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.

11 Responses to A Dangerous Game

  1. Nancy Cincotta December 4, 2013 at 6:26 pm #

    Please show hope. I’m counting on the rescue of stem cell therapy. I can’t wait for the chance to partake in a trial. Good Luck!

    • Richard December 4, 2013 at 8:46 pm #

      I am trying. Honest.

      R.

    • Ella December 14, 2013 at 1:15 pm #

      Richard, you do have hope as you move forward to the stem cell clinical trial that so many of us can only dream about never mind hope. Stay positive and embrace all that is available and within your reach.. you give me hope.

  2. Nancy Cincotta December 4, 2013 at 6:29 pm #

    Please show hope, it’s my last thread of hope for this disease being cured.

  3. Molly December 8, 2013 at 1:07 pm #

    We’re so grateful for you. My partner and I are listening to “Blindsided” on audible. I, having been (finally) recently diagnosed am laughing. Yours is the first voice I’ve heard and can relate. As far as we’re concerned, you can be anything – hope/no hope/ambiguous w/ stem cell- we’re just so glad you’re here. Maybe I’m seasoned from Lupus- 1994. No treatment/No cure, no clue. I’ve learned that just knowing one other person is on the path, is enough. It’s more than enough- to look out there, nod, maybe have a cool 2 finger tap on the shoulder. I’ll be reading weekly. Thank you for your voice and for being in the world Richard. Am off to give the new treadmill a go after 7 mos confined to bed. I’m ignoring the flash of my attempt looking like an audition for a new “Jackass” movie. 🙂 Mol

    • Richard December 11, 2013 at 7:45 am #

      Good luck to you. Sounds as if your spirits soar.

      Best,
      R.

  4. Longhaulpaul December 14, 2013 at 6:51 am #

    Thank you for your many years of publicizing your personal enduring battle, you have given us newcomers to this club frank knowledge and truth. Positive thoughts, prayers and probability will prevail.

    You will be in my thoughts as I continue my journey of riding one million miles for MS.

    Longhaulpaul

    • Beth December 16, 2013 at 6:19 pm #

      You are an inspiration! I hope you see some improvements in the future. Sending you prayers. Hope to read more insight in your blog. Take care.

    • Richard M. Cohen December 26, 2013 at 9:02 pm #

      We are in this together.

      Bestr,
      R.

  5. Lew Chapman December 20, 2013 at 11:41 am #

    Richard, Your book was the first MS literature I ever read (the one with you on the front with your cane and “a reluctant memoir” in the title). I very much enjoyed it but MS was still not affecting me much yet. Fast forward 13 years later and I’m now SP yada, yada, yada. At any rate, you speak what I think in this passage – “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”

    I was one of the guinea pigs out at Stanford during the CCSVI initiation. I received some symptom relief, which made me think I might be getting “better”, and I allowed my mind to go where I was thinking about getting healthy again, what I would do, how I would love and laugh and everything differently. But alas it was only symptom relief in those areas that were adversely affected by the CCSVI in the first place.

    So now I have tested positive for borriella (lyme) and I haven’t once said, or really even meant, “I hope this works, that’d be awesome!” My expectations are nil and I will only react when it is unavoidable to conclude that there is actually something happening. I just love that whole post and it really has helped me articulate better how I’m feeling through this latest round of ‘the FDA stuff isn’t going to fix me so I better work on this myself’.

    Much love to you and yours as you really introduced me to MS and a window into what I would eventually be dealing with in a very human way. My next book was “Man’s search for Meaning” by Viktor Frankl and that’s where I really learned about the power of hope. Hope is our manna and when I have it it’s the only time I allow myself to think forward, about tomorrow if you will. But you’re right, finding hope once you’ve resigned yourself to your diminished self and that it’s not going away is a very challenging thing. It’s so much easier to keep your head up when there is something to hope for. May we never give up looking for some relief, that’s the only thing that keeps me going. Simply following a normal neurologists’ rote is getting no one anywhere! God bless and Merry Xmas to you and the family. I still remember like it was yesterday relating to the fear and defeat you must have felt that day on the subway with Ben, that really hit home with me at the time.

    • Richard M. Cohen December 26, 2013 at 9:07 pm #

      Good luck on your journey.

      Best,
      R.