Today’s blog is a chapter from a new book I am working on that details how to find joy even in the midst of Parkinson’s. I will announce the name of the new book once I have completed the writing. I still have several weeks before that goal is met. I hope this encourages you today wherever you may find yourself in the journey of life…
“Perspective is everything when you are experiencing the challenges of life.” Joni Eareckson Tada
One of the things that has brought comfort to my soul since my diagnosis is in the number of notable people who have suffered with or currently suffer with Parkinson’s Disease. Just to know I am not alone in this journey - that others have lived quite meaningful and rich and joyful lives with great depth and fullness - has brought me much hope for my own journey. I’ll list a few. Some you already know of. Some will surprise you. Still others may shock you - or give you an ‘aha’ moment.
In no particular order, here are a few fellow Parkinsonians. Actor and one of the funniest people on the planet in addition to being one of the most visible and outspoken champions of those who deal wth PD, Michael J. Fox.
Alan Alda, who - for me - will always be Hawkeye from M*A*S*H, has PD. I loved the show M*A*S*H so much that I even attended the final episode screening party at a friend’s house dressed as Corporal Klinger (Fitting? I’ll let you decide!).
Muhammad Ali, world champion boxer who lived his life after the initial diagnosis in a very public and joyful way that truly inspires me.
Former President, George H.W. Bush, lived his final years with Parkinson’s and lived with a joyful demeanor.
James Doohan - Scotty, Chief Engineer of the Starship Enterprise - had Parkinson’s. Read my life story to find out how Star Trek changed my life (Sing Over Me). Need I say more?
There are so many more historical and notable and positive public figures who dealt with Parkinson’s, but I had to include this one for the sheer fact that Parkinson’s can affect anyone. Adolph Hitler had post-encephalitic Parkinson’s. When I first heard this, I found myself asking, “Does this mean I will one day have a tendency toward maniacal world domination and genocide and self-aggrandizement?”
Nope. Parkinson’s did not create Hitler’s worldview nor did it create the evil in his heart. Those had already been established. Again, I just found it worth noting that Parkinson’s can affect anyone…from God-fearing, people-loving song writers like me, to the aforementioned former self-proclaimed leaders of the Third Reich.
I do not wish to make light of another person’s suffering. It is not my intention to belittle anyone else who suffers with Parkinson’s - or any other illness - but I believe in the power of laughter and the foundation of joy from which I have chosen to live my life. Of course I realize no two people experience Parkinson’s Disease in the same way. For some, it is debilitating. For others, it is almost unnoticeable. For some, the disease progresses quickly. For others, it develops slowly over a long number of years. For some, the degenerative nature of the disease is a constant reminder that their body and mind are under attack. For others, it becomes a point of standing one’s ground and fighting for every ounce of clarity of thought. For some, it hits late in life. For some, early in life. For me, it hit right when I was ready to really enjoy my life!
Don’t misunderstand me. I am enjoying my life immensely even though I have Parkinson’s. Even in using the term ‘I have Parkinson’s’ there is purpose. I have IT. Parkinson’s does not have ME! In other words, I have chosen to see it as something God can use for good in my life. I was diagnosed just before my 60th birthday. In the many years leading up to that momentous age, my thoughts were completely focused on seeing my dreams come true…of being able to step away from public ministry…of being able to travel to visit my family who are scattered abroad around the world…of spending time with my wife…of playing with my grandchildren. In one sense, the diagnosis dashed all those dreams. In another sense, the diagnosis deeply enhanced all those dreams and gave me laser focused, more creative methods of seeing those dreams realized in even more meaningful ways. I may not have control over how the symptoms of Parkinson’s manifest or increase as they invade the dreams of my life, but I always have a choice as to how I view them. Perspective is everything.
“The only thing you sometimes have control over is perspective. You don't have control over your situation. But you have a choice about how you view it.” Chris Pine
Even though I take steps to slow the progression of the disease, reality is I experience the symptoms on a daily basis. Though I go through periods of trying to ignore them or have moments when I feel little or no symptoms, they always have a way of creeping back into my life. An hour without a tremor in my right hand is seen as a victory. A day when I do not experience dreaded constipation is a victory. A few hours without a foggy feeling in my brain is a few hours of victory. Time spent with my family - especially with my grandchildren - are times of victory over Parkinson’s. Early on, as a family, we decided to take on what I have already noted the Romans 8:28 point of view. Let me remind you one more time:
And we know that God causes all things to work together for good to those who love God, to those who are called according to [His] purpose. Romans 8:28 NASB
Even though I had to take a few weeks to grieve the initial diagnosis, there came a point when we - as a family - stopped walking around on eggshells regarding PD and faced it with honesty. And to be frankly honest, humor played a huge roll in breaking through the barrier of my own fears and anxieties as well as those of my family. My fear was that people would treat me with pity and as a ‘less than’. That way of thinking - I call it stinkin’ thinkin’ - flies in the face of my personal rule concerning what I think of myself. My rule? “Dennis Jernigan does not have the right to call himself anything other than what his Father God calls him.” That, by inference, means I also do not get to think of myself as ‘less than’ ANYTHING or anybody!
As I learned to apply that rule to the reality of PD in my life, it soon became apparent that the diagnosis, in the grand scheme of the journey of my life, is a mere blip on the screen…more of an annoyance and an inconvenience than anything…and certainly not a part of my identity in Christ as a new creation! Still, I had not realized how self-focused I had become as a result of the diagnosis - that my mind had become so consumed with the ‘what if’ and ‘why me?’ and ‘why now?’ sort of thoughts that I effectively began cutting off the very thing that brings me the most life. Relationship - intimacy - knowing and being known. On one hand, the withdrawing from others was out of fear of what others would think and on the other, I did not even realize I had been withdrawing from people.
Walking in relationship with others requires both giving and receiving. It is a two way street. We were not created to walk alone. We were created - wired for - relationship. Without relationship there is no life.
The Sea of Galilee in Israel is full of life. It receives rain and run-off from the surrounding hills. That same water, full of life, flows all the way to the Dead Sea via the Jordan River. The Dead Sea receives the same water yet it’s DEAD! How can that be? Even though it receives water from the Sea of Galilee, it has no outflow. There is no give and take. There is no life because it only takes in and gives nothing back! As new creations in Christ, we are intended to thrive and flourish as we walk relationally with God and with others…whether we have PD or not!
Without relationship, life is drudgery and lonely. Without relationship, nothing is shared. Burdens are carried alone. Emotional wounds are left unattended. Incredible moments of celebration are empty and meaningless without someone to share them with. Without relationship, there is no joy in life. I literally thrive on joy! My soul is buoyed by joy in the sea of despair PD can often become. By choosing to walk in joy, the sounds of the crashing waves of the sea of despair are replaced with the laughter I share with others as we find joy even in the hard times of life.
A joyful heart is good medicine,
But a broken spirit dries up the bones.
Proverbs 17:22 NASB
What I have come to believe and practice throughout the course of my life that has helped me traverse the journey of Parkinson’s is knowing the difference between happiness and joy. Happiness is ‘feeling or showing pleasure or contentment’ and is based on my circumstances. When my circumstances are good, I feel pleasure and contentment. When my circumstances are bad, I feel discouraged and like I am floundering around in an endless ocean with no land in sight.
My definition of joy is derived from what I believe about God’s love for me and presence with me. I believe God is with me through each and every circumstance of life - even my own moments of failure. I believe He loves me massively and likes me and likes being with me - no matter what. Knowing I am never alone goes along way in helping me conquer fear and walk in self-control when I have moments of Parkinson’s-induced anxiety. Knowing I am completely and utterly loved is the security blanket of my soul, my shelter in the storms of life, my foundational anchor from which I view the world and my circumstances. God’s presence is always with me and His love is the air I breathe.
A great example of what I am trying to convey is my relationship with my own children and grandchildren. I absolutely LOVE being with them. I adore my children and grandchildren. I like my children and their children. When we get together, one of my favorite things to do is listen to them share memories and tell stories about their own lives. It blesses me to no end to see the wonder in the eyes of my grandchildren as they listen to their parents reminisce about their own childhoods. I am reduced to moments of laughter that goes deeper than the pain of my illness. I am reduced to blubbering tears of joy at the love between my children and their own children - a joy that my illness can come nowhere near. I love just being with my children and grandchildren. Don’t even have to say a word. Just to be with them is enough for me. If I, as an earthly father, feel such a deep love for my children and feel such a deep joy at simply being with them, how much more does our heavenly Father love and enjoy being with us?
When we gather together as a family, I don’t want to miss a thing…so I have to be honest with myself about my weaknesses and about my point of view. I need to stop focusing on myself and on my own circumstances and focus my attention on the truth of God’s Word to me and to focus my attention on the needs of others. My children and grandchildren do not need me to be Super Man. They just need me to be dad…to be G Pa…they just need me to BE with them. I have discovered that when I focus on God and others, my own emotional needs get met…and then some. I just honestly need to get over myself!
One of the things, oddly enough, that helped me get over myself came from a conversation with a friend who I used to swim laps with at the local swim and fitness center. He happened to have a medical degree. During a break between laps, he asked me about my recent medical test concerning the possible diagnosis of PD. I told him the neurologist had confirmed a diagnosis of Parkinson’s. My friend then asked me to list my symptoms.
I told him about my right arm and the occasional tremors…about the occasional moments of feeling fogginess in my brain…about the moments of walking into a room and wondering why I had even come to that room in the first place…about the occasional moments of constipation…about feeling easily fatigued at the easiest of tasks…about the constant insomnia. After listing a few more things I considered symptoms of Parkinson’s, he stopped me and said very matter-of-factly, “You just described getting old. You don’t have Parkinson’s, Jernigan. You’re just getting old!” This did more for my emotional and mental health than almost anything anyone has done for me since the diagnosis! It made me laugh - a lot - and gave me a better perspective on my illness. Life is not about me. It’s about bringing love and joy to those I am in relationship with. Its about where my faith lies and it is about what is truly of value. Relationship.
“Faith gives you an inner strength and a sense of balance and perspective in life.” Gregory Peck
I know I have not shared much about the moments of Parkinson’s induced laughter as the title of this chapter might suggest. It is meant to be an introduction into why my family and I have so many moments of joy and laughter as a direct result of Parkinson’s.
And the utter reality of life? I am getting old…and I am OK with that…which reminds me that one of my sons, while still in high school, nonchalantly informed me, “When you’re old, I’m putting you in a home first chance I get.” I recently reminded him of that…and he denies it (but one of his younger brothers has confirmed the veracity of this statement, lol)!
Dennis Jernigan