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.

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.

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. 

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. :)

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.