STAYIN ALIVE: From Where I Sit.
STAYIN ALIVE: From Where I Sit.
By. Robert E. Paulson. 2021
Call me a miracle, but I am now into my 80s and have lived with ALS (Lou Gehrig’s disease) for the past 28 years. Since a heroic rescue in December 2003, when undetected pneumonia caused my lungs to fail, I have lived by means of a tracheotomy, a life-support ventilator, and a stomach feeding tube. I have a health aide 24/7, which allows me to spend my days in a wheelchair. Since 2009, I have had an ocular-responsive computer for communication and access to the Internet. I get around the City and out-of-town in a ramp-entry van driven by Maureen, my devoted and dear wife of 50+ years.
I am told I am the longest living survivor of the ALS disease, which is a dubious distinction, considering that ALS leaves its victims totally helpless, unable to lift or move even a finger; indeed, I am a quadriplegic in the truest sense of the word. Mercifully, ALS does not affect the brain or vision, and there is no pain associated with this disease. Still, well over 90% of persons afflicted choose to let the dreaded disease run its course, always resulting in lung failure and death within 3-5 years. Except for some 10% of cases where this neurological disease is familial, no one yet knows what causes or triggers ALS.
Throughout all the blackouts I have experienced over the years, from accidental loss of oxygen due to pneumonia or battery failures, and during hospital operations, whenever I have regained consciousness, my mind always has been crystal clear.
For years, the New York subway cars posted an overhead placard sign that read “A Mind Is a Terrible Thing to Waste!” I never imagined that phrase would apply to me. With degrees in engineering and law, as well as 40+ years practicing intellectual property law, I have spent my entire adult life reading, thinking, memorizing, problem-solving and, hopefully, crafting persuasive legal arguments.
It takes a long time to build a life, but only an instant for it to crumble. I was only 55 when my leg muscles began to weaken, and only 64 when my physical condition forced me to resign from my law firm in mid-2003. At that point in time, I had no use of my hands or arms and I was unable to walk or stand due to tremendous physical fatigue in my legs. I then had to build a new life when I was already happy with the old one.
There is never a good time to find out that you’re incurably ill, but from a career perspective I was especially vulnerable. Leaving the firm was a bitter disappointment! To me and my family, it was a tragedy.
My life as an attorney, before ALS, entailed standing up and speaking in Federal Court. I used my voice in every part of the law. At the top of my legal profession and the peak of my earning ability, I should have lasted in my career another fifteen years or more.
I had spent the preceding 15 years heavily engaged in a wide variety of hard fought patent litigations. Furthermore, I worked days, nights, and weekends at the office preparing and responding to interrogatories, document requests, discovery motions, lists of trial exhibits, pre-trial Findings of Facts and Conclusions of Law, trial briefs, and motions for Summary Judgment. While not in the office, I was traveling on client matters to London and Southampton, England, Munich, Germany, Salzburg, France (attended client’s hearing before the International Court of Justice), and throughout the U.S. (including Louisville, Ky., Austin and Dallas, Texas, St. Petersburg, Fl. and Chicago, Ill). Unbelievably, for much of that time, I was experiencing ever-increasing fatigue in my legs and abdomen muscles. Traveling became torturous.
Nevertheless, having a clear mind and an eye-responsive computer, I cannot imagine sitting back and letting life just slip away. With steadfast love and encouragement from Maureen, I have continued to live on at home and fight for life despite the struggles and losses imposed by ALS. In the words of the late Stephen Hawking, also struck with ALS,
“I’m not afraid of death, but I’m in no hurry to die either. I have so much I want to do first.”
My daily routine consists of getting washed and dressed by my health aides Flosil or Nick while I am on the bed. Then, I am lifted off the bed and seated in my wheelchair; to one like me, who is disabled to the point where independent movement is not an option, the chair is a means of freedom to move! Finally, my computer is mounted to my chair. Then, I calibrate my eye gaze computer screen to one of my eyes. At last, I am ready to start my day. My health aide also, of course, must constantly check for pressure sores, brush my teeth and rinse my mouth twice a day, feed me four times a day through my stomach feeding tube, relieves me as needed, and administer a pharmacopeia of drugs to ease my general well-being. My aide turns me twice during the night to guard against bed sores. Finally, my aide suctions my mouth several times during the day and applies a cough assist machine as needed to extract fluid build-up in my left lung, caused by a hospital-acquired virus that is very difficult to eliminate.
Since my diagnosis, I have been dependent for long on so many that a list of proper names cannot possibly represent all those involved in my care and ongoing life. I remain indebted to every person who helped me in the sustained crises and to many who continue to ease my way. I owe my life to a veritable host of people. My wife, Maureen, first and foremost.
The first few years following my lung failure were the most difficult. I was hospitalized with bouts of pneumonia (twice), bronchitis, other lung-related infections, and revisions to my tracheotomy site. In that regard, I must give a word of deep gratitude to the doctors and nurses at Massachusetts General, Helen Hayes Rehabilitation, Mount Sinai, and Columbia Presbyterian.
You might ask, how do I endure this life? First, I grew up on a farm in the middle of Kansas without a father, who had died when I was not yet two. It was up to my three older brothers and me to scratch out a living as we grew up. My childhood was all grit and dogged determination: hand-me-down clothes and coal-burning stoves; water hand-pumped from a well; blizzards in the winters; and hot winds in the summers.
It was a life’s lesson in just “Stayin’ Alive.” Persevering in the face of adversity is second nature to me.
As is apparent, today my daily venture of life requires a similar amount of perseverance on my part and a great amount of dependency on others. Without their help, my life simply would not be feasible. Every day, I am faced with an impossible choice:dwell on the past and what could have been with a sound body, or live on into a future clouded with uncertainty. I am always within ten minutes of death, should my ventilator fail or become disengaged from my tracheotomy unit without sending the distress signal.
Determined not to waste my mind, as soon as I received my eye-responsive computer, I began to write my memoir, Not in Kansas Any More, which was published in 2011. I continue to work and advise a number of clients on trademark and copyright issues, as well as on trusts and wills. I have compiled a “Synopsis of Trademark & Copyright Law,” which includes a brief summary of over 200 case law decisions between 2013and 2020. Recently, I wrote an essay “ALS and Covid-19 – A Comparison of Two Forms of Isolation,” which was published in the New York Daily News and USA Today.
Finally, today I also continue to live because there is Hope! Hope that I might be alive to see the day there is a cure for ALS. Recently, scientists discovered gene-editing materials, known as CRISPR-Cas9,-12, which detect and correct mutations in a person’s genetic makeup. This material can be “customized” to correct thousands of diseases caused by a genetic defect – including Alzheimer’s, the sickle cell diseases, inherited blindness and ALS!
After 28 years, I have too many people to thank to list them all by name. They know who they are and know that I am, and always will be, eternally grateful for keeping me alive, healthy, and comfortable. They take me for long wheelchair rides window-shopping along Madison or Fifth Avenues, or basking in the City’s beautiful Conservatory Gardens, or enjoying a summer’s sea breeze while slowly strolling along the promenade overlooking the East River in Carl Schurz’ Park adjacent Gracie Mansion, the Mayor’s residence.
Last, but far from least, the gratitude I feel toward all the people in my life who have taken the time to express a belief in me, teach me, encourage me, inspire me or just spend time with me is my greatest blessing. These folks have been and remain an integral part of my life. They keep me connected to the world around me.
I have lived proudly to witness our three sons’ marriages to wonderful, very accomplished girls, and I am still here to relish in the love and antics of our four beautiful grandchildren. Still working hard at STAYIN ALIVE. BOB
“Keeping an active mind has been vital to my survival, as has been a sense of humor.” -Stephen Hawking