Perspective

It is said that multiple sclerosis ranks low in the hierarchy of suffering. Fair enough. Many who battle MS probably take issue with that status. But most of us do not have to endure real pain, one measure of suffering. Once I told a neurologist that I have been smoking weed forever and keep hearing it is good for treating the disease. How? I asked. “Pain,” he answered. I don’t have any pain. “See?”
For those of us lucky enough to live a relatively pain-free life, the enemy is numbness and loss of sensation, I guess that is the opposite of pain. Our numbers are relatively few (400 thousand), our disabilities not horrifying. My pal, Susan Thomases, politics whiz and Clinton confidante, refers to her MS as a “big annoyance.” When I was on the Advisory Council of the NeuroDiscovery Center at Harvard, we oversaw translational research on Alzheimer’s, Parkinson’s, MS, ALS and Huntington’s. Of those, I would choose MS in a second.
Just consider Alzheimer’s disease, a chronic condition dealing a deathblow to the mind, with statistics that indicate an estimated 5.2 million Americans have the disease. I am not an MS denier. MS is far worse than a mere annoyance. This simply is a matter of perspective. And perspective is a useful coping mechanism. I know that a lot of individuals out there in trans-Hudson America have it worse than I do. I don’t mean in any way to minimize their anguish. But I know what I have and what is out there, and I will settle for my lot in life.
We do not get to choose, however, and we are left to deal with whatever card we draw. I have said many times that I refuse to be a victim. How we choose to view a disease that attacks us on a daily basis will go a long way in shaping how straight we stand psychologically.

30 Responses to Perspective

  1. DianeT February 16, 2015 at 7:54 pm #

    Well said, Richard. When my neurologist diagnosed me nine years ago I remember very well sitting there in disbelief, tears welling up in my eyes as terrifying thoughts ran through my head. I am an engineer so my rational mind had trouble accepting the diagnosis without bluntly hearing the facts. Since I had read that MS is notoriously hard to diagnose, I asked him what the probability was that he was correct? ( I was expecting to hear something like 50/50 or 60/40, at which point I would then proceed to get a second opinion and a new doctor! ) His answer floored me when he said he had 95% certainty. Quickly my mind adjusted to hearing the facts and I knew I was hearing the truth. The next thing my doctor said ( and a big reason why he is still my trusted neurologist) was ” Diane, I want you to look around my waiting room as you leave here today and notice some of my other patients. Then I want you to go home and count your blessings that you “only” have MS.” I did just that, and over the years, having lost loved ones to cancer, I still continue to try to keep my perspective, as you have said so well.

    • Richard M. Cohen February 17, 2015 at 2:28 pm #

      Smart doc.

      R.

  2. Linda Lazarus February 16, 2015 at 8:30 pm #

    Richard,
    In your post you said that you”refuse to be a victim”. I often wondered what people were implying when they say that. Is it that you see others as lesser…complaining and feeling sorry for themselves? Are you setting yourself apart from the rest of MSers?

    People often say that they will not be a victim and I look around at all the people with MS that I know…..I have yet to meet a one feeling sorry, whining or sucking the air out of a room with deep sighing.

    It is the implication in that phrase….as wrongheaded as the people who tell me how brave I am. Both stereotypes that move us out of the realm of everyday people with struggles. All humans have one or another struggle. There is equality enough in that.

    • Richard M. Cohen February 17, 2015 at 2:32 pm #

      To me, a victim is someone who stops fighting and trying to be the best, a person who blames the illness for every disappointment and takes the easy way ouit. And I think there are too many of us like that, and it is not just with MS.

      R.

  3. Jan February 17, 2015 at 9:44 am #

    Richard, I personally think it’s more than plenty for you to have numbness and related nasty MS issues. I then write below for the possibility of some “blog buddies” reading this:

    MS and PAIN:
    I agree with Richard, a neurologist, and some in an MS support group I briefly attended who mentioned that MS typically doesn’t involve pain. I don’t think it does. But it can. Let’s explore:

    Two visuals: notice the next Lyrica TV commercial. I’m not a diabetic, but the nerve pain I experience is similar to what they show. Also, if you’ve ever skied, think of someone taking ski boots, 1 ½ sizes too small, putting them in the oven (on roast), on your feet, and then expecting you to “walk” around that way. All the time. (My prior 19-year-old “sure, I can do this” self, I’m 53 now, snow-plowed down somewhat dauntingly icy Canadian Rockies near Calgary—don’t know how to stem christie, having skied only a handful of times in my life. My quads hurt in a good way the next day, btw, making work more challenging. This all reminded me of that fun memory, thanks. I’ll never forget that crisp air and full moon).

    The pain began a few years after MS. Related, I’m sure. So whether it’s neuropathy or Erythromelalgia, with a dash of spasticity, the recipe left my toes-to-knees (mostly feet) burning 24/7. When it gets really bad, I have prescription Lidocaine patches to place on my feet at night.

    Back to Richard’s “Blindsided” book as it relates to recent discussions about “denial,” I liked p. 121—“…evolution” of “…selectively ignoring limitations.” As with many things in life, how we choose to respond, I think and agree with Richard, is key.

    If you’ve never really read “Blindsided” or haven’t read it in a long time (my case), I recommend it. To encourage you, I’ll point to p. 122. Get the book and discover Richard’s personal dictionary definition of denial. Good times to relate, not to mention for a chuckle—with his beloved combination of truth and humor.

    • Richard M. Cohen February 17, 2015 at 2:43 pm #

      Lifeis about choices. We cannot control illnesses, but we steer our own ships. I love riding the wave.

      I get painfuil spams in my legs during the night and have to stand, feet flat on the floor. Then I look at the clock and struggle to sleep. In the morning I shrug it off. Could be worse.

      R.

      • Jan February 17, 2015 at 3:08 pm #

        Yes, it could be… though I am still sorry to read of your experience with that in addition to the other stuff. Very sorry. (But you have good perspective and forward-thinking).

        And all of a sudden I have a picture of you in my head, surfing in warm California waters. Ha. (Though in NYC, CA’s warmth and absence of snow would likely be very welcomed about now).

      • Cay February 18, 2015 at 8:04 pm #

        I get those too – they seem for me to be cramps more than spasms since my foot and leg stick in some ridiculous position and stay there. I do the same damn thing as you to stop them.

        I recommend a heated bathroom floor during your next remodel – so much nicer to stand on.

  4. Grant February 17, 2015 at 10:21 am #

    A statement like that, I believe, implies only one thing that has nothing to do with anyone else. The statement doesn’t hold up to qualify other peoples situations. Arguments get started when reading into singular statements. It really messes up critical thinking because the focus has been taken off the important point. In other words, if I describe myself as a wolf, it doesn’t mean I think other people are sheep. It just means I see MYSELF as a wolf. I believe Richard is only saying that HE refuses to be a victim, not he refuses to be a VICTIM. There’s a difference. We are guests here reading someone’s personal thoughts, not someone’s projections on the rest of us. I could be mistaken. That’s how I see it, and it made me think about my own situation and how many times I’ve blamed my disease for my situation.

    • Yvonne February 17, 2015 at 12:57 pm #

      Well stated Grant. I agree. A thought is not a projection. It’s a perspective.

    • Richard M. Cohen February 17, 2015 at 2:46 pm #

      I an confused about what weare discussing.

      • Grant February 18, 2015 at 11:06 am #

        Sorry, Richard. My computer, or internet connection, seems to be a little slow. So when I hit ‘submit comment’ more comments show up ahead of me. I was commenting on Linda’s taking issue with your use of the word “victim.”

  5. Amy Corcoran-Hunt February 17, 2015 at 10:37 am #

    A great read to start my day. Thank you. I try to remind myself of that same list, Parkinson’s, ALS etc. I have unusually aggressive MS, but take it any day. I’m still here…

    • Richard M. Cohen February 17, 2015 at 2:47 pm #

      Amen.

      R.

  6. Louise February 17, 2015 at 11:29 am #

    I came home from a shopping excursion and for some reason felt pretty defeated. I read your blog and somehow it cheered me immensely. I have had problems with pain, trigemenial neuralgia. But i don’t have it today and have just come from a morning swim which made me feel happy and lucky. Perspective.

    • Richard M. Cohen February 17, 2015 at 2:48 pm #

      Please keep it up.

      R.

  7. Josh February 18, 2015 at 9:03 am #

    I do have pain with the MS, and I’m in a chair, yet I don’t let it slow me down. I was blessed with a good attitude and self-deprecating humor. I joke about everything, including the MS and its assorted challenges.
    I live in the richest country in the world, have a home, car, family, food, heat… Even aside from what diagnoses would be worse, I’m still luckier than 99% of the rest of the world. You can’t cry about that.
    I’ve often played the “what-if” game — if I could change one thing in my life, what would it be… MS doesn’t even make the top spot.
    So perspective, attitude, and humor make all the difference.

    • Richard M. Cohen February 18, 2015 at 2:48 pm #

      Agreed.

      R.

  8. michael February 18, 2015 at 11:32 am #

    The only time I have felt like a victim during our 23 year battle is last week, when I pushed my wife in a wheelchair for the first time. I had been pushing for it, she has been fighting it. She was right. It nearly crippled me emotionally. No more chair for us, I kind of like holding her anyway.

    • Richard M. Cohen February 18, 2015 at 2:50 pm #

      Agreed. Attitude is everything.

      R.

      • Jan February 19, 2015 at 10:31 am #

        I understand firsthand about being pushed in a wheelchair for the first time (I cried at an arboretum—feelings of limitation, dependency, being negatively different I do not like. I know it also wasn’t easy emotionally for my husband, dear as he was to want to participate together. At a hilly place, at that).

        For me, my own emotions are more crippling than the MS itself, wheeled device or not. At home or out, I just do what I have to do. It’s usually hard. Challenging. I lately use a cane, then store scooter—and just deal with it, grateful to get things done. So be it.

        But when I see the look on my husband’s face when we’re together and I’m in whatever wheeled chair, that is far more crippling to me than what I’ve physically endured every waking hour or in prior falls. He cares; and I know it is hard on him emotionally, too. Not the life we had planned.

        So what works for me personally is pushing to my limitations (nearly always), preferring others to take their cues from me (and sometimes my cues from others when I’m feeling logical), but then realizing that my largest battle may ultimately be inside my own mind (and I’m not talking brain lesions here). That close observers may battle, too. It’s about being comfortable in my own skin, regardless of whether I use a wheeled thing or not. I battle MS, how I mentally deal with it, and how I deal with others who have to deal with it. Each of us only has control over our own emotions, and that is what I am working on.

  9. Geof February 19, 2015 at 10:05 am #

    I like seeing all of the “it could be worse” sentiments as it is how I typically view the world. I need look no further than my children to see that point made.

    However, I think the attitude we have to live with and the insidious nature of the disease lead to some diminishment of its perceived impact. When I say nature of the disease, I mean how it progresses. Imagine two people, a man without MS and a “typical MS” patient who has had MS for 20 years with the disease and imagine their symptoms. Now because they have had 20 years to get used to the idea, they likely do not even think about the numbness, stiffness or pain anymore, and if they could remember the stuff they had forgotten, their memory wouldn’t be an issue. Their personality changes were probably slow enough to be attributed to just “dealing with life.”

    Then imagine a healthy individual hit by a truck doing all the same damage in an instant twenty years after our start point. Which person’s health will likely be viewed by society as the greater shame? The damage was the same, and the MS patient has had to live for the past 20 years with symptoms accumulating. Who is the “victim” of their circumstances?

    • Richard February 20, 2015 at 5:26 am #

      Jan and Geof-

      In Blindsided I wrote about the bloodiest battlefield, In that exotic place north of the neck. A progressive ilness is as much mind game as it is a set of physical challenges. I guess all we can do is march on.

      R.

  10. Jan February 19, 2015 at 10:33 am #

    I forgot to say the word “perspective” earlier–I think it depends upon one’s perspective.

  11. L February 19, 2015 at 7:36 pm #

    Love the change in tone. I see good things happening. : )

    An aside on hope…do animals hope? I have bluebirds come sit on the rail of my deck every morning when they see me come out. Do they do this because they hope for the raw almonds I toss to them or is it just a boring learned behavior? (They don’t get almonds every time). Did Pavlov’s dogs have hope?

    • Richard February 20, 2015 at 5:28 am #

      Stimulus and response, I think.

      R.

      • Hannah February 20, 2015 at 9:16 pm #

        Oh but most dogs I know are ever hopeful. For a treat.

  12. MB February 20, 2015 at 2:46 am #

    Lucky was an interesting word you chose to use in your Twitter comment on Feb. 17th regarding perspective.(“Maybe we are luckier than we knew.”)

    I guess that’s one way to look at it. I’m definitely luckier than the guy who has Lesch-Nyhan syndrome which causes him to self-cannabilize or someone with fish odor syndrome which makes the person smell like rotting fish. MS is the lesser of the evils, but why don’t I feel lucky?

    It’s because even though I’m not stricken with a more horrifying disease, I still can’t walk or write or drive. I’m not having a poor me moment, but rather a “my-disease-is-bad-enough-and-I’m-not-feeling-very-lucky-about-having-it-instead-of-another-disease” moment.

    • Richard February 20, 2015 at 7:36 am #

      Luckier probably was a poor choice of words. More fortunate ot something might have less of a connotation than lucky. I will never feel lucky that I have MS. I only mean, better that than The Plague. Semantics will bury us.

      R.

  13. Elizabeth February 21, 2015 at 9:55 am #

    http://www.healthcarebusinesstech.com/the-12-most-debilitating-diseases/3/. MS is #4 on this list.

    My whole family has a very high pain tolerance, so it’s not so much the pain that is frustrating, it’s losing control of my brain and body that is hard to manage. While that’s a normal part of most illnesses, good days, bad days, I think that once I got the diagnosis it made me much more aware of my “presence” and ability. I have become much more aware of my speech, how long it takes to come up with that word I’m looking for, my gait and the fact that I look tipsy when I walk. I haven’t quite yet found my peace with this diagnosis. It is what it is. I am what I am. I need to change resignation to resolution. You’re right Richard, perspective is everything.