No Tears, Please

When I began writing this blog more than eight months ago, I expected my share of ugly responses.  People who bother to write generally are angry, I figured, and there is the inviting anonymity of the web, where anyone can breathe fire with no accountability.  Maybe that saves on therapy bills.

My prediction was wrong.  Of course.  Individuals have been thoughtful and kind.  I live with a woman who often thinks my real problem is that I am dealing with a loose screw.  Readers have spared me such critical comments, and Meredith just likes to jerk my chain.  I am uncomfortable, though, when readers thank me so hard and often.  The clot was a huge bump in the road, but no more than others have endured.

Please allow me to clarify a point.  I am not brave, and I am no hero.  As with most of us, I am but a survivor.  There is no red badge of courage.  There are no medals or merit badges handed out for coping with serious sickness.  Having a good life is its own reward. My participation in the stem cell clinical trial is not courageous.  It is a wonderful opportunity.  I understood the possible benefits.  It was a genuine no- brainer.

I am humbled by the rich history of individuals before me, who really did demonstrate bravery in far riskier trials.  “Of course, no clinical trial is one hundred percent safe,” according to a Discovery web site.   “ There always is a risk that the prescribed treatment may not work or even worse, that it can lead to serious health problems or even death.”

I had friends perish in NIH trials for cancer drugs.  They were terminally ill and understood the risks.  This stem cell clinical trials uses autologous (our own) cells and has a very different risk profile.  Meredith and I weighed the risks and went forward with no hesitation.  No heroes in this house.

I am just a goofy guy who puts one foot in front of the other each day and does the best he can.  I dare say that would describe just about all of us.  I have said many times that I am not a victim.  Well, neither am I a hero.  I grabbed an extraordinary opportunity to perhaps have a better life.  I will survive, I am sure.  Will I flourish?  I will let you know.

 

 

0

34 Responses to No Tears, Please

  1. Lori April 11, 2014 at 1:03 pm #

    Yes, Richard you are a survivor…but what makes you a hero is your ability to take on each medical challenge that you face with grace. Sure, you have your bad times, but you always bounce back with your humour and optimism – when you could resort to pulling the covers over your head and lay in bed all day. You are a role model for those others who are finding it difficult to face the daily challenges of their disease. Your humble ways are refreshing and you deserve the credit. Take it!!

    • Richard M. Cohen April 11, 2014 at 1:53 pm #

      Thanks. I will be under the bed if you are loo king for me.

      R.

  2. Lori April 11, 2014 at 3:27 pm #

    Remember while you’re under the bed to kick your legs and keep the blood circulating…lol 🙂

    • Richard M. Cohen April 11, 2014 at 8:59 pm #

      Got it.

  3. MB April 11, 2014 at 4:13 pm #

    Thanks for saying that. There are many brave people amongst us who are just trying to survive with some degree of dignity and grace. They put their best foot forward day to day trying to deal with an unrelenting progressive illness while trying to raise a family, work because they can’t afford not to, and maintain some type of life that doesn’t center around their disease 100% of the time.

    What you have done Richard was to give us a forum to express our concerns, frustrations and gratitude. It’s not that you’re a hero in the Superman sense of the word, but you’re a hero because you have used your celebrity (for lack of a better word) to give us all a voice that we wouldn’t have otherwise. You have appeared in the media telling not only your story, but all of our stories. For that alone, I can’t thank you enough.

    • Richard M. Cohen April 11, 2014 at 9:01 pm #

      As I always say, it is a privilege.

      R.

  4. Dave April 11, 2014 at 4:28 pm #

    Your story inspires me and you are very fortunate to be given the opportunity for the trial. I just turned 40 ….and two years ago I noticed my footdrop while running 3 miles. MRI revealed one solitary demyelination at the top of my spinal cord in the most critical funneling area under the brainstem. Have no other lesions and spinal taps / bloodwork all normal. Because of location of demyelination, impact on mobility is enormous because it mirrors PPMS. Now, can barely walk or move my hands… I am a Superintendent of Schools in Illinois with a beautiful wife and 6 year old twins. I have been to Barnes Hospital in St. Louis, Chicago Med, Mayo, Cleveland Clinic with no answers other than “we are sorry this happened to you and there is no cure to fix the demylenated spot…. so, with no other options, I am now heading to Tisch as a new patient this Monday and Tuesday with the hope that maybe your trial works and maybe by some miracle I can get help eventually. I don’t have any options left at this point before I can’t move at all… at least I can tell my kids that I have gone everywhere possible to save myself from this horric curse. I am praying for you and count your blessings everyday cause no matter how bad it gets, somene else always has it worse 🙂 I guess desperation makes you go anywhere, huh? At least now I can say I have seen NY!

    • Richard M. Cohen April 11, 2014 at 9:04 pm #

      Keep on truckin’,
      R.

    • Matt April 11, 2014 at 9:42 pm #

      Hang in there I had lession in same spot. Had stem cell procedure in florida and lession in now gone. Forever I hope but time will tell, so keep loving those twins and continue to move forward

      • Dave April 12, 2014 at 11:27 am #

        How and where in Florida did you get the treatment to fix the lesion?

  5. Jack Turan April 11, 2014 at 4:51 pm #

    Desperation is often the catalyst for what others characterize as heroic behavior. “Freedom’s just another word for nothin’ left to lose” (Me and Bobby McGee). We apply the hero label when we perceive that someone has acted to improve a situation in spite of the potential for devastating personal consequences. The recipient of the adulation doesn’t have to feel worthy of it. It is not your privilege to decide if you should be considered a hero, role model or an inspiration. These exist in the eyes of the beholder. So, keep on keeping on. And if people admire you, as I do, for doing it with apparent grace and dignity, you’ll just have to deal with it.

    • Richard M. Cohen April 11, 2014 at 9:05 pm #

      Fair enough.

      Peace,
      R.

  6. Kelly Cohen April 12, 2014 at 12:40 am #

    Your writing, apart from the difficult subject you are writing about, is so enjoyable to read and brings to life the life experiences you are sharing. I appreciate your openness and willingness to let others in, and especially the effort that you put in to continue to write, to do that which you are most passionate about. I also have multiple sclerosis and what you write–and that you write– is meaningful to me because of what you share in your writings ut also that you are writing.

    • Kelly Cohen April 12, 2014 at 12:45 am #

      Oh gosh, I’m sorry! What I wrote did not make much sense in reading it back. I’m basically trying to say that I appreciate your writing so openly about your experiences, and that your writing is wonderfully enjoyable as writing. And also that I find it an inspiration that you continue to do that which you are most passionate about in spite of the arduous effort you must make to do it.

      • Richard M. Cohen April 12, 2014 at 1:53 pm #

        K-

        Thanks. It is a privilege

        R.

  7. coco April 12, 2014 at 12:57 am #

    Richard, I believe we are all angry to some degree.. how can we not be with what has happened to us, with what we must endure? However, we are not angry at those who suffer because we are, sadly, in their shoes. I can’t imagine anyone being nasty to you on your blog because I figure the ones reading about you are doing so because of the shoe factor.. I know I am. We don’t always get our emotional needs met from those not in our shoes.. especially family, as much as they love us, or not. They don’t really ‘get it’. Yes, there is always someone worse off than we are but even that doesn’t always make us feel better when we are feeling low.. to say it mildly…

    We are all heroes when we wake up to see another day and all brave in our own ways and when someone looks at us with admiration and praises us for what we have accomplished, even if it was out of sheer desperation, we need to pat ourselves on the back because many of them do not have the strength to survive as well as we have. My friends both sick and healthy thank me for my positive attitude and passion (desperation) to keep going and are constantly amazed at my achievements..

    We have been humbled by our illnesses because we became one of the many sick/disabled people we used to see in our comings and goings throughout our lives… .. WE got the ‘opportunity’ to wear the other shoes…. what we do with that is the important part and being a role model/hero for others is inspiring to them and makes me feel even stronger. It’s hard to accept praise but we deserve it. So wear it with honor for the others…

    One of my favorite mantras during my illness has been “I am well and all is well with me, God (Universe/whomever) hears my words and makes them true!”.. Try it sometime… It’s not so much what you say as to your intentions.. Namaste’

    • Richard M. Cohen April 12, 2014 at 1:56 pm #

      Thanks.

      R.

  8. Amy Corcoran-Hunt April 12, 2014 at 11:26 am #

    I have PPMS, first thing I did, weeks after diagnosis, was get myself into fingolimid trial. It’s what you do. Give stuff a whirl. Good for you for the stem cell trial. I’d do it in a split second. (Got the damn placebo in my trial, don’t ask me how I know, state secret.) Much luck to you is much luck to us all.

    • Richard M. Cohen April 12, 2014 at 1:58 pm #

      Amy-

      I think there are ethical questions about placebos and randomized trials. I would love to debate that one.

      Best,
      R.

      • Amy Corcoran-Hunt April 12, 2014 at 10:22 pm #

        Nobody broke any rules or confidences. I dropped the trial. And had a blood test that let them make a decent guess.

  9. David April 12, 2014 at 3:00 pm #

    I agree and disagree with you. I think you are brave and I think everyone that reaches out to you is too.We must be little brave to survive.

    We did not choose this horrible disease , does anyone choose a disease that takes so much away?, of course not.

    A friend of mine recently said to me, you got a bad break and you are handling it the best you can.

    Thats what I think of you , Richard,and part of that best you can just might bring some hope for your extended group of Friends on this site.

    I guess my greatest wish for all is that we become reluctant heroes for each other.
    Now that’s a positive way to look at things!

    Keep your eyes on the prize!

    I am wishing you all good things!

    • Richard M. Cohen April 12, 2014 at 8:15 pm #

      You are right. We are a community, stronger together. No heroes. Only survivors. We help each other help ourselves, what I have been trying to say in my clumsy way.

      Best,
      R.

  10. Betty Moody April 12, 2014 at 9:41 pm #

    I stand taller, and try harder everyday because of you all.
    Richard, thank you for this blog; for reaching beyond, for sharing, and for bringing us together.

    • Richard M. Cohen April 13, 2014 at 8:41 am #

      B-

      A privilege.

      R.

  11. Laura April 14, 2014 at 7:53 am #

    Funny how at times those kind words can make us more uncomfortable than this miserable disease. There are so many quiet heros on so many fronts these days, and not just in the MS community, and it helps us to be reminded of that by you and the others who say enough with the singling out. We are all doing what we gotta do to get by and it’s terrific of you to allow us to come along on your journey – it helps to know we are not alone regardless of which path we are traveling. I appreciate the openness of everyone who is out there sharing their experiences for others to read.

    good luck with the clot- I’ve had the PE, too, and it comes as quite a surprise/shock when it happens.

    be well, Laura

    • Richard April 14, 2014 at 8:41 am #

      Laura-

      None of us is alone. We re a community, and in unity there is strength. I am proud to stand with all who live with chronic illnesses. We have a lot in common.

      Best,
      R.

  12. Kyle April 14, 2014 at 11:35 am #

    This makes sense to me. 26 years ago I quit drinking. It was not something I wanted to do, rather it was something I had to do, if I wanted to continue being a part of my family. To this day I can’t quite understand when people congratulate me. In my head fixing a flaw not an act of bravery worthy of congratulations. I didn’t realistically have any alternative.

    Kyle

    • Richard April 14, 2014 at 8:04 pm #

      Kyle-

      You are right. We do what we have to. We are survivors. We are not heroes. But good luck explaining that to others. I think people need to find heroes, a quirk of our culture. Maybe we should just let that be.

      Best,
      R.

      • MB April 15, 2014 at 7:07 am #

        Then I call dibs on Wonder Woman. Might as well be a superhero.

  13. Kate April 15, 2014 at 7:50 pm #

    Richard. Have you considered putting a tab on your blog that documents your treatment history and the results of that treatment? Being relatively new to MS, I know I would be interested in what you have tried.

    • Richard April 15, 2014 at 8:02 pm #

      Kate-

      Would be difficult forty-one years later.

      R.

  14. soursop,graviola,guanabana May 8, 2014 at 9:11 am #

    It’s the ideal time to make a few ideas for that long run and it is time to feel special. I have see this post and when I could I have to propose anyone very few exciting points or even tips. Maybe you could possibly produce following articles or blog posts in regards to this document. I have to go through much more points roughly them!

  15. Lydia July 8, 2014 at 3:09 am #

    It’s hard to find your articles in google. I found it on 12 spot,
    you should build quality backlinks , it will help you to increase traffic.
    I know how to help you, just search in google – k2 seo tricks

  16. shisha hookah pen amazon September 4, 2014 at 11:17 am #

    Smoking is a physical habit, not just a drug habit. From there, it draws out the voltage and
    gives the continuous feel of smoking. About two weeks after
    my amazing transformation from near pack-a-day smoker to smoking electronic cigarettes, the
    3-piece was turning into a piece of you know what.