April_May 2016 Motto: plus pleased to be back at physical and occupational therapy

Before January, I published mottoes regularly. Now, I return with explanations. Expect abrupt transitions.

Walking (even with a harness) on the parallel bars after 21 years as a paraplegic. Invigorating.
Walking (even with a harness) on the parallel bars after 21 years as a paraplegic.
Invigorating.

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From “Out on the Rim” by Ross Thomas

The pretender to the Emperor’s throne [1] stood in the innermost sanctum of the deposed ruler’s palace [2] and listened, beaming with pride, as the younger of his ten-year-old twin daughters finished  reading the framed poem aloud. The poem had been left behind on the wall when the deposed ruler fled into the night.

“‘Yours is the earth and everything that’s in it,”‘ she read, “‘And–which is more–you’ll be a man, my son.'”

 The ten-year-old girl had read Kipling’s “If” with what  at one time was called expression. The Filipinos in the line behind her applauded enthusiastically. She turned, curtsied prettily–despite the jeans she wore….

“Very, very nice,” said [her father] Artie Wu who stood six foot two and three-quarter inches and weighed 249 pounds….

His younger daughter made a face at the poem on the wall. “God that’s dumb.”

“Mr. Kipling had an unhappy childhood,” Agnes Wu explained. “To make up for it he sometimes became a trifle optimistic and overly sentimental.”

Her daughter nodded wisely. “Mush, huh?”

“Mush,” agreed Agnes Wu….”

The older of the twin daughters (older by 21 minutes) turned on her sister. “It wasn’t as dumb as ‘Invictus’ that you got out of and Mrs. Crane made me memorize last year. You want mush? ‘Out-of-the-night-that-covers-me-black-as-the-pit-from-pole-to-pole-I-thank-whatever-gods-may-be-for-my-unconquerable-soul.’ That’s mush.”

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Did Rudyard Kipling (the first English-language author to receive the Nobel Prize in Literature https://en.wikipedia.org/wiki/Rudyard_Kipling) really have a rotten childhood?
Did Rudyard Kipling (the first English-language author to receive the Nobel Prize in Literature https://en.wikipedia.org/wiki/Rudyard_Kipling) really have a rotten childhood?

Footnotes

  1. Ross Thomas created Artie Wu to be the kind of hero who runs away from a Methodist orphanage with his self-respect so firmly in tact that he humorously refers to himself as next in line to be Emperor of China (even though China does not have an empire).
  2. This scene takes place in the Presidential palace of Ferdinand Marcos, a garish dictator of the Philippines who was removed from office in 1986. After Marcos fled, tourists (as in this vignette) flocked to his palace to see how he lived.
  3. I know. Footnote three does not refer to anything.

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Getting from there to here is an abrupt transition. The transition is easier with planning and intention. Yet there is where I was grateful to Ross Thomas for making the packing to HealthSouth easier. Now here I am, my goal posted on a chart in my bedroom. Have to scoot quickly. This photograph posting is a lunch pit stop between physical therapy in the morning and occupational therapy in the afternoon.
Getting from there to here is an abrupt transition. The transition is easier with planning and intention. Yet there is where I was grateful to Ross Thomas for making the packing to HealthSouth easier. Now here I am, my goal posted on a chart in my bedroom. Have to scoot quickly. This photograph posting is a launch pit stop between physical therapy in the morning and occupational therapy in the afternoon.

Regarding:  Pleased to be back at physical and occupational therapy

This is the abrupt transition I warned you about. I was reading Ross Thomas as I packed and prepared to arrive at Health South, a for-profit hospital in Pleasant Gap, Pennsylvania nine miles northeast from my apartment. I began writing this post after checking in to my mountain view room on Sunday night April 24th.

I took this photograph from my hospital room at dawn on Monday.
I took this photograph from my hospital room at dawn on Monday.

I have been in a state of physical decline following my return home to State College, Pennsylvania after spinal surgery in New York City. This state of decline (despite periodic ups and downs) has persisted from December to the present. My admittance to HealthSouth, I hope, marks a new beginning.

Background: My Previous Hospitalizations at HealthSouth

This is my third hospitalization at HealthSouth in the last 12 months. Below is a video I made in October. I spent three weeks in hospitals that month. My first stay was a consequence of breaking my left ankle. Mount Nittany Medical Center transferred me to HealthSouth where I learned to transfer from the bed to my scooter without putting weight on my foot. Essentially, I was hopping as I saw the rabbits do on Monday night while scooting around this building.

My second stay at HealthSouth followed my hospitalization for a dangerous MERSA infection.  At Mount Nittany Medical Center [where the food–surprise surprise–is superb] the doctors saved my life. They did so my draining the puss from oozing wounds on my body and providing massive doses of antibiotics (first through an IV; then pills).

The drive from State College to HealthSouth.
The drive from State College to HealthSouth.

Susan Hartman is the C.E.O. of HealthSouth at Pleasant Gap. “As chief executive officer… for the past nine years, Susan Hartman oversees the day-to-day operations of the 70,000-square-foot, 73-bed inpatient rehabilitation hospital,” writes Town & Gown Magazine. “Located at 550 West College Avenue in Pleasant Gap, HealthSouth Nittany Valley serves patients across the region, offering comprehensive inpatient and outpatient rehabilitation services designed to return patients to leading active and independent lives.”

I met Susan on the last day of my first stay at her hospital. I suggested that HealthSouth consider working with companies constructing housing for the elderly and disabled. I was impressed by the skill of occupational therapists (OT) on her staff especially in their use of activities of daily living (ADL).

Following my hospitalization at Mount Nittany for MERSA, I was released from the hospital, but was unable to bandage my wounds adequately. At a loss for how to take care of myself, I wrote my children expressing pessimism. I copied Susan in my email. The following day, a HealthSouth administrator called to tell me that my admittance had been approved. What a relief!

Digression: How Healthcare Expertise Is Useful in Designing Housing

Here I will digress on the significance of activities of daily living. In the kitchen, for example, ADLs are useful for breaking down into definable units how to make breakfast. With my work with Dr Sonali Kumar using virtual reality for elderly and disabled  residences. ADLs are essential for building design.

“Experienced-based design” is the term of art for an approach to architecture where the residents requirements determine how a building is constructed. I am hopeful that a consequence of my meeting with Susan that HealthSouth will form an alliance with the Penn State Department of Architectural Engineering where I work.

Today (April 28, 2016) Occupational Therapist Diann Dougherty helps me understand how ADLs can be useful in my writing a chapter on designing a kitchen accessible to residents with a mobility disability.
Today (April 28, 2016) Occupational Therapist Diann Dougherty helps me understand how ADLs can be useful in my writing a chapter on designing a kitchen accessible to residents with a mobility disability.

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Yes it helps me to know that in HealthSouth’s occupational therapy kitchen, the distance from floor to sink is 36 inches. My experiences during my three times as an in-patient have ranged from the useful to the dramatic. It was dramatic for me to have a near-death/out-of-body experience when my second stay at HealthSouth came to an abrupt end.

I had awakened on a  Thursday morning with chest pains. HealthSouth’s compassionate Medical Director Richard Allatt ordered an ambulance. Doreen, my nurse held my hand until the attendants came with a gurney.  As I watched (mistakingly believing I was going to die from a heart attack), I felt myself to be a third-party observer as I was being loaded onto the ambulance en route to the emergency room. I marveled at the beautiful early morning mountain scene saying to myself, “This would make great video.”

At the time I had been making videos. At first I produced elaborate architecture videos as enhancements to my column for e-architect UK.  At HealthSouth, I made cinema verite videos (yes, I know this sounds pretentious) to provide short unedited perspectives on the mobility disability experience.

Leaving HealthSouth, I was thinking about Megan Brown, the “star” of the above video. I was filled with a sense of profound gratitude to Dr. Allatt, Doreen, Megan, and the other physical and occupational therapist and staff at HealthSouth. Consequently, months later after I found my health to be in distress. I was pleased to be back here.

My April 24th to May Second stay at HealthSouth

The single most significant aspect of my stay is the time I have been spending on the parallel bars.

On the second day of my stay, I published the following on Facebook: "These are the parallel bars in the East Wing Therapy Gym. I photographed the bars early this Tuesday morning hoping the picture would provide the sense of excitement these bars evoke. Yesterday, attached to a harness, I "walked" upright. The pain I feel this morning evokes hope. I am here at HealthSouth to manage the crippling pain in my spine. The pain in my muscles is a different kind of pain. A good pain when transformed into strength will help me defeat the bad pain. It is too early to discuss good and evil--not before breakfast. Suffice it to say, I look forward to this day because I will be walking upright again."
On the second day of my stay, I published the following on Facebook: “These are the parallel bars in the East Wing Therapy Gym. I photographed the bars early this Tuesday morning hoping the picture would provide the sense of excitement these bars evoke. Yesterday, attached to a harness, I “walked” upright. The pain I feel this morning evokes hope. I am here at HealthSouth to manage the crippling pain in my spine. The pain in my muscles is a different kind of pain. A good pain when transformed into strength will help me defeat the bad pain. It is too early to discuss good and evil–not before breakfast. Suffice it to say, I look forward to this day because I will be walking upright again.”

Standing is special for me. So is “walking” upright, even if walking simply consists of moving between two parallel bars–using the strength in my arms to keep me upright and get from here. I wrote that I hoped my stay at HealthSouth would reverse the decline in my physical health. Central to achieving my goal is a broader range of mobility and the necessary strength.

In the report I have been writing on designing housing for the mobility disabled, I emphasize the notion of transparency. Access in the home should be so readily available that the resident is reminded as little as possible that she or he has a disability. For example, for a two-story house an elevator or a wheel chair lift is far preferable to a stairlift.  For a stairlift one has to transfer, and the less transferring the better.

This plastic brace (a.k.a. orthotic device) is evidence of my laziness. Twenty years ago it was prescribed for me to use in conjunction with fore-armed crutches. However, through neglect I have lost the arm-strength and balance necessary to use crutches safely. This is something with training and persistence I can do again. The photograph shows how my muscles have decreased in size through lack of use.
This plastic brace (a.k.a. orthotic device) is evidence of my laziness. Twenty years ago it was prescribed for me to use in conjunction with fore-armed crutches. However, through neglect I have lost the arm-strength and balance necessary to use crutches safely. This is something with training and persistence I can do again. The photograph shows how my muscles have decreased in size through lack of use.

Transparency relates to my physical therapy goals. For the past 21 years as a paraplegic, I have managed to compensate for my disability by relying extensively on mobility devices such as scooters and power chairs. These are extremely helpful tools. When I first used a scooter I was in my forties. Working was essential for paying the mortgage and supporting my family. The speed and appearance of the scooter made my disability seem less disturbing. My employers, co-workers and children regarded the device as a neat technological solution.

A few years ago, I teamed up with a local supplier of mobility equipment to show disabled members of my synagogue the freedom  these devices provide. One elderly woman expressed concern. Her inability to walk trapped her in her home. She worried that dependence on the scooter would result in her losing what mobility she had. I pointed out that while exercise is important fatigue is counterproductive.

Four years ago Alicia J. Spence at Phoenix Rehab helped me walk using fore-armed crutches to walk. With the proper movement performed religiously each day (and the use of a device that directs electiricity to my ankles (see footnote 12) I might be able to walk someday. First, however, I have to master the pain. Alicia suggested a wonderful exercise that slowly reduces spinal pain when I lie on m stomach.
Four years ago Alicia J. Spence at Phoenix Rehab helped me walk using fore-armed crutches.

I was correct (of course). Mobility devices do provide freedom. Any physical therapist will tell you that fatigue is debilitating. Yet my argument was fallacious because I had failed to be moderate. I was lazy. I did not exercise. Twenty years ago, a year after I lost the ability to walk, a physical therapist prescribed fore-armed crutches (above) and braces (photo above crutches).

Through lack of use, I have lost the strength and balance to use the crutches. The braces prevented my toes from dropping–I had dislocated my right shoulder when I tripped over my toes. The braces also kept my legs steady. As the photograph shows, through lack of use my leg muscles have shrunk.

image

My major accomplishment at HealthSouth was my ability to use this tool. I am not strong enough to use a walker. This platform above a standard walker made it possible for me to cross the floor from one end of the room to the other.

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Senior Physical Therapist Steven Uberti
Senior Physical Therapist Steven Uberti

HealthSouth’s Pleasant Gap facility has a number of excellent physical (PT) and occupational (OT) therapists.

Steve took this photograph of me holding myself upright on the parallel bars.The absence of a harness means that Steve observed that it is safe for me to move along the bars without concern that I might fall.
Steve took this photograph of me holding myself upright on the parallel bars.The absence of a harness means that Steve observed that it is safe for me to move along the bars without concern that I might fall.

Hic Haec Hoc

Orientation for new patients

This sign was prominent when I checked into my hospital room on Sunday night.
This sign was prominent when I checked into my hospital room on Sunday night.

To be discussed is the especially significant “happy wheels” designation.

image

Meanwhile, in an unrelated event, nurse Sydney pushed me in a wheelchair and weighed me. Minus the weight of the wheelchair, I weigh 143 pounds. I have lost over 30 pounds in the past year. Dinner will arrive shortly. Then a friend. Tomorrow is another day.]

This is tomorrow

Tomorrow is today--Wednesday; 6:30 AM. I am sitting on my scooter waiting for it to begin charging. The doctor came and went promising to discuss the muscles in my thigh with the therapist--muscles than require strengthening
Tomorrow is today–Wednesday; 6:30 AM. I am sitting on my scooter waiting for it to finish charging. The doctor came and went promising to discuss the muscles in my thigh with the therapist–muscles than require strengthening.

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The nurse came by dispensing medicine. The breakfast tray is next.  It is early morning still; yet it feels late. Too late to finish this post which is becoming more ambitious in planning as its execution… You know what I mean.

I do not want to wait too long before posting what is in effect a cash register. I am requesting donations so I can recover–have the time required to earn my own way.



ASSISTANCE REQUESTED

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How I plan to recover and earn my own way is a subject for later–after I obtain strength on the parallel bars and on the exercise mats for three hours today.

[Editorial note: Transition language is required to orient the reader. The writer would likewise benefit, but….]

The “Road to Recovery” board (above) contains my goal

My goal is  “Develop My Hip Muscles So My Legs Do Not Wrap Around Each Other.”

Unaware I am doing so, my legs wrap around each other. It is as though my left leg thinks it is my right leg and vice versa.
Unaware I am doing so, my legs wrap around each other. It is as though my left leg thinks it is my right leg and vice versa.

When I sleep, my legs frequently cross each other causing considerable discomfort. This is most noticeable when I awake to find my legs pretzel-like requiring that I pull them apart. Over the course of the day, I find that I have unconsciously crossed my legs. In the long term, there is danger that hip damage will result. There is cause for optimism because the problem can be solved by strengthening my abductor muscles–the muscles that move my legs away from my body.

This exercise requires me to move my legs apart. While doing so, I stretch the band. The band is there to make the movement more difficult therby strengthening my muscles. Currently, my ability to move my legs apart is severely limited. Slow and diligent work and patience are required.
This exercise requires me to move my legs apart. While doing so, I stretch the band. The band is there to make the movement more difficult thereby strengthening my muscles. Currently, my ability to move my legs apart is severely limited. Slow and diligent work and patience are required.

Before moving on, now  is a perfect time to show you hip abductor muscles.

Courtesy: www.athleticquickness.com
Courtesy: www.athleticquickness.com

Moving on

Moving on means looking back to provide an overview of my situation. In other words, I am a paraplegic. How I lost the ability to walk is key to understanding how to fix my current physical problems.

 

December motto plus optional isolation

CanceroustumorsurroundingrightkidneyDr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.

The order of this posting (typically presented in a hodgepodge of disorder):

  1. Motto
  2. Paraplegia and the recollection of previous cancers
  3. The last part of cancer therapy
  4. Optional isolation
  5. Joanna’s wedding
  6. This I believe

Motto

Make haste slowly is the motto.

Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: "Make haste slowly."
Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: “Make haste slowly.”

I first came across this seemingly contradictory expression when trying to learn Latin: Festina lente.

Unless one is in a situation such as mine, Make haste slowly appears to make no sense.

Speed and slow are opposites.

The last part of cancer therapy

My situation comes at the end of a difficult time.

The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.

This is my first "step" in getting to New York.
My first “step” in getting to New York.

I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.

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In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”

“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”

Still from the 1929 film version of The Canary Murder Case
Still from the 1929 film version, The Canary Murder Case

Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.

My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.

Paraplegia 

For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School  in Wyncotte, PA.

Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.

What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.

I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.

In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…

In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.

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Isadora Duncan
Isadora Duncan

For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.

The brilliant physical therapist Alicia J. Spence at State College's Phoenix Rehab begins; it is time for me to return to her.
The brilliant physical therapist Alicia J. Spence at State College’s Phoenix Rehab begins; it is time for me to return to her.

In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.

The recollection of previous cancers

After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.

The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.

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“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”

Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”

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Frequently, I suspect I have not learned from experience.

The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.

The cloud is not there now.

Recovery from surgery has surprised me by its slow pace.

When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.

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One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of  affection and attention not merely from those close to home.

A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.

Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.

Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.

Optional isolation

Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.

Joanna’s wedding

Before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend  Ben Carlsen drove from State College to New York to bring me back home.
Three months before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.

Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.

Amelia was my caregiver at  the American Cancer Society's Hope Lodge in NYC where we roomed together before, during, and after my surgery.
Amelia (right) was my caregiver at the American Cancer Society’s Hope Lodge in NYC where we roomed together before, during, and after my surgery.

At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.

I loved:

  • Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York

sarahatwedding

  • Revisiting my 12 year-old only nephew Asher Simonson with his unexpected moments of humor
  • Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan
  • My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck

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Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.

Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”

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Life continues.

A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.

I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.

Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.

I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.

The last part of cancer therapy

I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.

Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.

[To be inserted here observations about suicide attempts by survivors. This issue I discuss in my book Learning to Live Again, My Triumph over Cancer available on this site https://joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/].

While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.

Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.

I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.

This I believe

I believe:

  1. I am alive for a purpose.
  2. The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way, gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way (The Path), gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.

3. My chosen path is to help the elderly and disabled achieve their potential.

4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road;  the automobile provides the driver computer-voice simulated operated instructions.

Thank you Wired Magazine: http://www.wired.com/autopia/2009/07/blind-driver-challenge/
Thank you Wired Magazine

Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.

Amigo manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia's college graduation.
Amigo Mobility manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia’s college graduation.

5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff

6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes. 

VirtualRollinshower

Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”

Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.

7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.

SloanBath

8. Self reliance should be encouraged. Shown here

[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]

9. Knowing when to ask for help.

Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.
Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.

To be continued.

Meanwhile, here is Edward R. Murrow  interviewing then former President of the United States Harry S Truman on what Truman believes. http://thisibelieve.org/essay/17058/

President Truman is followed by a bad video of an Alan Jackson song. I like the theme. I like the song.

–Joel Solkoff

Copyright 2013 by Joel Solkoff. All rights reserved.