“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
I could be safe. I could give up this type of running and the associated risks. It would kill me to give up the adventure I've seen with running, hiking, backpacking, mountain biking, mountaineering and rock climbing. The adventure, the risk taking is inherent in who I am. I would be nothing without it.
“One day you may no longer be able to do this. Today is not that day."
I guess the heart of the resentment is that I don't want to die because of this stupid disease or, um, condition.
“I don’t believe this is a disease-it’s just a condition. And you can teach that
condition to obey you.” Eddie Martinez
Besides the resentment, I realized I've been complacent with my training and my dreams and goals. My training for Vol State was lack luster. I lost a little weight, I did back to backs. I was just happy to be out there running. When push came to shove, I would have been so much happier if I had tried, set my training goals high, pushed myself. Just getting the miles in was an inexcusable error on my part. I needed to go faster. I needed to train more specifically. Ultimately, my poor training and med screw ups (see previous post) contributed to my failure at 210 miles.
How am I fixing this? A friend has offered to train me. It won't start until September. I've told him my big dreams, ones that seem unattainable. Perhaps with his help, guidance and encouragement, I can succeed?
“Complacency is a far more dangerous attitude than outrage.” Naomi Littlebear
“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.
"If you can't excel with talent, triumph with effort." Weinbaum
I drink too much, I don't have talent, I am persistent. One thing I'm good at is coming up with things I want to do and accomplish. Most of the time, the things I want to do are somewhat odd and well beyond my ability. I hope to increase my ability and put my dreams within reach. I'm willing to make the time and put in the effort. Consistent and persistent and all that shit.
It's fantastic to hang around ultrarunners. They are generally people who have accomplished incredible feats in their athletic lives as well as their personal lives. Another wonderful thing about ultrarunners is that many of them, even some of the most accomplished, look like me, average. You'd never know by looking at them that this one has completed hundreds of ultra events or that another was one of a select few who finished Barkely or that yet another few could run 314 miles in a week and, ten days later, complete a 100 mile race. Some are doctors, lawyers and business owners. When they share their stories with me, I am humbled and inspired. I want to do the things they have done. I want to be good at what I am doing.
"The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn like fabulous yellow roman candles exploding like spiders across the stars . . . " Jack Kerouac
Perhaps I've said too much? Perhaps I didn't say the right things. I don't know. What I do know is that a fire has been lit in me as a result of my resentment and complacency. I will not let them get the best of me. I will do more and be more. I will succeed even if it's only because I've created a definition of success that works for me. I will keep trying to do things that are beyond my limits and, for now, I refuse to be complacent. I will keep trying to release the resentment and feel gratitude that I'm alive. I am willing to put in the hard work. I will succeed.
As a fellow Addisonian, your article is challenging me to look at my own broken places; my own self sabotage. As a former college athlete, I struggle to commit the basics of 3-4 days a week of exercise; that's crazy-making especially because of my family history of stroke and heart attack, in addition to my own Addison's disease (perhaps I need to re-read why you term it condition; mind over matter?) I applaud you; most people would rather look the other way, when cracks in our "self" become glaring. Most of us, especially those who are high achievers in life, use Minimizing and Excuses like a warm blanket, which eventually begins to suffocate us rather than warm and protect us. I will cheerlead you in your decision to stop drinking. For what it's worth, I am not a drinker, only because so many in our culture struggle with alcohol on some level. Lastly, I leave you with a lyric from a favorite song by Sanctus Real, "If weakness is a wound that no one wants to speak of, Then "cool" is just how far we have to fall, I am not immune, I only want to be loved,
ReplyDeleteBut I feel safe behind the firewall; Can I lose my need impress? If you want the truth I need to confess
[Chorus:]
I'm not alright, I'm broken inside
Broken inside
And all I go through, it leads me to you
It leads me to you
I'm not alright; I'm broken inside, broken inside. All I've come through leads me to you, leads me to you."
Thanks for your courage to share your brokenness, so others might benefit. We don't have to stay broken, after all.
-Jade
Dusty,
ReplyDeleteThank you for sharing this. Thank you for also sharing your previous rant. I stumbled across your blog a couple months ago as I was training for a half marathon. I ran that half marathon. I ran it successfully. And I put up a pretty damn good time.
Less than a month after the race, I was in the ER/hospital nearing a full blown Addisonian Crisis at the hands of an incompetent medical community that I thought was going to kill me due to their stupidity. I've put a pause on running since then. Out of fear. And to get my health back into check. I plan on starting back up slowly soon.
There isn't much in terms of distance running and Adrenal Insufficiency, so thank you for showing us that you CAN do it... with a little extra preparation and a few set backs here and there. I look forward to logging more miles, and hopefully completing a full marathon one day.
~ Amber
http://clearlyalive.blogspot.com/
Jade-WOW! Great lyrics! I just downloaded the song and will listen to it while I'm running. Thank you. Good luck to you with your challenges and self sabotage. I think sharing how we feel makes us stronger and more powerful. You go girl!
ReplyDeleteAmber-Sorry about your ER experience. Don't let it stop you from running. You CAN complete a marathon (or 13 of em in a row if you really want to like I did last year).
You gals are welcome to join the Addison's Support forum www.addisonssupport.com there are many active Addisonian's there!
Thank you both!
Thank you for sharing that post! I've been diagnosed for years but I'm still feeling anger and resentment. It's not all the time but it returns often enough that I have to work on it.
ReplyDeleteI'm a runner in my head! I even subscribe to A magazine. I get out there but can only do a few Kms and then suffer a lot of pain in my leg. I've done the physio route with no results.
I'm also 'chubby'. I have a healthy diet except a weakness for sugar, so I have a small idea of just how hard it is to give up something.
It will change your life, I believe.