Learning to Rely on Christ {an excerpt from my journal}

"[...] I want to do it all on my own, but, well, I can't get myself back to Heaven any more than I can get myself up off the floor when I fall.

For a few months this winter, I fell a lot. The combination of an irreparably broken hip, dizzy spells so bad I would forget which way was up, and general muscle weakness will do that to you.

Every time I fell, I eventually had to ask someone to come and pick me up.

I could crawl around my apartment living life at six inches above the ground for hours, and I sometimes did, but I had no power whatsoever to pick myself up off the floor.

I wished I could. I tried, with lots of giggle-worthy results but no success. I watched all the videos on how to get up after a fall, I came up with all sorts of ways to pull myself up -- it wasn't happening. In fact, the only result of all my effort was more time spent on the floor, sometimes with additional injury.

I am, very literally, incapable of redeeming myself from a fall.

Luckily for me, Heavenly Father saw fit to provide me with a "savior" (or twelve). Each time I fell, whenever I was ready to ask for help (or at least accept it when it showed up without my asking), there was someone willing to come and pick me up.

Elder Hurst had plenty of scriptural references for my troubles.

Sometimes, when I was actually hurt or it was 3 AM, it was an ambulance crew. Most of the time, it was missionaries: wonderful young men who not only picked me up, but made me feel like less of a failure as a human being while doing it.

No matter what, when I was ready to admit that I couldn't pick myself up and let someone help, someone was there. 

No matter how many times I fell, they kept coming. No matter how discouraged I got, no matter how worthless I felt, no matter how long I sat on the floor feeling embarrassed before I asked for help, they came. (And more often than not, they came with a reminder -- "Don't be embarrassed.")

Relying on Christ to redeem me from my spiritual fall is just as hard as relying on other people to pick me up off the floor. Admitting to myself that I can't do it all is hard. Whether it's the 1,000th time I've committed the same stupid sin, something terrible that another person does to me, a sucky thing that happens just because we live in a broken world, or my anxious little heart letting me feel despair... Christ is always there to pick me up. I don't even have to ask. All I have to do is open the door."

--

I'm eternally grateful to these men (and others) for not only cheerfully coming again and again to pick me up, but for pointing me to the Savior who can lift me out of far worse situations. 

Symptoms & Shiz: Charcot-Marie-Tooth Awareness, Part 2

There are a whole bunch of different possible symptoms of Charcot-Marie-Tooth.

If one of us went down, so did the other. #unity

Some of the most common early symptoms, often appearing in people who don't even know they have the disease, include

• Foot weakness and numbness 
• Foot deformities such as high arches and claw toes
• Muscle loss in the lower legs
• Balance problems
• "Foot drop" (difficulty lifting the front of the foot)
• Reduced reflexes 

I've had all of those symptoms for as long as I can remember. From a very early age - before I started preschool - I began wearing leg braces called AFO's to support my legs and ankles while I walked, prevent tripping due to foot drop, and slow the development of deformities in my feet.

Not pictured: I had tie-dye braces in middle school. I was the coolest.

 Just a few months ago, I learned that not everybody is subject to this test every time they go to the doctor. I'm still convinced it's pretty common, but for anyone who doesn't know, it's called a reflex test, and it involves a medical professional hitting your joints (usually knees, elbows, and ankles) with a little hammer-like tool to check your reflexes. I fail this one pretty hard, but they persist in doing it every single time. Optimists? Sadists? I'll never know.

On a related note, one test I haven't always failed is the one where they ask me to squeeze their fingers as hard as I can. Especially if it was after the reflex test, I used to have one heck of a grip.

If you kick them, you're good.

Two of the other main symptoms I had as a young child were hip dysplasia and scoliosis. These symptoms are mostly seen in people with "severe" CMT, which is definitely me. Neither of these were discovered by doctors until I was ten, but they were probably there all along.

How that discovery was announced to me:

Doctor, reading my x-ray: Oh my god, look at that spine!

Other doctor: Forget the spine, look at those hips!

Smooth. 

Throughout middle school, I had a series of surgeries to put pins and rods in my hips and spine. Plus two extra surgeries to fix mistakes the surgeon made, but that's another story. The end result of those surgeries was that I was going to be in a wheelchair for the rest of my life. That was bound to happen either way, but I reserve the right to be a little bit bitter about how it went down.

Middle school: The BEST time to become dependent on a wheelchair. ;)

In high school, I needed another surgery to help with the deformities in my ankles and feet. It was called a "triple tendon transfer," and it gifted me with flat, rectangular feet, rather than the high arches typical of CMT. I was offered the option of an additional surgery to correct my hammer toes, but I opted out. (Click this link to find out why. Maybe not while eating. Ain't no straight toes worth that, thank you.)

All of those same deformities eventually occur in the hands and arms as the disease progresses. So far, I just have muscle weakness and a barely-noticeable (please don't tell me otherwise) deformity in my wrists. Basically, I can no longer open jars, reliably pick up small objects, or squeeze my doctor's fingers to the point of breaking, and my hands get tired pretty easily when I write by hand. (I can still type just fine, thank goodness.)

He appears to be making more progress with that than I ever could.

Some of the other symptoms I have include tremors; constant burning and tingling nerve pain in my fingers, feet, and legs; lessened ability to detect and adjust to temperature changes; constantly cold feet and hands; dry skin; hair thinning in affected areas (which does not yet mean no shaving my legs, sadly, but I have hope); a lessened sense of touch in my fingertips; foot numbness; difficulty breathing due to a weakened diaphragm; and partial hearing loss.

I have to check my feet and legs often for injuries, because I don't always notice when I'm hurt. Injuries that do occur heal very, very slowly or not at all - I've had a bruise on one of my toes since October, and a bug bite I got on my foot in July seems to be a permanent scar.

Overall, the symptoms of Charcot-Marie-Tooth are a pretty huge part of my life. People tend to frown on saying that an illness defines you, and there are definitely other more important factors in my life, but having this disease has had a major role in shaping who I am. How could it not?

These two awesome videos show the lighter side to living with CMT. Highly recommend.

You Cripples Think You're So Special

Today I went to Walmart. (What a mistake, right?)

When I was parking, I noticed an alarming tendency for cars to be parked in the ramp spots next to handicapped parking places, so I chose to park in a spot where I thought it was unlikely to happen because the ramp spot was too small to fit a typical-sized car.

That was a nice thought, but it didn't work out as well as I hoped.

Fast forward to when I'm ready to leave. A car is, of course, parked just close enough to mine that I can't get onto my ramp once it's down. (Please note: This happened 5 total times in the 3 years I lived in Morgantown, but it's a regular occurrence here in the cesspool known as Allegany and Mineral Counties.)

Now, I'm not the world's best parker. I've never parked illegally, but I've definitely been guilty of parking sloppily enough that people have probably been annoyed. So I am generally pretty nice about this kind of thing, despite my inner (and insta) frustration.

Today was no exception: I decided right away that I was going to be pleasant and friendly and say absolutely nothing about it to whoever owned the car, trusting that just seeing me there would shame them into being better in the future.

That approach has never failed me before.

This time, however, it wasn't to be. The owner of the car happened to be the meanest little old lady I've ever met.

When she came out of the store, I smiled at her from where I was sitting (with my feet on my own car), said hello, and went back to texting while she loaded her groceries into her car. She put her buggy away -- allllll the way back in the store, because she's much more responsible with buggies than with cars -- and then returned.

"WHY ARE YOU SITTING BY MY CAR?"

<This is someone's grandma. Smile.>

"Um, this is my car, and I'm waiting for you to move yours so I can get in it. I need that space to put my ramp down."

"Don't you sass me, you little piece of sh*t!"

<She's someone's senile grandma. Smile.>

"I'm sorry, ma'am."

"You cripples think you're so special! You get everything just handed to you! Other people need to park too, you know!"

<Force a smile and don't open your mouth, Heather.>

"You f***ing little piece of sh*t! People like you shouldn't even be allowed to go out by themselves!"

<Okay, this grandma was probably in the KKK, a glare might be okay.>

"I should call the cops!"

"Um... for what, exactly?"

"You're just sitting here next to my car!"

<Senile grandma, senile grandma, senile grandma.>

"I'm waiting for you to move, ma'am."

"F*** you! [unintelligible muttering] Cripples think they're entitled!"

<My momma taught me not to curse.>

"Okay. I don't want to argue with you. Are you ready to move your car?"

"YOU CAN'T F***ING TELL ME WHAT TO DO WITH MY CAR!"

"... right."

So I decided to go back into the store, because some crazies just aren't worth fighting with and Senile Grandma couldn't stand there and curse into thin air forever. As soon as I turned to do so, she got in her car, slammed the door, and sped away.

Good riddance.

Anyone who says ableism isn't real, I invite you to look up Senile Grandma. She'll set you straight.

The worst part of my day? Walmart didn't even have washi tape.

How am I supposed to Mormon without washi tape!?

The Basics: Charcot-Marie-Tooth Awareness Month, Part 1

Everyone who's too scared to ask why I'm in a wheelchair, this is your lucky month. ;)

http://www.cmtausa.org/

I was born with a disease most commonly known as Charcot-Marie-Tooth. Other more descriptive names for it, for you scientific folks, are Hereditary Motor and Sensory Neuropathy and Peroneal Muscular Atrophy.

Most of you have probably never heard of CMT before, but it's one of the most common diseases you've never heard of, affecting an estimated 2.8 million people worldwide, about 1 in every 2,500 people.

Charcot-Marie-Tooth is an inherited disorder, meaning it is not contagious, nor can it be developed late in life. Everyone who has Charcot-Marie-Tooth was born with the disease, although many people don't know it until they're in their late teens to early 30's. The vast majority of people who have CMT inherit it from a parent who either has the disease or is a carrier for the gene that causes it. In rare cases, a child is born with a spontaneous mutation of the CMT gene, despite having no family history of the disorder. These individuals are then able to pass the disorder on to their own children.

Symptoms of Charcot-Marie-Tooth vary greatly based on the "type" of the disorder (the gene mutation) and even between family members who have it, but some of the most common early signs are

• Foot weakness and numbness
• Foot deformities such as high arches and claw toes
• Muscle loss in the lower legs
• Balance problems
• "Foot drop"
• Reduced reflexes 

Charcot-Marie-Tooth is a progressive disease, so many people are born with no symptoms at all and develop them later. My parents knew I had it by the time I was a toddler, but I have relatives who haven't experienced any symptoms until their 20s or 30s. 

There are currently no treatments to slow down or reverse the progression of the disease. Symptoms can be managed using leg braces, surgeries, physical therapy, and pain medication, but the disorder will continue to progress. There is some research being done into treatments for CMT, and prospective parents who have the disease are able to obtain genetic counseling to learn about their chances of passing it on to their children.

Do you have questions about CMT? I want to answer them.