• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer
  • Home
  • About me
  • Contact

Joel Solkoff

High-tech housing for the poor, disabled and elderly

Chinese (Simplified)EnglishFrenchGermanHebrewItalianPolishPortugueseRussianSpanish
  • Disability and Elderly Issues
  • Food
  • Architects for Change
  • Joel Solkoff’s Resume
  • Joel’s Books
You are here: Home / Disability and Elderly Issues / How do I feel?

How do I feel?

September 1, 2013 by joel 2 Comments

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.

Everything hurts.

++++

Amelia_Russo Office

++++

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.

Inhale.

++++

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.”

++++

Sarah_close

++++

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.

Forgive me.

I am the brother and father you love.

Remember me?

FrankSinatra

–Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

Share this:

  • Click to share on Facebook (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to print (Opens in new window)
  • Click to email this to a friend (Opens in new window)

Filed Under: Disability and Elderly Issues, My kidney cancer Tagged With: Amelia Solkoff, American Cancer Society Hope Lodge, crazy, emotional effects of cancer, Joel Solkoff, kidney cancer, Memorial Sloan Kettering Cancer Center, Miracle House, pain, Sarah Schmerler, surviving cancer

Reader Interactions

Comments

  1. Clif Freedman says

    September 1, 2013 at 11:54 am

    Did you ever read my post about Lee?

    Reply
  2. Hadley V. Baxendale says

    September 1, 2013 at 3:03 pm

    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.

    Reply

Leave a Reply Cancel reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Primary Sidebar

Current

Disability bathroom design

September 3, 2020 By joel

Covid 19 has accelerated the need for a new utilitarian architecture: Architecture for the vulnerable ( like me)

August 19, 2020 By joel

Covid-19 Architects: “We Who Are About to Die Salute You”

August 6, 2020 By joel

Covid 19 impasse: Why architects need to know how a member of the US Congress must be expelled by the end of the month and how that relates to building emergency housing at a time when its absence is deadly and dangerous

July 23, 2020 By joel

John Wayne don't run away

Rain: Butch Cassidy and the Sundance Kid

July 5, 2020 By joel

Theo van Gogh’s The Interview

June 27, 2020 By joel

Recent

  • Ani Ma’Amin: This is what I believe
  • March March from The Chicks: My Personal Anthem
  • 建筑师注意:美国新冠状病毒死亡人数将会激增;你们必须为穷人建造住房
  • I am now a card carrying member of the National Organization for Women
  • God is not on President Trump’s Side; God is on my side
  • The late great James Baldwin on racism in America
  • COVID-19 Updated Information
  • Sensuous Françoise Hardy, Sixties icon, is now 76 years old
  • Mandarin Chinese numbers 1 to 10
  • FOOD: When leading means following the crowd
  • US Representative in Congress Val Demings, Democrat, Florida must be our next Vice President. Must be.
  • Alizée
  • Zimbabwe Last Month: People are dying
  • Make sure the Calgery Stampede is up and running on July first, 2020
  • My Hebrew teacher Mama was born in Louisville Kentucky with the name on her birth certificate:”Muriel Magdalena Pellicia”
  • Cher extremely alive
  • French rock goddess is a protégée of Isadora Duncan
  • Attention Architects: US COVID-19 Deaths Will Skyrocket; You Must Build Housing for the Poor
  • Passover Message to my Fellow Congregants Ohev Sholom, Williamsport PA
  • Perhaps the World Ends Here by The Poet Laureate of the United States
  • My drop dead enthusiastic review of The Meritocracy Trap

Links

Blogroll
  • 1. PHOENIX REHAB1. PHOENIX REHAB With the help of the gifted Alicia Spence, I begin to walk.

  • 2. SMART SPACES FOR INDEPENDENT LIVING2. SMART SPACES FOR INDEPENDENT LIVING "The demographics of baby boomer aging over the next decade foreshadow great economic, political and cultural changes that could overwhelm many developed countries," said Richard Behr, founding director of the Center.

  • 3. IMMERSIVE CONSTRUCTION (ICon) LAB3. IMMERSIVE CONSTRUCTION (ICon) LAB My home in virtual reality, the ICon lab shows 3D and 4D (the fourth dimension is Time) models on 3 eight-foot hight screens; when the lights go off, put on the 3-D glasses.

  • 4. AMIGO MOBILITY4. AMIGO MOBILITY CEO Al Thieme created the first Power Operated Vehicle (POV) scooter. Most manufacturers separate their battery chargers from the scooter. You can plug an Amigo right into an electric socket .

  • 5. T & B MEDICAL5. T & B MEDICAL "Travis and Barb Barr, the 'T' and 'B' behind T & B Medical, Inc. have one goal in mind...to attend to every client's individual" mobility and durable equipment needs. I am a continual customer and recommend T&B highly--HIGHLY.

  • 6. INVACARE6. INVACARE Invacare is the world's leading manufacturer of wheelchairs, bariatric equipment, disability scooters, respiratory products and other homecare products.

  • ACCESSIBILITY FROM APPLEACCESSIBILITY FROM APPLE For the disability community, computer technology creates the ability to engage in computer design of aging-in-place housing.

  • CAREGIVER VILLAGECAREGIVER VILLAGE Using a virtual reality world, Caregiver Village improve the lives of family caregivers. Second Life, eat your heart out.

  • EMAIL MEEMAIL ME I once had a boss who loved focus groups. One afternoon at a shopping mall, readers of my newsletter told me EXACTLY what they thought, not knowing I was behind the one-way mirror. Please do the same.

  • HME NEWSHME NEWS HME News is the monthly business newspaper for 17,000 home medical equipment providers.

  • McKEESPORTMcKEESPORT "The decrease in the population since the 1940s is attributable to the general economic malaise that descended upon the region when the steelmaking industry moved elsewhere. The major employer WAS the National Tube Works, a manufacturer of steel pipes.

  • MONONGAHELA RIVERMONONGAHELA RIVER George Washington crossed the Monongahela into McKeesport to bring rum to the his friend, Queen Alliquippa, a Seneca Indian ruler. This was during the French and Indian Wars, Remember them?

  • NATIONAL FEDERATION OF THE BLIND

  • PENNSYLVANIA ASSOCIATION OF REHABILITATION FACILITIES (PARF)PENNSYLVANIA ASSOCIATION OF REHABILITATION FACILITIES (PARF) PARF represents the Commonwealth's premier facilities serving individuals with physical, mental, and emotional disabilities. Traditionally, the highlight of the disability community is the annual conference at the Nittany Lion Inn at the Penn State campus

  • YOUGHIOGHENY RIVERYOUGHIOGHENY RIVER McKeesport is where the Youghiogheny and Monongahela Rivers meet. Fresh fish like the Walleye are back at the Youghiogheny, now that factories that created jobs are no longer polluting the river.

Previous Posts

Tags

Addison Court Amelia Altalena Solkoff Amelia Solkoff Amigo Mobility Architectural Engineering assistive technology blind Blueroof Technologies cancer Central Pennsylvania Centre County design featured-grid Helen Keller HME News Isadore Solkoff Joanna Joanna Solkoff Joel Solkoff John Bertoty John Messner kidney cancer McKeesport Medicaid Medicare Memorial Sloan Kettering Cancer Center Miriam Pell Schmerler Miss Sullivan New York City North Carolina PA Penn State Pennsylvania power chairs President Obama Robert Walters Sarah Schmerler scooter Sonali Kumar Spain State College United States University Park Virtual reality Wikipedia

Footer

Recent

  • 1971 birthday letter to my father
  • If by Rudyard Kipling
  • Grandfather (that’s me) relocating to NYC to save my life at Memorial Sloan Kettering Cancer Center
  • Why I relate ending hunger in US America to writing about my cancer survival for The New York Times
  • My love hate relationship with The New York Times 2018
  • Radio hate monger of the 1930s Father Coughlin returns to Fox News
  • A fine romance with no kisses
  • The US Needs a New Capitol City: Covid Agenda Item
  • The US Election & Housing for the Vulnerable
  • We who are about to die…or architecture

Subscribe

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 50 other subscribers

Cart

Copyright © 2021 · Magazine Pro on Genesis Framework · WordPress · Log in

loading Cancel
Post was not sent - check your email addresses!
Email check failed, please try again
Sorry, your blog cannot share posts by email.