The Tale of an ALS Survivor #13
9 months in after my diagnosis of terminal ALS, I began to feel I was at the Tip of the Spear, I need to be the ONE to sharpen my wits so I can pierce this veil of doubt and sadness hanging over me.
I still was not ready to die.
But I am ready to sell my pool table. I always wanted a pool table, big full-size professional, finally I had it. We had a lot of great times around that table with neighbors stopping in to play.
It really wasn’t a hard choice.
The pool table took up the only room in the house that could become a bedroom. Mona was sleeping in our bedroom and I was in the hospital bed in my office, that was lonely.
One day I was having a conversation with one of my therapist and the subject of my sex life came up. I had to say it had gone away. Having no use of my arms and legs and only the use of two fingers, I had that part of my life fade away, there were so many other things to think about.
My therapist told me that my wife and I were missing out on a very important part of our lives. I told her I didn’t feel comfortable having a one way connection and she said, I wasn’t creative enough. I gave that a lot of thought before I brought it up to Mona.
One day I told Mona that the therapist told me we needed to have a sex life. That didn’t sound very romantic when I told her that, it sounded like a command. We were both pretty occupied with trying to survive. Mona is the love of my life and I was trying to look out for her needs also, which, might be different than mine. It was a very difficult time for both of us, I had become very needy and selfish and that was not romantic. Intimacy comes in many forms. Just knowing how deeply Mona loved me was priceless.
I have never met a Challenge this big. My life was fun and I have plans.This is not part of my plan?? I was spooked at, why me. I’m a nice guy, a vegan who only eats organic food. I try to be positive in my thoughts and deeds.
The answer is not obvious.
No one knows the cure.
I was undergoing Chelation therapy and taking supplements, including cannabis, and weekly B12 injections. In addition, my treatment included massage, Craniosacral therapy, B12 shots weekly and physical therapy which required me to be squirming 45 mins. a day on the floor. I was only getting worse. I gave up Hope many times. Hope sounded good, but I was sinking. No one can imagine what the uncertainty has done to my confidence.
Having to sleep in the hospital bed in my office was the most lonely time of my Challenge.
One day lying in my bed I could hear Mona pushing, pulling, making lots of racket. I asked, “what’s going on?”
She said “it’s moving day. You’re not sleeping in that office one more night.”
My pool table had a new home and I was going to have my wife next to me while we dreamed together again.
Good news was hard to come by, being in my new bedroom with Mona was a precious gift. There were no steps here for Bret to fall on trying to put me to bed at night. My new bedroom was in the family room. I had a view of everything in the main part of the house. It made a huge difference in my mind just by being where the Action was.
I need to make an important point here, my body was fighting for it’s Life. My Spirit was my relief, it was still free.
Now I needed a communication device. I hadn’t looked for anything to communicate with because I had not been able to figure out how to use one in my condition. Mona had a walkie-talkie to contact Bret.
Finally, the telephone company came to install a special telephone. I just had to press one button to summon an operator to direct my call. However, I couldn’t press the button.
So my neighbor Carl came over and customized my traveling wheelchair with arms 10 inches above the regular arms. Those extensions allowed me to
lean sideways, first in one direction to move an arm on the outside of one of the extensions, then lean the other way to lift that same arm up in the air. Finally,I’d lean back into the first direction and drop a still functional finger onto the button, which I could then press to call an operator.
If this sounds complicated, it was. But after a while I adopted the same set
of swaying motions to press one key at a time on my computer keyboard with a single finger.
I learned to ask for help, and folks were Happy I would ask them.
That’s why I encourage everyone reading this who needs support for ALS to contact info@everythingals.org We are here for You.
I belong to a community of folks who Live in the forest. We have a meeting lodge that we meet at once a month to share a dinner. I stopped going at first because of the stairs I needed to go up to get in. My friends were starting to miss me. One day I got a call from my friend who told me a bunch of guys got together to build the ramp needed so I would feel safe coming to dinner.
That’s Love made manifest. I started to come out of my psychological and physical shell.
I had a lot of time on my hands to think about my situation. I was thinking about the details involved in my day-to-day survival when I realized, “Hey, No one survives forever, I may want to be ready for what comes next.”
My past experiences with psilocybin mushrooms had opened a window into a parallel world that seemed like this world but with vibrant colors around all objects. It gave me a feeling of comfort to experience something seemingly real beyond my normal perception. I remembered this experience and felt like the End was not going to be the end.
I need to make an important point here, my body was fighting for it’s Life. My Spirit was my relief, it was still free.
After spending 3 years in The Holy Order of MANS, I felt A deeper meaning to my life than ever before. When I left my family at 18, I left behind my families Catholic faith. It had been a terrible experience for me. Heaven or Hell, according to them, I was going to Hell. I found a much more comforting message from The Order.
We are multi dimensional Beings, living many lives, on our evolution to the realization we are all connected in a Cosmic conscious union “Divine Power, playing hide and seek with its self.”
My mother told me God was in everything and was everywhere. That scared me because I was a naughty boy. There was a bigger story coming to me, I just wasn’t ready yet.
It did not take long after I left St.Louis, my home town, and moved to Hawaii to have a whole new view of Spirituality. In 1969 Spirituality was a haven for those who wanted a deeper meaning to their lives. I was one of them. I was looking for the meaning of what my mother told me, God is in everything and is everywhere. What does that mean? Maybe God is another word for Cosmic Consciousness. I know nothing, but have a lot of faith in “ the unknown being aware of little ole me”.
I have been on my Spiritual path knowingly for 35 years now. I have heard of miracles and have experienced my paralyzed body rise out of my wheelchair. I personally have been touched by a Power beyond my previous experiences in my life. What is behind this phenomenon?
I live my life in Awe of the Unknown.
Every day brings a new possibility. I was about to be Touched!!
