This week’s Gauntlet Story Feast writer, Sarrah, holds a very special place in my heart. I met her through a local friend who shares an EDS diagnosis and the same neurosurgeon. She attended high school with Sarrah, and they reconnected online while she was in Boston getting her master’s degree. This friend opened her home so Sarrah could have needed surgeries in Maryland and recover here. Sarrah’s bravery to leave her dream job and seek treatment blew me away. Her courage to take her recovery at face value, move by herself to Texas and jump back into her career inspires me even more. This piece shows the achingly honest truth about the brokenness we suffer.
An inspiration. A hero. Broken
By Sarrah Hannon
An inspiration. A hero.
I’ve been called these things many times by family and friends. They have observed the events of my life and the hurdles I’ve overcome. And because all they see is the outward appearance I’ve adopted of humor, self-assurance and smiles, they tell me this is who I am.
My story is not heroic. It is not inspiring. If I am supposed to be an example of how to live when you’re dealt a difficult life you can’t control, I worry for others like me.
“You’re just being modest,” you say. No, I’m just being honest.
What people cannot see is the every single day struggle. I’m not talking about the physical struggle. The physical struggle is impossibly difficult but you develop ways of managing it. And while the pain is unbearable and takes over your life, it is sadly not the most paralyzing obstacle. No, I’m talking about the mental and emotional struggle. The one that you think you have handled at the start of every day until you realize that you’re just lying to yourself. You end up having the same arguments in your head repeatedly, no matter how many times you’ve had them before. And yet each time you come to the same conclusion after arguing both sides of the story; your life has changed, you have changed. That realization feels like a fresh wound every single time.
Just a few years ago I would wake up each morning the minute my alarm sounded. I would bounce out of bed instantaneously and be ready for work in no time. I performed my job with the greatest of energy, producing more work than 4 people in half the time. My mind was moving a million miles a minute while I assessed and analyzed each facet of my job. After work I was going to classes, getting my masters degree. Pushing my mind even further. I loved it. I was invincible. “A force of nature,” as my dad used to call me in high school. My type A personality and OCD served me so very well. My energy was poured into applying my extensive knowledge or, outside of work, pushing my young body to new limits. I handled all of my adult responsibilities with ease; money, taxes, appointments, vacations, cleaning, etc…I had aches, pains, injuries and even serious surgeries, but they didn’t stop me. My spirit was stronger than my body.
I’m a shell of that person. It takes me a solid twenty minutes after my second alarm goes off to just convince myself to drag my body out of bed every morning; not just because of the pain but because I no longer have that thirst for the day. My type A personality and OCD are now a mortal enemy to me. I struggle to keep up with my adult responsibilities because of the anxiety that grows inside of me. My mind still runs a million miles a minute, but it is filled with worries instead of analyses. I get anxious every time I receive mail from a hospital or doctor, to the point where I simply do not check my mailbox. I get anxious calling doctors to make new appointments, and that anxiety completely freezes me when I actually have to attend the appointment. Cleaning seems like a daunting task, not because it will take me time to do it, but because I know that it will lead to hours upon hours of rest afterwards to recover.
I am constantly running the figures in my head to determine just how much energy I can spend. Arguing with myself about the things I really would like to do versus what my body should actually be handling. I convince myself that my pain is justified, and this is not big scary go to the ER pain. Minutes later I’m in a puddle of tears, because I have also convinced myself I’m being a baby. Suck it up, Sarrah, you’re not that sick. Minutes after that I’m reassuring myself its okay to feel this way. I AM sick.
They tell you that your faulty collagen will cause your bones to be less dense, tendons and ligaments to stretch, digestive tissue to shred, and anything else that uses collagen as glue to fall apart. This breaking happens over time, all at once, and most of the time more than once. They give you surgeries and medicine to temporarily patch these things up. Each break comes with a barrage of doctors who know what to do or can at least come up with a plan.
What they don’t tell you is that it will also break your spirit. And only you can find a way to put those pieces back together. Only you can figure out how to navigate the inner turmoil of re-defining yourself. No doctors can help. There is no plan. Every time your fragile spirit shatters you’re forced to pick up the pieces and define yourself yet again. But how many times can you do this? How many different labels and definitions can you give yourself? How many different people can you try to be?
An inspiration. A hero.
These are labels.
The sign I wear today says
Sarrah is a 28 year old forensic toxicologist. She has three degrees, in chemistry, forensic chemistry and a masters in forensic science. Sarrah is a self proclaimed gypsy girl, growing up in Ohio, then living in West Virginia, Boston and now Texas. She is living with Ehlers Danlos and a host of other conditions. Recently she had three spinal surgeries. In her free time she’s a fervent pit bull rescuer and advocate. Her boy Orfie is her savior.
If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at firstname.lastname@example.org, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.