Where are all the posts? Am I still alive?
The answer to the latter is “Yes, very much so.” The answer to the first is a little complicated (as you would come to expect it from me. I can do nothing simple nor straightforward.)
I feel that I’m am achieving a sort of “zen.” My counselor, after much work, says that I am well on the path of acceptance of my new me. There will be ups and downs, but my last visit was full of hope. Not hope that the disease will be cured, as that is impossible. Nor, was the hope focused on regaining some of my liberty, nor figuring out with definitiveness what this disease is.
The hope was focused on my “todays and tomorrows.” My abilities will go up and down. My pain will do the same. My focus was on what lies ahead. Not on what has gone on with my body.
I believe I arrived at this “zen” due to a few seemingly insignificant, but huge pieces of data.
- Most neurological disorders are idiopathic – they never achieve a name or diagnosis. This leads to treating symptoms, not the disease. You can’t target a disease that you don’t know.
- We are in the neighborhood as to what this enigma is. It is a variant of Kennedy’s or SBMA. The symptoms are a match. The DNA is not. However, being idiopathic and incurable; we are treating only symptoms. This is the protocol for treating a host of neuro-muscular disorders as well as many neurological disorders, undiagnosed as well as diagnosed.
If something is incurable and all you can do is treat symptoms, it begs to question why fight to find out the exact name? I know there are established protocols for treating diseases. The meds for SBMA are out of reach for me. There may be meds targeting specific diseases, but they largely treat symptoms, not the disease.
My journey is changing. I will not surrender. I refuse to go gently into this good night. I have been a soldier all my life. Thus, I will continue to soldier on.
I thank you, my dear reader, for walking with me on this journey. This blog will continue. However, I feel we are in the throws of “transition.” Tomorrow is a myth, until it becomes today. I will live for the myth.
I hope you continue with my on my journey. I believe we are moving from acceptance to living.
Jay C. “Jazzy_J” Theriot