The Tale of an ALS Survivor # 11
As the Body Deteriorates, My True Worth Awakens
Mood Swings
Ten months into my diagnosis of ALS with only two fingers on my
right hand functional but still having the ability to speak, I felt lost.
I still believed in myself as a spiritual being who was having a
physical experience, one that I felt I could overcome, but
the daily loss of more bodily functions, including the ability eat,
drink, dress, and keep myself clean, was a hard foe to deal with.
Bret my caregiver was such a positive motivator, every day pushing to make sure he was moving every muscle in my body. He would always be trying to get me out of my wheelchair and onto the floor to do my squirming, thankfully he wouldn’t listen to me when I said no. Bret had a Big heart and lots of on the job training.
Things always didn’t go as planned, we couldn’t keep the time schedule at times, he also had his personal life, we both did our best to be respectful of each others needs. I stopped expecting everything to be just right, that helped a lot, I had never played this part before and getting to write my own script was tough.
Every day was different depending on my mood, sorry to say my mood dictated my conversation. It was hard having an overview of the situation when I played the main part and had no experience. Cannabis really helped me to be more flexible. Thank you to everyone who came in contact with me during my challenge. You seemed to understand I was having a hard time and you gave me a lot of space to be angry, sad, appreciative, kind & what ever the day brought me.
It was medicine for me to express my frustrations in an atmosphere of non-judgment. I held in so many feeling, so often, I would go on overload, crying my heart out was my only relief. It may not of helped me physically but mentally it was a big relief to let those tears flow.
Thanks again Mona, you held it together while I was falling apart.
My body was deteriorating but I still had some, I should stop there, a LOT more than SOME responsibility for my frame of mind. It was so hard for me to get over, POOR ME. It was all about ME. That realization, gave me a TIME OUT. If you need help like I did, contact info@everythingals.org for support.
Yes I had the worst disease I could dream. I’m not the only one, every one has their hidden or not so hidden, in my case, Challenges or Horror story. This ALS sent me back to school, the school of hard knocks. I would give me a c- so far. I was trying, but it was way too scary at times. I had an idea of what was coming for me and I was not that brave.
I Was a Male Model
It was spring time and usually Mona and I would be getting ready to travel the Fair circuit. Mona made beautiful clothing out of silk velvet and rayon cloth. I was a male model for Mona’s clothing. My job was to show men they could wear beautiful silk velvet just like the ladies.
I had not ventured out often during my illness. I was just about to meet my fellow wheelchair-bound brothers and sisters. We went to the Whole Earth Festival at the University of California @ Davis for three days. We spent the weekend visiting all the vendors Mona and I got to know over the 12 years Mona had her handmade clothing business. Mona gave up her business to take care of me. My wife was my partner thru thick and thin XOXOX.
When I saw the first person in a wheelchair at this event, I started to cry. I had never known the hardship these diseases caused patient and family. Now I was one of those people and when I saw another person in a wheelchair I would always wonder what happen to them?
I started to realize my worth was no longer how many muscles I could move. This was the first time I had stopped moving on my own in my life. I would have never known my true worth without having my body taken from me.
I felt I had died in away. I only could exist if I was taken care of.
Everyone was on a stage playing their parts and I was the audience or a ghost. My perception of being a watcher had two sides. One: I could see the efforts everyone was making to fulfill their idea of success. Two: what was my Idea of success now?
I had always been the provider, the one to go out in the middle of the night to help someone.
What was I going to do now to view myself as a success? That was a real tough one. I needed someone to talk to.
And I found it: my friend the mirror. That was a friend that I couldn’t lie to, that was a real eye-opener.
I would drive my wheelchair up to the full length mirror and sit there. I would just stare for quite a while. It was really strange seeing myself paralyzed. Never in my wildest dreams would I ever have thought I would be in this position. It was so bad that I had to find something good. The good I found was in my eyes. They talked to me both sadly and with hope. I’ve never felt so close to myself.
I visited my friend the mirror regularly. It was like going on a date with my inner Being. Sometimes I would vaporize my cannabis before the date. It contributed to a deeper conversation.
Deep Conversations: Marriage and the Will
Mona & I became partners in 1999. I asked her to marry me but she said she had already been married and did not want to do it again.
I said. “OK”.
The next year I asked her to marry me and her reply was” isn’t everything ok the way it is?
I said, “OK”.
The third year after I asked, her reply was, can you wait another round of seasons.
“YES” was my answer. Twelve months later, one evening, I told Mona she was going to marry me, in reply she moved her head up & down in affirmation. Wow, that took awhile, but it sure was worth it.
Two years later after our marriage, I lose 95 percent of my body movement. I’m told I have ALS and my life expectancy is 18 months. I felt so sorry for Mona… what had I got her married to. This was a double tragedy.
That’s what I thought, but not Mona. She is a very serious, loving human, who only married me because she saw deep connections between us, both spiritual & physical. She never gave up hope that I would recover.
Mona had 4 children and I have one from a previous marriage. We had been married for 2 years at that time. I had a conversation with my daughter in which I told her that I was leaving her half of my estate. Mona reminded me that during our marriage ceremony, I adopted each of her children. I called my daughter Samantha and told her I had made a mistake about the Will, her reply was, dad, I would rather have a sister and 3 brothers than your money. Wow, one less concern.
