Addendum

I stood around at a really boring party, and a good friend leaned in and said, “See that woman in the blue skirt? gesturing to someone all the way across the room with her back turned. “I think she’s coming on to me.” You have one hell of an imagination. I answered. That had to have happened close to thirty years ago.
This last post reminded me of that story only because readers shared their less preposterous reactions to all the nonverbal signals they get from strangers who are seeing them in wheelchairs. When I am stuck in a chair at an airport or large lobby, at a graduation or athletic event, I read the minds of everyone who glances at me or even fails to look my way.
Of course, I assume the worst, reading into blank stares or words never spoken. Of course I am projecting, playing out a script that reinforces my inability to handle my own vulnerability. I become hypersensitive and will demand, what did you mean by that of someone standing in silence. Of course, I overstate, but my point is simple.
Perhaps many of us tilt to one side from the weight of that damned chip living on a shoulder. I, for one, know I can be trigger-happy. Demons are never good for our mental health. One of numerous challenges for us is to keep our heads and senses of humor. When strangers spew venom and utter ugly thoughts, however that is different. It is not paranoia when the bastards really are out to get you.

22 Responses to Addendum

  1. Linda Lazarus October 1, 2014 at 4:39 pm #

    Great post. “IT” is almost never about us. Whether the it is an apparent glare, snarl or word.

    • Richard M. Cohen October 2, 2014 at 7:22 am #

      Agreed.

      R.

      • Cathy December 10, 2014 at 3:43 pm #

        I was diagnosed with MS after the birth of my 2nd child, but had symptoms after the first, but wasn’t diagnosed. My husband and I don’t travel much at all, but wanted to see Celine in Las Vegas a few years ago so we booked a 4 night trip. I had called ahead to the Bellagio to see if they had a wheelchair for my use so I wouldn’t have to bring mine. They said “yes, of course”. They didn’t. I had to call a local mobility store and rent a scooter. On the way home, we’re on line getting ready to board he plane when my husband looks down at the tickets in his hand and realizes our seats are not even in the same aisle. He left me in an airport wheelchair on the boarding line, while he went up to the desk. I could see his hands moving and the woman shaking her head no. Then everyone was boarding and all the people were walking around me in the wheelchair looking at me like I was a zoo exhibit. A man and woman on line were nice enough to give us their seats that were together which was very nice of them. I haven’t been on a plane ever since that happened.

  2. Gala October 2, 2014 at 7:37 am #

    You don’t think they are looking at you because you are famous? I was…

    • Sally October 2, 2014 at 11:43 am #

      I love your diabolical sense of humor.. And yes, people stare because they know you,,,,silly.

    • Richard M. Cohen October 2, 2014 at 12:57 pm #

      I am not famous and you were what?

      R.

    • Richard M. Cohen October 2, 2014 at 12:59 pm #

      Not famous.

      R.

      • Alina Maria October 11, 2014 at 8:50 am #

        Say the famous man…

  3. Nancy October 2, 2014 at 3:26 pm #

    I’ve learned to stop feeling like the victim and feel a whole lot better about myself when using a scooter or walker. When I was “normal” I didn’t stare at people in wheelchairs. Why was I feeling like they were staring at me? I was afraid of being treated badly, but never was. I find people to be very helpful – no pity – just a desire to hold a door or wait patiently as they follow me through a door. I find people sometimes staring and find out they are curious about the particular brand of scooter I use. They know someone who needs one and have questions about weight, transport, etc. I find myself talking to some very nice people that I never would have had a conversation with. It’s almost never about me. I’m learning to get over people “staring” at me. Most have better things to do.

    • Richard October 4, 2014 at 9:41 pm #

      I find people all different. It is a mstake I topo make to lump then all together and pass judgement.

      R.

  4. Jeff October 2, 2014 at 4:17 pm #

    I agree that you are not famous from the “A level celebrity” standpoint (now your wife on the other hand…), but I am sure you get recognized more often than you realize.

    Regardless, I thought this was a great post. We ALL get wrapped up in our own thoughts where we are the center of the universe. I still walk mostly unassisted but certainly not “normally” – I stumble off balance occasionally, weaving left and right like a drunk. As I do so, I find myself constantly dwelling on what others must be thinking. But the truth is, many of them aren’t giving me a second thought, they are wrapped up in their own worlds. I certainly do not walk around dwelling on each person I see…

    The crux of the issue is really how we consider ourselves. Do we see ourselves as less than? That is something we can (and should) do something about. We should work on loving who we are, that will get us closer to achieving happiness.

    • Richard October 5, 2014 at 12:05 pm #

      I think you are right. Our own self-image goes a l;ong way in dtermining how we think others see us. My solutrion, by the way, is not to care. At least so much.

      R.

  5. Jan October 3, 2014 at 2:48 pm #

    oooh, I can relate to most of that. (And I’d rather have someone ignore my issues than be overly helpful–but it can inspire me to be more humble, to understand instead of being rattled… and also to educate).

    “Matter-of-fact” type of help is great, as with that atty. mentioned in an earlier post. “Just ask” is a good motto for anyone (that includes me). “Forget that airport wheelchair assist,” I thought to myself as I told my husband, “I’ll do that when I get there, if needed.” (…But ever so conveniently did not define what “if needed” means to me).

    Recently, a gentleman with whom I had been chatting across the airplane aisle and who I asked to lower my overhead suitcase (aware of my health issue and Richard’s and Groopman’s books/blog en route in some good discussions) then rolled both bags of mine all the way to the security exit (even though he had about 15 min. to catch a connecting flight). It was the WAY he said he’d keep going… kind, and matter-of-fact. He didn’t need to do that, but I was fine with it. Likely because he was matter-of-fact and not expressing undue pity. I was just someone he was helping, and I was okay with that. It’s all about perspective — of others, and of my own.

    Nice response, Jeff… I agree that how we ourselves view ourselves, and then respond (to others or in thought), is critical. I recall some quote, “No one can make you feel inferior without your consent.” (E. Roosevelt, Google tells me).

    • Richard October 5, 2014 at 12:08 pm #

      Nice story.

      R.

  6. Bill Garcia October 3, 2014 at 6:18 pm #

    I have had some rather fascinating conversations with people because I use an aid. When they find out I have MS they start asking question after question wanting to know more about it. I have found people to be very courteous while out in public. Such holding doors open, allowing me to go first or helping me if I’m distress.

    In the times I have been in a chair and I catch those quizzical looks as if to say ” What are you doing in that you look fine to me ” I fire back with the old ” What haven’t you ever seen someone in a wheelchair before “? I try to send that look with a much ATTITUDE as I can. They get the idea because they always look and away. So I feel like I win the battle of looks.

    Bottom line is I don’t really care what other people think. If they really what know I will be more than willing to have them take my place. I’m more than certain they will tuck tail and run.

    GREAT POST!!

    • Richard October 5, 2014 at 12:10 pm #

      Try laughing.

      R.

  7. Yvonne October 4, 2014 at 9:30 am #

    So let me go from a bit of a different perspective. As someone who uses canes,rollators, scooters in grocery store and wheelchairs in airports I stare…at the people who use these aids for convenience not for necessity. For example people who use handicapped placards “inherited” from a relative or bought on internet to get that closer spot at the mall and walk right into the store, I stare. People who get wheelchair service to skip the lines and then get up and walk with no problem, I stare. People who walk over and grab the last scooter at Target-are they fat and lazy or disabled, I stare. I hate using all these devices so it is almost incomprehensible to me that anyone would choose to use them. So I stare wondering “do you really need it or are you trying to propagate a fraud for convenience”. I’m under 60 and used these devices ONLY when needed, which is getting to be more often than not. I look healthy outwardly so often I wonder”are they staring wondering the same about me?” Guess we’ll never know what makes people stare. It’s all rooted in curiosity. The majority of people are so wrapped up in their own day they pay us no mind other than opening a door or helping with a bag so they can hurry their process along.

    • Richard October 6, 2014 at 8:04 am #

      I think you are conflating different issues. Using devices for whatever reason is no crime. The use of a handicapped parking permit by a healthy person ids.

      R.

  8. Hannah October 5, 2014 at 3:57 pm #

    Thank you for sharing this post. I think we ALL assume the worst when someone gives us “a look,” even if we aren’t suffering from an illness like MS. The philosophy that I try to adhere to is: You can’t really read someone else’s thoughts, so don’t try and bother. Save your energy for loving your friends and family.

    I took up the sport of rowing because a badly fractured foot did not allow me to continue long distance running. Rowing changed my life because it is a beautiful, technical, grueling sport. But it changed me more so because of the people I met who also row in Boston. My boathouse-mate has MS. Her strength of character is so powerful, it makes me want to cry every time we talk because she is so mesmerizingly strong…nothing can stop her. She currently is doing well in the progression of her disease…so much so that she is on the US Paralympic Rowing team (they just placed 6th in the Worlds in Amsterdam). She is fearless and uses each day as best she can.

    I appreciate what you share on your blog because it generates lots of different perspective about MS, from those who have the disease, to caregivers, to friends. Thank you for creating a platform.

    Finally, I don’t use Twitter but I can see your tweets on the side of the page. I am 100% serious when I say some of them are like poetry. Frame them, and read them every day.

    • Richard October 6, 2014 at 8:10 am #

      Thank you. You are very kind. Your friend sounds like a wonderful role model. I will bet she is a happy person.

      R.

      • Hannah October 16, 2014 at 2:53 pm #

        Like anyone who struggles with this disease, some days are tougher than others for her. I actually found out that she had MS long after I knew her. One day when she was using her cane at the boathouse, I asked her if she had injured herself training. She told me without blinking that it was just her MS was flaring up that day. She is partially paralyzed on her right side. An Olympian at age 30 with MS…maybe super-human? Or is the strength in her head? She never seems to dwell on the difficulties from the past, and worry about the ones inevitably barreling down the road towards her. Why bother when you’ve only got one life?

        She’s four years older than me, so confident in her life and with the love she gives to others. Why does confidence and happiness escape me so easily when I have good health, a good job, and family?

        As for being happy…it is all about perspective that makes one happy, right? So, yes, I think she is happy. I hope you are, too.

  9. Sandy Martin October 11, 2014 at 2:18 am #

    My husband, who was diagnosed with Primary Progressive Multiple Sclerosis, requires a wheelchair or a scooter. I find that when we are talking to people that we don’t know, the people look to me & ask me all the questions, as if my husband wouldn’t understand. I just smile and very politely redirect the question to my husband. We go to restaurants & the servers will ask me what he wants to order!