Last Tango

Yes. I was AWO.L. Throw me in the brig. Bread and water. Don’t forget the gin.
Actually, things have been tough. I feel weird going down that road. I realize the hardships so many of you endure. But I believe there is no hierarchy of suffering. All of us live with our own realities. I have tried to keep quiet about mine. But this is a difficult time. Welcome back to the club.
I have tweeted (stupid word) that I have lost more vision. For twenty-five years I made my living creating in a visual medium. That irony never has been lost on me. Cronkite and Rather both knew I had MS. Neither said anything, nor did they acknowledge the illness. They just trusted me and believed I would be honest with them if ever I felt I could not do something. I, in turn, tried to prove I could do everything. I stood up to the communists in Poland and was there for the ascent of the Solidarity movement. I covered wars in Beirut and El Salvador. I was pretty reckless. In my need to prove to myself I could cut it.
Now I fear my luck is running out. I am walking perilously close to the edge, and the drop is steep. I have had bouts of optic neuritis on and off for decades. My vision is being chiseled away. How odd that I am so hung up on the prospect of a wheelchair when my chosen way of life is so threatened by vision loss. I can live with where I am now. I just do not know where the train is going. Sound familiar?
Fear for the future is built in when a person has any progressive illness. I always was able to push fear away. That effort is getting more challenging. If I do not share this, what the hell am I writing this blog for? I am worried. Scared? Maybe. Maybe not. Self-confidence has never failed me. My commitment to adapt and overcome has sustained me. I believe that is true of the many.
I am tired of playing Superman. I guess I volunteered for the part long ago. Meredith thinks I am better suited to play Goofy. The disease is goofy, if you ask me. But the tango continues, and it is too late to stop dancing.

59 Responses to Last Tango

  1. Sandra Schneider May 28, 2015 at 9:22 am #

    Richard,
    I’ve never been accused of unbridled enthusiasm, but the results of the phase 3 biotin trials for SP and PP MS showed some positive results for optic neuritis.

  2. Henriette May 28, 2015 at 12:00 pm #

    this made me sad. there’s nothing one can say. I left the page and before I knew it the Grateful Dead’s “Truckin” came into my head and the vision of R. Crumb’s cartoon of the guy truckin’…. trivial maybe but somehow the mix of you, The Grateful Dead and R Crumb cheered me up.

    • Joan Z May 28, 2015 at 12:33 pm #

      I think it’s no accident that Truckin’ came to you, seems tailor made to Richard’s post…

      “Sometimes the light’s all shinin’ on me,
      Other times I can barely see.
      Lately it occurs to me what a long, strange trip it’s been.”

      MS is a strange trip.

    • Richard M. Cohen May 28, 2015 at 7:19 pm #

      I often say, let’s keep trucken’. What else can we do?

      R.

  3. Jeff May 28, 2015 at 6:56 pm #

    As tough a battle that MS can be, the toughest battle may be in our own heads – at least it is for me. Fear of what may come is often worse that what is and I often struggle with fighting those fears. Best of luck Richard and know that you can always share here – we are all in our own personal battles and no matter the level of severity, we all have our struggles.

    • rmcjourneyman@gmail.com May 30, 2015 at 10:05 pm #

      Agreed.

      R.

  4. Kat May 28, 2015 at 7:58 pm #

    Jeff, I completely agree with you. The toughest battle is in my head as well. When first diagnosed 20+ years ago my biggest fear was that of a life spent in a wheelchair. Well 10 years ago I ended up in one. People who have progressive disease are the strongest physically and mentally because we cope with loss or the fear of it every day. We also focus on what we can still do without even realizing it. That’s called living.
    -Kat

  5. Yvonne May 28, 2015 at 9:22 pm #

    The one true finite is life. We are all dealt a hand and we determine how it is played but we know eventually the game must end. Those of us with chronic progrssive disease just have to play harder and bluff more.

  6. Nik May 28, 2015 at 10:09 pm #

    Richard, I was missing your posts. Was so glad to have two so close together, but tonight this made me cry. I’m coming up on my year since my first episode. Still not completely diagnosed. Crazy Drs calling it CIS, yet my eyes hurt constantly and I can barely move my arms from pain. It’s been a year from hell and your posts are my sanity. But tonight I can feel your pain through your words. I’m sorry you aren’t feeling well. I check every day for a new post. In between coming home from work exhausted to getting my kid to soccer, I look here for your posts and the comments. I’m becoming attached to this site and when you went AWOL I was nervous. Please keep sharing…

    • rmcjourneyman@gmail.com May 30, 2015 at 10:09 pm #

      I will. I have been down this road before. I will survive, as will you. Keep the faith.

      R.

  7. Tom May 29, 2015 at 2:48 am #

    Richard,
    I must say your Journey inspires a fellow PPMS’er. I’m pushing 50 and see the wheelchair looming. My falls are increasing and walking labored. Had a bout of optic neuritis and I recently tried a book on tape…not perfect but was not hating it .

    I’m more of a Stones fan – you can’t always get what you want….but if you try sometime you get what you need.

    • rmcjourneyman@gmail.com May 30, 2015 at 10:10 pm #

      I am with you.

      R.

  8. Jan May 29, 2015 at 2:30 pm #

    Richard, so very sorry about still more tough issues you are facing.

    Adapting and overcoming–get that totally.

    It’s individually relative yet all so important regardless of the circumstances. Just returned (to some tornado damage; others not so fortunate) from seeing a my husband’s friend with ALS. Makes me think of the fact that each will face finality one day, some sooner than others. But how? I am a Christian–makes life’s issues take on a different perspective entirely. (I’m still calling health and age “midlife crisis” at times with some realities I didn’t have to think about before).

    On a no-meds, dietary approach 95% of the time; taking a changed supplement approach. It’s all helping. (Still need work on the resting thing).

    However, someone recently said to me, “You can’t always choose thoughts, but you can choose which thoughts to dwell upon.” Liked that–gives me some control over challenges. Will I dance around or among this, I ask myself.

    • rmcjourneyman@gmail.com May 31, 2015 at 8:04 am #

      Good quote.

      R.

      • Jan June 1, 2015 at 8:10 pm #

        Thanks.

        And, I’m now determined that it will be “among,” to eight counts of eight later in the month, if not zapped by heat. Results TBA later.

        Need to soon return the book I read about here and in the WSJ, “The Brain’s Way of Healing,” by Norman Doidge MD. Hmm, interesting: PoNS. Will check it out again.

  9. David May 29, 2015 at 3:08 pm #

    Your post mad me sad but I understand at least a little. We only know what we each know. Its a fine line between fighting this disease with our optimism and sometimes denying our current truth.

    For fifteen years I have fought against all I have lost,trying so hard to stay upright,mentally and physically

    You don’t want to play Superman but that’s what you have done, like so many that gather here.

    For those who truly know us that fate has been sealed.Adversity does not create character but reveals it. I think a lot of those here are superhuman to live with MS and remain hopeful

    We will dance around this and live with it both, no choices!
    Always choose positive thoughts to dwell on!

    • rmcjourneyman@gmail.com May 31, 2015 at 8:07 am #

      I think we all try to stay positive. Not always easty.

      R.

  10. Rob M May 30, 2015 at 8:26 am #

    Hope you make it through this tough time. That post was brutally honest and puts into words the thoughts and feelings lurking in the corners of my mind. That’s why I come here. I’ve had MS for 19 years. Last year I crossed the Rubicon into secondary progressive. Reading this blog has become part of my therapy in dealing with this damn disease. You and the commenters make this ride bearable.

    • rmcjourneyman@gmail.com May 31, 2015 at 8:09 am #

      We are there for each other.

      R.

  11. Kim Lubeck May 30, 2015 at 10:41 am #

    You speak the truth, Richard. And for that, I thank you!

    • rmcjourneyman@gmail.com May 31, 2015 at 8:10 am #

      I think all of us do.

      R.

  12. Anne May 30, 2015 at 7:11 pm #

    I am so sorry that you are going through a tough time right now. You are in my thoughts.

    Anne

    • rmcjourneyman@gmail.com May 31, 2015 at 8:10 am #

      Thanks.

      R.

  13. Amy Corcoran-Hunt May 31, 2015 at 9:16 am #

    I don’t know if your stem cell trial will preclude it, but there was some success very recently in a French study of very high dose Biotin (just a B vitamin), the first sign of hope for PPMS and SPMS, with particular help for visual stuff. A lot of us are just compounding pharmacy our way to it right now, why not.

    • MB May 31, 2015 at 2:22 pm #

      Amy,
      Do you need a prescription for compounding pharmacies? I was thinking along those same lines.

      We can wait around until some researcher’s pet project is financed and all of the FDA hoops are jumped through, or we can be more proactive.

      Looking at the timeline of MS “discoveries” and “treatments”, it seems like the majority center around us being long-term cash cow patients.

      http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Timeline-of-Research.pdf

      1933 is probably our major stumbling block. (1933: Acute experimental allergic encephalomyelitis (EAE) developed as model for MS) Damn that mouse model for MS that extends research but always comes up short when it comes to positively impacting humans!

      • MB May 31, 2015 at 2:31 pm #

        Where’s MS’s Jonas Salk???

      • Amy Corcoran-Hunt May 31, 2015 at 7:54 pm #

        Two ways to go: my neuro saw the presentation at the AAN conference and was comfortable writing a script: pure pharmaceutical grade d-Biotin, 100mg, 3 x a day. For those without neuro support people are buying pure Biotin bulk and weighing-measuring with scales from Amazon. Desperate times. If you’re on Facebook you can find a big group: Biotin for Progressive MS.

      • Amy Corcoran-Hunt May 31, 2015 at 8:00 pm #

        Also. the decision is economic. Compounding pharmacies are out of reach for some.

      • Jan June 1, 2015 at 8:14 pm #

        Very interesting, thanks, MB.

    • rmcjourneyman@gmail.com June 2, 2015 at 7:34 pm #

      Go for it. Will inquire for myself. Thjanks.

      R.

  14. Sandy Stolaronek May 31, 2015 at 12:36 pm #

    I have been dx’d with SPMS for 5 years now, looking back, probably had MS since I was a child. Losing my ability to walk and now, my voice and some vision. The worst of all of this, is my anxiety and depression…..oh, did I mention fatigue, balance and spasticity? All of it seems uncontrollable now, uggghh! Oh well, I feel like I’ve crossed the threshold for denial into acceptance but I try not to dwell on it, just fight everything with meds, lol!

    • rmcjourneyman@gmail.com June 4, 2015 at 6:47 am #

      It is a long road. Pace yourself emotionally. Try not to give up. Faith in the future can be thin. There is a lot of research. Maybe…

      R.

  15. MB June 1, 2015 at 12:52 pm #

    I just wanted to share this quote I read today:

    “It is not suffering as such that is most deeply feared but suffering that degrades. ”
    — Susan Sontag

    That’s it in a nutshell, isn’t it?

  16. Linda Lazarus June 2, 2015 at 6:12 pm #

    I think I understand that your visual oddities are more frightening than everything else. Visual oddities is what I call my optic neuritis presentations. Since a bad time last January I have a number of new ones. They behave like naughty children darting at me from their hiding places…sticking their tongues out at me with a “gotcha” expression. I will not like losing any more vision.
    Linda

    • rmcjourneyman@gmail.com June 4, 2015 at 6:50 am #

      The worst. OK. One of the worst.

      R.

  17. Sandy June 4, 2015 at 1:47 pm #

    Its okay to hang up the cape now and then. I set down my scepter and take off my tiara sometimes.

    Being the queen of my MS does not really mean I am in charge…I just like to play the role.

    I dress the part and more often than not I actually feel stronger.

    That’s the big problem with MS – toooooo much reality and none of it good.

    Except for the love of gin and that god awful serenity prayer I might be a decent recovering alcoholic. That whole “accept the things I cannot change” crap. Seriously? Be belligerent I say. Give a hearty Eff you to those forces chipping away at my life. I will sip my gin and tonic in the shade and accept nothing.

    All we are saying…is give the cape a chance.

    • rmcjourneyman@gmail.com June 6, 2015 at 2:41 pm #

      I will have a double. You can keep that prayer.

      R.

  18. David June 4, 2015 at 5:07 pm #

    OK, so we might be handicapped in a way that the whole world can see. One person cant walk and another cant see. One person cant Feel pain and another cant pee.

    These are the reasons its called Multiple Sclerosis, many things go wrong with our bodies.

    Its a good thing we have this forum to bounce off ideas, discuss how we fight and encourage, wish or pray for each other.

    As I try to navigate in this world of moving humans a thought always comes in to my head.

    We strive and struggle and endure such pain as we push through our disability yet the world instinctively sees us as weak, the fact is just the opposite.

    Anyone fighting MS, we are the strong ones, no doubt about it, we must live our lives so deliberately just to remain here.

    I wish all everything positive, everything!

    • rmcjourneyman@gmail.com June 6, 2015 at 2:46 pm #

      You are absolutely right. I, too, believe we have great strength. It is too bad we are so defined through the eyes of others. But do not doubt yourself.

      R.

  19. Dale June 7, 2015 at 12:07 am #

    I am weary of shaking the pompoms. I used to find myself annoyed at the people who said face it, there is no cure around the corner. Now I know they’re right. I’ve been in denial way too long.

    • Joan Z June 7, 2015 at 1:41 pm #

      Dale, thank you for saying that. I too am sick of cheerleading. I first became aware of MS and the “right around the corner” speech when I was 17 (older sister diagnosed). Now pushing 56 and 22 years since my own diagnosis, I am finally seeing how short the runway actually is. I quit chasing the cure. I try to remember to be grateful for what’s right in front of me. Some might see that as giving up, I see it as liberating.

      • Yvonne June 7, 2015 at 10:43 pm #

        Thanks Dale. On those days when the disease takes one more turn I come here for perspective. And you’re right. People think I give up when I roll my eyes at every new “thing” and no longer expect or wish for miracles. You’re right. It is a liberating not a defeatist attitude. I’ll try some things but I no longer chase the cure or the newest “miracle”. I see now that it’s OK to just adjust and make do. Liberated after 30+ years!

  20. Janis June 7, 2015 at 12:12 am #

    Richard, you deserve the privilege to complain and be afraid. But please know your family needs you and your Readers count on you and your thoughts Just wanted to also let u know I just read the MS society is funding research on Dance in Physical Therapy instead of TISCH MS stem cell trial. How insane is that, when everyone can benefit from stem cell research but not Dance for those thousands of US who can’t even walk let alone dance. Just wanted ur opinion on this. My thoughts are with you feeling better soon

    • Yvonne June 7, 2015 at 10:51 pm #

      I think Richard, like a good facilitator, introduces a topic and steps away to let the group make discoveries based on their experiences. And to have a light libation…:-)

    • rmcjourneyman@gmail.com June 9, 2015 at 7:31 pm #

      I am way out of sync with the MSS. I do not agree with their choices. It is too bnad.

      R.

      • Dale June 10, 2015 at 9:45 pm #

        Me too. Though my daughter did get a nice scholarship from them. But like some of the pharmaceutical s not sure how many folks there have MS. The American kidney foundation was started by a woman with nephrotic syndrome, a kidney disease, and a lot of the folks there have kidney issues. So they get it.

  21. Yvonne June 7, 2015 at 10:45 pm #

    Forgot thanks Joan Z. Liberated…

  22. dale June 8, 2015 at 12:31 pm #

    The folks on the Facebook Biotin for Progressive MS are very upbeat. Not delusionally upbeat. Informative and refreshing. They state up front they’re basically looking for factual information.

  23. Yvonne June 8, 2015 at 3:58 pm #

    Dale- I can’t find a group by that name on FB.

  24. Lisa guyder June 8, 2015 at 5:15 pm #

    Yvonne, I found biotin for progressive MS on Twitter. I had been reading this blog since it started, this is my first time replying, hope it helps thanks. I’m going to talk to my neurologist in 2 weeks about this.

  25. Yvonne June 8, 2015 at 5:16 pm #

    Thanks Lisa.

  26. Yvonne June 8, 2015 at 10:15 pm #

    I gave this blog a shout out on the Biotin for PMS page cause if it hadn’t been for ya’ll I wouldn’t have found them :-). A toast to all of you that suggested that group. Can never rule out anything…

  27. Dale June 9, 2015 at 12:56 am #

    Thanks for coming through on that Amy. I hate it when work gets in the way.

  28. Jenny June 9, 2015 at 9:11 pm #

    Thank you for posting the FB link!

  29. Louisa June 11, 2015 at 1:43 pm #

    If I join that Biotin group, will all my facebook friends see that I’ve joined? Does anyone know?

    • Rosanne June 11, 2015 at 7:44 pm #

      All I know is that if it is a “private” group your friends will not see you comments …unless they are a member also. I hope that helps.

  30. Christopher June 11, 2015 at 5:24 pm #

    This whole ‘Biotin’ thing is sounding too much like the big ballyhoo about LDN some years ago. I don’t think I expect too much from a non-essential, water soluble B vitamin.

    **note: “non-essential” meaning that our bodies produce it without supplementation. It’s produced by gut bacteria in fairly large amounts.