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Feb 24

Being In My Body

In Brief— A personal account of what it’s like to be in the body of a person who has experienced the deprivation of previously normal bodily functions.

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In his book Mortality, Christopher Hitchens presented a lucid and brutally honest personal view of what he was experiencing and the circumstances of his cancer as he approached his final moments on this mortal coil. Love him or hate him, his was the mind and the life of a brilliant and complex man who was unafraid to express his often-controversial views.

Far be it from me to compare myself with the incomparable Christopher Hitchens and his dreadful affliction, but it has occurred to me that some readers might be interested in what I am experiencing and what my thoughts about all this have been. Though this may read as a “Poor Me” recitation, it is simply an expression of what it’s like to be in this body after a life of extraordinary good health. Put another way, it shows how I have adapted.

No, it’s more than that. In my low moments I have said to my positive and ever-encouraging wife, “You don’t know what it’s like to be in my body.” She tells me that she understands, but that’s too easy to say (that reminds me of a joke, but it seems inappropriate here). It’s simply impossible for someone who has not been in a similar situation to understand that there are times when I feel weak or bone weary or hurt and I just want it to be the way it was before. But it will never be the way it was before. Time alone is tugging at me. Still, I have adapted.

The Background—

In the fall of 2011, I suddenly experienced a bout of extreme dizziness that had me reeling about like a drunk. After three days of intensive testing at the local hospital, the doctors informed me that I had a walnut-sized meningioma tumor sitting atop my brain stem at the back of my skull. A specialist at Umeå Hospital, a teaching hospital that’s part of the major university in northern Sweden, told me that the tumor would eventually invade my brain and cause considerable damage. My instant response was, “Take it out!”

I have since wondered if taking it out as soon as possible was the right thing to do. It is sort of like the politicians who feel that America must undergo painful and damaging austerity now rather than wait until 2030 when conditions might have improved. Pain now versus pain later is the way they formulate it. But that may be wrong.

On November 23, 2011, in Umeå, the tumor was removed along with part of my skull (Yikes!). I am told that I almost died from non-stop hiccups (!) that tired my heart to such an extent that I had to be resuscitated. I have no recollection of all this. It was nothingness. Good thing!

The morphine to kill the pain led to hallucinations, not fun ones but too often paranoid hallucinations that were as real to me as everyday reality. It wasn’t until I was back in the stroke unit at Östersund’s hospital that I became aware of my surroundings. There I stayed until being transferred to the local rehabilitation center for three months until I was sent home to continue rehabilitation on my own.

Insult to Injury—

In late September of 2012, I awoke one morning with severe abdominal pain. Off to the hospital again. Emergency surgery removed a perforated diverticulum. I am now the proud owner of a colostomy apparatus about seven inches below the PEG through which I am fed three times a day. Needless to say, I have become intimately familiar with the workings of the human intestine. Both are an interesting part of my daily life. Though I envy the routine enjoyed by other healthy humans, my enlarged prostate (non-cancerous, thank you) has ruled out reversal surgery. If it isn’t one damned thing it’s another. Ah, the joys of aging. So that’s the way it is today.

Here’s the recitation of problems:

  • I have a limited ability to swallow. Thanks to two weeks of intensive therapy, I can eat/drink (!) coffee, juice, pureed soups and fruit…very carefully to avoid inhalation pneumonia. A brush with that bugaboo makes me very cautious. As noted, I am fed through a PEG, a low-profile plastic gadget that nestles snugly on my belly. It has to be cleaned every day and changed every three months. It occasionally hurts and bleeds but it sure beats a nasal feeding tube.
  • As you can imagine, my social life has evaporated. Until this happened, I didn’t realize how much of one’s social life revolves around eating. Now, seeing others eat when I cannot is torture, thus I absent myself when Ewa eats or on those few occasions when we have company over for dinner. Curiously, I have become interested in collecting appetizing recipes. You should see the stack. It’s called “obsession.”
  • Since the operation, my voice is a cross between a whisper and Satchmo. People find it hard to understand me and some treat me as if I’m mentally deficient. That’s genuinely irksome!
  • I am three-quarters deaf in both ears requiring that I wear two hearing aids that provide attenuated sound. TV, music and movies are no longer a part of my life, but I can watch some shows (sort of) on my computer if I boost the volume. In fact, the computer is a big part of my life. This blog is one example: Bloviation Central.
  • The left side of my body is partially numb but also strangely hypersensitive, a phenomenon that has taken place since late in the period of rehabilitation. The numbness is gradually increasing and now includes my right arm and hand. The neurologist is stumped; I blame the operation.
  • My balance along with the dizziness makes me walk like I’ve had about three too many. Furniture, doorjambs and my walker are what I rely on to stay upright. My teeth feel divorced from my body. This probably relates to the numbness. I haven’t chewed since the operation, so the teeth hurt when I simulate chewing. Reminds me of my youth after I had my braces tightened.
  • Because I can’t swallow like ordinary folk, I must spit often. I have a spit bucket (spittoon?) for this purpose and a spit bag for those occasions when I’m out. It’s disgusting, but it keeps me from choking on my own saliva. Drooling, particularly when I’m asleep, is a regular occurrence. I must be gettin’ old, Jake.
  •  Because I have to spit to keep from choking, sleep is disturbed and not as deep as normal.

This is what my life has become since the operation in 2011. Unless a person has experienced a similar situation, it is impossible to know what’s like to be in my body. But as I have said, I have adapted to the physical stuff now. I’m not happy about it, but what is, is.

That’s my body, but on the positive side, my brain is still hitting on all four…well, at least on three and three-quarters. Lying quietly as I’m fed, I now have time to ponder my positions on issues, the USA and the world at large. This requires honesty and a healthy measure of personal integrity for anybody. My strong advice is that you take some time every day to quietly reflect on your life and the lives of others. That’s what I have derived from all this. That and a little nap feels good now and then.

10 comments

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  1. Dave Meyers

    I can connect only partially with your plight Don. With the right side of my own body feeling alien to me and slightly out of my control, I can understand a little of what you must be dealing with. My daily tasks, body movements, and physical requirements that where once taken for granted and performed with ease, are now taxing and difficult. Hope of improvement as the months go by has faded to resignation. We have no choice other than to accept, as you say, “what is, is.”

    The constant encouragement that I receive from Marilyn has made a big difference in my world. I have tried to remain strong as much for her as for myself. But just as Ewa cannot fathom what you feel, neither can Marilyn fully understand my daily struggle.
    It may be true that our lives will never be the same, and could either of us ever have imagined our worlds being turned upside down in this way? But aren’t we both fortunate to have the gift of their love, care, and concern?

    Your condition is far worse than mine I’m afraid dear friend. And I will admit that you have provided me with some of the inspiration to face and adapt to my new reality. I salute your perseverance and strength.

    I certainly have a new appreciation for the gift of having had a life filled with great adventures, achievements, and experiences that I can now look back on. But, I’m doing my damndest to make the best of this latest ‘experience’. Even though it’s hard for me to believe sometimes that I will ever really add to my memories…. I plan to try like Hell. How about you?

    1. Don Bay

      You are my inspiration, not least because you have endured physical situations twice mine but because you have such a positive attitude. You have given me some of the greatest experiences any person could enjoy: hang gliding and flying sailplanes not to mention the incentive to push myself to match your skills and to continue the daily struggle to get the most out of what I have. Thank you!

      I leave you with the thought of my favorite comedian George Carlin. He has posited the proposition that we should live our lives in reverse: get the aches, pains and debilitation of old age out of the way first, proceed through our middle age with vigor, embrace our youthful energy and enthusiasm, enjoy being pampered and cared for as a baby, and end as…an orgasm! I’ll drink to that!

      Happy Birthday, Dave! May you have many years of hikes in beautiful Colorado.

  2. Dave Meyers

    I’m familiar with Mr. Carlin’s observation on aging and in a way his proposition is almost true …..we have a good chance of ending up in diapers in either scenario……it depends.

    1. Don Bay

      Fingers crossed that we never end up in diapers. The “Depends” is a good punch line.

  3. Shelley Stockwell-Nicholas

    Dear One
    Thank you for sharing this.
    May I publish it in its entirety in our Hyp News letter?
    It is profound and makes me love you even more.
    Shelley

    1. Don Bay

      It is to be hoped that your readers will avoid the debilitation I now live with, but feel free to include the piece in your newsletter. Fingers crossed that your readers can take away something positive from the recitation of difficulties. Certainly, the problems have provided me with the opportunity to reflect on how much better I have it than many. If you want real courage, Christopher Hitchens’ book “Mortality” provides an abundance of that. I recommend the book. And many thanks for the kind words and the years of warm friendship.

  4. Linda

    I didn’t get any “poor me” from you in this blog. Your signature “Stay healthy. Stay happy” was shortened to “Stay healthy” after your operation and complications in messages to me. It was then that I began to wonder what it was like to be you. I knew how physically fit you had been. Your body equaled your mind. I beg to differ when you say “If you want real courage Christopher Hitchens’ book MORTALITY provides an abundance of that,” not that I doubt his courage. I believe it takes courage to adjust to a lifestyle so contrary to what you were accustomed. It takes courage to write so openly about all the things that you do in Debaytable. How lucky I am that you are who you are….that you have the courage and strength to adjust because I gain so much from your being. You touch my heart and soul, Don Bay.

    1. Don Bay

      I encourage you and other readers to read Hitchens’ MORTALITY to see what real courage is about. It’s the suddenness of the change that has given me the biggest problem. And by way of an update, late last week the ENT doctor noted an improvement in my ability to swallow. As of four days ago the therapist has me practicing with small amounts of juice and water in the mornings and evenings in addition to the regular modest lunch of pureed soup, fruit and coffee. So there is progress on at least one front. I’ll take all the progress I can get.

  5. Gunnel Mattsson

    Thanks Don for charing so openly your thoughts and your feelings. As you say it´s all beyond understanding – but helps a tiny little bit to imagine your life today. I understand that you have no choise, but still your strength is very impressing. I often think of you -and Eva – and
    it will be so great to see you both in your home in a couple of days!

    1. Don Bay

      Along with all the restrictions in my life since the operation, there are benefits that never would have occurred to me. Most important among them, I get to quietly reflect on life three times a day while I’m being fed. I miss our camaraderie, but there are unexpected compensations. Thanks for being a friend as well as taking an interest in what I have to say as a result of my thinking sessions. It will be wonderful seeing you and Bo.

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