Though I do not remember the date, I recall the neurologist’s words verbatim when all of the tests concluded and he gave me an ALS diagnosis. That was 25 years ago this spring.
I drove home from the appointment totally devastated, feeling my life was over. During the next several weeks, I maintained a facade, sharing the diagnosis with only five people and behaving as if life was fine and dandy. I was a walking shell, void of hopes and dreams. Being in the prime of my physical life, it took time before I noticed more weakness. Back then I cursed the early diagnosis — I could have gone on another year in my bliss, ignoring symptoms.
I had married the wrong woman for me. In the same week I was given my “death sentence,” we discovered a baby was in our future. My wife’s character was the motivation that kept me alive. There was no way in hell, high water or disease, that I was going to allow my child to be raised by my wife alone. I decided ALS would not shorten my life — it couldn’t.
When Hannah was born, I had the arrogance to think I was saving her life when in reality she saved mine because she gave me purpose. I forgot my self-pity because there was work to be done if I was going to cheat death. My employer at the time did not offer long-term disability insurance. I had to find a secure income stream even if I was physically able to continue working. I had to eliminate the risk of an employer terminating me because I was unable to perform my responsibilities. The position I held required me to travel all week. I knew this was not going to be possible as the disease progressed. There was but one solution to my income woes — test my entrepreneurial wings.
Scanning the classified ads, I happened upon one of Atlanta’s oldest, highest-grossing dry cleaners for sale. We were like most young couples — debt ridden and asset poor. A bank wouldn’t give me the time of day for a loan of this size, but as luck would have it, I made a friend back in college while standing in line to enter a bar. Phil and I became fast friends because he could keep up with me when it was time to have fun. I did not care that his father was CEO of a publically traded company, and Phil appreciated that I never discussed their wealth. We continued our friendship after college.
While golfing one weekday afternoon with Phil, I shared the reason for my consistent slice. During the same round of golf, he shared that after the stock market crash of ’87, his family was looking to diversify their investments to something more organic than stock certificates. I couldn’t believe my ears or timing. I told Phil about my plan for the dry cleaner; he was interested but said I would have to pitch his dad. Well, my first employer after college trained me to be a selling machine. I could sell a drink of water to a fish, so I was not intimidated in the least by Phil’s requirement. I put together my sales presentation, walked in the boardroom and sold my abilities to Phil’s father. Two weeks later, I was back in the boardroom closing the purchase.
I share this story because it taught me how to live with ALS. Solving the income problems I would face down the road enlightened me to be proactive rather than reactive. There is a tremendous difference between the two. A proactive approach enables one to make decisions from a position of strength. Reactive decisions are wrought with emotion and weakness.
I educated myself just enough to be familiar with the highlights of ALS symptom progression, but I did not bury my mind in detail and convince it I would become a statistical certainty. When progression began robbing me of abilities, I charged each physical deficiency head on, seeking solutions. If one could not be found or the resolution was too expensive, I invented a fix.
My wife at the time never said one encouraging word to me in my fight with ALS. In hindsight, this was exactly what I needed, because it taught me to advocate for myself. Even if you are married to the most loving, caring spouse on this big blue marble — like I am now — you are going to die prematurely if you do not become the flag bearer for self-advocacy. Why? Because no one possessing an able body can fathom our physical and emotional needs. Not even trained professionals know — they can get near the ballpark, but our needs and abilities vary drastically from one individual to another. You must articulate your needs clearly to resolve issues. Do not feel guilty, because if you’re with someone who loves you, the last thing they want is for their loved one to suffer. (Understand I am discussing needs, not desires. You can become a selfish demanding ass if there’s not a distinction between the two.)
I hate this damn disease with a passion; I hate what it does to individuals and their families. I despise learning of another diagnosis and knowing what they will face. Words fall pathetically short in describing the ache in my heart when I read ALS has taken another life. I am filled with guilt that every ALS sufferer lost could not manage the disease similar to me. I do not know if attitude can delay progression, but I am absolutely certain being proactive in one’s medical care prolongs life and improves quality of your days.
I was fortunate to be a patient of Dr. Charles Johnson for 44 years, because he was the best general practitioner to ever practice medicine. Until his retirement in 2005, I had no need for specialists. Dr. Johnson saw to my every need and kept me healthy. Not until after his retirement did I realize the extensive incompetence that exists in the medical profession and how many physicians don’t give a damn or don’t take the time to fully comprehend a situation.
It dawned on me immediately that if I was going to postpone the dirt nap, I had to become the overseer of my health and build a team of health care professionals who had my best interests at heart. No medical professional in my care plan is granted tenure. They are not gods, and in the last eight years, I have fired more doctors than I’ve kept. In today's society, serving the customer has become a practice of days gone by; now, one must become a squeaky wheel going to extremes to receive adequate care. You are worth whatever it takes — so do it!
Infection is our Achilles heel. Implement and adhere to clean procedures in your daily care. At the risk of being called picky or demanding, educate the unknowing and do not settle with inadequate care for your needs.
As the leader of your care, lead by example, being responsible for your health and proactive about nipping issues in the bud. If all you display is apathy, how can you expect someone else to care?
Until next time ...
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.