Learning to Walk Again

I am a professional actress.  Never starred in any mainstream productions. Never been on Broadway. Never been trained. Never participated in an acting class. Never been in Hollywood.  I am a professional actress. You'll find me playing the lead in 'The Chronic-als of Illnesses.' I play the spoon hunter.

If you haven't guessed by now, I'm a chronic illness survivor. The diagnosis is postural orthostatic tachycardia syndrome.  I had been experiencing syncope, low (and fast) heartrate, along with joint dislocations, intense chest pain, dizziness, vertigo, oddly colored extremities depending on what position I was in, etc.  Did I think to tell anyone? Course not! Fainting twenty plus times a day and dislocating joints right and left is all part of growing, right?  Either that, or it's for attention. You pick.

Two and three quarters of a year ago, I woke up and couldn't move my legs. I went to the emergency room, and got rushed to the children's hospital straight away.  During the hospitalization, I came clean to the doctors and my parents about my symptoms (I was only 16 at the time). The doctors didn't know beans about the illness, though they attempted to understand the severity of my symptoms by tricking me into thinking they were going to hold me upright and then letting go of the gait belt.  Probably to their disappointment, I collapsed.  Another pleasant doctor experience to add to my extensive list. Thankfully, I could walk by the end of the week, and was sent home.  Cue multiple physical therapist visits, frequent doctor visits, extensive testing, constant 'you're-faking-this-es', and an extreme amount of frustration, aggravation, and debilitating pain.

This is the part where I became an actress.
"I'm doing so much better!"
"My chest doesn't even hurt anymore!"
"Gee, I can't remember the last time I fainted!"
"I just didn't sleep so good last night."
"It's alright!"
Wrong.

It wasn't alright. I was finally diagnosed with Ehlers-Danlos Syndrome alongside Dysautonomia, and it was nice to at least have an answer as to why my physical condition was so screwed.

Tornado, cyclone, call it what you will; October hit, and I got sent right back into a wheelchair. I wasn't paralyzed, but I was indeed unbearably weak.  By December 2014, I was back in the hospital. Nearly all of the doctors and nurses thought I was faking this complex condition, and all stated that 'no one can dislocate something on accident,' or 'if you wanted to walk across the room, you could,' and all other sorts of nonsensical insinuations based only off of burnable textbook material.

But I acted. I acted my way straight out of that hospital, and pretended to be stronger, and walk taller, and faked my way all the way until January when...
...I woke up paralyzed.

But this time, I was losing feeling. Fast.  I was hospitalized yet again. I faked my best positive attitude. "It's alright! This has happened before!"  Except this time, I was paralyzed for 9 months.  I continued to have blood pressure issues, heartrate problems, and syncope.

I was an actress. Everything was fine. Everything was happy. Everything. No one knew I was miserably depressed.

I think it was a God thing when my mom found out about stem cell treatment by way of one of our doctors. I had stem cells removed from my stomach, and they got sent off to wherever it is they reproduce them. Soon after, I was on a plane to Mexico to have those cells reinserted.

The goal was to have three transfusions of cells; however, due to Dysautonomia and all of its lovely chaos, I had to stop at two transfusions. Three would be overdoing it (especially since at the end of the second, the paralysis moved up to my navel).

I didn't see a result. I didn't see anything. My head hurt worse. My paralysis had worsened. I thought I would immediately wake up and walk. Nope. Not at all. The doctors assured me that it could take up to a few months for them to work, but I didn't believe them anymore.  One morning, I woke up and did what I attempted to do every morning. I tried to wiggle my toes...but this morning, they moved.

It was a slow process; the neuropathy was unbearable. I could feel every single nerve connecting. It burned. At that point, I began to have hope once again that these stem cells might somehow be our answer to many healing prayers.

Then I lost feeling again.
Bye, hope.
Hello, faith.

"Okay, God," I said (when no one was home except myself), "I'm gonna walk by faith."  I put pillows around my wheelchair, locked the brakes, and manually set my feet on the floor. I...I felt the floor. I had forgotten how a floor felt.  My joints cracked; all of them. I was trembling. But I took a step. And another...and another.  I made it all the way across the floor to my mirror, and the first words I said in that mirror were... "I'm so tall!"  All of this led to a significant improvement in my POTS symptoms. Everyone called it a miracle. I still do.

I've been walking for over a year. Sometimes, I'll still walk over surfaces I haven't been over yet, and it feels new, and odd, and beautiful. Yes, my POTS symptoms still exist. I'm still very much a spoonie. I'm still very much an actress.  I can't tell you if it was solely stem cell treatment that helped me improve so much, because I think it was a combination of God, prayers, hope, faith, stem cells, doctors, friends, family, support, and resilience.

If my story tells you anything, allow it to encourage honesty. Honesty will save you. No, don't be the person who rattles off every single symptom they're experiencing when the grocery store clerk gives a rehearsed, 'Hi, how are you?' But be honest to the ones who are there to help you. I don't care what any non-spoonie tells you; sometimes, you just can't fake healthy, and that is O K A Y. We're different. We're resilient. They don't understand.

You might be like me. You might leave this story and give the biggest smile to the next person who tells you that THEY see an improvement in your symptoms, when they don't know spit. I should practice what I preach, but I can tell you that playing the role of a healthy human is something that only a healthy human owns the rights to do. Be yourself. If you're sick, okay. If you feel brain foggy, okay.

Acting all healthy doesn't work.
I should know.
I'm a professional actress.
...But I'm thinking of retiring pretty soon.