Revisiting Hope

My first stem cell infusion is fast  approaching.  This will be a stab in the back, an intrathecal pathway up the spinal column.  Preparation has been long and laborious, with tests and procedures and nurses filling forty-two vials with my blood every time I have been spotted in the neighborhood.  Deep  in the lab, my bone marrow is magically morphing into neural stem cells.  I am told the cells are ready.

So am I, though for what I am not certain.  Outcomes are undefined.  This is a journey with no map.   Are we looking at the new penicillin or a jelly donut?   A friend suggested I must feel strung out from great  expectations .  No, I thought.  I do not feel much of anything.  I feel numb, actually, my feelings seeming to run the gamut of emotions,  as Dorothy Parker once quipped, from A. to B.

The word, hope, has frequently been uttered by well-wishers and casual observers, in the form of questions or knowing affirmative statements.   They generally drew a smile and nod and well-crafted non-answer from me.  Fellow patients I ran  into in the neurologist’s office or readers following the story on this blog have been warm and generous, expressing  genuine best wishes.  I know I am clearing a path many want to travel.  I am lucky.

I am having trouble processing the word, hope, probably because I find the idea undefined and downright dangerous.  I have written about hope before, and I still do not understand.  To hope is to play the expectation game.  I know better than to go there.   Disappointment  just might be spelled, h-o-p-e.  How does one hope without the inevitable fantasy, the visual image of a life restored?

I would be a happy man if I could put the cane away or make out something, anything, in my path.  Not once has the fantasy filled the silver screen in my head.  My mind’s eye is a blank page.  Do I hope for those happy endings?  I do not think about them   Hope can be a subconscious longing, I suppose.  As I have said numerous times, I just do not go there.

Where is the intersection of hope and faith, and can one exist without the other?  I am not a believer, atheism I neither   flout nor camouflage.  Simply put, it is what it is.  Faith cannot be manufactured, yet many believe faith is a necessary ingredient of hope.  I will not be denied the right to hope, whatever my belief system or lack  thereof.  I believe in the human spirit.  Isn’t that enough?

Why am I arguing this?  This is not a trial.

I think probably I am afraid to hope.  I have survived a long series of disappointments in my adult life.   And I know the trs  of family and career, which have offered satisfaction in the fullness of time.  As with any contortionist, I am tied up in knots.

I know I am on the right road, wherever it leads.

36 Responses to Revisiting Hope

  1. James nielsen February 20, 2014 at 12:46 pm #

    I hear you. I’m scared to hope but I’m even more scared not to hope.

    • Matt February 20, 2014 at 9:03 pm #

      It is ok to hope! Like Tim Robbins in shawshank said hope is a GIGO thing! Besides where would any of us be without it? To hope is to live! I am a patient of stem cell and it has given me even more hope!

      • Matt February 21, 2014 at 12:13 pm #

        I mean good …. And good luck! It will be a good thing!!!

  2. Kyle February 20, 2014 at 1:55 pm #

    Being on the road is the important thing. “Hope” implies some sense of control over where the road will lead, as if you can somehow will the end of the road to be where you want it.

    You have may made some kind peace with where you are now. It’s unlikely that the transplant will result in a worsening of your current situation. There is some chance that it will improve it. If it does, great. If not…

    Kyle

    • Richard M. Cohen February 20, 2014 at 3:38 pm #

      Right. There is no downside.

      R.

  3. Lori February 20, 2014 at 7:26 pm #

    That’s ok if you don’t hope….I will hope, along with so many others….that is what we can do…you’re doing the hard work….you are offering yourself to the treatment…and it is so appreciated. Thank you for your contribution to finding a new treatment…and perhaps a cure…

    • Richard M. Cohen February 20, 2014 at 8:38 pm #

      Thanks. People like you make the journey doable. Thanks.

      R.

    • Richard M. Cohen February 20, 2014 at 8:39 pm #

      Lori-

      Thanks. People like you make the journey doable. Thanks.

      R.

  4. coco February 21, 2014 at 12:56 am #

    hope leaves space for disappointment so personally, I never use the word. you don’t have to have faith if your intentions are sincere .. I have seen power in my words and thoughts.. it’s not easy to aim high all the time but I refuse to give in to my rare disorder. Your spirit is very strong and I bet it will untie those knots! … Thank you mostly for the courage to share your feelings. Healing energy coming your way..

    • Richard M. Cohen February 21, 2014 at 8:24 pm #

      Thanks. I’ll take it.

      R.

  5. Christopher February 21, 2014 at 2:31 am #

    The edge of the diving board…

    Looking down there’s a lot of nothing between me and something else.

  6. Christopher February 21, 2014 at 2:40 am #

    I wish you well, sir. And that you find something sui generis out of your journey. If nothing else it should illuminate the corners where keys sometimes hide.

    • Richard M. Cohen February 21, 2014 at 8:26 pm #

      \Thank you. Who knows what lurks?

      R.

  7. Mark February 21, 2014 at 6:39 am #

    Thank you, Richard. Is hope the same thing as wish? I wish there were more people like you out there. As others have said above, you are doing the heavy lifting and this takes courage. We are very grateful. Besides, think of the material you will have for this blog!

    • Richard M. Cohen February 21, 2014 at 8:28 pm #

      I have often said of my physical travails, I got a good book out of the deal.

      Best,
      R.

      • Mark February 21, 2014 at 8:57 pm #

        Now that was funny and laughter is good medicine. Thank you! You may not believe…but I have enough belief for both of us. You are in my prayers. Keep the faith and focus on Ginger Baker’s best drum solo.

  8. MimiNOLA February 21, 2014 at 8:55 am #

    Richard, it must be awesome and hard to be carrying the hope of so many of us.

    • Richard M. Cohen February 21, 2014 at 8:29 pm #

      No. It is a privilege.

      Best,
      R.

  9. Matt February 21, 2014 at 12:17 pm #

    Like my aunt said before I had my stem cell procedure ” if it improves you 1% then it is a good thing” and it improved me a lot more than that!!!

    • Richard M. Cohen February 21, 2014 at 8:30 pm #

      Fabulous. I will carry that with me.

      R.

  10. Bill February 21, 2014 at 1:44 pm #

    “Faith is being sure of what we hope for and certain of what we do not see”. (Biblical verse) Maybe God has a plan for you that you are not even aware of? God knows you are a proficient communicator and maybe he is using you share your struggles and success’s. You are already providing guidance and hope for many suffering with chronic Illness and maybe, just maybe, your stem cell process will give you some healing and others can do the same and benefit from all of your years of struggle with this disease? …your children will certainly benefit…

    • Richard M. Cohen February 21, 2014 at 8:32 pm #

      I am thinking of the others.

      R.

  11. doreen February 21, 2014 at 9:50 pm #

    Do you realize that you are giving hope to all of those suffering with MS.
    Their prayers and well wishes are with you. There are many roads to cross during this journey. Sometimes you make a wrong turn but you get back on track again.
    You will reach your destination and then many will follow because you have shown
    them which way to go.
    We all have hope for you.
    Thanks for sharing

    • Richard M. Cohen February 22, 2014 at 9:05 am #

      D-

      We ALL MOVE FORWARD TOGETHER. THANKS.

      R.

  12. Debbie February 22, 2014 at 8:23 am #

    The hope is that others with MS will benefit from your courage and sacrifice. The hope is that you will find peace and joy even in your current health and life. The hope is this procedure brings you the knowledge that you have done all you can, and moves you to a good place both physically and mentally.

    The hope us in the fact that all if these people have chosen to take a moment and care that this works out positively for you.

    • Richard M. Cohen February 22, 2014 at 9:07 am #

      D-

      I hope you are right. Thank you for your suport.

      Best,
      R.

  13. Laura February 22, 2014 at 10:58 am #

    Thanks, Richard, for continuing the honest discussion and not allowing all hope to be placed where it might not be sustainable. I tend to squirrel away a tiny bit of hope, in case the big ones where I invest so much hope don’t materialize and I have something still in reserve. be well, Laura

    • Richard February 23, 2014 at 10:04 am #

      L-

      Good strategy.

      Best,
      R.

  14. Carla February 22, 2014 at 1:39 pm #

    I have an abundance of faith and hope that the upcoming steps on your journey will be victorious…Be Well Be Well Be Well!!

    • Laurie February 23, 2014 at 1:53 am #

      Hi Richard,

      Your contribution to medical research is greatly appreciated. Thank you for sharing the journey. Call it what you may-you are inspirational to me.

      With gratitude,
      Laurie

      • Richard February 23, 2014 at 10:07 am #

        Thanks.

        Best,
        R.

    • Richard February 23, 2014 at 10:05 am #

      C-

      Thanks. I need all I can get.

      Best,
      R.

  15. Terri Weiss February 25, 2014 at 3:21 am #

    Yay, I’m so excited! Let ME do the hoping for you, Richard – I totally understand the need to temper your emotions….

    Meanwhile, I’m waiting for my phone call, too, along with another date with Vampira drawing 42 more from me, etc… My cells aren’t ready yet, but I am!!! I’ve been ready for years (17, to be exact)!

    I’m keeping my fingers crossed for you, and for all of us!

    : )

    Best to you and yours as always,
    Terri

  16. SHARONPFEF February 27, 2014 at 1:51 pm #

    Richard,
    I believe I read that you have stopped taking regular MS drugs. I stopped taking the “walking drug” because it did not seem to do anything for me.
    Discontinued Avon to graduated to Tecfidera. Initial half dose made to sick. Full does nearly sent me to 911 for hospital. Not taking that now.

    Seeing my nerologist today to ask about You and stem cells. Will tell you what happens. Love to Meredith.

  17. Deb dehaan February 28, 2014 at 2:24 pm #

    How long dïd it take to see significant results after transplant? What about up until then?

  18. Joy March 11, 2014 at 10:51 am #

    Dear Richard,

    Thank you for pioneering this effort. I’m a second-generation victim. I’ve been at both ends of the spectrum–caregiver and needing care. I have faith and hope, and I will pray for you and all of us who are fighting to conquer this beast (whether you want me to or not).