Mind Games

Your responses to Getting the Chair prove a point I have been making, at least to myself. Neurodegenerative illnesses strike all regions of our bodies and compromise many functions in our lives.   In the end, however, these conditions become attitude afflictions fought, yes, north of the neck.

Making peace with a disease strikes me as appeasement.   That approach did not do so well in the first half of the twentieth century. I imagine plenty of shrinks would suggest that choosing not to fight the unwinnable war is a good thing. Realism in the face of uncertainty will serve us well.

I say, do not go gentle into that wheelchair.

Do I contradict myself? Probably. So what? That was yesterday, this, today. Piss and vinegar can power us forward as well as premium gasoline. All of us play mind games. That is an important part of adjustments.

Our son, Ben, received his MBA from Harvard a few days ago. The university held all commencement exercises outdoors, despite a cold, driving rain and brutal wind. We sat drenched and shivering for hours. It was pure pain. I was in a wheelchair because of the muddy grounds that had to be crossed and the distance from the parking lot. Those of us in those chairs were penned up together like dangerous animals.

I know.   Here I go again.

Shivering drenched disabled people spotted Meredith and asked her to get into photos with them.   The smile never left her face as she posed with anyone who asked. Those others in wheelchairs smiled broadly and seemed so well adjusted. Happy. Later, Ben pulled my chair out through the mud, and we found warmth in some esoteric library.

My pride had been injured, but I figured the wheelchair had spared me monumental misery. Without it, they might have found my body in the mud sometime around July 4th. I am not making the case for my own attitude adjustment, only for a modicum of common sense.

I wonder if I ever will get over myself.


17 Responses to Mind Games

  1. Amy Hunt May 27, 2017 at 8:00 pm #

    Congratulations to your Ben and to the parents, of course. Well done.

    No congrats to Harvard, which despite its glittering reputation doesn’t seem to handle weather or wheelchair users with even a little sense. I’d have been miserable.

    I am not remotely happy in a chair unless I remember to compare it to life without it. So I try to remember. I’d have broken my neck and lost some teeth and be gumming my food in bed…

  2. Jan May 27, 2017 at 10:08 pm #

    Did anyone notice the large number of replies on that last post? I think you struck a big chord on that one, Richard.

    I just started reading the book entitled, “Better Than Before,” by Gretchen Rubin and primarily about habits.

    I’m finding interesting thoughts about changing our habits to then change our lives. One stand-out sentence from the book is, “Habits make change possible by freeing us from decision-making and from using self-control.” In context, the point is that with a habit, we don’t have to think about it–we just do it. Hmm.

  3. Jane May 28, 2017 at 1:41 pm #

    Richard, congratulations on Ben’s accomplishment. You were there to watch your child receive a degree from Harvard. What a joy. You have a beautiful wife who loves you and is a popular public figure. How great. You attended a function with dignity, chair or no chair, and you likely inspired others. Good fortune abounds.

    I define appeasement, acceptance, and surrender in different ways. Appeasement is failing to act when action would have made a positive impact. None of us have done that, and I’ll bet we won’t. Acceptance is acknowledging the “isness” of a situation. Acceptance is not hopeless resignation. Surrender is akin to that proverbial fish that finds itself in a strong current. What to do–fight the current and die exhausted on the bank of the river, or go with the flow until an opportunity presents?
    The wise fish goes with the flow always watchful for the opportunity to better it’s position.

    For me, I accept that I have this ridiculous disease, and I will go with the flow until an opportunity presents. Will I give up? No. I will do whatever I need to do to make my soul’s journey a positive growth experience.

    • Jan May 28, 2017 at 4:47 pm #

      Jane, from the resident salmon swimming upstream, I appreciated reading your points, especially with issues that seem to be increasing by the week…if it’s not the weather, I am in trouble.

    • Yvonne May 28, 2017 at 10:28 pm #

      Very nicely stated Jane. 🙂

    • Louisa May 29, 2017 at 10:27 am #

      Great post, Jane.

  4. Ken May 28, 2017 at 4:21 pm #

    “My pride had been injured, but I figured the wheelchair had spared me monumental misery. Without it, they might have found my body in the mud sometime around July 4th.”

    Richard, you have talked before how a sense of humor plays a big part.

    You are correct, hold on to the humor

    I experience a lot of the feelings you mention, a sense of humor matters.

    have a good day and


  5. Jane May 28, 2017 at 5:01 pm #

    HI Jan. I think the weather makes a BIG difference. I live in the Phoenix area, and the heat kills me. But I bought a cooling vest and go out to walk with my trekking poles and my one-eyed dog anyway. Hang in there.

    • Jan May 28, 2017 at 10:11 pm #

      Thanks much, Jane. I went from skating to “only” walking, to hanging onto grocery carts to store scooters to my rollater around the house with much difficulty, and always pushing through and thinking that it will improve.


      Tonight, Charles Krauthammer is on TV–his mind and thoughts are at the forefront of my mind, not his inability to ambulate.

      Because my heart knows differently, my head is still having acceptance issues: too often fighting against the current. Hard to let go of the rock I cling to and swim. I likely will need to; it is likely a bigger issue than humidity. Thank you for your encouragement.

  6. Yvonne May 28, 2017 at 9:09 pm #

    I understand the directive: get over yourself already! It could be worse you could be face down in the mud! So am I suppose to wheel around smiling at everyone and thinking “hell least I’m not face down somewhere “. Nope, not I. I need an attitude adjustment each and every time I load and unload this stupid rollater. Yes I understand withoUt it I couldn’t get around to stores, picnics, events. That does nothing for my resentment around having to use it. So no I will not be Rebecca of Sunnybrook farms celebrating the fact I’m not face down. I’m glad it enables me to be more mobile but I hate using it and will hate transitioning to the next mobility aid. So I guess I won’t get over myself because I live in my head and these are my pictures of myself being compared to my other self that is gone. No book or other person’s perspective of dealing with illness will change that but I take comfort that other people listen and some understand the challenge as I mentally prepare. Getting over ourselves is easier said than done. Congratulations Richard on being able to be present to see your son graduate. Having to huddle in the cold and mud I guess the get over yourself thought would be: at least I’ve got a seat 🙂

  7. Jan May 28, 2017 at 10:17 pm #

    Yvonne, yes it all stinks; it is not easy. I hear you.

    And I also hear and like Jane’s take on this.

    • Yvonne May 28, 2017 at 10:36 pm #

      Yes Jane summed it up nicely. I’m feeling a little MS raw right now hence my gritty defiant response. I had my F* MS hat on these last couple weeks 😉

  8. Jan May 29, 2017 at 12:02 pm #

    Yvonne, it seems to me that you may be expressing what many of us actually can feel, frankly. I think it’s human nature to want to help other peopleu out of hard circumstances, and frustrating for all involved when we can’t.

    On a different note, ia friend whose husband works for the military posted this, and I’ll repeat it today:


  9. Christopher May 29, 2017 at 3:28 pm #

    Congratulations on your son graduating, Richard. An MBA is an excellent start in today’s world, and I wish Ben good fortune in his endeavors.

  10. Jane May 30, 2017 at 9:59 am #

    Richard has aptly asked for common sense on the part of the able-bodied public. With some notable exceptions, I find that most people regard us as anomalies.

    I took my computer to Best Buy on Saturday. I was on my scooter. I waited in line for the Geek Squad to help me while my husband shopped for new phones. The tech who looked at my computer said he fixed it easily. There was a line forming behind me, and as I loaded my repaired computer into the carry all on the rack on the scooter, the rack fell off my little scooter. It was operator error. Uh-oh.

    So, I got off my scooter, which was blocking the counter, and got down on my hands and knees to remount my rack and carry all. I could hear the murmurs of dissatisfaction from the people behind me, but I was able to get everything fixed in short order. My getting back on my feet and back on the scooter had to have been quite a sight. As I backed up to clear the area, I saw scowling faces.

    So, I decided there was only one thing to do. I looked those people straight in the eye, honked my little horn, waved, and gave them a “Sorry. Cheerio.” And away I went. As I told my dismayed husband the story, I began to laugh at the preposterous situation. Life has its moments.

    My computer is still broken!!!! Common sense be damned. We do the best we can. If that’s not good enough for some, that’s their problem.

  11. Mike June 5, 2017 at 7:03 pm #

    As usual your wit and candor prove to be spot on. Congrats on your boy that is an exclusive club. I have strayed from this blog, life has been an annoyance, timing coming across this now was serendipitous. Adjust or quit, sometimes I lie to myself about myself. What else would make you do that. It’s the length of the fight as you know better than most. I’m coming on 20 long years of adjustments and compromises. I’m 41, I can’t imagine another 20 lyears of only getting worse, sure plateaus come but never last. Someday I’m gonna look back and wish I was as mobile as I am now. That’s after taking 30 minutes to prop myself up because I was alone(thank god). But that’s the misery of it, its inability to reverse. Image taking a walk! Sorry if my view is unpleasant. I figured if I can’t complain here where everyone has some version of this tragedy. Great read thank you-

  12. Jan June 6, 2017 at 7:12 am #

    Getting out your feelings can be therapeutic, for everyone and regardless of issues. This can be a good place to do that.