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.
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.
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.