*** This was written a few months ago before I was diagnosed with Guillain-Barre Syndrome. I was originally misdiagnosed with another illness but shortly after returning home things started getting worse… I’ve since spent a month in the hospital and have been properly diagnosed with AIDP (Guillain-Barre Syndrome) and treated with IVIG. I’m now recovering at home and am buckled up for a marathon recovery. This has been a crazy story, but even with the initial misdiagnosis, this is how it started…***
The look on their faces let me know I wasn’t hallucinating. “This is a joke, right? I’m moving my feet. I’M MOVING THEM! Why aren’t they moving?” My husband’s face turned white as every drop of blood was diverted to keep his heart going. The Dr. avoided my eyes and stared at my feet as if he was willing them to move through telekinesis.
“I can do it. I know I can. I know I can… I know I can…”
But I couldn’t.
The moment I realized I was paralyzed from the waist down was one that will haunt me for life. I honestly can’t remember much after that other than feeling confused about why the paralysis would come and go and fearful that it would travel up my body and I’d stop breathing. All I could do was close my eyes and pray as they took tube after tube of blood and eavesdrop as the doctors spoke in hushed tones outside my door. Nobody understood what was happening, but they knew that things were serious and answers were needed quickly.
Once they deemed me stable for transport I was strapped to a stretcher, loaded into an ambulance and sent six hours from home to the Mayo Clinic. As I felt the familiar roads move underneath me, I joked about how I was having a bad dream and was going to get out and walk to the beach when I arrived. Instead, I was greeted by the compassionate smiles and hurried feet of nurses and doctors that seemed to know everything about me and the words…
“We’re so glad you’re here. We’ve been waiting for you.”
Almost two weeks later, I’m walking again. I’m at home on strict bed rest, pumped full of all sorts of medicines while my body heals. I can make it around the house supervised, with the aid of a walker in case I should fall. But I can walk. At moments, I experience the most horrific, indescribable, spine-crushing pain. But I can feel.
How I ended up in this situation is one series of unfortunate, bizarre, practically unheard of events after another. What happened is nobody’s fault and couldn’t have been prevented. It was just incredibly bad luck.
When the doctors finally settled on their diagnosis, I made the mistake of looking it up. I’m a data-driven person and my first instinct was to hunt down any and all peer-reviewed, scientifically sound medical literature so I knew what to expect. The results of what little data I found on the internet ended up being less than encouraging… It turns out that there are just too few cases and effectively no funding for research. I had officially surpassed being called a “medical zebra” and become a “medical dinosaur.” The seeming improbability of what was unfolding isn’t the point of this though…
When the neurology team (all six of them) came to present us with their findings, I met them with a long list of questions based on my very limited internet search. The attending physician stopped me half-way through and told me to put down my list, stop looking on the internet, then he looked me in the eyes and said “Write your own story.”
So that’s what I’m doing. I choose to write my own story. I choose to give my body the time it needs to heal, stay off the dark side of the internet, ignore all statistics and write my own dang story. I choose to embrace those words and encourage others to do the same.
As part of writing my own story, I’ve decided to do what I can to help others with rare medical conditions. It turns out there isn’t a whole lot of money going towards researching rare medical conditions because… they’re rare. There’s a lot more science, education and outreach that needs to happen and only so little money to spare. However, two things that will never be in short supply are: a) people wanting ridiculously cute, inspiring t-shirts and b) human resilience.
I’ve chosen to partner with a crowdfunding partner to raise money for researching rare genetic medical disorders by selling t-shirts emblazoned with the words I’m holding so close to my heart. The goal of this campaign is to sell at least 100 shirts, with 100% of profits going directly towards the Ehlers-Danlos Society. (But even if we only sell five, they’ll still go to print!) The campaign will be open until June 18th and orders will ship approximately June 28th. So hurry up and click here or select the image below to buy one for you and a friend- I’m sure they’d love the message no matter what their story is.
** 7/25/17 Update – After raising almost $1000 for medical research and advocacy by buying cute t-shirts, we decided to do a “push goal” of raising money for Guillain-Barre research. Same shirts, another great cause! This time, the proceeds will benefit The GBS/CIDP Foundation International. To order your t-shirt, click here.