#4 The Tale of an ALS Survivor

I Knew How to End it Early

A day in my life as a Lifetime vowed Brother in the Holy Order of MANS would start with meditation, and follow with studies of esoteric literature, then cooking large meals, and stocking clothes donations for our homeless shelter. At night, I patrolled the neediest parts of town — in Honolulu first and later in San Francisco, where the Order transferred me — looking for and being available to serve the homeless and folks who needed support on the streets and in the darkest alleys. I felt protected by my intentions.

One day, in San Francisco, the FBI showed up at the homeless shelter where I was working and took me away for draft evasion. I had truly forgotten to send my forwarding address to the draft board 3 years earlier. The FBI gave me a choice to enlist or be flown back to St.Louis, Missiouri, to stand trial. My draft number had been 30, the first to go to Vietnam. When I got to Hawaii my past had disappeared and It had taken all I had to start a new life.

The federal judge gave me 1 to 3 years in social services. I joined AmeriCorps VISTA, Volunteers in Service to America, and worked at the Missouri State Mental Institution to fulfill my duty. This experience was preparing me for the mental fight ahead because at the institution, I witnessed insanity. That’s why later, when I despaired of ALS, I understood my job was to hold on to my sanity! I had worked in the hospital of the institution with the most severe cases possible and it took a certain mind set to be able to leave the days work behind.

I only worked at the mental institute for nine months. I returned to federal court in St. Louis and asked for an early release from my sentence. I promised the judge if he freed me that day, I would vow to serve mankind for the rest of my life. He freed me that very day. I returned to the Holy Order of MANS and announced I would continue to do service in my own personal way. I was given their Blessing.

I used to look forward to thinking about dying and how it would be a rite of passage. I believed, as Jesus supposedly said, “My father has a big house and there’s room for each of you.” I took that to mean that whatever level my consciousness was at, at the end of my life, that would be my destination.

I was prepared for death. I had seen many people die as a hospice director. When the neurologist told me that he believed my life expectancy was 18 months, I was shaken. It had been easy for me to believe in a story about death until a life-threatening challenge came straight at me.

In that year, my nerves had died. I felt that my arms were never going to move again. I would never walk again. I would never be able to eat again without someone feeding me. My dear wife and family had been taken from me in so many ways. Fuck You, ALS !!!!!

Just think about every movement you make in a day, and that goes for wiping your butt. I could not live without 24-hour care. The deeper meaning of this disease felt that I was living in a glass box. I had no privacy, 24 hours a day. That really sucked.

The necessities of life really changed for me. Now I was very thankful for my Hoyer Lift, portable toilet, sliding bench to move me in and out of the shower, and my loaner wheel chair from the Sacramento ALS chapter. My $26,000 electric wheelchair which came later had a joystick I could control with the two fingers that would still move. If I was to lose them, my chair could be controlled through Sip & Puff controls.

Sip-and-Puff devices are for control of a motorized wheelchair. Control typically consists of four different inputs from the user. An initial hard puff will enable the wheelchair to move forward, while a hard sip will stop the wheelchair. Conversely, an initial hard sip will enable the wheelchair to move backward, while a hard puff will stop the wheelchair. A continuous soft sip or soft puff will enable the wheelchair to move left or right respectively depending on how long the user blows into the tube, straw or “wand.”

I bought this wheelchair after I got my Social Security Disability and Supplemental Insurance. Thankfully, I was left with two fingers that could operate the joystick on my wheelchair. I was so proud of those two fingers; they never let me down through my whole ALS journey.

It was so troubling to have my neurologist, tell me I had 18 months to live. I was thankful he sent me for a second opinion to UCSF Medical Center in San Francisco to see Dr. R. Layzer. My medical bills were piling up just trying to find an answer. Mona had to give up her clothing business to care for me. Our finances were stretched to the limit. I had spent $6,000 before Medicare stepped in. They made me wait five months before they would help me financially. That’s why early detection is so important and a primary goal of EverythingALS, the organization I now support.

After Dr. Layzer’s examination on 1–29–06, he informed me I had rapidly progressive motor neuron disease, or ALS. He told me I should make an appointment to go next door to the Norris Center for a consultation about having a feeding tube installed. He also said he was concerned about my nursing care since I did not have any medical insurance.

Holy shit, these guys were serious.

Neither of these neurologists had anything to say beyond there diagnosis except, “Make an appointment to come and see me in three months.”

No, thank you. I was done with both of them.

I felt I had to take a different course.

No hope was the starting line. My family was suffering from the changes they had to make in their lives because of my mental and physical trauma. This was a 24/7 lifestyle change for each of them. I could feel the stress in their voices. I became very sensitive to how my attitude could affect the mood in our home.

One day, lying in bed and needing to pee (We didn’t know about the condom that connected with a tube to a container), I called out for Mona. Then I called out for Mona again, and then I started screaming for Mona.

She came into the room with a towel wrapped around her head and said, “Can’t I even take a shower?”

“No,” was my answer. “I have to pee and I’m not going to pee in the bed.”

Mona loved me but the stress was turning this challenge into a nightmare for both of us. Hiring my first caretaker gave my family room to tend to their life.

ALS was a mystery disease and every day we all learned more about the challenge we were facing. There was no happy ending in sight. I knew how bad it was going to get from reading about the progression of others, I tried not to talk about it. I started to stuff my depression. I felt like I had no one to turn to except for the mirror on my door, I was starting to move inside myself, because my outer world was scary.

“Help me,” I cried, hoping for some response from the mirror. I saw nothing, just my own really red eyes. I cried until it hurt.

This is when my imagination became dangerous. If this was a dead-end journey, I wasn’t going to be left out on how it was going to play out. I knew how, to end it early.

Lonely can never describe how I felt. No one could understand the isolation and hopelessness I was experiencing. I was my own worst enemy. I felt trapped. My cheery personality was fading quickly.

Both arms and both legs paralyzed. 2 fingers left to control the wheelchair. Dr Bedlacks 42nd ALS reversal at Duke University ALS Clinic.

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