ALS being dealt with as an “inconvenience” sounds like a cavalier statement from the inexperienced, at best. I recoil from typing such crass words — but I also have a celebratory feeling about this opportunity to share a discovery that, to me, has been more important than a cure.
Years of low self-worth
“Pollyanna-ish” is an adjective never used in describing my personality. Over this 25-year journey with ALS, I have traveled through the depths of Hell to get to where I am today. My only regret is the determined spirit within me did not shorten this voyage of enlightenment.
With the exception of a giving father, I was surrounded by an extraordinarily selfish family for two years shy of a quarter century. It began when I possessed an able body and foolishly married the wrong woman for me. There was a pregnancy before the wheels totally fell off our relationship. It was my lifelong dream to be a father. Days prior to my fatherhood dream being fulfilled, I was given the standard three-to-five-years-to-live ALS diagnosis. My then-wife made it crystal clear I could not let ALS abbreviate my life because I had a child to raise. This decision of necessity morphed into a mindset.
Immunity from the ravenous progression of this disease was not mine. After far exceeding the safe use of a BiPAP, I decided to prolong my life with a ventilator and tracheostomy. When my then-wife realized I had turned a terminal disease into a manageable severe disability, she served me with divorce papers.
Life was definitely challenging living independently on a fixed income with seemingly impossible financial obstacles, but I was free of the anchor that impeded me from living! Due to budgetary constraints I had to train uneducated individuals to perform fairly sophisticated medical procedures while attempting to remain among the living. The mindset of seeing another sunrise became a daily mantra. Nothing was going to keep me down — but because of circumstances, many precious days were wasted just existing, not living life to the fullest. Though the flame of hope often burned dimly and flickered several times, I kept it alive hoping that if I didn’t give up, there would be something much better before the eternal nap.
I tried not to be the selfish burden my family’s words and actions told me I was. I looked forward to speaking engagements primarily for a reason to leave home; surely an opportunity to encourage others cannot be seen as selfish. The minimizing of my life to mere existence ignited anger in my gut. When I get angry about a situation, improvement soon follows. This isolated trek reinforced the belief I must be proactive and take charge of every area of my life, especially health care.
A fresh perspective
My hardened heart prevented any romantic relationship from progressing healthily or far, but a two-decades-old tradition of inviting people with ALS and their families into my home to see how I live with ALS brought Carey to Rex, Ga. Her father was in the late stages of ALS, and she hoped her dad would choose a ventilator.
My hardened heart pretty much turned to putty upon seeing Carey. I was powerless against the desires of my ticker, no matter how hard I tried to sabotage the budding romance out of a fear of getting hurt. I am forever grateful for Carey’s patience, perseverance and insight.
I have received unconditional love from Carey and my six stepchildren. My wife is the most insightful individual I have ever known. Give Carey a brief glance or a few facts and she can give a detailed synopsis that is dead-solid perfect. I swear she needs to be a criminal profiler. As she shared her observations about the way I was being treated, the weight of the world lifted off of my shoulders. Gaining a fresh, accurate perspective brought me back to my Superman days predating my diagnosis, where I made impossible things possible. But now it’s even better surrounded by love. I have never been happier in my entire life.
I once heard a TV evangelist preacher say, “If someone is continuously stomping on your foot and you want them to stop, do not politely ask them — rather move your foot.” It was long overdue, and I shuffled my feet like Fred Astaire to stop the constant pain I allowed to be inflicted on me. Next was the flushing of all manipulative people from my life. There is absolutely no room for manipulators in anyone’s life. PURGE! It must be done because time is precious and a better lifestyle awaits.
ALS: An inconvenience
Not being on constant guard for disappointments, hurts and inadequate care has taken me back decades. I smile so much more with a face that is once again flexible and full of life. Carey’s extraordinary love brought me back and made me strive to be a better person. It has brought on a relaxed environment, and my health has improved dramatically with the stress reduction, improved care and improved diet.
Granted, we are not dealing with challenges of declining abilities, but even if we were, ALS would not be the center of our lives. Rather, we seize every minute of joy available out of the day, relishing the simple pleasures many fail to take the time to enjoy — coffee on the deck listening to nature, cooking with the children and sitting down to eat and talk, etc.
We take ALS in stride. This is the hand we have been dealt. We can play or fold. Staying in the past and regretting a life lost is totally understandable but a complete waste of precious time. Grieve and move forward.
The most fortunate only have a blink in time on this big blue marble. I look back at my brief able life with a tremendous sense of relief, knowing I never took a single minute for granted. ALS has honed to a razor’s edge my appreciation for time, for what is truly important in life.
Embrace the present, hope for tomorrow and make ALS an inconvenience you deal with daily.
About the Author
David Jayne of Rex, Ga., was diagnosed with Lou Gehrig's disease in 1988 at age 27. Since then, he has been a pioneer in advocacy and technology. Though his mobility is limited, David has demonstrated to everyone who knows him or has read about him that the human spirit is indomitable.