Images of a Better Life

Sometimes a long awaited treatment can feel like the endgame.  It seems as if it is  the final act of the play when, in fact, the curtain just went up.  There can be a letdown when we repair home from the doctor’s office.  I spent virtually one year thinking and fantasizing, then waiting and preparing for the stem cell infusion that would lead me down the road to a better life.

There are no new roads visible in the neighborhood., just the same old streets we travel to routine destinations in our lives.   I do not expect the view from my window to change.  It occurs to me I never did project the visual image of a new life from the projector in my head.  Word pictures are dangerous.  Non verbal images are potent, too.

Expectations need not be verbalized or even made visually clear.  I have refused to lay out my hopes for stem cell induced change.  Expectations are a dangerous game, I have said.  The fuzzy photos of the mind can set up a person for disappointment as effectively as vivid descriptions of our dreams.

We who are giving over our bodies over to a clinical trial are playing a mind game, too.

 

35 Responses to Images of a Better Life

  1. Nancy Cincotta March 25, 2014 at 3:03 pm #

    Richard,
    I can only imagine (but very clearly) what you are feeling. The doors are opened and we are all waiting with you. Let’s continue to keep the dream alive.
    Nancy

    • Richard M. Cohen March 25, 2014 at 4:04 pm #

      Amen.

      R.

  2. Chris Weller March 25, 2014 at 6:21 pm #

    Positive thoughts can be powerful. It must be hard to tamp down the fantasies we could only dream of up until now. Believe fellow warrior

    • Richard M. Cohen March 25, 2014 at 8:20 pm #

      I believe you.

      Best,
      R.

  3. JerryD March 25, 2014 at 7:14 pm #

    We all need to find something to grasp onto when there is very little. Even if we are holding onto ‘dreams’. I prefer to feel and believe that ‘all is possible’. Keep on feeling positive. And writing.

    • Richard M. Cohen March 25, 2014 at 8:21 pm #

      I will

      Peace,
      R.

  4. Lori March 25, 2014 at 8:13 pm #

    It must be difficult…you have waited for this to finally happen…and now that it’s here…you are waiting again.
    Yes – a mind game indeed. Us on the outside looking in can’t even imagine what it must be like for you.
    Good things are going to happen!
    Stay strong, and hug your beautiful wife.

    • Richard M. Cohen March 25, 2014 at 8:23 pm #

      Lori-

      I hug her when she is around. Not often enough.

      R.

  5. Betty Moody March 25, 2014 at 9:36 pm #

    We are all hugging you Richard. The waiting will be hard. Believe that the months ahead will bring changes. They maybe just whispers to start, but in time we will all be shouting about it. Stay strong.

    • Richard M. Cohen March 26, 2014 at 7:12 am #

      Betty-

      I will settle for whispers. Every new procedure, drug or device benefits from improvement. I am pretty realistic.

      Peace,
      R.

  6. Annan March 25, 2014 at 10:53 pm #

    Thank you Richard- I am living with PPMS. I visited Tisch Center for first time last fall and enjoyed seeing the feature re the stem cell trial and you on Dr. Oz.

    Your courage and public experience helps people like me who struggle with feeling alone and hopeless, especially in the middle of the night. Of course, as you so eloquently say, your public life does not prevent you for doubt, fear and loneliness. We all travel this road alone in many ways, yet connecting helps and inspires.

    • Richard M. Cohen March 26, 2014 at 7:15 am #

      Annan-

      Amen. Be well and stay strong.

      Best,
      R.

  7. MB March 25, 2014 at 11:48 pm #

    Did you go through a series of routine MS assessments both physical and cognitive before starting the study? I was wondering because the stated objective of this trial is to determine if it’s safe. The Phase II is for efficacy. Maybe trials I and II merge?

    • Richard M. Cohen March 26, 2014 at 7:19 am #

      I did go through all kinds of tests. Safety is the primary agenda item for a phase one trial. No scientist is going to pass up the opportunity to turn us into lab rats and learn what they can.

      Best,
      R.

  8. Terri Weiss March 26, 2014 at 12:01 am #

    Got my date in May. At least by then, when we look out the window, we’ll see LEAVES!

    : )

    Hopefully we will cross physical paths someday!

    Until then, warm regards as always (pun intended!),
    Terri

    • Richard M. Cohen March 26, 2014 at 7:21 am #

      Ever seen May snow?
      I will look for you.

      Best,
      R.

  9. Geof March 26, 2014 at 10:07 am #

    I understand all too well the fear of disappointment, but what is to drive us forward if not hope for a better tomorrow? I know tomorrow may not look anything like we thought or hoped, but is that disappointment too high a price to pay for the definition of goals and hopes along the way?

    Yes, disappointment is a kick in the rump sometimes hard enough to send us flying… inevitably in the wrong direction.

    Still, there is a saying, “Those who fail to plan, plan for failure.” I want to work and love for decades, so for now continuing to work and love defines “success” for me in terms of rating how well my meds work. It is entirely possible I will wake tomorrow unable to see or think, and I will be disappointed, Until then, I can only enjoy the life my meds have allowed me to live and make plans to do what I hope will be enough to continue it.

    I was told not to have expectations for my medically fragile kids, but I soon learned they need expectations. It’s how they define themselves and their roles. They are the “smart, lucky kids.” Over time, I’ve come to realize even with an unpredictable disease like MS, I need expectations too. I may couch these expectations in terms like “hopes” and “dreams,” but they really are the marrow in the skeleton of my life. I find I need ways to define my life as good and lucky and a thousand other descriptors.

    I know MS and cancer have taken a lot of shots at you. Still, you are a standard bearer leading the charge, trying new meds we hope will be the new way. We all “hope” for your success. We may have an image in our heads what success will look like, but you will help set our expectations. Thank you, and I hope you continue to allow yourself some fantasies of what successful treatment would look like for you.

    • Matt March 26, 2014 at 11:07 am #

      Well said!!!

    • Richard M. Cohen March 26, 2014 at 10:36 pm #

      You are right. The fight must go on. I am not self-important enough to join the Officer’s club. We are an egalitarian army. Your battles are mine and the other way. Good luk to us all.

      Peace,
      R.

  10. Matt March 26, 2014 at 11:17 am #

    Today is my one year anniversary of my stem cell procedure. Although it was different than Richards, fat cells, I have come a long way from where I was! I am living proof that stem cells help remove some of the nasty beast preying on me. I will continue to hope because that is just part of life and becoming a better person. I did my procedure so that if my son has to go through, who turns 3 tomorrow, will have a fighting chance. Nothing gained is easy in life we all know this but if I can make it easier for some people then that is the ultimate goal!! Always hope and love!

    • Deb dehaan March 26, 2014 at 12:29 pm #

      How long before you saw positive resûlts,Matt ?

      • Matt March 26, 2014 at 12:51 pm #

        The next day vision was better but overall about 2 months I noticed a lot. I was running and moving without thinking about it. Lesion on spine is gone also. Still have brain lesions but that is why the trial that Richard had done is so important. The blood brain barrier is a tough cookie.

    • Richard M. Cohen March 26, 2014 at 10:38 pm #

      Matt-

      What a wonderful story.All roads lead to Rome.

      Peace,
      R.

      • Matt March 27, 2014 at 1:31 pm #

        You got that right and we will ALL get there together. Thanks for everything Richard!!! You do more for me than you will ever know.

  11. MB March 27, 2014 at 3:45 pm #

    I just read your tweet from today. Is anyone even guessing as to why you’re continuing to experiencie such a miserable allergic reaction? Being a lab rat is tough enough work without adding an extra element of physical discomfort to the process, not to mention you probably look like hell, too.

    Look at it as the storm before the calm. (People with a miserable chronic condition are free to alter idioms any way they see fit.)

  12. Lori March 27, 2014 at 5:30 pm #

    Was the drug (the one causing the allergic reaction) given to you as part of the Stem Cell trial? Or is it something you were taking anyway? Looks like you’ve had the reaction for couple weeks now….too long to be suffering like that. Is there nothing in the Doctor’s arsenal to help relieve symptoms?

    • Richard March 28, 2014 at 5:27 pm #

      Lori-

      The drug and reaction predate the stem cell infusion by a few weeks. And we have not figured it out yet.

      R.

  13. Matt March 28, 2014 at 8:01 am #

    Richard sorry to hear you not feeling well. Stay positive as hard as it may be. Good things are coming

  14. Esther Vasa March 28, 2014 at 1:10 pm #

    Richard:

    Directing my prayers and positive thoughts your way. Continue to fight with all your might, as you already are. Believing with you for your better health and improvements even though they may be very small in the beginning. Thank you for taking part in this clinical trial for all of us.

    Best,
    -Esther

    • Richard March 28, 2014 at 5:29 pm #

      Esther-

      It is a privilege.

      Best,
      R.

  15. Theresa March 28, 2014 at 11:02 pm #

    I hope that you find some relief from the allergic reaction soon, Richard. Is it any better?

    Take care,
    Theresa

    • Richard March 29, 2014 at 9:52 am #

      Nope. Maybe I should head for Lourdes.

      R.

  16. Christopher March 29, 2014 at 3:16 am #

    May you start feeling better very soon. Allergic reactions are awful. I know this feeling awful thing… just had to be hospitalized a day ago and now on five days of high dose steroids. This going back and forth is exhausting for anyone, even the mightiest of ubermensche. I hope… no, I pray for some relief for you sir and everyone else being bullied by this awful disease and any parallel health issues.

    • Richard March 29, 2014 at 9:54 am #

      C-

      Thanks. Sooner or later.

      R.

  17. Lori March 29, 2014 at 1:48 pm #

    Hoping things are improving for you and you feel better soon, Richard. Take care of yourself!