2013: Loose Ends

That was the end of the notes that I kept documenting my go around with AMN. I wrote the following, today, 2 August 2021, based on what I can remember. Looking at it all in retrospect, it seems like a continuous, drawn-out rollercoaster ride, with high highs, low lows, loop de loops and hairpin turns, now and again, for an enhanced experience.

Things continued as I thought that they should until sometime in 2011. I continued drinking my Oil and waiting for Trisha to finish the film. Everything seemed pretty reasonable. I had things figured out and knew what to do. No surprises. Predictability was good. I have heard it said that complacency can get you in trouble.

I got a call from Kennedy-Krieger. The promising MRI data was not corroborated by any of the clinical endpoints. “So, what does that mean?” I asked.

What it meant was, the potential benefit of taking the Oil was no longer greater than its associated risks. The boys at Kennedy-Krieger strongly suggested that I stop taking the Oil immediately.

About the same time, I heard that the lady funding the film had lost interest.

While I do not remember feeling let down, I cannot confirm this. I have no recollection of these times. We were preparing to leave California. I suppose that I may have been so consumed by that process that I did not have time to think about it? Who knows? I do not know what to tell you about that one. Which is odd, I had been so engaged, so certain and so ecstatic about what the Oil would do for all of us. To not feel anything at all did not make sense. I do not remember.

I do know that I kept it pointed straight ahead as I managed the arrangements to move myself and young family across the country.

We settled in Virginia, and it felt right. Maybe there was relief in no longer needing to restrict my diet and follow the regimen? Again, another unsatisfactory answer: who knows?

This calm did not last long. A new type of anxiety took charge. Strange new feelings and emotions, very foreign to me.

Tensions started slow at first, before accelerating and eventually growing logarithmically. It was rough. I thought I knew what was going on. I soon realized that I had no idea. Eventually, just as I thought it could not get any worse, on 6 May 2013, my family imploded. After a couple of weeks, the shock of it all subsided a little, but not much.

The smoke began to clear, and I took stock of my new station in life. I was alive, had a job and home. Which were good foundations. I was also now a single parent of three young girls. And a cripple besides. It was hard to figure how this might play out. My experiences in life were of no help. All I knew for sure was that I needed to maintain a stable mind (whatever that was) and do my best to prevent further hemorrhaging. I knew little about the finer points of raising children, all I understood were the basic needs: food, shelter, etc. The balance of parenting, on my own would need to be improvised as I went.

This was a fine kettle of fish, as some wise man once said. With all of the caution that I had exercised coming up, it was unfathomable that I could be in this state. But here I was. Maybe I could best understand it by trying to figure out the events leading up to that cliff in May?

http://www.bradleykgillespie.com

Published by bradleygillespie

I am just a guy with a disease called adrenomyeloneuropathy. I want other guys with the disease to see the good parts of disability. Not the gloom. Not the doom. Make sense?

2 thoughts on “2013: Loose Ends

  1. I am sorry to hear of the family situation. I was left to care for my two alone as well when they were younger. You may already know this, but just in case it helps to hear it please know it gets better. The boys and I have found our own path and rhythm and though things are harder than they would be if there was help, we still are able to make it work and they are still thriving.

    Like

    1. You know it, Madame Sparrow. We got through the tough bits- my girls are grown up and doing well, aged 18, 19 and 21. You are right though, it does get better, even though we had some new challenges in the teen years……

      Thanks, as always for your support. Appreciated

      Liked by 1 person

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