Since my scoliosis surgery in August, I have lost three close friends to extended illnesses. Scott died after a long history of complications from Type I Diabetes. He was my age. Cindy passed away after a lengthy battle with breast cancer. She was my age. And then the toughest loss, my dad, passed away after a long battle with the complications of Diabetes as well. This has been an extremely tough year in terms of seeing suffering and death first hand. I haven’t noticed people really living as much as I used to. It seems that the life is somehow being drained from them. Maybe it’s because of economic strain, world anarchy or just that things don’t seem to be going well for most of us. It seems like we are living shorter and dying longer these days. Suffering is growing probably because we focus too much on “sickcare” instead of “healthcare”. But even in a perfect system, suffering will always exist. Things will always elude human awareness and answers.
After my surgery, I felt enthusiastic about the loss of all my previous disease symptoms. The only pain I felt was the intense pain from scoliosis surgery, but that is certainly to be expected. After Cindy died, my dad died a few days later. The day after my dad’s funeral, I started feeling some of my previous symptoms blink in and out kind of like a wire with a shortage. I had felt this before but chose to ignore it and try to stay positive. The surgeon told me that as the nerves in my back started growing back together we would know for sure if the old symptoms of central pain would return.
I hate to even talk about it but my old symptoms of systemic central pain are returning. So along with a pretty healthy pain level still from my spine healing from surgery, the old pains, the numbness and tingling and the extreme fatigue are setting back in. Most days my body just shuts down at some point and I fall into a deep slumber. I lose track of time and wonder how long I have been asleep when I finally do wake.
The one thing that I do have going for me is that no doctor has proven a definitive prognosis and with my symptoms that means that I could potentially live like this a normal life span. The thought gives me great pause as it should. The thought of living the rest of my life in this condition is something that I have thought about before, but only as a worst case scenario. I am trying to get more help with the NIH and any other facility t.hat helps with rare disease research. I am still determined to fight because I refuse to let this be it, to let this be my reality.
I have had a lot of time to think lately and I have so much that I want to do. I want to get back into photography and making documentaries, get a small house at Serenbe with a plot of land to have an organic farm. I want to expand helping others with rare and debilitating diseases and also those that just need help. In helping others, he helps me forget about my condition if only for an instant. I am not sure if that is a good reason to help others but I am going with it. I close my eyes at night and I envision the farm at Serenbe Farms, waking up early to take care of my garden. I come in for breakfast and rest for a spell, maybe answer a few emails from those out there suffering and searching for hope. I take my new Sony SLT-A77 camera and work on a few documentaries to bring awareness to issues that have been abandoned or orphaned by our society. After all, if you’re not in it, you’re not in it. I would travel to speak on behalf of others at conferences around the world. I would distract myself from suffering with all the things that I am passionate about. Oh yes, and music and songwriting fit in there somewhere.
This all sounds great coming from a guy that has been bedridden for three years. And oh yes, neck deep in medical and living debt. But those are just things that I want or things that I dream about. I don’t need these things to live. All of those things would require the intervention of several hundred thousand dollars and I just don’t know people that pass out things like that. If I did, I’m not sure I would use it for that anyway because there is so much suffering out there. There is the great dilemma. Where does what you have for yourself and what you give to others begin and end. It is easy to get lost on the end of your needs and completely lose sight of what you wanted to do in the first place, help others. I think the answer is different for everyone and is found within one’s own soulful reflection.
I am trying to get moving again. Life is just hard right now and that’s ok. Life is hard for many of us, but we can’t dwell on the things we can’t change. We must fill our minds with good things, mindful that things can change no matter what the situation is. We just have to Be Strong and Take Heart. I miss you Dad.