During my last extended hospital stay for brain surgery, I experienced a lot of disturbing hallucinations. I think I was mostly unconscious during these times, in my mind, I was convinced that I was being held captive by alternately two separate underground terrorist groups who for various reasons wanted me to pay for my alleged betrayal to their respective causes. Despite not being able to walk, I managed to avoid capture for long periods of time by riding the rails all over the U.S. Despite these situations all being imaginary, I found solace in forgoing my fight and flight instincts and giving up. I allowed the hospital worker terrorist group to capture me for their surgical experiments and the military terrorist group to capture and imprison me for my beliefs.
It was all incredibly scary and I have had a difficult time putting these imaginary battles behind me. However, the idea of giving up has continued to feel like a great decision – one that gains more and more appeal as time progresses. In one of those hallucinations, I was trapped, so I simply laid down and tried to sleep. I was done trying to find ways to allude my potential captors. In reality, I am also finished with trying to find ways to continue to survive. My long time fight against VHL (Von Hippel Lindau) has found me at a stalemate, yet it is a very precarious position. I have lasted longer than I ever thought, and I am tired.
I am fully aware that millions, if not billions of people have much more difficult struggles which they handle with strength and grace. In addition, I am fully aware that there are some people close to me who are in crisis. I understand crisis and am absolutely out of energy to deal with it. This is about me losing the desire to fight anymore. VHL is a relentless and endless genetic syndrome and I am done with trying to navigate the unforgiving bureaucracy of health coverage in its many forms. It is not enough that my health continues to decline, but that I constantly have to prove to faceless entities that I am broken. There is a lot of paperwork necessary to prove that I am "sick," and most of it is insanely repetitive and incredibly inadequate. I find it all discouraging and exhausting, which is why I am too tired to fight anymore. I have fought very hard for a long time to live as normally as possible and not allow my medical asides to be anything more than an occasional distraction, which is why trying to convince others that I'm unwell is so awful.. I want to rest. I want to crumple up all of the forms, pile it up, and climb atop and rest.
