“It is not death or dying that is tragic, but rather to have existed without fully participating in life – that is the deepest personal tragedy.” Ed Abbey, Confessions of a Barbarian
It feels like I rarely share about how I feel about this disease and how it affects me...here goes nothing. Warning: Profanity in the passages below.
After eleven years with adrenal insufficiency, I'm struggling with resentment about it. I'm mad. It's a constant series of adjustment, readjustment and research followed by more adjustment and readjustment. One thing I resent is that I will never be the athlete I'd like to be. There's precious little research, if any, about adrenal insufficiency and endurance exercise (ultras and beyond). As a result, I've had six years of experimentation. Some success, a lot of failure. It gets old, why can't I just run and be without alarms going off all the fucking time? Why can't I just leave the house without an injection kit and pills? Why do I have to explain myself to people about the medic alert bracelet and injection kit? It gets so fucking old. It's tiring. Because there's no research and no manual for endurance exercise and adrenal insufficiency, it's a constant struggle to figure out how to be the healthiest me I can be. I lose days to mistakes (all of 2012 to my freaking thyroid). I feel like my body betrays me even though I try to treat it well.
It's irritating to feel like I'm walking through the dark, attempting to find my way.
It's maddening to know that if I really screw up, don't take enough meds or don't have my injection kit with me when I need it I can die. I have control over these things. My greatest fear and probably the way I will die is that my situation will be mishandled by the medical profession. Most likely, I'm going to end up in an ER unconscious and unable to advocate for myself. Adrenal insufficiency is an orphan disease. It's rare and not well known. As a result, if I don't have a strong advocate with me in the ER, I will be mistreated or left untreated for too long and sustain permanent brain injury. Hopefully, I will die as a result. Permanent brain injury is too much for my family to bear. I wouldn't wish that on them ever. I'm a pain in the ass the way it is.
"Security is mostly a superstition; it does not exist in nature. Life is either a daring adventure or nothing." Helen Keller
"Do not be careful. Safety is an illusion based in fear, a self imposed prison with no hope of freedom." Charlie Engle
“One day you may no longer be able to do this. Today is not that day."
“I don’t believe this is a disease-it’s just a condition. And you can teach that
condition to obey you.” Eddie Martinez
“Complacency is a far more dangerous attitude than outrage.” Naomi Littlebear
And then, there's the self sabotage. I consistently told myself that I would stop drinking before this race (and every single other one I've done for years). The night before the race start guess where I went, Applebees. Why? For a couple of drinks to add to the tall boy that I had while on the bus. Really? What middle aged woman with a couple of chronic diseases does that before an event of any sort where she's set her goals high. Me. Did it work? No. Was it the cause of my failure? No. Did it contribute? Yes. The long term problem with drinking as often as I do and as much as I do is that it makes me complacent first thing in the morning. I'm just glad to get out and do as opposed to getting out an achieving.
I've gone days and weeks and even months without drinking but I've always gone back to it. I don't know why. This year at Vol State (my second year), hanging out with new and old friends, I felt like part of something. Part of a community. Part of a family. It's not often that I've felt like that. During the race (no drinking), I felt so much joy and happiness. It was an ephipany of sorts. I could see and feel happiness without drinking. It was intense and wonderful. I need to try to keep getting back to that feeling now that I know what it is.
I have decided to quit drinking. I have the support of my friends and my therapist. I will do it for today. When I wake up in the morning, I will commit to not drinking that day and so on.
“Self sabotage does not occur because you are weak. It occurs because your dream is weak.” Anthony Fernando
I do not have any particular talents with running or any talents in general. I am not built like a runner (a PA looked at a chest X-Ray when I cracked some cartilage in my ribs and exclaimed, "You have a tiny heart and lungs!"). I do not have the genetics for being a runner but it's what I want to do, it's who I am. I'm consistent but mediocre all around.