Growing Pains

Clary Taylor with feeding tube

Clary Taylor's Story

Maryland, USA

Age: 16-24

A little bit about my journey:

My Diagnosis

hEDS, PoTS, SMA Syndrome, Globalized Dysmotility, Peripheral Neuropathy, OCD, PTSD

Time to Get Diagnosed

13 years of symptoms, 2 of actively searching. Technically still looking for explanations for certain things.

Year I was Diagnosed

2018 (hEDS)

Sending Love to

Dr. Debra Regier

Hospital I'd Recommend

Children's National

This is my story:

My earliest memories are of pain.
That sounds rather dramatic to say, but it’s true. I was the kid who was always limping through Elementary School, who constantly complained of this or that ache. But as a child, I was assured that it was all growing pains. I distinctly remember being told by a physician that “one day I would know what real pain is, and [my growing pains] aren’t it.” Little did they know.
In the 8th grade, I managed to dislocate my jaw by biting into an apple slice. It locked entirely shut. After a few months bouncing from doctor to doctor, I was sent to Children’s National, who admitted me in the ER after a failed relocation attempt. I have no consistent memory of the next three months, only flashes here and there. I’m told that after six days of treatment with no results, I was taken to the OR to have my jaw surgically reduced. Coming out of that surgery, I had what looked like a seizure (but wasn’t), and when I became lucid again discovered that I was paralyzed from T10 down.
Neurology couldn’t find a reason for the paralysis, and decided I must be faking it for attention. I was sent to a rehabilitation hospital where I slowly learned to walk again. Through this process I dealt with quite a bit of medical abuse and gaslighting, as my physicians didn’t believe that I was legitimately ill. I left nearly three months later with peripheral neuropathy in my feet, dislocating knees and ankles, and a fair amount of PTSD.
Months later, I finally got in to see genetics. During my jaw adventure a medical student mentioned that I might have hEDS, and I was diagnosed with it in the waiting room of the Genetics Clinic. Years of unexplained pain and other health issues were explained and validated in that three-hour appointment. I actually remember crying on the car ride home- not out of sadness, but because I finally had an answer for everything that had happened to me. Despite what I’d been told for months, I wasn’t crazy.
Now, after two years of proper treatment and testing, I’m a part-time wheelchair user and rely on crutches or my cane to get around without my chair. I have a GJ feeding tube in order to receive nutrients that I can’t get myself because of my digestive tract paralysis, and am awaiting Port placement because I’m reliant on IV saline infusions four times a week to hydrate myself and control my PoTS. I take a variety of medications daily and spend the majority of my time bouncing around from doctor to doctor.
But in spite of my poor health I’m a pretty normal teenager. You can always find me either hanging out with friends, reading, binge-watching crime shows and studying for my upcoming SAT. I aspire to become a novelist, and plan to go away to college. Despite my illnesses I’ve accomplished good grades, great friendships, and an acute understanding of who I am. The experiences I’ve lived through have been horrible, but I’ve come out the other side strong. That strength has been well-worth the growing pains.

Let’s play 20 questions:

The song that keeps me going is:
Legit Tattoo Gun by The Front Bottoms, or Hypnotic by Zella Day
I never leave home without my:
My go-to feel better movie is: 
If I was in the hospital, the celebrity I would most love to visit me would be:
Elizabeth Olsen
When I need to relax, I:
My favorite food is:
Kate Farms Pediatric Peptide Formula 1.2 (ha!)
The quote that keeps me going is:
"You wake up every morning to fight the same demons that left you so tired the night before and that, my love, is bravery."
When I need a laugh, I:
Text my best friend, who I actually met through the CWC!
Meet my pets (or favorite stuffed animal):
I currently have two dogs (Molly and Harper), and am getting another in the next year to train as a service animal.
My hero is:
My mom!
When I’m having a down day I binge watch:
Criminal Minds or The 100
My favorite book to get lost in is:
Sick Kids in Love by Hannah Moskowitz
I want to be best friends with:
Safiya Nygaard
The thing I’m most proud of:
Choosing life.
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Meeting my best friend!
The most hilarious thing that has happened to me is:
Ramming my wheelchair into a trashcan while learning to use my SmartDrive. Not funny in the moment, but in hindsight it's pretty hilarious.
It really means a lot when someone does this:
Checks in to see how I'm really doing.
My favorite social media account to follow is:
Willlow the Corgi
The advice I would give to myself back at the beginning of this journey would be:
This is real. No matter what the first few doctors tell you, you're not faking this. Keep going, and know that it'll all get better soon.
Words of encouragement that I’d give to my fellow warriors are
Same as what I'd give myself. You know your body better than anyone else possibly can, and when something's wrong you can tell. Stay strong.
Follow my journey:

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