How we choose to Live

When Blindsided was published, Barbara Walters hosted a 20/20 about Meredith and me. Barbara kept asking me in obvious incredulity, “Why do you continue to take subways?” her implication being, it is so dangerous down there. My answer was quick and clear. Because I can, Barbara. Of course only someone who who would never set foot down there decides it is perilous. Watch your step, and you will be just fine.
The real question that is raised is, how do we want to live? I already have written about the upside of taking some chances. Isn’t the follow up, how safe do you want to play it? That may reflect choices we all make that separate us. Of course there is no right or wrong. This is a gut decision we all have to make.
I can only speak for myself. I combine an urgent need for independence with a low tolerance for boredom. For me, boredom is among life’s fiercer enemies. The sedentary existence is not for me. Meredith used to get on my case for jaywalking. Crossing a busy avenue when the light is green is not a recipe for longevity when you are legally blind. But it can be exciting. Also it is so reckless that even I was sensible enough to stop.
My only question is, are you pushing yourself to get out there and live? I am well aware that because of severe physical limitations, not everybody can. But foot drop does not mean we have to drop off the face of the earth. Do you exercise as best you can? Belong to a gym? Upper body strength has saved my butt countless times when I was about to fall.
I think we should band together and rob banks. That would be very good exercise. It will be good for our blood pressure and offer a sense of accomplishment. Reporters will write about us. We will all be rich. We can donate some, not all, but a portion of our take to MS research. We can be heroes. What do you think? Sounds pretty exciting to me. We need excitement. I will lay out the plan each day from my bunker somewhere in the South Seas and dclaim I ever knew you.

31 Responses to How we choose to Live

  1. FUMS July 10, 2014 at 9:17 am #

    I’m in.

  2. Jana July 10, 2014 at 9:26 am #

    Me too!

  3. David July 10, 2014 at 9:46 am #

    Richard,

    Count me in too, sounds exciting. Boredom is constant companion when your mind allows you to go where the body says no.Keeping a sense of humor about almost everything is essential to survive.
    Keeping my upper body strong has prevented my falling too.
    Go with your gut and if you fall, get up again.
    Let me know when you need me for the bank
    David

    • Richard M. Cohen July 10, 2014 at 10:44 am #

      I will send a signal.

      R.

  4. Sandy July 10, 2014 at 9:58 am #

    Oh, count me in!!

    Geez I hope I have my new walker by then so I dont fall down during the getaway. But if I do just leave me there…run like the wind and spend my share on drinks with umbrellas and chocolate. I will just lay there yelling “Attica, Attica”!!

    On the serious side since I began reading this blog it occurs to me that I will often stop short of pissing off my MS. I play it safe way more often than I would like. I realize now that when I stop short of failure I may also be stopping short of success. You dont really know for sure which one it will be until you get there.

    I also think there is more than a little bit of superstition involved in dealing with MS. Its like the boogie man is always watching and keeping score. Ready to smack me down. What pisses him off is unclear and a moving target. Its a full time job just trying to figure it out.

    Attica, Attica,
    Sandy

    • Richard M. Cohen July 10, 2014 at 10:48 am #

      Push.

      R.

  5. jeanne July 10, 2014 at 10:11 am #

    If you need an old lady to fall down and distract the guards I’m in!

    Grandma

    • Richard M. Cohen July 10, 2014 at 10:47 am #

      You are hired. How old are you? 21?

      R.

  6. Mischele Coon July 10, 2014 at 11:46 am #

    Richard, you need a “Like” button for your blog. Anyway, I like your plan! We might be able to sell tickets. I’m sure it should be amusing to some.

  7. Sandy July 10, 2014 at 11:52 am #

    We are gonna need some one to play the calliope.
    Sandy

  8. Elizabeth July 10, 2014 at 12:17 pm #

    This is such a timely post. I told my psychologist yesterday that I am so bored and frustrated but my brain and my body are not cooperating with my plans, goals, and dreams. I always push myself beyond my comfort zone. I felt like a million bucks this time last year after a jolt of steroids and LDN so I aggressively sought out a job in my field, worked 60+ hours a week, traveling across 9 states and working diligently. Within 4 months I was looking for a DMT to help keep me mobile. Now after two more rounds of steroids to try to undo the damage from pushing myself too much, and getting terminated so they didn’t have to have an MS liability on their hands, I am afraid. I have transverse myelitis that won’t resolve. Is this normal? Will it go away if I just take it easy for a while or did I do this and will have to live with it? I’m feeling like I want to take on the world but I don’t need any more issues. I hate this disease and I could use some excitement. I have to say, the picture in my head of us collectively robbing a bank with all of our “physical obstacles” was hilarious. Maybe we could make a movie, or a documentary about how we are still real people who need to work and support ourselves so that employers aren’t afraid of us. I was terminated within a month of disclosing. It’s sickening. How do they live with themselves?

    • Christopher July 10, 2014 at 12:44 pm #

      Multiple sclerosis is weird that way… the body seems to be on an energy conservation mode. It’s like you or I get a “jolt” from whatever therapy, or just out of the blue, and then the timer starts. Once that energy is used up… poof. And it can go fast or slow, depending on how hard we are pushing and how much of our nervous systems are constantly online. There is something going on besides just messed up wiring because of altered myelin–which helps transmit nerve signals. Because the nerves are ‘leaky’ from loss of myelin, the nerves start to use more energy to get signals to get where they need to go. [Think of a fire hose with holes in it. It needs more pressure to get the water out at the desired force.] At a certain point the nerves run out of reserves and become fatigued. It’s basically metabolic–nerve cells have mitochondria just like all the other cells. And once the cells are depleted from working so hard, it takes a long time to recoup.

      • Elizabeth July 10, 2014 at 2:34 pm #

        Christopher, that is by far the best explanation I have ever gotten from anyone regarding what to expect and why I was great and then started declining slowly, slowly, then boom, all gone. Usually the response when you ask someone who has been in this race for longer why certain things happen, they say “everyone is different”. Well, yes and no. If everyone was that different MS would still be like fibromyalgia, at some point there was enough likeness to the illness to be able to form a profile for diagnosis. My sister who has MS diagnosed 15 years and I diagnosed 1 year who live 700 miles away for the last 20 years have discussed at length when our symptoms started and what they were. They are almost identical, only difference is she was diagnosed right away and has been on DMTs ever since. She has done well, Worked, nothing has shut her down, and no relapses. I’m a mess. But I’ve had the symptoms for almost that long, just no diagnosis. Thank you for the explanation, it makes so much sense now.

  9. Anon July 10, 2014 at 12:17 pm #

    Vive vitam tuam quasi cras non exsto.

    • Sandy July 10, 2014 at 12:32 pm #

      please translate to Protestant!

    • MB July 10, 2014 at 12:33 pm #

      Had to look up the translation, Anon: “Live your life as if tomorrow does not exist.”

      As for your post, Richard, I think I’m feeling empowered! I started reading this blog thinking I needed a Bitchfest forum. I was (and still am) very interested in the stem cell trial, too. but it turned into something so much more. People on here are living their lives, difficulties and all. If they can do it, why can’t I?

      My son will be attending Columbia Law in the fall. I just decided I’m going to take a trip to NY to help him find a place to live. Any suggestions?

      • Louise July 12, 2014 at 6:24 pm #

        All the young people and a lot of the old prefer downtown now, but the morning side heights neighborhood is great and lively now too . It will be less expensive and more convenient.

  10. Deb July 10, 2014 at 1:16 pm #

    Liked the upbeat post. I have been thinking about this very thing lately. Can’t stop living because of foot drop!!

  11. Linda Lazarus July 10, 2014 at 2:29 pm #

    I have a great idea! Everyone could show up on my farm and crawl right along with me picking haricot verts. I chose that crop because they are so light they do not weigh anything. If you get good you all can help me pick the heavier Italian Roma green beans.
    Now there is an adventure you probably had not thought about. Help a small organic farmer in your neighborhood!

  12. Erica July 10, 2014 at 4:49 pm #

    Although no mobility issues ever, started working out with a trainer six weeks ago in the hopes that it will stay that way. I can lift the safe.

    Your writing is so amazing. I feel a one man show a la Billy Crystal here. Think about it.

  13. Mark July 11, 2014 at 6:11 am #

    Can’t stop reading this one! Post and replies are therapeutic. Thank you!!

    • Jana July 11, 2014 at 5:32 pm #

      My sentiments exactly. This blog has been so good for me.

      Thank you! Thank you! Thank you!

  14. Francine July 11, 2014 at 7:07 am #

    I agree this is a great post (with such interesting replies!)! I’ve been lurking on this site for over a year but never chimed in until now. I desperately crave adventure but have felt too physically insecure to seek it out for quite a while. Screw it! I’m in for the heist! Just someone has to help me get up if I fall.

  15. Kevin July 11, 2014 at 9:29 am #

    I can drive, believe me I can drive.

    • MB July 11, 2014 at 10:50 am #

      Kevin–are you talking about driving a car? I stopped two years ago because of a bad arm/hand and leg, but I just called a rehab. center to see what can be done to regain that part of my life.

  16. Geof July 11, 2014 at 11:49 am #

    As I read the post, all I could think of was a cartoon from Callahan.

    http://www.callahanonline.com/calhat9.htm

    Of course, the only image I found online (quick search because I am lazy and easily board), is from his hate mail. Still if one can appreciate the humor of the imagined sight of a bunch of MS patients in wheel chairs and walkers making their get away, then this comic is right up your alley.

    As for need to live today, when I started Tysabri knowing the risk of PML, my wife and I decided to live by the motto of “Give me five good years over thirty crappy ones.” Now that I am roughly 100 infusions into this gig, I find myself quoting the scene in Dead Poet’s Society, “Thank you sir, and may I have another.”

  17. Sarah July 11, 2014 at 2:51 pm #

    Okay Richard, I’m in too. I could either be a driver, like Kevin, or play a perfectly dazed and confused looking bystander on the street wondering what just went down really waiting for a bag to be passed to me, then non-nonchalantly making my way to a near-by car .

    Oh wait, I already am a dazed and confused looking bystander always wondering what just went down, so no acting needed. But, I can drive – go figure…

  18. sharon July 11, 2014 at 7:21 pm #

    What a great post! That’s all….just great, made me think and I love days when I think! 🙂 Plus, I too, suffer from a very low boredom threshold so I related to that too, because not many people admit to that!

  19. Jo Bealham July 13, 2014 at 12:57 am #

    I’m in and will be good as a getaway driver. No one will suspect a 55 year old woman in a wheelchair.

  20. Trix August 3, 2014 at 9:26 pm #

    Band together and rob banks! I love it! I’m in.
    I’ve always rooted for the bank robbers (the ones that don’t use weapons or force).
    Your post made me laugh!
    Thanks!!

  21. Sue August 14, 2014 at 2:43 pm #

    Richard, As I type my response to your heist blog single left handily (because my right does not play along well anymore), I am also wiping the laughter tears away and holding my abs from the belly laugh! I thank you. I am still walking with the assistance of a cane and a muscle stimulator, albeit too slowly for a fast getaway. I can use my high powered scooter to join your band of looters.