Cutting Slack

Words of frustration rom Elizabeth: “I don’t thrive on pity. In fact I hate it, but can I ask a question? Why is it that people with MS are thrown into the “pathetic, sick people category? People with cancer or some other life threatening disease are seen as fighters, heroes, which they are. But while MS is life threatening, meaning it takes away your life right before your eyes, it’s not taken seriously except in our own parallel universe?”
Elizabeth, I am sorry you feel that way. I read great pain in your words, and I know the frustration we all feel, all the time. I do not agree, though. I believe our self-worth, self-esteem, self-confidence and self-everything else are assaulted everyday by an illness we cannot see or touch but has us by the throat. I believe what you are describing reflects how we see ourselves. That we project that sorry view onto others is no surprise.
I do it, too. I believe that when we feel down, we can be very hard on ourselves, as if it is our fault we are sick. That is like me blaming myself when I fall, which I do too much. We turn our hurt and anger inward. Of curse, I am a journalist, not a shrink. But I just do not think folks with other illnesses are seen as fighting the good fight while we are viewed as just pathetic.
I take so much from all of you, your strength and resolve. You are wonderful role models. Elizabeth, my friend, you are no different. You just do not like what you see in the mirror. Truth be told, I stopped looking in the mirror a long time ago, except when there is a sharp razor blade in my hand. I knew no good would come of the quick glance. We see what our mind’s eye instructs, and it is not always pretty. Elizabeth, I will bet you are. Please cut yourself some slack.

40 Responses to Cutting Slack

  1. Linda Lazarus November 16, 2014 at 2:15 pm #

    I have thought about this brave/courage issue a lot. My thinking is that people stay away from us because WE ARE NOT GOING TO DIE….GENERALLY, FROM MS.

    If people admire us there is no end …they will have to stay involved for years….if we were dying, there would be a limit on time spent carng for us. Since we are not dying, it is easier on others to cast us in a non sympathetic light. I know people will disagree but that is my observation.

    • Richard M. Cohen November 16, 2014 at 4:26 pm #

      Interesting thought. It is easier to admire one with a decisive, deadly disease. Chronic illnesses are incurable and drag on. Too messy.

      R.

      • Hannah November 16, 2014 at 8:41 pm #

        This is what I’m hearing…but please everyone forgive me for this analogy because
        1) it is probably terrible
        2) because RMC worked in news at one point or another

        Fantastic and/or gruesome deaths from WHATEVER are breaking news stories. They are quick and fast and **FLASHY** and maybe action packed, and a fancy reporter will cover it. Chronic diseases are like the weather report…it’s always part of the broadcast…some forecasts are better than others…we don’t really need a star to read the script…and we put that shit at the end of the broadcast so we can count on SOME eyeballs seeing the commercials because we know people need to know the weather. Do pharmcos love chronically diseased people for this reason? Since they’re always going back for more pills and other concoctions…like how people want to see the weather?

        The weather comes and goes, and it’ll be back tomorrow because the jet stream ain’t gonna quit over night. Breaking news breaks, and then I guess it’s broken, and we’re moving on because no one cares any more and we need a new story. See how that sorta sucks? I think we’re addicted to hype and trends, and I don’t think that is right.

        Or a shorter analogy…chronic illness is Anna Karenina, and everything else is Twitter.

        I challenge myself to say one positive thing to myself every day while I am looking in the mirror. Sometimes I can’t look at myself, but I say the things anyway. Day to day struggles aren’t exciting, but they are necessary and they are what make life beautiful and worth living.

  2. MB November 16, 2014 at 5:39 pm #

    I agree with Linda and Elizabeth and what you said in your comment, Richard about MS being “too messy.”

    People with MS aren’t looked at as people fighting a courageous battle against a disease because there is no battle. We are just trying to stave off the next attack while hoping that if it does happen, it won’t rob us of another layer of our dignity.

    Spouses of MS patients never hear the calvary coming in the distance. I don’t think spouses of cancer sufferers look for the calvary, but how many times has death from cancer been referred to as a “blessing” because the patient and family no longer have to suffer? Not the case with chronic progressive diseases that drag on.

    • Richard M. Cohen November 16, 2014 at 8:27 pm #

      But the same can be said of a multitude of chronic illnesses. All are incurableand we are living longer, hence the messy part. No resolution.

      R.

    • Louise November 18, 2014 at 12:37 pm #

      I know I can lose a lot from forces beyond my control, but I insist I can only lose my dignity from behavior over which I have control. Just a thought.

  3. Pat Harper November 16, 2014 at 7:58 pm #

    Thanks for your blog. It matters. It is important.

  4. Dale November 16, 2014 at 8:16 pm #

    I can live without pity but it would be nice once in a while to be cheered on. Worry over my early symptoms were attributed to being a hypochondriac. When I became deeply depressed once with three kids, high stress job and taking care of inlaws in my home the words ‘overly dramatic’ were offered. I think everyone should write their own obituary, and the words “courageous battle” will never be found in mine.

    When a neighbor who hadn’t seen me in a long time found out I had MS, she said to me “Oh, Jim must be devastated,,,” So maybe it’s my husband’s courageous battle. I am close to the point of giving up though. The drugs really don’t work,but it’s been helpful finding kindred spirits here. Richard you have collected a nice group of thinkers here. I’m grateful for their perspective.

    • Richard M. Cohen November 16, 2014 at 8:30 pm #

      I agree. And who cares what the others think, anyway? Life is hard enough.

      R.

      • Dale November 16, 2014 at 9:36 pm #

        Right again, Boss… boy you’re good. 🙂

  5. Hannah November 17, 2014 at 1:36 pm #

    Ewwww. The morning after writing a terrible response to a blog post is basically like waking up hungover in an unfamiliar bed. GrOSS. Where is the delete button.

    In retrospect, I think what I wrote is insulting to meteorologists, and I am sorry about that because I love (all) scientists, especially geologists (my parents’ profession).

    I only stand by my last two paragraphs. Forget the rest. Someone help. Self-doubt is everywhere. WHERE IS THE UNDO BUTTON FOR LIFE OOOOOOOHHMYYYYGAWDDDDDDD

    • Richard M. Cohen November 17, 2014 at 8:10 pm #

      Don’t worry, Hannah. We all say and write things we would like to take back. Of course, the spoken word is easily and often forgotten. The trouble with writing is that it is out there for a long time. But I figured out what you meant…sort of.

      Best,
      R.

      • Hannah November 17, 2014 at 8:34 pm #

        Awwwww…thanks, Richard. I didn’t figure out what I meant at all. Pass the joints over. I’m sure that will help me think it through. Bye.

  6. Jeff November 17, 2014 at 1:36 pm #

    It’s all in the perspective. I imagine that others, with other conditions may be saying “I would give anything if my condition wasn’t terminal – I just want more time”. I think what we have to do is really get inside ourselves – look in that mirror, see who we are and try to get more comfortable. It doesn’t seem to be going away any time soon, so we might as well learn how to cope.

    The mind is extremely powerful, it can lead us to despair at times, but it can also provide that perspective that allows us to be OK with what is and learn to appreciate and enjoy the good in our lives.

    • Richard M. Cohen November 17, 2014 at 8:12 pm #

      Amen, brother.

      R.

  7. Mike J November 17, 2014 at 2:51 pm #

    Perfect example- this new drug Lemtrada started out as a drug to treat cancer but then the company hit the mother load when they found out it could be used for MS- JACKPOT! At $158,000 for two treatments the “analyst” predict it will bring in a billion dollars a year. Because we don’t die… right away, first we spend everything we have, can borrow to buy these drugs. Why, because it’s what we’re told to do. I know life is not fair but this is silly. I’m not sure if this fits with this topic but I had to share

    • Richard M. Cohen November 17, 2014 at 8:15 pm #

      Thanks, Mike. Does any insurance cover even part of that and which part? Staggering.

      R.

      • Louise November 28, 2014 at 10:10 pm #

        If I was younger and just diagnosed, I would try to get treated with the Lemtrada. Some people have had real results – results as in long lasting improvement.

  8. MB November 17, 2014 at 7:15 pm #

    Richard, I saw on Twitter that you had another stem cell infusion. How many are planned?

    • Richard M. Cohen November 17, 2014 at 8:17 pm #

      I honestly don’t know the protocol. Should know at the end of the week.

      R.

  9. Dale November 18, 2014 at 9:01 pm #

    I haven’t been able to find a single person for whom Terry Wahl’s paleo diet worked like it did for Terry Wahls besides… Terry Wahls.. Folks feel better because they’re eating healthier. The rest of the snake oil most of us have gone through? Well, there are lies, damn lies and then there are statistics.
    I’m expecting a miracle here for Richard and this really will be a true breakthrough. Thanks for putting yourself out there for all of us.

    • Richard November 19, 2014 at 9:09 am #

      I got to know Terry and like her. She is a true believer. Like you, I just do not know anyone who has had real results from the diet. I suppose healthy living is its own reward. The jury is out on the stem cell infusions. I am sticking with low level optimism.

      Best,
      R.

  10. Hannah November 19, 2014 at 11:57 am #

    “I am sticking with low level optimism.”

    No. I resent that statement. I believe your thinking should change to “I am sticking with low level expectations.” Then you’ll be pleasantly surprised if things go your way. The reason for this change of thinking is described below in a little story that I hope brightens everyone’s day.

    I saw something spectacular yesterday. In fact, I dug through the garbage to retrieve the spectacular thing. It was a take-out bag from Chipotle, covered with food and something else…I don’t know what.

    Here’s a little secret that is not subliminal marketing or an endorsement – people at Harvard Business School eat a lot of Chipotle. A lot. I know for a fact because I work there. It’s actually great because everyone always smells like a burrito, and I happen to like that smell. Another not-so-secret secret is that smarty-pants Harvard professors are quoted on Chipotle bags for a marketing campaign that Chipotle is currently running.

    I dug Steven Pinker’s bag out of the trash because it was too amazing to be thrown out. Now wait a minute, I know what you’re thinking. It wasn’t Steven Pinker’s ACTUAL Chipotle bag – he works in the Psychology Department anyways. That would be creepy and stalker-ish if I saw him throw a bag away and kept it, right? No, that is not why I took the bag. I took the bag because it had Steven Pinker’s quote on it. I cleaned off the bag and put it up on my bulletin board for everyone to see (stains and all). The quote on the bag struck me very deeply because I was wallowing in my inability to think earlier in the day…perhaps my mind was clouded by the smell of so many burritos. But a small portion of my wallowing applied to some comments I made on THIS VERY BLOG. Don’t worry – it’s my problem, and I think I’m over it because of this fantastic piece of trash I retrieved from the barrel.

    This is what the bag read, I kid you not:

    A Two-Minute Case for Optimism by Steven Pinker

    It’s easy to get discouraged by the ceaseless news of violence, poverty, and disease. But the news presents a distorted view of the world. News is about things that happen, not things that don’t happen. You never see a TV crew reporting that a country isn’t at war, or that a city hasn’t had a mass shooting that day, or that millions of 80-year-olds are alive and well.

    The only way to appreciate that state of the world is to count. How many incidents of violence, or starvation, or disease are there as a proportion of the number of people in the world? And the only way to know whether things are getting better or worse is to compare those numbers at different times: over the centuries and decades, do the trend lines go up or down? As it happens, the numbers tell a surprisingly happy story. Violent crime has fallen by half since 1992, and fiftyfold since the Middle Ages. Over the past 60 years the number of wars and number of people killed in wars have plummeted. Worldwide, fewer babies die, more children go to school, more people live in democracies, more can afford simple luxuries, fewer get sick, and more live to old age.

    “Better” does not mean “perfect.” Too many people still live in misery and die prematurely, and new challenges, such as climate change, confront us. But measuring the progress we’ve made in the past emboldens us to strive for more in the future. Problems that look hopeless may not be; human ingenuity can chip away at them. We will never have a perfect world, but it’s not romantic or naïve to work toward a better one.

    RICHARD YOUR STEM CELL THING IS WORKING TOWARDS A BETTER WORLD!!!

    • Richard November 20, 2014 at 7:20 am #

      H;-

      I only can wish the same, but my low level expectations mitigate assuming too much. Certainly those of us in the trial are surrogates for the many. By the way, my son, Ben, just interviewed there for next year.

      Best,
      R.

  11. Betty November 19, 2014 at 8:23 pm #

    Wow. Than you Hannah. I needed that after a very, very hard day. xo

  12. Matt November 20, 2014 at 1:47 pm #

    Richard, I saw your tweet about expectations. The little subtle things you have notice are huge improvements even if you don’t think so. I don’t know what you have noticed but when was the last time you noticed them? Day, month, year, years ago? Keep moving forward, we are moving with you! Peace

    • Richard November 20, 2014 at 8:10 pm #

      Matt-

      Not sure. Easily mixed up. Peace to ypu.

      R.

  13. MB November 21, 2014 at 7:45 am #

    When I was getting ready for work yesterday I felt great. When I looked in the mirror I thought I looked pretty good, too. I haven’t felt and thought that way in awhile. At work a few colleagues commented that my blue sweater was a good color on me or they liked my necklace. I wore both several times before but never got that same reaction.

    It made me think that how I feel affects the way I’m perceived by others and how I see myself.

    It’s not all about having a positive attitude and outlook even though we feel crappy, which I think many of us try to do. Feeling well even if it’s only for a day here and there holds the power behind people’s perceptions of us.

    Here’s to good feeling days!

    • Richard November 21, 2014 at 8:45 am #

      I’ll drink to that, in fact, I’ll drink to anything. I think you are absolutely correct. I don’t think we can fake it, but I agree we project how we fel.

      R.

  14. Brian November 22, 2014 at 2:39 am #

    MS has subtypes (i.e., RRMS, SPMS, PPMS, benign, etc) with varying degrees of symptomatic problems. In general, most patients experience trouble with their mind & body that is not fatal and becomes an inconvenience to daily living not a disability. Invisible symptoms like pain and fatigue do not elicit emotions like a wheelchair or walker might. We are a society that wants proof of EVERYTHING no matter how big or small. Some of the issues we face just can’t be posted on Facebook. You will occasionally find empathy in the masses but usually it’s a reserved admission from someone that what you deal with must be a bummer. Indeed it is.
    Have faith in yourself to weather the indifference. You will overcome and one day you will find someone who just “gets it”. That feeling will make up for all those who were dismissive.

    • Richard November 22, 2014 at 8:42 pm #

      Thanks.

      R.

  15. MB November 23, 2014 at 3:06 pm #

    Brian, I think like MS, shared feelings have subgroups too. Sympathy, empathy, compassion, pity—those of us who have disabilities are showered with all of these feelings from others at one time or another. Which one they offer us though is the difference between us being comfortable or uncomfortable.

    I read an article on pity written by Aaron Ben-Zeév for Psychology Today (2008). He hit the nail on the head in describing the difference between compassion and pity. He stated,

    “A crucial difference between them is that compassion involves far greater commitment for substantial help. Compassion involves willingness to become personally involved, while pity usually does not. Pity is more spectator-like than compassion; we can pity people while maintaining a safe emotional distance from them. While pity involves the belief in the inferiority of the object, compassion assumes equality in common humanity.”

    The article is short if you have time to read it: http://www.psychologytoday.com/blog/in-the-name-love/201008/do-not-pity-me

    So in a nutshell, I’m pro-compassion ant-pity! Now to explain that to the rest of the world.

    • Brian November 23, 2014 at 3:50 pm #

      Superlative quote, MB! I love when words translate a complex idea into a serene definition that the everyman could understand.
      A quote that means quite a bit to me is made by British Photographer, Don McCullin: “I’ve seen black and white men crying over each other’s demises, men tenderly cradling the wounded and caring. That’s what beauty is all about. It’s not about trees or sunsets, it’s about human depth.”
      Another difficult thought that should be on Main Street.

      Brian

    • cohen November 26, 2014 at 10:39 am #

      Very interesting. Thanks.

      R.

  16. Linda Lazarus November 24, 2014 at 8:02 am #

    MB
    Thanks for posting that quote differentiating pity from compassion. I expect a lot of us appreciate a thought that so clearly defines our experiences.
    Linda

  17. Betty November 26, 2014 at 10:29 am #

    Thank you MD for that quote. It brings such clarity to the relations, and impressions that we all experience. To further complicate things compassion and pity may come from the same, trusted source depending on the time and circumstances. The holidays in particular can bring out the best, and worst in all of us. Chin up. Take stock, and stack your deck with compassionate people. I am thankful this year for a lot of things, but especially for Richard, and for all of you in my cyber-life. Happy Thanksgiving to you all!

    • Betty November 26, 2014 at 10:32 am #

      MB, my apologies for the typo.

  18. Elizabeth November 26, 2014 at 12:09 pm #

    Richard,
    This may be cliche but would you be willing to start a new post with a request for what people are thankful for. Your post in response to my comment made me realize I may have an issue with perspective from the inside, not what the world is trying to project on me. I have times of strength and times of extreme grief and weakness. I realize that part of that is fueled by losing my Mom recently. She was my rock. I knew how much I relied on her for support but I was not even remotely prepared for what it would feel like to wake up every morning and feel the loss over and over again.

    I would like to try to reframe my thoughts by knowing what others are thankful for. I heard the nurse who had ebola say that she is thankful for the smell of fresh laundry coming out of the dryer. I was shocked at how basic that was. Maybe I am expecting too much and need to start with the small stuff rather than think of the big things that I am lacking.

    Happy Thanksgiving everyone.

    • Dale November 28, 2014 at 11:24 am #

      One of the toughest things when you lose your parents is realizing you’re now the grownup. But I talk to my Mom in heaven all he time. Like yesterday, what WAS her secret to stuffing? I really do hear her response. The grief comes in waves, God Bless Elisabeth.

      I’m grateful for my girls home from college, with all the words to Bohemian Rhapsody, a littany of Monty Python lines and a host of ‘true facts’ from various volumes of Uncle John’s Bathroom Readers to banter. And good beer. My husband doesn’t believe me but my legs work a whole lot better in the evening after a beer. Sometimes it really is the simple things.

      • Richard December 1, 2014 at 9:19 am #

        I used to love beer. Then I looked at my waistline.

        R.