Dr. 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):
- Paraplegia and the recollection of previous cancers
- The last part of cancer therapy
- Optional isolation
- Joanna’s wedding
- This I believe
Make haste slowly is the motto.
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.
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.
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.’”
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.
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.
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.
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.
“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.”
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.
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.
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.
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.
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.
- Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York
- 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
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?”
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 http://www.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 am alive for a purpose.
- 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.
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.
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.
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.
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.
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.
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.
Copyright 2013 by Joel Solkoff. All rights reserved.