I do not feel real. There is a disconnect between my body, which does not feel good, and my mind, which does not feel good.
It is six in the morning. I am listening to Chopin’s Nocturnes; I am beginning to be not unhappy, but capable of realizing happiness will come.
My body feels as if it were hit by a Mack Truck—a brand new red truck exactly like the one friend Philip Moery and I saw just as it was driving off the assembly line lot–packing tons of raw power, initially a frightful yet beautiful sight.
All right, maybe the truck that hit me wasn’t red, but it still hurts.
The fact that everything hurts is mitigated by the fact that I am no longer in excruciating pain the way I was two weeks ago.
The pills helped but not enough.
I took more pills and they did not help enough.
The pills caused my gastrointestinal system to go on strike—descriptions I will spare you.
Yes, I realized my life had been saved as a consequence of the successful operation that not-so-appreciatively was making me wonder at my sanity to willingly submit to the aftermath of this surgery. Grappling two contradictory thoughts in my medicated head: The first was: I am glad to be alive. The second: I wish I were dead.
The glad to be alive prevailed throughout but sometimes only by a hair.
Now, I am back at State College PA where I live. When I was in New York thinking about State College, I was in dread. The number of procedures required to get from there to here seemed overwhelming. Who, I wondered, was going to take apart my rear wheel drive scooter, my travel scooter, and my wheelchair and put them in the car?
At every step [sic] of the way, there were how-to-get-home questions ultimately only I could answer.
Dewy-eyed optimists might say that my problem solving was commendable because it was helping me reach my goal of saving my life.
Devastated, late in August, the problem-solving took on a distinctly unhappy feel. The problems had to be solved. I did not want to solve them. I had no choice.
Upon arriving at State College, I was so relieved to be home. I had worried that everything with be dirty and a mess (on target), but it did not matter.
I no longer needed to receive permission to go to the bathroom and follow the American Cancer Society’s Hope Lodge rules requiring that I not bring my coffee from the common kitchen to my room.
Now, I can drink coffee as I type this and go to the bathroom without the nurse’s saying, “No.” No nurse. No No. Alone at last.
Who am I alone? I am a 65 year old paraplegic (an active paraplegic) recovering from major surgery. It will take me two weeks more to recover to the point where I feel alive, an explication I will reserve.
I do not want to see other people. Slowly, I am emerging from this hermitage—going across the street for a quick Mediterranean plate with extra baba ganoush, inviting my friends to see me one-on-one and for a limited time only.
My body is not working well but is getting better. The key barometer to my well-being is the ability to transfer. Before surgery, I leapt out of bed and onto the wheelchair effortlessly.
Now, getting to the wheel chair is harder.
I do not fall.
I am weak.
While I am getting stronger, I really do not want to be outside home much until I master this key factor in being able to take care of myself, viz. transferring as effortlessly as before August 8.
It is happening.
In some ways, I am surprisingly patient with myself.
Take for instance transferring from bed to wheelchair.
I methodically bend down and double check the wheelchair is locked in place.
When I put my left foot on the floor, preparing to swivel into the wheelchair seat, I check and double-check every move.
The consequences of falling; indeed, of falling frequently, is straight to the nursing home—the county home called Centre Crest; I do NOT want to go there.
Part of me is mindful of consequences.
Before I discuss my emotions, which is the primary cause of my writing this posting:
The rank of football-rally-style cancer optimists is distressingly high.
Two apartment buildings where cancer patients recover or die are named Hope Lodge and Miracle House. I would prefer to have my conversations about hope and miracles with God and not rely on some seemingly uplifting name to keep my spirits up.
This may be one of many unfair observations, which I will not spare you now or later.
Hope Lodge is run by the American Cancer Society and through its generosity provided my caregiver younger daughter Amelia had a place to stay when I was in the hospital and where she could be next to me when I returned to recover.
Hope confronting me everywhere….
One consequence of cancer survivor ebullience is the: Make every day count mantra.
The first every day I was somewhat functional upon my return, I had to fill out overdue forms–lots of forms from trying to obtain money to ensuring my continued employment.
Forms. Forms. Form
Every day I filled out forms I asked myself, not entirely ironically, whether I had survived cancer to fill out forms.
Yes, I realize that after I fill out enough forms, I can scoot to the florist on Allen Street and smell the yellow roses.
I wrote a book about the importance of emotions while surviving cancer. https://joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/
I know something about the subject.
This time, I prepared to protect myself emotionally and to provide my caregiver(s) with relief, orchestrating pleasant things to do.
Elsewhere, I may detail the preparations. Right now, trust me. I worked long and hard on emotional preparation.
The big surprise to me is that I went crazy after the operation rather than before.
The craziness took the form my issuing barking mean and aggressive orders at my two caregivers, my daughter Amelia and my sister Sarah. I was polite to strangers.
The craziness reminded me of the time 20 years ago at the advice of the Chair of the Oncology and Chair of the Neurology Departments at the Chapel Hill Hospital for the University of North Carolina.
United in their decision both Chairs decided to put me on high doses of steroids to see whether they might restore my ability to walk. They did not think it would work and said so. However, steroids were the “miracle drug of the 1950s” and sometimes steroids have unanticipated positive consequences, so: “Why not? We have nothing to lose?”
Except my mind. I found myself saying terrible and abusive things—words I did not mean and knew I did not mean even before they formed on my lips, but words I was powerless not to utter because THE DRUG MADE ME DO IT.
Last week, I asked a secretary at the Department of Architectural Engineering whether she had a similar experience. “Yes, when my kids were born. I said awful things to my husband. Awful awful things.”
The craziness appeared in the middle of the night as I was lying in my hospital bed, coughed, and my body felt as if it were split in two.
The craziness appeared as a wave—a fluctuating wave increasing in intensity until it reached a high and unpleasant peak before returning me two days later to reality shaken, not quite mindful of what I had said except that it was THE WRONG THING TO SAY.
My sister Sarah told me on the phone on Thursday her feelings about me when I was crazy. “I knew that you were suffering. Yet you were mean and impossible to be around. I decided I never wanted to see you anytime again soon. If I saw you at your funeral, it would be too soon.”
Daughter Amelia asked: “Why were you so mean to me?”
The expression I am in the dog house comes to mind.
- I was crazy.
- I was out of my mind.
- I did not realize what I was saying when I said it and I did not mean what I said.
- I had been through extraordinary pressure.
- I went out of my mind.
My mind has returned.
I am the brother and father you love.
Copyright © 2013 by Joel Solkoff. All rights reserved.
2 replies on “How do I feel?”
Did you ever read my post about Lee?
You write: “I do not feel real. There is a disconnect between my body, which does not feel good, and my mind, which does not feel good. It is six in the morning. I am listening to Chopin’s Nocturnes.”
I think I see your problem. Of course you are disoriented — you are listening to nocturnes in the morning. What do you expect? Nocturnes are supposed to be listened to at night. Try the polonaises in the morning — you should feel better soon after making this simple adjustment.