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. 

God provides.

Moving across the country by myself is not the most stressful thing I’ve ever done. But it’s close. So I’ve been pretty magnificently stressed out about it. Finding an apartment that's wheelchair accessible (easy in Morgantown [as in I did it in an hour last summer], apparently not so easy anywhere in Northern Utah), convincing myself I can safely drive across the country on my own (still not entirely convinced, decided to do it anyway), getting my unreliable but still beloved car ready for the trip (someone remind me to get an oil change this weekend, please and thanks), hashing out the protocol for flying with a power chair with AmeriCorps' lovely travel agents (I. Hate. Airports.), convincing my parents I'm not going to end up homeless somewhere in Iowa (ok, they're not convinced, and neither am I), working out the costs and realizing I can just barely financially survive the next few weeks until I get my first stipend, finding another apartment because the first one fell through (at least now I have a potential roommate)... it's been, realistically, about as stressful as I expected it to be. 

That said, it hasn't been over the top stressful because of one thing: I know that this is what Heavenly Father wants me to do. I don't have the slightest idea why, but I know that this process is being divinely guided. Every time I get to a point where I feel like throwing my hands up and saying, "You're right, I can't do this," God throws me a bone. That doesn't mean the problems get fixed, but I get just a little bit of inspiration that helps me step back and put my anxiety-ridden heart back in place. 

When I was freaking out because maybe I've never received real revelation in my life because I'm a sinner and I'm not sure if this is really what God wants or if I just fabricated it myself because I like to make life more difficult, I suddenly discovered that I say my best, most heartfelt prayers while driving, and that personal revelation I was doubting flowed more forcefully than ever somewhere between the West Virginia Welcome Center and Coopers Rock. 

When I was in need of a reminder that I'm strong (read: stubborn) enough to survive this next year of serving a community I know very little about 1949 miles from home, my grandma gave me a card from a family friend who probably knows me about as well as anyone, reminding me that not only am I strong enough, I'm also prayed for. 

When I was worrying about being alone and sick in a strange place, well, I glanced at Facebook and remembered that I'll have at least half a dozen friends within an hour's drive of wherever the heck I end up living, and that's five more than I had when I moved to Morgantown three years ago. Someone will help me put together furniture or bring clean clothes and a phone charger to the hospital or whatever crisis comes up my first week. (Right?)

And when I was nervous about whether I could stand up for what I know I need to do even though it's crazy and it seems like everyone around me knows it, the still small voice stood on its tippy toes and shouted up at me, "READ YOUR PATRIARCHAL BLESSING AGAIN!" (Sometimes I imagine the still small voice as starring in Horton Hears a Who.) And I suddenly realized that every word in my patriarchal blessing was meant for today, just as much as last September and five years from now. 

I can... probably... do this. Not on my own power, because really all the power I've got is a mile-wide stubborn streak, but on the power of the one who sure seems to want it from me. My patriarchal blessing claims that I have the spiritual gift of faith... I'm not so sure about that sometimes, but I'll bank on it for now.

I'm going to be really annoyed if this is another wrong road, Heavenly Father.

Peace, peace, be still.

When I was 18, I was diagnosed with an anxiety disorder. I’ve been fortunate because over time, the symptoms have vastly decreased. They’re still there sometimes, but I can recognize them when they’re happening and calm down without locking myself in a closet. I’m not sure that I’ve ever even had my entire body in the closet of my current apartment, and I know for a fact that I’ve never closed the door. That’s a pretty big accomplishment, given some of the things I’ve been through in the past year.

One of the biggest targets for my anxiety as a teenager was storms, after a particularly awful one took out part of the roof of my home. My fear grew to the point where, at age 18, I would shake and tear up and forget how to breathe if it rained too hard. If the weather called for thunderstorms, I would spend the entire night sitting on my bed refreshing a weather map. Spring and early summer were not a good time for me, man.

Just a few short years later, I’m doing so much better. I can go outside in the rain, shrug off a tornado watch, and only need to be holding my cell phone and not an umbrella to open my front door. There have even been a few times recently when I’ve gone to bed without first checking my laundry room for potential rapists or murderers (it’s a totally rational fear). The last panic attack I had was in September, and frankly, I’d like to see just about anyone live that day in September without hyperventilating. ;)

For the most part, anxiety isn’t something I think about anymore. Every once in a while, though, I feel that familiar tightness in my chest and the normal background noise around me becomes louder than the constant ringing in my ears. It goes away within seconds, but it’s a reminder – not so much of my past fears, but of the healing power of the Atonement. I surely know that I did very little to overcome my anxiety. Yes, I practiced self-care and learned techniques to ease my nerves, but the level of healing I’ve experienced doesn’t come from those small things I have done. It comes from learning of the Atonement of Jesus Christ and from constantly seeking a deeper understanding of its application to my life. It comes from doing my best to live the commandments I’ve been given, and from not fleeing God’s presence when I fail. It comes from discovering that I have a Heavenly Father whose love for me is real and can reach beyond any darkness that surrounds me – or the walls I build around myself.

I don’t want to claim a testimony I don’t have, but there are spiritual things that I know to be true. I know that there is a God. I know that He knows us each individually, all of our heartache and suffering and anxiety, and He wants the best for us. I know that by living the principles of the gospel, even half-heartedly, I’ve been given peace beyond any I could imagine in the first twenty years of my life, and I know that the more I cleave unto God, the less power the whirlwinds of life have to alter my course. In the words of Nephi, “I know that he loveth his children; nevertheless, I do not know the meaning of all things.” I don’t know everything. I don’t know why school-aged children with disabilities milder than mine are left to die in cribs in developing countries. I don’t know why people who are trying to follow God get lost and harm other people in His name. I don’t know if every single thing I believe is true. I hope to someday gain a knowledge of those things, but right now, I don’t need to.  What I do know is that I have a Heavenly Father who loves me, and an older brother who lived, suffered, died, and rose to redeem me and give peace to my nervous little heart.

I couldn’t do much of anything without them.

My heart is full today.

This morning, an investigator asked me if I'm "a missionary for two years, like these guys," and I got to tell her no, I get to do this for the rest of my life if I so choose. I am pretty sure that response confused the crap out of her, but it totally made my day.

I would love to be a full-time missionary. I think that's pretty obvious to anyone who knows me at all.

Some of the best times of the past few years of my life have been while talking with and listening to people who've found themselves in a place where they need to learn about the gospel of Jesus Christ.

My understanding of the Atonement, my love for my Savior, my ability to feel compassion for strangers I never would have known had they not taken the time to listen to a Crazy Jesus Girl... all have been expanded beyond what I could have imagined.

Without ever wearing a nametag (well... with my own name on it), I've gotten to dedicate about as much of my time and effort as I can to doing the Lord's work. I've street contacted (poorly), tracted (awkwardly), taught gospel principles (with a whole lot of divine help), and I dearly hope I've in some small way been used to help someone on their journey to a closer relationship with their Father in Heaven.

If it had been 100% up to me, would I be serving a full-time mission right now? Well, of course. But am I happy that it wasn't up to me? Of course.

I'm never going to be called and set apart as a missionary, but that's no loss for me. I get to do "missionary work" every day. I'll never be released. The ways in which I go about serving my fellow man will change -- there's no way I'll get to spend so much time actively working with the missionaries in Utah! -- but there's no time limit on my ability to be "Sister Heather."

As a direct result of not being healthy enough to serve a mission, I've learned how to be a missionary wherever I go. I've created friendships that I've been promised will last throughout eternity. I've grown to love the scriptures and to rely more fully on Christ. My heart has been broken and then healed more perfectly than it could have been before.

Like always, God's plan is so much better than anything I could have come up with for myself.

What comes next? Not a clue.

After five (sort of six) years of college, I'm the proud owner of two undergraduate degrees. (Woohoo!) 

The rational question, and thus the one I get asked approximately 50 times a day, is "What are you doing next?" 

I wish I had an answer to that, I really do. 

Right now, I have a pretty cool part-time job doing GIS analysis -- AKA "what I majored in, like maps and stuff" -- for a small business here in Morgantown. I'm enjoying it, but it doesn't provide the income I need to justify staying here long-term... and truth be told, I feel like it's time for me to move on. 

Over the past year or so, I've felt pulled in a whole bunch of different directions. Washington. Arizona. Utah. A different part of Arizona. Philadelphia (please no). Utah then Arizona. 

Every time, I've obediently thrown myself into going where I think I need to go. (Even when it's Provo.) And every time, it's stopped feeling right. I am pretty familiar with that feeling. (See also, that time I almost served a mission.)

I've prayed. I've fasted. I've gotten about a dozen blessings. (Okay, not specifically for that, but still.) I've prayed some more. Nada. I know Heavenly Father is there and that He cares what happens to me, but He doesn't seem too driven to tell me where to spend the next X months of my life. 

Meanwhile, I've been sick. Like, lost-track-of-how-many-times-I've-been-in-the-ER sick. For a few months there, I worried that I wouldn't be healthy enough to do much of anything after college, but I've finally begun to feel better enough to consider a future beyond the walls of my bathroom or the hospital. The persistent IV bruise on my left forearm is healed up and everything. Hallelujah. 

So, between being sick and not getting any crystal clear personal revelation, I've had a tough time figuring out what it is that God would have me do, or even what I would have me do. I still don't know.

As of today, I'm cautiously pursuing the idea of moving to Utah for a few months and then maybe Tucson. I don't have any compelling or even interesting reasons. I know exactly 0 people who will be in Tucson, and not a whole lot more than that in Orem. All I know is that Morgantown isn't the place for me to live out the rest of my life, so I might as well go somewhere else and see what happens. Baby steps, I guess, like stepping into the fog. 

I don't love the fog, but I love what happens when I continue moving forward.