I barely remember the person that I once was, pre-PD, but I do know all too well the person that I was becoming. The edginess and tenacity with which I faced challenges, no faced life, was becoming a distant memory. In the past, fear was nothing more than another four-letter word. Now, if I allow it to, trepidation permeates my thoughts. “What if I can’t…work anymore… walk anymore…drive anymore…type anymore.” How will my family survive? My thoughts raced to the direst of circumstances and the most devastating outcomes.
I started my first company at the tender age of 21 with no money and no formal education, just a strong work ethic and an even stronger back. Of course I made more mistakes than I could count, but my degree came from the school of hard knocks. I thought that was how everyone learned. I soon discovered that if I tried my hardest and did my best, I would survive. Sure my ultimate goal was much loftier than just meeting my most basic physiological needs, the foundational base described by Abraham Maslow. I spent very little time fretting about basic needs; food,
shelter, security and safety. That was then. In my head, I was invincible. If satisfying the demands of my customers required that I worked 20-hour days, so be it. I was all in. I would sleep when I could. My family would understand. After all, I was working so we could have more “stuff”. Risks; I became risk averse. I could not comprehend a scenario that would prohibit me from sustaining the basics of life. Never in my wildest dreams did I consider what would happen if I could no longer work with my hands.
I got out of the construction industry when I was in my early 40’s. I wanted so much more for my family than just to scramble in creative ways to meet their basic needs. When I was in my mid-30’s, I decided that I wanted to get an education so I started college with no credits while working full time as the owner of a growing small business. What started out as a personal goal, soon became something that was ever so subtly prodding me to rethink the future that I had envisioned for myself. My wife was my biggest supporter and encouraged me every step of the way. Sure starting college mid-career was stressful, but it was a good kind of stress; it was different. I was nurturing something inside of me that no one could ever take away. I saw it as an investment, an investment in my family’s future with the full expectation that we would experience a dividend. I thoroughly enjoyed my academic experience, so much so that I went on to graduate school at one of the most prestigious universities in the country. I graduated with high honors from both schools, solidifying in my inner being that I had the juice, the intellectual horsepower, to build on my foundational work ethic and aversion to risk, to realize a financially rewarding future for my family and myself. Little did I know what the future would hold.
My career took a different path than I expected. I entered the next phase of my career working for a short period of time in a top public accounting firm, followed by two accounting roles, the first in a family-owned company, and the second in a non-profit. It was during the latter that I began to experience some gnawing health issues that were not going away. Tremors, stiffness, slowness, etc., all tell-tale signs of early onset Parkinsons. Then came the diagnosis that changed the trajectory of my career aspirations. What should have been a time in my career when I could focus on the higher level needs of Maslow’s hierarchy, needs of esteem and self-actualization, fear set in. It was not like any fear that I had experienced in my life before. This was debilitating, a near panic. “What if I can’t…?” I was worried about something now that may or may not come to fruition in the future. I allowed the anticipation of what might happen to overshadow the reality of what was. While I was beginning to encounter some physical limitations, the real limitations where largely in my head. I began to believe that I was not the same person, that person with the juice, and the very core of my being had somehow changed. But it hadn’t; deep inside, I was still the same. I had the same goals, same dreams and most of all the same intellectual horsepower. The changes that I was experiencing psychologically did not correlate to what I was experiencing physically. I was too young to accept the notion that my contribution to my family’s financial security had peaked. Something had to be done! Never before would I have conceded that there was a limitation on what I could accomplish; there was not a sensible or valid reason why I needed to begin now.
I found someone to help and equip me with the tools and insights to put my condition into a manageable perspective. I was given an assignment, read Man’s Search for Meaning by Viktor Frankl. The man who would become a respected psychologist, Dr. Frankl was imprisoned by the Nazi’s during WWII in Auschwitz. Included in the forward was a reference to this theme by Nietzsche, “He who has a WHY to live for can bear most any HOW!” Frankl locked onto a “Why”. For him it was thought of seeing his wife again and the dream to lecture about his experiences in the concentration camp. Not to compare the societal insignificance of my disease to one of mass ethnic and religious genocide, but I was challenged to find my “Why”. In essence, it was the beginning of a quest; how can I give my life meaning in the face a degenerative condition? On the most basic level, I needed to be able to internalize why I should get up every day, take my meds, exercise, take my meds, eat healthy meals, take my meds, etc. The simple answer was for my family, however living it out soon proved to be more difficult. I needed to turn the concept of choosing to live in the present and to find joy in midst adversity into an everyday action. How can I be my very best when those who I interact with the most see me at my very worst; both physically and emotionally?
Maslow identified this psychological need as the need for belongingness and love. Even though I ignored this need in my own life while climbing up the pyramid, I was confronted with this need on my way back down. Funny how that worked out. As a result of this disease, I learned that there were people in my life who cared and were willing to walk beside my family and me. Friends would offer to put up our Christmas lights knowing that me on a ladder was no longer wise. People that I had known most of my adult life but seldom see, would ask me how I was doing with genuine compassion and concern. Little do they know that each of them gave me another thought or memory that I could tap into to combat any resurgence of irrational fear.
There is still an elephant in the room when I see someone who I haven’t seen in a while. They sense that something has changed but only the brave have the courage to ask. I am ok with that as well. I don’t want my PD to define me; I prefer to be thought of as just a regular guy that likes an occasional beer. If you are in the neighborhood, look me up.