDiscovery Center for five years. Saw a lot of Alzheimmer’s, ALS, Parkinson’s and Huntington’s. Plus MS. Told the Dean of the Med School, I choose MS. How about pancreatic cancer? I believe seeing what is around us is a valuable coping device.

      R.

    • Richard February 3, 2014 at 10:42 am #

      Geof-

      I served on a council at the Harvard NeuroDiscovery Center for five years. Saw a lot of Alzheimmer’s, ALS, Parkinson’s and Huntington’s. Plus MS. Told the Dean of the Med School, I choose MS. How about pancreatic cancer? I believe seeing what is around us is a valuable coping device. MA is bad, but the others just may be worse.

      R.

      • Laurie February 4, 2014 at 3:10 am #

        Hi Richard,

        Thank you for serving on the council. Is it being to intrusive to ask if coping was discussed?

        Laurie

  5. Terri McMillen February 4, 2014 at 10:30 pm #

    Hi Richard,
    I was wondering if you had researched or considered any of the Stem Cell clinics abroad? My husband and I are looking for treatments for neuropathic pain from his spinal cord injury and we read so much about successful treatments for MS. I would love to read your thoughts about these clinics in general,
    Terri