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When You're Afraid to Live With Parkinson's Disease

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The future — the unknown. We spend our lives pursuing it, planning for it, dreaming about and wishing for what it will look like. Often the disappointments of life come about because what we had dreamed, hoped and planned for did not come about. In some ways, we are always chasing a dream — a dream and hope of what our future will be. For some of us though, that dream became a nightmare on the day of our diagnosis, as our hopes and dreams for the future came crashing down around us. Instead of something to be feared, our future death became something that we viewed as relief and peace. For me, I now no longer feared death, because I was more terrified of living.

What a cheery thought to begin an article with, right? A topic I am sure we are all ready and waiting to dive into. After my diagnosis, this is honestly how I felt. I had read so much information about Parkinson’s, and the future with this disease terrified me:

Slow speech
Involuntary movements

All of these were no fun, but this is just the tip of the iceberg:

Bladder issues
Cognitive issues
Loss of smell
Sexual dysfunction

This list could continue even beyond this — all of which added together to create a very bleak and terrifying view of what my future could look like. As all these thoughts ran through my mind, I could not help but think of the worst-case scenario, and as discouragement overtook me, I saw nothing bright about my future, and for the first time, I saw and understood the hopelessness that some feel. When looking at this, some days it was very hard to see hope.

I remember on that day when I first felt this, I told my wife how terrified of the future I truly was. I was frightened of what my life, my future, would entail. I feared what my body and mind would look like five, 10 or even 20 years down the road. I was fearful and heartbroken for the path my family would now have to walk. I remember looking almost with hope to my future death as a release from this prison of my body that I now found myself enduring.

Living this way, in this body, scared me so much more than the release of death, because I did not want to live in that state, with all of those struggles. The old saying goes, “What does not kill you makes you stronger,” the only problem is, not everyone gets in the second group. I honestly did not want to live through the first group, but ultimately, I did not have a choice.

My faith certainly helped me on this path, and I knew God walked with me on this journey. I also knew the hope I have even in death, but what about now? How would I live now not fearing the future? Last month, my son and I went to a concert, and I heard an old song that I had never heard before “Live Until I Die” by Clay Walker in 1993, and as I sat there, I was captivated by the simple message:

“I don’t want to think about tomorrow…I don’t worry ‘bout things that I can’t change…and every night I get on my knees and thank the Lord above…I just want to live until I die.”

That simple message reminded me that I can worry about tomorrow, stop living today, and die long before I am dead — or — I can choose hope and thankfulness and live until the moment I die. Yes, the road would be more challenging. Yes, there would be very hard days. Yes, the worst I feared might happen, but me fretting and worrying about it would not change it, and it would only rob me of the life I could still have.

Fear can be debilitating, but when I remember this principle and the hope I have in Him and can walk forward despite those fears, and when I do this, I will no longer fear to live. For I will be at peace, knowing the hope I have and the life that I can still live, even now after my diagnosis. I cannot let fear immobilize me and stop me from living now. I cannot live in the fear of my future, a future that might or might not come to pass.

Just because we have a diagnosis, does not mean we cannot still approach life with hope, living until we die, walking forward in the face of fear, knowing that even though the road is long and hard, He walks with us, and He will strengthen us. Don’t squander today worrying about what you cannot change. Don’t fear the hard life you must live, because your diagnosis was not a timestamp, the end of the road or even a death sentence. It is simply a challenge some of us must overcome, and we overcome that challenge by choosing to live until we die.

Getty image by Carmen Martínez Torrón

Originally published: November 30, 2021
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