Get Off it.

I have been thinking about our common reactions to being told what inspirations we are. That sentiment is thrown around enough that it seems to me it deserves scrutiny rather than instant dismissal. I believe we can agree there are no heroes, only survivors. I once told Elizabeth Edwards she did it with grace and dignity, both of which guided her on more than one front until her death. There are no metals or merit badges, however, and a life well lived is its own reward.
I believe many if not most people believe they are not emotionally equipped to handle a life of illness. They think they would fold and slink away. How many times have we all overheard someone say, I could not deal with that. I stifle the urge to say, what the hell do you know? You have never been tested. Maybe you are exponentially more resilient than you know.
People are scared to death of death, and a life of protracted illness cannot be far behind. We have grown used to our conditions. They have merged with our identities. We are who we are. Take it or leave it, but please cut the hero crap. All of us know the struggle to just get by. If we have families, we understand that children take cues from us. Getting it right sends an important message to young people.
When I meet someone living with serious sickness and he or she says something nice, I am puzzled. Invariably these people have their own stories and move forward with determination. They get it. We were at an apple farm and ran into a woman whose husband has MS. She was effusive. I sling words together. Big deal. I am married to someone on television. So? Our lives are nothing special. I promise you I do not know anything you do not know.
Who has time for the hero stuff? We have a lot of living to do. I only speak for myself when I silently say to someone, get a life.

43 Responses to Get Off it.

  1. Louise December 12, 2014 at 9:35 am #

    Your post triggered this “special memory” for me. When I was first diagnosed 5 years ago, a very religious friend said to me ( I am non religious and she knows it). “God only gives us what we can handle” and then she said very loudly, and as I remember it looking skyward, ” I could never handle something like that – not for me or anyone in my family”
    I hope I never lose my sense of humor.

    • rm cohen December 12, 2014 at 1:45 pm #

      I rest my case.

      R.

  2. nancy s December 12, 2014 at 10:35 am #

    And some say, ” If you want to make God laugh, tell him your plans”. I don’t necessarily believe any of this but I am trying to live a purposeful life. And my goals have certainly had to be reconfigured due to MS.

    • rm cohen December 12, 2014 at 1:47 pm #

      But don’t give up your dreams.

      R.

  3. Yvonne December 12, 2014 at 11:03 am #

    The worst for me is people chronicling people they know who have_____. Better yet asking me to talk to someone else who has____ because I am coping so well and they are having a hard time reconciling! Really? You haven`t seen me on my reconciling days lady. I am know going to be honest ,not rude, next time thanks to the discussion here. I realize now its not just me who gets annoyed.

    • rm cohen December 12, 2014 at 1:49 pm #

      It does get frustrating.

      R.

  4. David December 12, 2014 at 12:25 pm #

    Your thoughts today made me think. People say to me that they could never deal with the many changes in my life.I think a lot could a some could not,who knows? I can only say to any other person, I am just like you, except for this darn Progressive MS that takes so much and Is so unpredictable.I am a desperate person in some ways and luckily I Inspire myself and try to help others where I can.. I think it takes desperation to garnish inspiration and MS gets the job done.

    Inspiration comes in many forms from so many places, just accept it and move on, always forward, live your faith

    I agree with you Richard, there care no heroes, just survivors-and lets all help one another to keep on surviving.

    • rm cohen December 12, 2014 at 1:52 pm #

      You are on. Inspiring yourself is cool. I never thought of that. You are self-sufficient.

      R.

  5. Karen December 12, 2014 at 1:34 pm #

    Wow! Wish I’d said that, but if you don’t mind, I will steal that.
    I am forever being told I am inspirational, but you and I both know I’m just getting through the day.
    The difficulty is the trade off for giving up being inspirational is that people just pity you, and I can’t stand that.

    • rm cohen December 12, 2014 at 1:53 pm #

      Better to be ignored.

      R.

  6. Jack December 12, 2014 at 3:50 pm #

    I do not get pissed off when people say they are inspired by me. I realize that what they are really saying is that they feel they can, or should be, better than they are. Hopefully, they are using my situation as motivation to change their attitudes or behaviors. It is not about me: it’s about them! And that’s ok. I can’t, and I don’t want to, control their thoughts.

    I don’t mind people, especially children, asking me about my disability, my cane or my scooter. That is, as long as it is from normal curiosity or even reaching out for information or guidance.

    On the flip side, a while ago while I was waiting for a table at a restaurant, a man asked me, “What’s wrong with you?” I told him that had multiple sclerosis. He then responded, “You must have done something to make God very angry.” Although I am not often at a loss for words, I had nothing. It simply wasn’t worth my time or effort. I just laughed. As I said above, it was more about him than about me.

    The one bright side of my MS experience is that because of I am much better at putting things in perspective than I used to be. I also have gained a collection of funny and some not-so-funny stories.

  7. Yvonne December 12, 2014 at 4:54 pm #

    I find is no bright side to MS. Life lessons do not require an incurable degenerative disease to learn.

  8. Yvonne December 12, 2014 at 5:05 pm #

    That goes along with God gives you no more than you can handle…poppycock. Attitude and perseverance in challenging situations are not God given attributes. You are the way, the truth and the light. Yes, YOU. You learn to play the hand you are dealt or you fold. Hopefully you get better at the game the longer you play but a bad hand will always be a bad hand I would never say “thank god I got that bad hand unless I would never have learned how to play”…poppycock.

    • Jack December 12, 2014 at 7:46 pm #

      I did not say there is a bright side to ms or that I thank god that I have it. I was speaking about–as you so eloquently put–how I play the hand. I am not bitter or angry, but if that works for you, there’s nothing wrong with that. I deal with my frustration by finding humor in my interactions with other people. It helps me get through even the most difficult days.

    • Richard M. Cohen December 12, 2014 at 7:49 pm #

      There is a lot of BS loose in the land.

      R.

  9. Louise December 12, 2014 at 8:17 pm #

    I agree that the things people say often have more to do with how they feel about themselves. The ” making God angry” I think falls into the category of trying to distinguish you from him and therefore protect him from misfortune. About 20 years ago, I was in an exercise class with other young mothers. A 30 year old woman in the class fell to the ground, had a seizure and then stopped moving. While we were waiting for the ambulance many of the other women starting asking each other if she took drugs, ( no) did she smoke ? (no) did she drink coffee? (yes) oh, did she drink a ton of coffee? They were desperately trying to find a reason why it happened to her and could not happen to them. I have to say even though it was 15 yrs before my diagnosis, I recognized what they were doing and did not join in. Just sayin’. I didn’t need this lesson either, Yvonne. :-).

  10. Yvonne December 12, 2014 at 8:35 pm #

    Neither bitter nor angry just dealing with my circumstances without chasing rainbows. If you prefer kaleidoscope eyes to cope with your reality that’s certainly your right. We all have different coping mechanisms. I love rainbows I just choose not to chase them.

  11. Mike J December 13, 2014 at 11:49 am #

    How’s the saying go? “Man plans, God laughs”. Inspiration can come from anywhere, the opposite to be uninspired, boring. Life is so short even if you hit the DNA lottery and are healthy and rich, famous or royalty. It’s gonna go by fast, when it’s done who knows maybe for suffering this time, after or next time or whatever, it’s great. Something to chew on.

  12. Anonymous December 13, 2014 at 1:14 pm #

    It’s funny, in a way, that being heroic–at least in in the Classical sense–meant that you knew the ending was really bad but you moved forward with purpose anyway.

  13. Amy Corcoran-Hunt December 13, 2014 at 3:30 pm #

    I think I have handled this whole stinking situation rather well. What else would I do? Screw it up? Make it worse? I’m lucky that I have the ability and freedom to rearrange my life to make the stinking situation stink less.

    What if I didn’t? What if my job was a physical one and I couldn’t work and I had to get by on Disability? What if moving to a single floor, wheelchair friendly place wasn’t so easy for me? What if I were stuck?

    Yes, I’ve made changes and decisions and lessened the stink. This should surprise and inspire no one. I think they just don’t know what else to say.

    • Richard December 14, 2014 at 4:34 pm #

      Amy-

      You are making my point. By rising to the occasion and handling challenges, you demonstrate that you are resilient and can handle the crisis aat hand.

      Best,
      R.

  14. Yvonne December 14, 2014 at 11:28 am #

    I was digging in your archive and reread “Independent Living”. I’m always educating people on how our Medicare system is inadequate for the 21st century as people are outliving the frontiers of 20th century medical advances. Nursing homes and assisted living facilities are designed for minimal care. For the most part they are structured as end of life dungeons. Staff at these facilities think we should be happy if we can still walk talk and just generally get around. Rehab is limited. We are not prepared for people to live to 100 with a chronic disease but a functioning brain. I fear ever having to deal with the Medicare system for prolonged health care. How many people have stashed an extra $1mil for health care in their later yrs.?

    • Richard December 14, 2014 at 4:36 pm #

      Precious few, I would guess.

      R.

  15. Yvonne December 14, 2014 at 11:48 am #

    Even the government doesn’t know what to say to us.

  16. JoanZ December 14, 2014 at 2:50 pm #

    It’s laughable that I might be an inspiration to others. Most only see a portion of this real life with disability, because I don’t put it out there or because they choose not to see. My ‘inspirational’ daily existence generally is to first curse the universe, drop a few F-bombs, then remind myself to be grateful for that which still works and a husband who shows no sign of bailing. Then lather, rinse, repeat a few hundred times a day. Sounds simple doesn’t it? In truth, there is much to be pissed off about, much to be grateful for, and exhausting to manage the balance. I’d guess anyone with a pulse could say the same. Nothing special about it, it’s all relative. C’est la vie, no?

    • Richard December 14, 2014 at 4:40 pm #

      Yes. No picnic. So? I do not live in squalor or have pancreatic cancer. Life is good.

      R.

    • Richard December 14, 2014 at 4:41 pm #

      Yes. No picnic. So? I do not live in squalor or have pancreatic cancer. Life is good. Nothing heroic about that.

      R.

    • Alina Maria December 17, 2014 at 11:40 pm #

      Love this. So true.

  17. Mary December 14, 2014 at 9:22 pm #

    My co-workers tippy toe around me. Some have said “we are so proud of your strength in handling this situation.”
    One thing they can all,see is how bad I feel. Sucks bad

  18. KG December 15, 2014 at 6:44 pm #

    When I was young I had an aunt that had a stroke. She slurred her words and walked with a cane but she still sang and danced when we were at family gatherings. She was inspiring because she showed everyone that it was possible to have a fulfilling life even when dealt a crappy hand. This has helped me deal with my own illness. I do what I have to do to make it through each day and I try not to dwell in the negative. I know eyes are on me wherever I go and I try to be inspirational. I want people to see me and realize health is everything. I want young people to see that life isn’t fair and to not take anything for granted or play the victim card. And if I’m not inspirational that’s okay too. I have a life to live.

    • Richard December 16, 2014 at 7:50 am #

      You teach a valuable lesson by example. Just living your life says it all.

      R.

    • Richard December 16, 2014 at 7:51 am #

      Kudos. You teach a valuable lesson by example. Just living your life says it all.

      R.

  19. Geof December 16, 2014 at 10:57 am #

    I frequently think of Wayne’s World’s “We’re not worthy!” whenever somebody plays the inspiration card on me. As for me, I usually just tell them I feel inspired by my kids. If three year old children can handle as much as we have asked our kids to handle, how can I do less? I always say I have learned so much more from them than I can ever teach them. In truth, I think most of my inspiration comes from my kids with their unsullied perceptions of reality and trying to reconcile their thoughts with my own.

    • Richard December 17, 2014 at 11:38 am #

      An inspirational thought.

      R.

  20. Christopher December 16, 2014 at 11:24 am #

    @KG, I know exactly what you mean. I don’t think very many people get it, though, young or old. It’s so very important, and I should know because I was once one of those kids. I was a virtual 42nd Street sandwich board walker of the “that won’t happen to me, that happens to other people” group who then finally ‘get it’… and we’re a growing contingency. There should be a 12 step program for that. Funny how devastation can bring the real world into our own bedrooms. The last refuge of where we can hide from it.

  21. Nancy Cincotta December 16, 2014 at 12:25 pm #

    I always respond saying what choice do I have? This is it i have no other choice, I have a family and must continue to be as strong as possible.

    • Richard December 18, 2014 at 7:02 am #

      A truth for many of us.

      R.

  22. KG December 16, 2014 at 6:15 pm #

    I didn’t fully “get it” til I got sick myself. I don’t think anyone can “get it” til they live it. That’s why people always say they don’t know how they could handle living with chronic illness. No one can fathom that til they’re in the midst of such a life. I can’t fault people because I thought the same thing long ago. To live a productive life, the only choice is to wake up every day and deal with the hardships that may be encountered that day. But some people clearly don’t make that choice. They choose to not fight the fight. And I “get that” too. With or without chronic illness, everyone is different.

    • JoanZ December 16, 2014 at 7:36 pm #

      KG, you’re singing my tune. I find that when you know you don’t get it until you live it has made me less judgemental and more compassionate. It certainly shuts me up when I have an opinion and accept that I will never know what it’s like to be black, or male, tall, right handed or a parent (I’m a short, white, female, left handed, childless person with MS). That’s all I have any business speaking about!

  23. KG December 16, 2014 at 8:01 pm #

    Joan, if I weren’t right handed we’d nearly be twins!

    • JoanZ December 17, 2014 at 7:03 am #

      Ha! We may get there eventually – my left hand’s usefulness is eroding with this lovely disease, so some days I try right, often with comedic effect. A sense of humor is required equipment.

  24. Louise December 17, 2014 at 9:52 pm #

    Just read this quote in the NY times by the author of a novel about Alzheimer’s disease “There is a stigma with any disease of the brain. It’s not like the heart or the kidneys. It is something that is wrong with YOU”. Well, goodnight everyone,

  25. Bill Garcia December 18, 2014 at 1:22 pm #

    I most certainly don’t see myself as a hero! Now that I am walking with two canes I have had to learn how to do certain things on my own, such as carrying as glass from the kitchen to the den. If people draw inspiration from from that so be it. I’m just trying to adjust to living my life. I, like the rest of you didn’t ask for this dreaded disease but I have had to learn how to live with it. I am trying to inspire myself saying you can do it just put your mind to it and you will figure it out.

    My coworkers have told me they admire me for continuing to work. Seeing hat I go through everyday. But I dare say they do not consider me a hero and I do not want to be a hero. I just want to take this one day at a time and live me life to the fullest. At least as full as MS will allow because we all have THOSE days!!