Life from a Sitting Position

We have just about done this subject to death. Lots of attitudes and ap[p[roaches. Your responses were wonderful. I am happy to say I am just as ambivalent and confused as I was when this subject was raised. I remembered a column I wrote for AARP a few years ago about two individuals who go through life in a sitting position and deal with it. Here are excerpts.
Bob Schmonsees was standing on a ski slope in Pennsylvania almost thirty years ago when another skier broadsided him, sending Bob into a steel lift. He says he knew right away. “I was not able to move,” he says quite simply. Did you regard the chair as a prison, I wanted to know.
“The situation was the prison, the chair an enabling factor,” Bob replied after a moment’s thought. Seven years after the accident, Bob realized he had been operating in denial and endured a short bout with depression. Then he got rolling again and proved he could still have a life. “I became the top ranked player over forty in wheelchair tennis.” Was that liberating? “Yes, and gratifying.”
Bob continued an avid golfer and even ventured back onto the ski slopes again, though later he realized skiing strained his shoulders. It is all attitude, isn’t it? Did you have to work at it? “No. It’s in my nature.” And your DNA. “Right.” With age comes pain. Bob gave up tennis and deals with the intestinal problems that go with sitting for so long. “I have a good life,” he says.
Then am I a wimp as I look down the road at a chair? “Absolutely not,” came the quick reply. “You are in a bad situation. You have your vulnerabilities.” Bob paused. “This would be traumatic change. There will be a loss of independence. Look,” he continued,” people make using a wheelchair worse than is, but it ain’t no fun.”
This may not happen. In my gut, I know it will. My ability to ambulate will be gone. A walker is next. The rest will follow. “Everybody is afraid. For the average person looking around and seeing people like us, the sight may cause fear, but it is not inevitable. People like us are different.”
When Allen Rucker went down for the count in Los Angeles, transferse myelitis, which some people call MS of the spine, another autoimmune disease, struck, and in ninety minutes he lay paralyzed in a hospital bed. “It was frightening.” Soon enough he was introduced to his new wheelchair, the mode of transportation he would use for the rest of his life.
“I always considered the wheelchair liberating. I never resented the chair. “My favorite recreation was to wait until 3:00 in the morning and tool around Cedar Sinai Hospital looking at the incredible art on the walls.” This was Allen’s private proving ground, his way of easing into his new life.
“Richard, with you there will be nothing sudden about this. You already are preparing yourself for what might be.” Allen paused for emphasis. “You are on this gradual course. You don’t know it, but you will find it liberating. There is true mobility in a wheel chair. It’s not a horrible thing.”
Right. “You should lighten up,” he laughed. “You may find yourself more mobile. There always will be the stigma. People will still think you are a pathetic person. There will be a sense of pity, a sort of death by kindness. You learn to ignore it.” Hard to imagine. This is a pointless game game. What will be will be. I have better things to do than play out worst-case scenarios.
And yet the wheel chair is so threatening, maybe the final public signal of unbeatable weakness and irrevocable admission that one has lost the war. I have stood up to this illness for my entire adult life and lived my way. I cannot make my peace with the finality of sitting down.

23 Responses to Life from a Sitting Position

  1. Sandy September 13, 2014 at 5:29 pm #

    Richard, you nailed it in that last paragraph.

    I have been pondering this along with the rest of you and I came to the realization that for me a chair (like the walker and cane before it) are a sign of weakness (again, for me). I try to rationalize and rise above the negative feelings but weakness is what it boils down to. Defeat.

    I also think that I tend to want to eek out every last drop of independence. The very last thing I wanna do is go to the chair too soon. The cane and walker were both put off until I could not put them off any longer. But nobody wants to go to the chair too soon. Better late than too soon I guess.

    Effing MS.
    Sandy

    • Richard M. Cohen September 13, 2014 at 8:31 pm #

      I am with you.

      R,

  2. Linda Lazarus September 13, 2014 at 6:29 pm #

    I keep trying to figure out why you think that strangers will look at you and see you at ‘other’…that these unknown people will pity you. I live in the five college area in western MA. I never feel left out. people see me transitioning from cane, sometimes I use my walker, sometimes my Segway and sometimes my manual wheelchair. People do not give me a sense of not belonging to society anymore. People are more likely to ask what I am reading than asking how I am.
    Life will go on and it will still be very interesting.
    Linda

    P.s. I had the seat on my manual wheelchair placed low and I use my feet to wheel walk. It has been very useful to do that at times.

    • Richard M. Cohen September 13, 2014 at 8:34 pm #

      I have admitted before, it is all in my head. But it is a powerful fear.

      R.

  3. Kate Aquilino September 13, 2014 at 7:04 pm #

    Linda, I love your attitude. And attitude is everything. There are no hgher walls than those we build for ourselves. Live every day with gratitude.

  4. Yvonne September 13, 2014 at 9:30 pm #

    Thanks for sharing that excerpt. The two gentlemen from the AARP article give me hope. Maybe when I HAVE to use the devices because there is no more choice if I want to be mobile I’ll have an epiphany. it’s not a end but a new stage in my life that sees mobility and independence as not so entwined that it’s frightening to think of needing a walker or wheelchair. I hope I can one day have their sense of freedom, no matter what this disease throws at me. I wonder if choice versus necessity prevents some of us from accepting the transitions to a device?

    • Richard M. Cohen September 14, 2014 at 1:00 pm #

      I think it takes a while to get there.

      R.

  5. MB September 14, 2014 at 11:05 am #

    It’s the truth in Allen Rucker’s words,”there will be a sense of pity, a sort of death by kindness,” that haunts me everyday. Even the thought of someone feeling sorry for me is enough to stop me from going places.

    I think some of my mobility transitions were motivated by my perception of how I was viewed by others. I started looking clumsy with the cane and then had to wear an AFO so my foot wouldn’t clip the floor when I took a step. I bought a black one so it would blend in with the black slacks I wore. Because of that I only bought black pants.

    The walker was next and it was fine for awhile until I started to lose function in my hand. I had to place my failing hand on the handle and because of the spasticity, it looked like my hand was in a death grip with the handle. There were times my colleagues looked down at my white knuckles, awkwardly smiled (pity?), and I wanted to die a thousand deaths.

    So then I bought a scooter. Even the word sounds juvenile, but it wasn’t THE CHAIR so in my mind that was more acceptable. It’s black, I wear my black pants, rest my bad arm on my leg, and go from point a to point b with no detours along the way. I worry that by butt looks like it’s spreading over the seat like lava flowing from a volcano. I’m not the least bit heavy, but now I know that standing coupled with gravity is so much more forgiving.

    If Freud were around and read this comment he would note that I used the word “look” a lot. Hmmm…Get me to a couch!

    • Richard M. Cohen September 15, 2014 at 8:56 am #

      Why should we care about how we are viewed by others, and how do we know? I fall ionto the same trap. Probably this is emotional quicksand. Hey, I like that.

      Best,
      R.

  6. Joan L September 14, 2014 at 1:36 pm #

    I fought my symptoms so long that I was already secondary progressive when diagnosed at 49. After falling many times due to drop foot I got an Afo. After using the AFO I had to get a cane because I was so unbalanced. After the cane came the Walker, of course. I don’t know when, but for me to be able to go swimming I needed to use the chair to get there and especially to get back after swimming when my legs would be so tired. Then I started being unable to get in and out of my car so I got a van with the help of friends and family. Soon I will have hand controls so that I can drive right out of my wheelchair. This will be the greatest independence I have felt in many, many years.

    Perspective is everything – I am pretty good at staying positive (hopeful?) and I will never give up walking. I walk wherever I can usually at the Rec Center using the balance bars trying to build my legs back up. I never give up hope that I will be walking again but I also know the independence the chair has given me and I’m grateful for that. Now I can move on to my biggest fear which is being bed bound in the future. I try not to dwell on it, but is my personal “point of no return.”

    • Yvonne September 14, 2014 at 5:28 pm #

      Joan-you just chronicled my journey. Swimming is my only exercise and I have been reluctant to go to the pool lately because of the difficulty getting in and out even with my four pronged cane. This is why I love this blog. We are all speaking in real time not sugar coating the journey. We can help each other to the next step because we say it’s Ok to be afraid or mad or frustrated along the way. Thanks to Joan, I may get to the pool soon using my Volaris rollater (sounds better than walker). Denial still but… Baby steps.

      • Joan L September 14, 2014 at 6:50 pm #

        Yvonne, I really think swimming has saved my life. I would crawl on my knees – if I could – to get there. Also read recently that floating in the water is good for balance, so I spend extra time doing that.
        Thanks to all, especially Richard, for this blog, where we journey together!

    • Richard M. Cohen September 15, 2014 at 9:12 am #

      You are right. Perspective is everything. For example, I have battled optic neuritis so many times, I am legally blind hjave not driven a car in 28 years. Cherish your independence.

      Best,
      R.

  7. Linda Lazarus September 15, 2014 at 6:47 am #

    I keep forgetting to say that amongst the other toys I have (manual chair, Segway, electric scooters and canes is the Walkaide to help with foot drop. During the summer I spent a lot of time crawling to pick produce on my farm so I do not use it often. That would squash the little computer I strap onto my leg. It is not a miracle but it saves leg energy when I am walking while I still have my walker or a cane.

    There is another such product by Bioness but I use the less stylish Walkaide because it is just one product. No parts to hold in your hand and (for me) immediately lose.

    Linda

    • Yvonne September 15, 2014 at 9:17 am #

      Thanks Linda. I am always on the prowl for new aides to keep me upright that are not complicated and as inconspicuous as possible. 😉

    • Richard M. Cohen September 15, 2014 at 9:17 am #

      I use the Bioness device. There is so much out there and more on the way.

      R.

  8. Yvonne September 15, 2014 at 9:34 am #

    Problem is these things are so expensive for many of us. An investment of 5K for a device is huge and like many of the drugs, insurance doesn’t cover anything. Decisions on what you need and what you settle for can be based on budget so it effects transitions also.

  9. Bill Garcia September 15, 2014 at 10:47 am #

    The Chair can be a demoralizing thought. I have been giving this a lot of thought lately. By the end of the day my legs will not support me. Yesterday it hit me hard whe. I left the house without my cane. My had to help to my truck because my legs were not working yesterday. I actually had tears in my eyes thinking this is what my life has come to.

    I must admit there are times I wish I had access to a chair. I have already talked to my Neuro about it but he said he was afraid I would never get out of it. I said it’s just the opposite I will use it as needed just as when we first start out with a cane. I think the chair will be liberating. Think about it, you have difficulty walking with a cane or walker. At least with a chair a you wheel around at the speed you desire. And who care what others think? It’s none of their business anyway. Don’t we realize we got looks when using a cane or walker? Well it’s no different with a chair. Sure it means our disease has a tighter grip on us but most us knew that was going to happen anyway.

    Anyway, best of luck to you Richard as you wrestle with the thought of riding in a chair. Try to find the bright spots and not the negatives. It’s always easy to find the negative in things but you have to look hard to find the positive. I wish you luck and confidence you will do wonderful.

    • Richard September 16, 2014 at 8:16 pm #

      Thanks. It is a mind game, isn’t it?

      R.

  10. Bill September 16, 2014 at 9:55 am #

    So I started, like many, with AFO’s and graduated to a single cane (I use a hiking stick (its telescopic)) and when needed, I lengthen the telescopic hiking stick and use two of them. I realize this disorder is progressive and I try to remain on my feet for as long as I can. I also have purchased a new bike as I still have balance as long as I am not on my feet…if that makes any sense. My new bike is a folding bike called a “Brompton” and it folds down to a very small size so I could fit it below a coffee table at Starbucks. In fact, it also becomes a “walker” when it folds. This bike helps me to travel with my wife to browse the less crowded back ally ways in various small towns where she like to look into store windows. I call it my wheelchair. People are always commenting on it and it fits nicely into the trunk of any car.

    • Richard September 16, 2014 at 8:19 pm #

      Sounds asw if you have your act togethert.

      R.

  11. Laurie Hanan September 18, 2014 at 12:47 pm #

    Richard, I love your blog. I appreciate everyone’s responses. I was diagnosed 11 years ago and was determined to be one of the lucky ones whose MS doesn’t totally get in the way of life. Two of my co-workers had MS and got around just fine. I hired a physical trainer to work on pool exercise. I hired a naturopath to cleanse me and put me on an optimal (vegan) diet. I got vitamin IV’s twice a week. I had all my mercury fillings removed. I literally spent tens of thousands of dollars, on top of what I was spending on medical treatments and MS drugs. I was a postal worker with 3 children, so definitely not wealthy, but determined to beat the disease.
    In spite of all my efforts, 3 years later I could not walk at all. I took a medical retirement. I got a scooter first, so people might think I just had a temporary injury. I even entertained thoughts of putting a medical “boot” on one leg so it would appear I’d met with an unfortunate accident. In my mind that was so much less of a failure than admitting I just plain couldn’t move my legs. But a scooter is unwieldly indoors, and after a few years I gave in and bought a power chair. It is so much better for opening doors and negotiating tight spaces, so much easier on my walls and doorposts! These devices cost an average of $6000 each and even with a lot of repair, they don’t last forever. I am on my 6th one in 8 years.
    I swim daily. Only 2 years ago I gave up dragging myself up and down the pool steps (with the help of a very kind lifeguard.) My neighborhood pool got a lift chair to hoist me in and out of the pool. That was a huge slam to my ego, a surrender of my illusion that I was still somewhat athletic.
    I drive with portable hand controls, but I need someone to get the wheelchair in and out of the van for me. Meaning I can’t go anywhere alone. My teenage children don’t want to spend their lives tagging along with Mom, so I rarely go any place I can’t get to by wheelchair.
    I am extremely self conscious in public places. At least I still have limited use of my hands, for now. And my eyesight. I think it’s time to count my blessings instead of bemoaning what I have lost.

  12. John September 29, 2014 at 9:59 am #

    Fantastic blog and posts.