We have all read Ashley and Taylor’s beautiful story of an extremely scary terminal diagnosis ending with everything turning out to be okay (If you haven’t, it is the blog post before this one). No doubt they are forever changed from their individual experiences. An experience like that leads people to help others who are not as fortunate. Which is why we are here, and why Ashley started “Garage 10”!
The fact is, most rare disease diagnoses are not terminal. Most people live through their rare diseases, and some are permanently affected even without a finite number of days left on earth.
Hi, I am Kasey Gary, the other half of “Garage 10.”
Ashley asked me to be a part of her organization because of my own experience with a rare disease. Although it is an experience vastly different from hers, it is an experience that brought us together.
My story starts on October 29, 2017, waking up and knowing something just was not right. The previous two nights I had a little neck cramping, so I thought I had just slept incorrectly.
October 28, I had some weird lip twitching before I went to bed.
I ignored it, didn’t think anything was wrong. I felt good.
When I woke up the next day, on that dreadful day, my tongue felt weird. It wasn’t what I could feel, but what I couldn’t feel. I couldn’t feel or move half of my face.
To try to uncover my new oral sensation, I headed for the bathroom mirror. And then it all came rushing in. I was that cartoon character waiting for the grand piano to fall on me. I couldn’t move. I couldn’t scream. I was in disbelief. Instead of my usual self reflecting at me in the mirror, I saw what I would eventually learn was Bells Palsy.
The left side of my face was not moving at all. In addition to my tongue without its sense of touch gone, I couldn’t blink. And worse, I couldn’t smile.
Was it a stroke? What was happening?
Did the piano fall on me? It felt like it had because my breath was taken away.
My husband and I went to an after-hours clinic for an official diagnosis, and we were given it: I had Bells Palsy, a “temporary” facial paralysis affecting one side of my face.
Worse, I was told there was no treatment…I just had to “wait” for it to go away.
I waited…but not very patiently.
As soon as Bells showed its angry head and found its new place to stay, I had pain.
The nerve pain in my face, behind my ear, and through my neck was one I will never forget.
I sat in stillness, in darkness, waiting for the pain to subside.
That was the word I clung to.
This diagnosis was just temporary. Just 4 weeks, maybe.
The pain lasted about a week but was excruciating. Once the pain subsided, I knew this was it. The temporary was over! I had done it!
How wrong I was!
That is when the research kicked in.
My one eye probably did more research in one week than both of my eyes had done their entire lives together.
What did “temporary” really mean? Was I still in this temporary timeframe? And what can I do to make “temporary” go faster?
Anything that was mentioned online or heard through friends, I tried it.
Acupuncture, physical therapy, spraying myself with topical magnesium – checked off the list.
I went to a chiropractor, did LED light therapy, sought the expertise of a neurologist. All completed.
Week after week, my face remained pretty much the same, paralyzed. This wasn’t my definition of “temporary.”
Six months later---SIX--- I knew I did not have a brain tumor or a stroke, but still half my face did not work.
Nothing helped and no one knew what to do with me.
If I had a nickel for every shoulder shrug, every deep sign, every pity look I received, I would be retired on some island by now.
I FINALLY found a doctor that gave me hope. Although it was something I did not want to hear:
10-15% of people with Bell’s Palsy do not ever recover.
Another piano and it was on its way to hit me.
But she caught it…this doctor could help.
She was my answer to my 2017 diagnosis.
She was my definition of “temporary.”
She was the one I had to find by uncovering so many other dead ends.
She knew exactly what was going on with me, and what she knew was devastating.
Not terminal or debilitating, but nevertheless extremely hard to swallow:
Bells Palsy was temporary. It was over, and what I had was what we all call “permanent effects.”
My face would never “go back” to what it looked like before October 29, 2017.
My smile was and is still, gone.
It took me a while to go out, I am very self-conscious of my face, I do not take photos of myself and I am forever changed.
To understand how much I am changed is to understand where I was before that day in October. I am a photographer, and I take damn good pictures—no, stories, of families, moments, laughter.
My husband’s smile matches mine, and we are proud of our two daughters whose smiles light up a room.
Smiling is not just a part of my face.
It’s who I am. It’s who we all are. Who I capture in a still shot. Who I work to teach my daughters. It’s an expression of happiness, we all need to express that.
I am so blessed that I found a doctor here in my city to help. I had traveled to Houston for a second opinion, but ultimately decided to keep my doctors here.
There are only a few doctors that deal with facial paralysis in the U.S. and they are not easily accessible to me. I could go to Los Angeles, Houston, Boston, overseas, or here.
I am so lucky - the travel to these other places would make my treatment unattainable.
When I first started seeing my doctor, she told me I would be with her for “some years” as would be anyone with permanent effects from facial paralysis. I wouldn’t be able to afford to travel multiple times to any of these cities.
My diagnosis is ongoing. I see a vestibular physical therapist, and I also will have surgery to help get my smile a little bit bigger and a little bit brighter.
And now, I never take a smile—or even a half of a smile—for granted.
And now, I walk a little slower, taking the time to enjoy the small things in life and even the small gestures like a hug, a handshake, or even a tap on the back. (We won’t talk about social distancing right now!)
And now, I listen. I listen with open ears and arms, to anyone who wants to tell me her story, no matter how insignificant or small she thinks it may be. Because we never know what someone is going through. Sometimes the smile won’t tell the story. So, if you need me to walk with you, I am here to help you through your “temporary,” or your “permanent.” Let’s get through it together.