Candidate

 

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.

 

An End Has A Start

Life happens. Isn't that one of those old cliches? Well, it has always happened to me and I'm done with it! I have spent too much of my time letting life happen to me, as opposed to going out and making it happen my way. I inherited my mom's gentle spirit and take a backseat attitude, along with my dad's tragic crumble under pressure and give in attitude. Let me tell you, it's not a good combination for taking a stand.

Currently, I am working two part-time jobs, neither of which has any kind of benefits, like health insurance or paid vacation time. I have been working long hours endlessly, through sickness and in health, with no breaks and no advancement. Meanwhile, I have continued to look for something regular, full-time, singular, different, and especially one that includes some kind of additional benefits besides pay. Last week, I found one. So, I am momentarily keeping the job I do at home, and I sadly gave my two weeks customary notice at the other. "Sadly," because I enjoy the people I work with. Unfortunately, the new job will not wait for me. So, again, I try and do the right thing. Continue with my commitment to the old job with my notice and still go in to the new job to show my new commitment to them. What is the result? Misery! It's terrible. I am trying too hard for everyone else. I am not doing the right thing for myself. The good news is, by week's end, if I survive, I will be back to two jobs (although more hours than before) and hopefully, soon enough, ONE job. The thing is, I am not that healthy. I am much healthier now than I have been anytime this entire decade, but this is literally driving me to the grave. And for what? So I can earn enough money to pay for my exorbitantly priced transplant meds and all the crazy meds that I take to fight the side effects of the transplant drugs? None of this makes me happy. None of this fulfills me. All it does is feed me and clothe me and give me a crappy place to live. This has to change and I will make it happen.

On the other fronts, I need to make more progress as well. At least I am starting to make headway, but I have a long way to go. There have been a couple of posts in the recent past about women that I have taken a fancy to. One of which I have made a mild effort to make a date with (or whatever) to little effect. Here again, I need to overcome myself and be definite and forward and ignore my doubts. I need to do this for myself. In the other case, I may be fighting an uphill battle that no attitude adjustment can change. But I will not forget and I will continue to work my way towards a chance. Any kind of chance. A chance to end this dark pathway I've been on and create a path that I can feel proud of. That is, once this upcoming week is over. I still have butterflies rumbling around my gut and I want to change them from ones of stress to ones of anticipation and excitement.