Taking Chances

Living the lives we want is all about choices. The computers in our sculls process where we choose to travel and the best route to get there. Then decisions are made. Many of us who grapple each day with physical limitations program ourselves to take the safe if not slow road to get us where we are headed. In due time we reach our destinations. Taking the well-paved road sure is boring.
Ask a formula one driver who spends his career driving at break neck speeds, taking chances and defying death. Michael Schumacher holds the record for the most Grand Prix victories, having won 91 times. He makes choices every day. Obviously his track record is pretty good since he is still walking the earth. I am not suggesting all of us become F1 drivers, only that maybe we should be more open to adventure than many of us are.
Christopher writes that when he pushes, he gets hurt. He describes pushing himself on spastic legs and taking a header that landed him in the ER with a headache and bruised ego. “The universe took me down a peg for my ignorance and arrogance. It also could very well have l taken much more.” I wrote back.
Staying in the race is important on a multitude of levels. Refusing to concede has its merits. We all make dumb choices. Keep them to a minimum and live with them. Better than taking the easy way out. I hate casinos, but I am a gambler of sorts.
Don’t we all have to be? When I spent part of two years in Beirut and El Salvador covering the fighting for CBS News, even as my eyes were failing me and a limp growing worse, I was well aware of the risk I was taking. Argue that this was reckless, and I will concede the point. But I had life altering experiences I would not have traded for the safety and security of home. How do we assess risk, and what is acceptable? That is up to you.
I am not writing prescriptions, only suggesting that playing it safe may mean living less. And when you break your necks, don’t sue me. We decide these things for ourselves. We pays our dues and takes our chances.

25 Responses to Taking Chances

  1. Linda Lazarus July 5, 2014 at 3:01 pm #

    Great advice. Thank you for reminding me.

  2. Nik July 5, 2014 at 4:30 pm #

    YES!! I like it. Let me go see if I can get my Zumba back on!

  3. Yvonne July 5, 2014 at 4:36 pm #

    Thanks to Sandy from another post “Superman” my new go to battle chant “anything MS takes will be by force. I give NOTHING away without a fight” Why live if you’re not going to LIVE? Falls, scraps and bruises be damned, I WANNA LIVE and face the new punches this disease throws at me cause I’m going down swinging, literally and figuratively 🙂

    • Richard M. Cohen July 6, 2014 at 7:38 am #

      Yes. Go for it.

      R.

  4. MB July 5, 2014 at 11:59 pm #

    “…playing it safe may mean living less.”

    Yep. That’s me.

    I’m so focused on not being a burden to anyone that, with the exception of work, I’ve become a boring recluse. My husband, my adult children, and my friends have stopped asking me to do things because nine times out of ten I say no.

    I can’t help but think that the hassle of including me far outweighs my contribution to any social event.

    • Richard M. Cohen July 6, 2014 at 7:43 am #

      Of course, I cannot say. I do believe however that it probably makes your family sad to watch you hang back. Grown children can be at your side and watch over you. Please think about what your participation will mean to them. Try it. What do you have to lose?

      R.

  5. Mark July 6, 2014 at 6:41 am #

    Molte grazie, Richard. Good stuff. I hike with a walking stick and fall. But I still hike. I mow the lawn and get dizzy…no more straight lines. But I still mow the lawn. Sometimes I have to make presentations to management and I forget what I am saying. But I still work. The MS may ultimately win. I just don’t want to make it easy for the disease.

    • Richard M. Cohen July 6, 2014 at 7:45 am #

      Mark-

      Exactly. Know thy enemy and give it hell.

      Best,
      R.

  6. Kevin July 6, 2014 at 11:57 am #

    Well said sir, well said

  7. Bill Garcia July 6, 2014 at 2:43 pm #

    My thing is gerdening. I really enjoy working in my beds and I might say they need the work. So yesterday even though it was hotter than the sun I gathered my tools and went to work. I worked for about 2 hours and called it a day. I knew the minute I stood up there would be a price to pay. And that payment came today. My legs can barely support me and I struggle walking. But it was well worth it. I enjoyed my time with hands in the dirt and my bed looks much better. I will continue the fight!!

    • Richard M. Cohen July 6, 2014 at 4:03 pm #

      You did the right thing. Do not give up what brings you joy just because it will piss off some alien force in your body. Extend the finger of your choice and keep going. We have to find pleasure where we can. I believe it is worth it.

      Best,
      R.

    • Richard M. Cohen July 6, 2014 at 4:03 pm #

      Good for you. You did the right thing. Do not give up what brings you joy just because it will piss off some alien force in your body. Extend the finger of your choice and keep going. We have to find pleasure where we can. I believe it is worth it.

      Best,
      R.

  8. Sarah July 6, 2014 at 7:32 pm #

    I had what like seemed a good amount of energy this morning – ran one errand, vacuumed half the car (the other half is my sons to vacuum). That wore me out for the next two hours. All I could do was sit, legs propped up after that. Then, about twenty minutes ago, after going to the bathroom, my right leg spas’d out, and I was down for the count in the teeny-tiny guest bathroom, with not much to pull up on except the toilet and sink. Took me about ten minutes to regain strength in my legs so I could pull myself up with the help of the toilet.

    I always dream of being able to yank this damned disease out of my brain and spine to beat the ever living s!*t out of it. I feel like a slave in my own body. I don’t do much with the family anymore, like MB. Then again, they rarely ask. And friends? You find out who they really are when they learn that you’ve become high-maintenance.
    I do everything I can and want to do, but with baby steps. I never know when my right leg will go out. Alien was a perfect word to use Richard. It feels like there’s one that migrates all over the place to wreak havoc whenever it feels good and ready to strike. But, we trudge on anyway, don’t we…..

    • Richard M. Cohen July 7, 2014 at 7:44 am #

      I have the same relationship with my toilet and sink. I hate it, but it is what it is. You are right. We just trudge on, perhaps pleased we do not battle ALS or pancreatic cancer. So much suffering around us.

      keep going.

      R.

  9. James July 6, 2014 at 11:00 pm #

    Hi Richard , you talk about conceding and that is something I’m trying so hard not to do. With all the DMTs out there after fighting MS for over 25 years they really don’t have much to help. So then my next plan is grasping at straws. A couple of straws back I emailed my neuro at UCSF to ask him about a CCSVI procedure. He td me not to even think about it.But what I tell my self nothing ventured nothing gained delivers.Now I’ve found a new straw to grasp. Acorda therapeutics is funding a phase 1 clinical trial of a drug called rHIgM22 . It’s delivered via IV single dose and it is hoped that the drug will stimulate temylenation. I also am wondering where you stand on your stem cell trial ? I sent my neuro a new email with my new straw
    Should hear from him in a couple of days . Thank you for your great blogs/stories!!!

    • Richard M. Cohen July 7, 2014 at 7:50 am #

      I have another stem cell infusion in August. No results yet, though my pulmonary embolism, psoriasis and shingles cannot have helped. Still hope to see something.

      I do not believe in CCSVI.

      Best,
      R.

      • Jack July 8, 2014 at 11:30 am #

        Late in 2010, out of desperation and after reading testimonials from people claiming great results from CCSVI, I had the procedure done by an interventional radiologist in New York. Doppler ultrasound and MRI images clearly showed that I had malformed jugular veins. As I said, I was desperate. Also, now I realize, very foolish.

        It’s an expensive procedure for which there has been no empirical evidence of efficacy. When I told the doctor that there was no positive impact on my progressive MS, he said that I might have to repeat the procedure several times over a period of years. I started to realize that CCSVI doctors have found their niche market and have attracted an almost cult-like following from frightened, desperate souls willing to grasp onto anything, no matter how far fetched, that gives them the hope of a cure. People with RRMS, who might attribute their naturally occuring temporary remission to procedural success, provide the potential for repeat customers.

        I’m waiting for some investigative reporter to do an expose on the big international business of CCSVI and the American doctors who are profiting from the monumental scam.

    • Christopher July 8, 2014 at 1:16 am #

      @James

      You would definitely have more luck with the monoclonal antibody from Accorda than the CCSVI procedure. Also, the procedure for supposedly relieving venous pressure in the neck is very dangerous and makes no sense because the brain and CNS immunity is a closed system–meaning more blood flow wouldn’t make a difference in MS.

      One other thing to be aware of is that if you ever took Tysabri it might preclude you from being on the Accorda mAb (monoclonal antibody). It isn’t a given, but you should be aware of how monoclonal antibodies work, and that sometimes being on one at any point makes it not possible to try another one later–it can be too hazardous. I hope that isn’t the case if the medication is approved, and I wish you the best with whatever therapy can help

      • Christopher July 8, 2014 at 8:55 pm #

        @Jack

        Sorry to hear you had such a bad experience. I sincerely hope something breaks through soon for you, as well as many others.

        I know may not seem like it, from the perspective where this procedure didn’t help you… but you are not “foolish.” Not a bit. Desperation may push any of us into unknown territory, and any of us can be influenced by people with authority when under stress–a sense of urgency. But it is definitely not being foolish. Something foolish is when anyone knows better, or has all the facts which say not to do it, but he or she does it anyway. It’s difficult to say whether these doctors are trying to pull a scam–which would be incredible malpractice, leaving them open to suits and prison sentences–or if the doctors sincerely think they are on to something unconventional, and are just mistaken about its application. One thing for certain, this Dr. Zamboni is a vascular researcher and I believe he doesn’t completely understand the differences in immunity between the vascular system and the nervous system. They are wholly different. The nervous system uses glial cells to fight pathogens, and the blood has cytokines and macrophages to name two. Opening up veins to increase the blood supply to the brain won’t really affect the immune function of the brain and spinal cord.

      • Richard M. Cohen July 10, 2014 at 7:21 pm #

        I do not believer in CCSVI. Leave it for the Canadians.

        R.

  10. MB July 7, 2014 at 8:07 am #

    The responses to this post are very inspiring. I’ve come back to read them multiple times as I contemplate some changes I need to make. Thanks for sharing your experiences everyone.

    Time to assess risks and take some chances.

    • Mark July 7, 2014 at 8:17 pm #

      Good for you, MB. I do get bumps and bruises when I fall while hiking. And I may only go a couple hundred yards. But it is worth the effort…and risk. Be careful. But don’t be afraid to push things a little. Best wishes. Mark

  11. Geof July 7, 2014 at 1:45 pm #

    I try to live by the axiom of “We only know our limits when we push ourselves to fail. If I never fail, then I have sold myself short by setting goals too easily attained.”

    I have fallen many times, and some of my failures have reached legendary status at my work (think 16k complaint calls for one mistake), but the knowledge gained from the mistakes is worth the skinned knees and bruised ego. Even the mistake leading to the thousands of complaint calls lead to a new mail out system saving thousands of dollars a year for the past 12 years and counting. When I tell people at work the story of my mistake leading to the thousands of calls, the answer is always and incredulous, “That was you!?” It was, and I still try not to shy away from potential mistakes if the potential gain is big enough.

    Samuel Beckett wrote, “Ever Tried. Ever failed. No matter. Try again. Fail again. Fail better.”

  12. Nancy Cincotta July 7, 2014 at 5:31 pm #

    Richard,
    When will you give us an update on your stem cell journey?

    • Richard July 10, 2014 at 8:02 am #

      Big meeting next week.

      R.