Wednesday, December 16, 2015

P-Day! {lessons learned}

One of my favorite things about being friends with the missionaries is the amount that I can learn from them.

For example, Elders Hurst and Fidel taught me that outside of WV "collar" and "color" are pronounced differently, Elder Espinosa taught me not to leave my wheelchair unattended, and Sister Wonnacott helped me learn how important it is to remind people of what they're doing well.

So, this week, I'd like to document what I learned from emailing with my favorite missionaries. Along with mostly-funny random photos of their time in Morgantown, because.

Elder Fidel is basically my favorite honorary kid brother. Seriously, that's not the point of this, but oh my goodness I love that little punk. ANYWAY this week he reiterated the lesson about collars and colors by telling me a story about getting colorful teriyaki sauce on his white collar. :) And also he sent a really sweet list of things he loves about the "south" and working in tiny rural branches. "Talk about a people who love their Savior.  Their faith is so strong and just awesome. Makes missionary work a pain sometimes, but they're so great." I can lose sight of that myself and I feel like most missionaries do sometimes too, so it was so sweet to be reminded of that wonderful part of our culture. People who love the Savior are great!
There are so many funny photos of him to choose from
Elder Fitch reminded me of the power of a positive attitude & the importance of having friends who can uplift you and help you recognize the blessings in your life.
Me: I need to get a picture of you two.
Elder Fitch: Only if I can look chill.
Elder Higgins sent me a literal two-word email... but his mass email made up for it. :) He wrote about how the love he's felt from other people in his life has impacted him. "Always remind those that you love that you love them, do it in a time and place that will allow you to convey the sincerity and genuineness of that love, it will leave the greatest impact on their lives." #preach
There's an explanation for this photo but I'm not going to give it.
Elder Hollembeak/Solemnbeak is the king of short but significant emails. I had told him about something I was worried about, and he replied with a word document containing a talk he wanted me to read. The cool thing was that it was my absolute favorite talk! (Elder Bednar, "That We Might Not Shrink") That talk was given at a time in my life when I really needed that message, and just as Elder Solemnbeak realized, I needed to read it again today.
The camera shy one... all the other pictures I have are from baptisms.
Elder Rueda actually sent his mass email on Monday, because that's how APs roll. And as usual it contained something super deep and relevant to my life. "No matter how much you love and want something for someone, they must make the choice for themselves. I've really grown to see that the only thing that's really ours in this life is our agency, or ability to choose for ourselves. Everything else is the Lords. We must choose happiness, it doesn't just come on it's own." Being patient with people I love when they're making choices that prevent them from being as happy as they could possibly be is tough, but the Lord is patient with me.
Surprise! It's not the chastity picture.
Elder Su'a-Filo/Souffle also reminded me of the importance of keeping a positive attitude no matter your situation. His enthusiasm for missionary work and "the WVCM experience" makes me smile. He's going to do amazing things in Hazard!
Sometimes I initiated new elders by making them grill dinner.
Sometimes they accidentally threw spices in my eyes...
Sister Wonnacott gave me some great advice about figuring out what I want to do with my life. I guess a missionary going home in 2 days would be the person to ask. :) "My suggestions? Just give up on life and live as a hobo on the street with me..... or if you don't want to do that, you could try this thing that I had to do for this new "My Plan" program for returning missionaries. It has you read your patriarchal blessing and circle all the words that describe you and underline all the actions that is says God wants you to take in your life. [...] Ponder what KIND of thing God wants you to do, pick a course of action, then pray about it." Boom. Thank you, whoever came up with programs to help new RMs.
Name tag theft! 
Elder Zazueta made sure I know the importance of remembering EVERYONE'S birthday... I said something about Higgins's and Rueda's but forgot his so he kindly gave me an opportunity to practice the repentance process. (Don't worry, I was forgiven because I remember exactly what he orders from Cafe Rio, which is obviously more important.) Also he's planning on putting Elder Rueda on date to become "Mexicanly reborn." I can't learn something deep from them all every week. ;)
Just like with the other photo including Elder Z, no explanation will be given.
I love these kids. Every one of them (including the ones who are home or who didn't email me this week) are such a blessing in my life. If you have missionaries near you and they aren't your best friends, you should either buy them a burrito or bake them some brownies and tell them they no longer have a choice. Missionaries are the greatest.

Tuesday, December 15, 2015

Life right now. {random thoughts}

I'm so sick today I can't even shower safely. It's gross. But having to call 911 because I fell in the shower would be worse.

I don't miss living in Morgantown so much as the WVCM. The missionaries here are good kids, but the missionaries in the WVCM have become family. My biggest hope for wherever I live next is to be in a ward where the missionaries actually need my help.

My second biggest hope is to live somewhere with good Mexican food. #gringalife

Tomorrow is the WVCM's P-day. YAY! Friends!


I've realized that we really baptize children at age 8 because 8-year-olds can be monsters and they need Jesus... I love my little monster so much.

I have a new wheelchair joke t-shirt and nobody here would appreciate it so I haven't worn it yet. But it's great.

I've lived here for ~17 weeks and I still have no friends. Surprisingly enough, it doesn't bother me at all. Thank goodness for phone calls, texting, and WVCM's P-day.

It absolutely horrifies me that I personally know human beings who think Donald Trump would be a decent president.

Warm days in December make everything a little bit better.

Thursday, November 19, 2015

An open letter to my doctor {what I'll probably never say}

My neurologist is a jerk. He's a great doctor in that he "knows his stuff" and is very well-educated about various neuromuscular diseases, but he wouldn't know bedside manners if they punched him in the face. I dread going to see him because I know how I'm going to feel each time I leave his office, but I haven't been able to find an alternative... yet. In the interests of pre-appointment therapy, here's what I would tell him if I was just a little bit braver.

Dear Doctor L. -

The first words you ever said to me were "Why are you here?"

Maybe we should back up, though. The first words you ever said in my presence were "Have the wheelchair sit by the computer." The snapchat I sent 30 seconds later pretty well covers my feelings about that one, so we'll move on.

Back to "Why are you here?"

I was there because I have two of the conditions that you claim as your specialties. I told you as much, and your response, still without so much as looking up from the computer screen, was "Well, you were diagnosed with Charcot-Marie-Tooth twenty years ago, so you know it's incurable. We can't help you."

I'll admit, I probably looked shocked, but it wasn't because I didn't already know that you couldn't fix my body. I had been told only two months earlier that I would be better off living with a broken hip for the rest of my life than going through the surgery to repair it - I was painfully familiar with the thought that I was never going to get better.

Rather, I was new to the concept that maybe someone with a serious, degenerative neurological disorder didn't need to be under the care of a neurologist. For a moment, I felt kind of silly. What was the point in going to a doctor, when I couldn't be healed? I had decided years ago that I no longer wanted the drugs you had to offer for the pain, and I wasn't in immediate need of any surgeries. Why was I there? 

I don't remember what I said. I do remember that you sighed and looked at me for the first time since we'd met. Not in the eye, but at my hands. "Well, I guess I can check your strength and reflexes. I'll put them in your file. Then if you ever have a slipped disc or something else I can fix, we can get you in more quickly."

In the end, I left your office that day with a prescription for physical therapy ("good for a year, if you ever want to do it, but it probably won't help") and an updated education on the latest research into neuromuscular disease. Despite your attitude, it was a productive appointment - I learned how much my condition had degenerated in the past few years, and after some prodding, you gave a few suggestions on how to manage the symptoms.

What I want you to understand is this: That's all I wanted. As someone with a severe and incurable disease, I don't go to my doctors expecting to be fixed.

I know you didn't start out in this career to spend your days talking to patients who you can't heal. Like most doctors, you probably set out with the goal of solving problems and fixing what's broken. For most patients, that's what's required of you. For some of us, though - the chronically and incurably ill - we don't need you to heal.

Instead of going to doctors in search of healing, we go to you for help living with the bodies we have right now. Our goals in life are different, and your job is to first learn what they are. Sometimes we may need you to prescribe a pill, straighten a spine, or do something we don't quite understand with our muscles and tendons, but sometimes we come to you just to make sure what's happening to our bodies is still in the realm of "normal" for our disease. Sometimes when I'm falling almost every week and even the simple act of bathing seems as risky as walking down High Street the night of a major football victory, I go to you, not in hopes of a miracle drug to make me never fall again, but for help finding a way to live as safely and independently as I can with this body I've been given. 

Life with this body of mine is hard. It means aching muscles, stinging nerves, twisted bones, and too many tears. It's brought me long days in bed, hours on the floor, and awkwardly asking small children to help me with the simplest of tasks. What you might not see is the good it's brought into my life. My sense of humor as I learn to laugh when I fall in the middle of the street, my slowly growing humility as I meekly ask friends and strangers alike for help, the instinctive trust I gain from people who might otherwise never enrich my life with their stories, my ability to adapt to a life of opening doors with my feet while going through them with my hands. My life is wonderful, and although I would happily give up all of the pain in the present and fear of the future, I would hesitate to trade even one of the things I've gained from living with this disease.

It's okay, Doctor, that you can't make me better. All I would ask of you is that you recognize the humanity behind the unsolvable problem. I, the incurable patient, "the wheelchair," am a person. I'm more than the sum of my twisted toes, hopeless hips, and crooked spine. The next time I come to you - and I will be back, frustrating as it may be for us both - I hope you find yourself able to see me.

And if you'd like to talk to me about nerve damage in mice, I'm totally up for doing that again. That was pretty cool.

Love (no, really),
Heather

My life is pretty great. For real. 

Tuesday, October 6, 2015

October Testimony.

Recently I came across something that I wrote a year ago this weekend. The year and especially month leading up to that were difficult, to say the least. I know that last October I didn't believe life was ever going to get better, and in some very shallow ways I was right. I'm always going to have certain trials. That's life. The bad things don't always go away.

I chose to keep going that conference weekend because I received a priesthood blessing that gave me a little bit of hope. I didn't plan to ask for one, but I got so sick I had to. (What else is new...) It reminded me of Christ's love and that He knows everything I'm experiencing. Not just the physical stuff, but how I feel about all of it as well - my sadness, my fears, somehow even my bitterness and loss of faith. I can't comprehend HOW he can understand all of that when it's a result of my imperfect way of thinking and he is perfect, but I know that he does.

I definitely didn't understand what that meant for me a year ago, and I know I still don't fully get it. But I was reminded during that weekend and I understand more every day that the atonement is real! Life is hard. It has to be. Heavenly Father loves us and his greatest desire is to see us return to his presence better and stronger than when we left. We're all stained by this world, but we're not in it alone. Christ has endured all of those same wounds, and he has the power to help us heal.

I'm a slow learner. I've been grateful for the gospel for all the time I've known about it, but only in the past year have I really begun to deeply understand it. I'm so glad to have had this year to learn, and I'm grateful for the pain and trials that have helped in that process.

Life is amazing, even when it kind of sucks. :)

Saturday, October 3, 2015

Disabled Life is Still Life {advice to 16-year-old me}

If I could tell my 16-year-old self anything at all, the first thing I would say wouldn't be about Christ or relationships or bad habits. 16-year-old me wouldn't listen to that stuff anyway. 

Instead, it would be, "Stop worrying so much about trying to do everything just the way able-bodied people do it. You can live successfully in the real world with your malfunctioning body, no matter what your family or the school counselors say. The 'real world' does make accommodations for disabilities, and you can do what anyone else can do, on wheels and in a quiet room with the lights dimmed." 

And then I'd probably finish up with "But don't major in education, because teaching middle school is maybe the one exception." 

For real, I listened to the voices saying that you have to be physically normal to be successful or happy for way too long.

Friday, September 25, 2015

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. 

Monday, September 21, 2015

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.

Tuesday, September 15, 2015

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!?

Tuesday, September 1, 2015

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. 

Monday, July 20, 2015

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.

Friday, June 26, 2015

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.

Tuesday, May 26, 2015

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.


Monday, May 25, 2015

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. 

Saturday, March 28, 2015

The Importance of Visibility

The other day at the mall, I saw a girl, probably in her late teens, who was in a wheelchair. 

That isn't terribly unusual - I see people with physical disabilities two or three times a week. We really are everywhere: we attend school, we get dinner with friends, we go to bars, we shop for groceries, we go to work. 

What was remarkable about this girl was that she had all the signs of being newly disabled. Her wheelchair had the name of a local in-patient rehab hospital on the back, and she was being doted over by two other women, probably her mother and sister. I don't know anything about her life or her disability, so she might be only temporarily disabled, but I did notice that she was watching me. 

It made me think back to the beginning of my life with a wheelchair. 

At eleven years old, I hadn't had many experiences of seeing people with significant physical disabilities as they lived their normal lives. I had never seen a person in a wheelchair do the normal things that I do every day, let alone get married and have a family and a career. Without seeing people who were like me doing those things, I thought they couldn't be done. 

Throughout my teenage years, I sought out examples of people with disabilities living normal lives. There weren't very many: a high school teacher, a handful of other teenagers with the same insecurities as myself, and a few lifestyle articles in disability-related magazines. There were only a handful of people like me on TV or in books, and those that were there had brief appearances, often as a plot device.

The impact this had on me was significant. I spent a long time believing that I was doomed to live a lonely life without any of the independence I've now gained. For almost a decade, I was in a deep depression. I couldn't see that I had anything to live for, because I couldn't see hope for a good, "normal" life.

Life is different today. I've discovered examples of people with disabilities living happy, fulfilled lives, with families and careers and joy. I know that my life can include the things I wished for when I was younger.

The thing is... it shouldn't have taken a decade for me to understand that. Nobody should wake up from surgery or live their entire childhood with a disability without knowing that their physical conditions don't prevent them from living the lives they want to live. Nobody should have to seek out examples of people like themselves holding a job or going to college. Those examples should be readily available.

Visibility matters.

Sunday, March 22, 2015

To Be Humble, or To Be Humbled?

There's a phrase I've heard a few times in the past few months that's really sticking with me.

"Be humble, or be humbled."

It's an interesting thought to me. The Lord has called His people to be humble, and it's going to happen. The only question is whether we'll choose to humble ourselves, or whether we will be humbled by an outside force.

At Friday Forum this week, the speaker spoke about entitlement and humility. He asked us to take a moment to think of the most humble person we know, and then describe the other traits that person has.

Here's the list we came up with:
  • Elderly (not always, but often!)
  • Spiritually sensitive (or a spiritual leader)
  • Rarely talk about themselves
  • Service-oriented 
  • Grateful 
  • High self-esteem
  • Quiet, but not fearful
  • Content with what they have
  • Good leadership skills
  • Patient 
  • Selfless
  • Penitent 

This is a pretty fantastic list of personal characteristics for anyone to develop. I'm making it my goal to work on them myself... I have a long way to go.

Grandma, c. 1992
When I look at that description, I think of my grandmother. I don't know very much about her life and what's shaped the personality I've seen during my lifetime, but I deeply admire her for having all of
the qualities listed. She isn't a member of my religion, but she's whole-heartedly dedicated to Christ. Even in times of great distress (she lost her second husband and her mother within a month of one another; she's survived breast cancer; she had an obnoxiously ungrateful teenage granddaughter), I've never heard her complain or express anger or ingratitude. Instead, I've seen her study the gospel of Jesus Christ, dedicate herself to serving others, and endure her trials with patience. When I think of the kind of person I want to be, she's the best example I can imagine.

For me, on the other hand, humility hasn't taken root. You might think that after 11 years in a wheelchair, being a 4'10" grown woman, being consistently sick for several years, etc, I would have humility down pat. Spoiler alert: NOPE! I am one P-R-I-D-E-F-U-L woman. I can be literally laying on the ground unable to get up and be entirely unwilling to ask for help. (This happens often. Maybe I should be learning something.)

(There's a missionary serving in Morgantown right now who frequently tells me, "Don't be embarrassed." I fall down and have to call him to come help me up pick me up... "Don't be embarrassed." I pull over while driving because I'm afraid I'm going to puke on the steering wheel... "Don't be embarrassed." I'm considering hiring him to follow me around saying that at opportune moments after his mission. That's a job any 21-year-old man would aspire to, right? ... What if I pay him in M&M brownies?)

It seems to me that my life is full of reminders to be more humble... I'm actually pretty certain that pridefulness was one of my premortal flaws, and part of the reason I'm so physically frail is that it gives me the opportunity to learn humility. I came to that realization a while ago, but it's been on my mind a lot lately, and I'm ready to get to work repenting.


Being humble doesn't mean being weak -- it means relying on the Lord for our strength. He is the source of all strength, so why not learn to humbly rely on Him?

Wednesday, February 4, 2015

Forgiveness Talk

I gave this talk on forgiveness during a sacrament meeting in January. A few people asked me for copies, so I figured the easiest way would be to post it. This isn't exactly what I said -- I can't stick to a script for anything -- but it's what I had written down, so it should be pretty close. :) 

--

When I was eleven years old, I was permanently disabled because a surgeon made a mistake while performing a procedure without consent. It took years for me to forgive that doctor, and that bitterness stole a lot of my life. I would do things that made me happy for a while, but they didn’t create lasting peace. Each time I did them, the happiness they gave me lasted for a shorter time, leaving me to repeat them over and over to keep myself from feeling worse than I did in the beginning. I didn’t see any way out of that cycle. I was angry at the doctor, at my family, and at myself. I didn’t think God existed, but if He did, I was angry at Him too. The God who other people loved had made me be born with an incurable disease and then let that doctor make it worse, and I saw no way to ever be freed from the burden of what had been done to me.

Learning of the restored gospel of Jesus Christ was the most incredible gift that I can imagine. I learned of God’s love for each of us and of my own divine worth. Through the gospel, I was miraculously able to repent of the acts I had done during my years of bitterness and be transformed. An essential part of that process was finding the strength to forgive and to be forgiven. By that point in my life, extending forgiveness didn’t require nearly as much strength as you might expect – it was truly my only option.

In Doctrine and Covenants 64, the Lord tells Joseph Smith, “I, the Lord, will forgive whom I will forgive, but of you it is required to forgive all men.

Most of us have heard that scripture before, but I would like to really examine it with you today.
According to lds.org, the word “forgive” has two meanings in the scriptures. One of those definitions will be given later in my talk. The other states, “As people forgive each other, they treat one another with Christlike love and have no bad feelings toward those who have offended them.”

Why would the Lord require us to forgive?

Extending forgiveness to another person is for us. Our forgiveness of the unrepentant sinner does not excuse him from the consequences of his sins. Rather, we are called upon to live by the oath to “Let God judge between me and thee, and reward thee according to thy deeds.” Our forgiveness does not mean justice won’t be done; it means that we will place our trust in God to take care of that justice for us.

All of the commandments we have been given are for our benefit. The Word of Wisdom helps us to be healthy in body and mind; the Law of Chastity helps us avoid the heartache so often wrought by being involved in sacred, intimate acts outside of the bonds of marriage. Likewise, we are commanded to forgive so that we can be freed.

Withholding our forgiveness from another person is a spiritual impediment to us, regardless of its impact on another. Forgiving others is primarily about restoring our personal relationship with God, not with the person who we must forgive. By choosing to forgive, we act upon our trust in God and allow Him to take up our burdens. Finding it within myself to have that much trust in God – to wholeheartedly hand my burdens over to Him and believe in His willingness to take care of it so I could be relieved – is one of the most difficult parts of forgiveness for me, but I’ve learned that it is absolutely necessary.

A church member whose brother was murdered wrote, “I found that the solution for a weed-ridden heart is to employ the Master Gardener, the Savior Jesus Christ. He has the power to heal any heart. He requires only one thing: we must offer our hearts fully to Him and let Him work in His own way.” In our journey through life, all of us will be wounded. Bad things happen all the time. It’s easy to find ourselves being burdened down by those wounds, little by little.

The healing power of the Atonement is the means by which those wounds can be healed, and the requirement of that healing is that we trust in the Lord and forgive. That forgiveness does not redeem he who sinned against us, but it does redeem us. Emptying our hearts of bitterness and anger creates room for the purifying power of the Atonement to work within us, filling our souls with joy and consolation.

The second definition given for the word “forgive” is “When God forgives men, he cancels or sets aside a required punishment for sin. Through the atonement of Jesus Christ, forgiveness is available to all who repent.

I hope we are all familiar with this type of forgiveness. As we follow God, each of us is asked to strive for perfection. Our ultimate goal, as the whiteboard in the institute reminds me every day, is to return to our Father’s presence. No unclean thing can dwell in the presence of God, and all of us, at some point in our lives, will be unclean. We strive for perfection, but none of us are perfect right now. The pains and sins of this world are unavoidable at this stage of our progression, and only through the atonement of Jesus Christ can we be cleansed and healed as we repent.

When I discussed this topic with the missionaries, Elder Bovee shared a thought that I’d like to quote. “Although we continually fall short and make mistakes, I am convinced that the love of our Savior and the power of his Atonement reach a depth beyond our imperfections. Through the strength of Christ’s perfect love, we can rise above our sins, no matter how serious they may be.

There is no depth that Christ cannot reach to rescue us. There is no darkness that the light of the atonement cannot penetrate. In the words of the Prophet Joseph Smith, “There is never a time when the spirit is too old to approach God. All are within the reach of pardoning mercy.”

Obtaining forgiveness when we have sinned is not automatic. There’s no “easy button” for repentance. The offer of forgiveness is always available, as is our Father’s unfailing love, but we are asked to repent by freely confessing our sins to the Lord, making restitution, and changing our ways. Repentance can be uncomfortable, as is all change, but I testify that it is the path to lasting peace. In cases when we cannot do anything to heal the damage caused by our sins, the way to forgiveness is still open to us. The apostle Boyd K. Packer once said, “The Lord provides ways to pay our debts to Him. In one sense we ourselves may participate in an atonement. When we are willing to restore to others that which we have not taken, or heal wounds that we did not inflict, or pay a debt that we did not incur, we are emulating His part in the Atonement.” No sin is too great, no harm too irreparable, for us to receive divine forgiveness.

Perhaps even harder than forgiving others and seeking forgiveness from the Lord is forgiving ourselves. In his famous talk about judging others, President Uchtdorf reminded us, “When the Lord requires that we forgive all men, that includes forgiving ourselves. Sometimes, of all the people in the world, the one who is the hardest to forgive—as well as perhaps the one who is most in need of our forgiveness—is the person looking back at us in the mirror.”

The scriptures teach us that once we have repented and been forgiven of a sin, Heavenly Father no longer remembers that sin and it is as if it never happened. However, we do not forget our sins. The memory of our failings is retained so that we can learn from our mistakes, enabling us to progress towards our eternal goal. This does not mean that we should spend all our days in guilt – instead, we should trust in our Father in Heaven when He tells us that we’ve been forgiven. The benefit of learning from our past transgressions by remembering them is voided by excessive guilt, which can tear us further from our Heavenly Father by filling us with feelings of inadequacy.


I’d like to end this talk with another quote from President Uchtdorf: “Remember, Heaven is filled with those who have this in common: They are forgiven. And they forgive.” I testify to you that this is true. Forgiveness clears the way for broken hearts to be mended and broken people to be healed. It restores our bonds with our Heavenly Father, and it helps us to become more like Him in the exercise of true Christlike love.