01/02/2021
Words of inspiration from an old friend and patient who hasn't given up and never will. He's "lived covid life before there was covid." Let's take nothing for granted in 2021!
Hello, my name is Jack, you probably don't know me, most people don't know Jack.
I would like to share my experience of being handicapped by a disease and the things I have found to keep me positive.
When I received my diagnosis of ALS, I immediately felt as though the doctor was talking about someone else. There is no way it could be me.
In the months following my diagnosis, I felt my body changing. I had a choice to either accept what was happening or live my life in denial. I chose to accept what was happening and embrace the disease. I'm sure you have heard the phrase "keep your friends close, and your enemies closer. "
One of the first stages of change was when I started to lose my ability to eat and drink. The doctor recommended a feeding tube that would be inserted into my stomach. If you can imagine, I have not had anything to eat or drink in over two years!
This was the beginning of so many other changes I would experience. I later lost my ability to walk, talk, use my arms and hands.
As I faced each stage, I would ask myself why I was going through this experience and what reasons I have for continuing to fight for my life.
The first and most important reason is my very best friend, my wife Vickie. She has worked tirelessly for the past several years. She is my primary caregiver and has learned so many new skills to be able to care for me. Her compassion and love has sustained me through this journey. The amount of responsibility she carries daily is tremendous.
The second reason I have continued to fight is I need to finish my book! This is quite ironic as I have never written a book and in fact, my worst subject in school was English. I took dumbbell English four times in school! The books objective is to share my story and help others.
The third reason, is the friendships I have. There is one that has allowed me in her life spiritually. She lovingly sacrifices time for me and Vickie. She is closer than my daughters. As a matter of fact, she is our daughter! I can't express how much she meant to us.
Lastly, there is my caregiver, Shaena. Vickie spent time searching for caregivers only to find they were not dependable and were unable to provide all the help I needed. On our third try, Shaena came into our lives. She is a godsend. Shaena is a licensed vocational nurse and is dependable and very intelligent. Through the years she has become part of our family.
These are the top reasons I have decided to continue living in this condition. The journey has been difficult at times. When I get discouraged, I lean on my religious mantra. As I take a breath in, I say Jesus and on exhale mercy.
I had not practiced my faith for some time before my diagnosis. But years ago, I had learned the art of contemplative prayer which requires much mental discipline. I have relied on my faith and released all expectations of myself.
Relying on others to help you is really tough and humbling. It means giving up pieces of your independence. I can't itch my nose or breathe without a ventilator.
There was a time when I considered removing the ventilator to stop fighting this battle. I was told by my doctors and team they would support and honor my wishes. After many conversations with Vickie, I decided to continue living as I could not bear to see her hurting. I am glad I am here to assure Vickie during the COVID-19 disruption.
My mind remains intact, though some may disagree. I find myself locked in this body, but I am always considering ways I can help others. I even developed a business plan to provide skilled caregivers for ALS patients.
We all have neurological diseases with no cure. We must hold on to the life we have and enjoy it until the final chapter. I elected to be the same person that I was before being afflicted by this disease, maybe even better in some ways. I would encourage you to do the same. I will remember you in my prayers. Your brother Jack.
