The Story Behind Glass Body | Steel Soul

I have lived with Dysautonomia (POTS, EDS, Vasovagal Syncope, Reflex Anoxic Seizures [RAS]) for approximately 12 years. Before Dysautonomia, I swam competitively 9 times per week and ran cross country for fun.

This is a photo of me at 15. Clearly not a lazy or deconditioned person. However, you may be surprised how many physicians’ notes labelled me as deconditioned within two weeks of quitting swimming. You see, due to lack of awareness, Dysautonomia patients are often blamed for their disability before being diagnosed.

Honestly, I still struggle psychologically and emotionally as a result of such blame being placed on me. I was told more than once that I was an overly sensitive teenager who was growing rapidly. I remember struggling to take the stairs in between high school classes, thinking, “Why am I so weak? Am I going crazy? Why is no one else sweating and short of breath?”  I’m not sure how physicians thought “rapid growth & hormones” explained daily vomiting, frequent syncope, reflex anoxic seizures, and incredibly debilitating chronic fatigue.

Ironically, expert physicians have compared Dysautonomia patients’ quality of life to that of congestive heart failure patients.

Can you imagine living with congestive heart failure, struggling to perform the most basic parts of your day, and a medical professional then informs you and your family that your symptoms are all imagined or fabricated? These errors in judgment have crushed souls and isolated patients from their friends and family.

I am blessed to be diagnosed so quickly- with parents, siblings, and friends believing and supporting me every step of the way.  

Yet still, I am one of the lucky ones, diagnosed at Duke Hospital within a couple years of symptom onset. Within the support group at Duke, I encountered patients who suffered ten years before receiving a diagnosis. I met people who were dismissed by family and dear friends. Even with the hell that I went through, it could have been so much worse.

Thank you to my parents who were advocates for me when I could not be one for myself... For choosing to believe their daughter over the opinion of a physician. I hope to be that advocate for those who are not blessed with the same support.

Sean, my husband, is another supporter who has made Glass Body | Steel Soul a reality.

We met in middle school and began dating the year after I was diagnosed with Dysautonomia. In fact, I was homebound my sophomore year of high school. To this day, I cannot comprehend why he wanted to date the sick girl who was missing for a whole year.

Actually, our first date was in 9th grade. My sweet momma in law drove us to play putt putt. I wore a sling because my first pacemaker had been recently implanted (as a 15 year old).

Most boys would have gone easy on me. Sean, barely beat me and continued to gloat about it for years. Apparently, he kept the score card all this time. I loved that he didn’t seem to see a girl with a pacemaker. He saw me for who I was, underneath all of the crisis I was going through.

He saw past the glass body and treated me like the steel soul that I am.

However, we didn’t start dating until two years later.

After we married, our relationship and lives turned upside down. The summer of 2010 was brutally hot. I couldn’t walk across a parking lot without passing out or going pre syncopal.

Let me be clear, Sean has a heart of gold, and we love eachother dearly, but this was not an easy adjustment.

Loving someone does not make sacrifice easy. Worth it? Yes. Easy? No.

And Sean sacrificed more than I could ever express on paper.

Sean will tell you, no matter how much time you spend with someone who has a chronic illness, it is impossible to fully understand how limited they are until you live every day by their side.

But we learned. We grew. We changed together. We somehow made each other stronger.

Sean grew to become my fiercest, most loyal advocate.

He moved us out of our first apartment into a little townhouse with no stairs, a built in shower seat, and an attached garage (so I could independently go to drive-thrus during the summer).

He realized, long before I did, that if we ever wanted to experience the semblance of a normal, quality life, we needed to be strategic… about everything.

In addition, I was determined to work and attend grad school. Every little part time job I tried ended quickly and poorly. I simply didn’t possess enough upright hours to work.

Sean started his small business, Soccer Genome while finishing school. The business was performing well, but we needed a second salary to get by and manage medical expenses.

I felt distraught, hopeless, and anxious. I found myself ineligible to receive disability benefits because I paid some income taxes yet not enough to qualify. Had I never worked, I would be eligible for disability benefits through my parents.

Again: ironic, right? Trying your best to be a productive citizen after becoming disabled in highschool can disqualify you for disability benefits.

And then, Sean came up with the strategy that changed my life: he hunted for a corporate job in addition to running Soccer Genome.

He requested I drop my pride and quit searching for jobs that I could physically “handle.” He asked instead, that I manage my health as a “full time” job while he took on a second one.

After some convincing, I took my new job title quite literally.

I possessed limited hours upright per week, so I utilized them to my advantage. I set strict priorities… by far the most challenging adjustment in living chronically ill.

I learned to say “no.” Often, physical therapy was the only activity I could tolerate for 24 hours. I only allowed myself to say “yes” to commitments pending I had completed my physical therapy for the day. For a while, physical therapy and personal hygiene was my entire day.

Bonus points if you pause here to imagine living that reality.  

Sean’s sacrifice allowed me to prioritize my very demanding health needs.

Without his sacrifice, I would not have researched physical therapy options. I could not have designed my own physical therapy protocol, increasing my upright hours to 45 per week and still growing.

I would not have the opportunity to test my physical therapy theory on other Dysautonomia patients within the Duke clinic.

So, yes, this blog is for those living with Dysautonomia. But it is also for the friends, parents, husbands, wives, sisters, and brothers of those who love someone with a chronic illness.

 

Never underestimate the power you hold to change the world for someone else.

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Dedicated to my person, Sean.