Yesterday my friend Jordan and I went to the DC temple. The last time I saw Jordan was at her baptism in Charleston the day before I moved, so it was super cool to go to the temple with her!
Early in the day, I noticed that my wheelchair battery seemed to be draining more quickly than usual, but I wasn't too concerned. RoboChair and I have gone 10+ miles together, so there's no way a day at the temple should be a problem.
Right?
Wrong.
Juuuust about the time we got past the front desk of the temple, my wheelchair gave me the signal that it was about to die. Considering that I was parked all the way over at the visitors center and we were planning to be inside for at least three hours, that wasn't a good sign.
By the time I got upstairs, well, "she's dead, Jim."
Great. Here I am, half a mile from my car, with someone I haven't seen in over a year, and my transformer is giving me an attitude.
I did the only thing a completely desperate Mormon girl can do: I knelt by the cot in the dressing room (the accessible dressing room is fancy) and said the most confident and faithful prayer of my entire life.
Heavenly Father, I know you have the power to move my wheelchair. I just need to get through this temple session and back to my car, and then I'm good. I know you can do this and you want me to be here in the temple today, so please take care of this problem.
Then I got up, finished getting ready, and went on with my day without worrying about it anymore. If I thought about it at all, I reminded myself, "God's got this."
Every time I turned on my wheelchair, the "no battery" signal flashed and the screen went dead, but it always kept moving. It didn't even give me any of the negative behaviors that indicate the battery is getting low. The warning beep never sounded, and the chair never stalled or slowed down like it usually does if the battery gets as low as even 30%.
I got through that whole session, spent time in the lobby and outside talking with Jordan and Elder Blakley, made it back to my car, and went to dinner, all without a single problem from my dead-as-a-redshirt wheelchair.
As soon as I was back in my house and within reach of my charger, RoboChair went completely dead.
It was absolute proof to me that not only is Heavenly Father real, but He also knows and loves me. He understands the things I care about, and He cares about them too.
If my chair hadn't miraculously kept going, nothing awful would have happened -- I could have borrowed a manual wheelchair while I was in the temple and gotten some of the missionaries there to push RoboChair and I back to my car. Not the end of the world, but it would have bothered me. Heavenly Father understood that, and even though it wasn't the most important thing anyone was praying for that day, He cares enough about me to answer the prayer I uttered with faith that He both could and would.
If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.
People trying to be kind about disability often say things like "we're never given more than we can handle," "you must be such a strong person to be given this trial," and the nauseating "God gives special needs to special people."
On the other end of the spectrum, I've been told various times throughout my life that if I had more faith I would be healed, and I'm often confronted with a quote from a long-dead bigot who said being born handicapped was a punishment for not being spiritually valiant.
I'm going to be brutally honest with my feelings about this: ALL of those are BS.
ALL OF THEM.
The nice ones, the rude ones -- they're all wrong.
Disabilities aren't handed out to special people who are strong enough to "handle" them. (What does that even mean?) Nor are they given out as an opportunity to glorify God by being miraculously healed. It might sound good in an institute class, but I refuse to believe that my loving Heavenly Father gave me my illnesses just so He could look good.
Disability isn't good or bad.
It isn't punishment or reward.
Disability just is.
That's not to say that living with disability and chronic illness hasn't had a great impact on my life. It has. But disability itself hasn't made me a strong person or fostered my faith, any more than being dropped in the middle of a lake teaches you how to swim.
For much of my life with disability, I was bitter, angry, and depressed. Even since I was converted and my life was changed, there are still times when I can't handle it. There are times when the thought of going to the hospital one more time, talking with one more doctor, spending one more night sleeping in the bathroom or not sleeping because of pain -- it's too much. I don't believe I was given this trial because I have superior coping abilities. Whether you want to think about it or not, YOU could handle these trials just as well as I do -- I don't use the phrase "temporarily able-bodied" just for the laughs. Anyone could endure these things and be made better by the atonement, and only by the atonement.
You don't need any special strength or patience to live with disability. All of what little strength I have comes from my decision, made every week and sometimes every hour, to put myself aside and lean on Christ. He is my strength. If you're ever faced with this, or in any other trial, He can be yours too.
(These photos are a throwback to the first time I visited temple grounds, in September 2012! Feelin' nostalgic.)
Important disclaimer: I'm not saying I'm planning a vacation, so don't get excited... I'm just saying if I was it would be a pain in the butt.
Temporarily Able-Bodied People Planning a Vacation:
I assume this is how it works, anyway.
TABP1: Let's go to Utah! TABP2: Okay! Would you rather drive or fly?
TABP1: Idk man, both of those sound relatively convenient and unlikely to result in serious damage to very expensive and hard to replace items I need to live independently. TABP2: Right on! Let's fly, because I know if I need to pee on the airplane I can get in and out of the bathroom.
TABP1: Sounds good! Where should we stay? TABP2: Oh it doesn't really matter. We could crash on a friend's couch because we never have to worry about whether we can get in and out of someone else's house, or we could stay in literally any hotel without calling the front desk with a list of specific questions about the doorways, beds, and shower.
TABP1: Man, our life is so convenient!
People With Disabilities Planning a Vacation:
To be fair, the TAB friend probably sounds smarter than this. They know the struggle.
PWD: Let's go to Utah! TABP: Okay! Would you rather drive or fly?
PWD: Well, if we fly, I have to do extensive research and contact both the airports and the airline multiple times making sure they can accommodate me. TABP: Really? Why's that?
PWD: Different airports have different rules about taking wheelchairs on planes. I'll probably have to prove that the battery isn't going to explode in mid-air, and I'll have to talk to at least three different people to be allowed to use my chair in the airport until we board the plane. TABP: That sounds like a pain in the butt.
PWD: Oh, that's just the beginning. I'll also need to type instructions on how to take apart and move my wheelchair, and how to put it back together. When we get to the gate, I'll have to dismantle the controller myself and take it with me on the plane so the bozos don't break it. TABP: Oh wow.
PWD: THEN to get on the plane, I'll have to depend on a flight attendant to push me in an aisle chair that I can't possibly move on my own. If I need to use the bathroom during the flight, the attendant can push me to the bathroom door, but even if the chair fits inside she isn't allowed to help me move it inside the bathroom. So I'll probably have to avoid eating or drinking anything for at least 12 hours before we go. TABP: This is starting to sound complicated.
PWD: Once the flight lands, I'll be the last person off the plane. If you were thinking about a layover, forget it. If all goes well, the flight attendant will help me off the plane and my chair will be waiting for me, still working properly and ready for me to put the controller back on. That's unlikely, though. There's a slight chance nobody will help me off the plane at all and you'll have to help me crawl. There's also a good chance my wheelchair will be lost, disassembled, or broken, so I'll have to check ahead of time to find out if the airport will provide a temporary chair to use while we work that out. TABP: Let's drive.
PWD: Sure! That just means we have to repeat the fun of finding a truly accessible hotel room in at least a couple extra cities. TABP: Aren't all hotels required to have accessible hotel rooms?
PWD: According to the ADA, they are, but what a disabled person considered "accessible" is usually pretty different from what the ADA requires. Even two different people both using wheelchairs might need different things. And of course not all businesses obey the ADA. TABP: Oh boy. Here we go again.
PWD: So first, we'll need to make sure each hotel has an accessible room available. Many hotels only have one accessible room, so they can book pretty fast. TABP: Okay, so we just have to find hotels with accessible rooms available.
PWD: That's step one. Next, we'll have to call each one and ask to speak with someone who's familiar with the accessible rooms. I'll need to ask some really specific questions, like how tall the toilets are and whether there are grab bars by the toilet and shower. TABP: Aren't toilet heights and grab bars part of the ADA?
PWD: Yes, but a lot of the time those things still aren't done very well. Sometimes hotels will fulfill the grab bar requirements by putting grab bars by the sinks or on the other side of the room -- nowhere near the toilet and shower where they're needed. TABP: That's ridiculous.
PWD: No kidding. Then I'll have to ask them how wide the doorways are. Twice now I've stayed in hotels where the doorways aren't even wide enough for my wheelchair to fit through the bathroom door. I'll ask them to have someone go down and measure them for me while I'm on the phone so there's a better chance they'll give me something accurate instead of making stuff up. TABP: Is that everything?
PWD: Nope. While they're in the room measuring, I'll have to ask them to measure the bed height. The ADA doesn't specify anything about bed heights, so they can be pretty crazy. Most hotel beds are way too high to transfer from my wheelchair to the bed without help. I can ask them to remove the risers or take out the springs and put the mattress right on the bed frame, but if they refuse, there's nothing I can do about that. Sometimes I get a room with a couch just in case I can't use the bed at all. TABP: This sounds almost as complicated as flying.
This picture was taken on about the 3rd day
of striking out on accessible hotel showers.
The hat was very necessary.
PWD: Not really. Worst case scenario, I can't shower for a night. At least the hotel won't break my $10,000 wheelchair or leave me stranded on a plane. Anyway, speaking of showers, I'll also probably ask the hotel to send me a picture of the shower in the exact room I'm booking. Ideally for me it'll have a tub -- other people need roll-in showers, so the best hotels have either option -- but then I'll need to find out what kind of shower bench the hotel offers to see if it's one I can use. Some hotels just stick a wooden chair in the bathtub, and some only have one shower bench so if you're not the first disabled person to check in you're out of luck for the night. TABP: What kind do you prefer?
PWD: I personally like the ones that are attached to the tub and flip down. They're easy to use and don't slip around. As long as it's tall enough to transfer from and goes all the way across the tub, I can use it. Since we'll be staying in a lot of different hotels, it might be easier to just bring my own in the car. It'll take a while to put it together and take it apart to go in the car every day, but better that than not be able to take a shower. TABP: Wouldn't it be easier and cheaper to just stay with a friend?
PWD: Only if we have any friends where we're going who live in a completely accessible home. I don't just need to get through the front door, I need to be able to get to and use the bathroom there too. I don't have any friends in my OWN city who live in apartments I can visit, so I really doubt there's anyone I can stay with while we're visiting. TABP: Wow. I'm tired just thinking about this. Going on vacation doesn't sound very relaxing anymore.
PWD: Oh, it's worth all the inconveniences. I've learned that I have to plan ahead and micromanage things a little, but I've also learned to be adaptable and laugh things off. All the little crises that can happen are just part of the adventure. It's nice to daydream about a convenient life and it would be great if the world was wheelchair accessible, but I've learned to love the little challenges. Just as long as nobody breaks my chair.
Sometimes I see all the posts where people tell their stories about what others have done to them, and I wonder if I'm doing something wrong by not writing one. I feel less alone when I read them, while also being horrified by just how many there are. It's a strange thing to scroll through an advocacy website and realize I know three of the women brave enough to show their faces with their stories. Three.
Yet none of the stories I've seen have been about a situation like mine. I wonder if I owe it to all the disabled women of the world, ridden with guilt for being a burden and not believing they can live a better life. I survived. I let myself be convinced that I didn't deserve what was done to me. I learned to believe that I don't ever have to accept being treated badly, even by the people who care for me. I finally know in my heart as well as my mind that I deserve to be treated well. Nobody can ever earn the right to hurt me by helping me with the things I can't do.
I know there are women with disabilities being abused by their caregivers, relatives, and friends right now. I know many of them believe that they deserve it for being a burden. I know many of them think they can't live without the help their abusers give them. I've been there. I know.
I wish I could reach out to every one of those women and tell them their worth. I wish I could tell them all that they're daughters of God and testify to them of just what that means. I wish I could put my hands on each of their shoulders and tell them that not only can they survive without the people who hurt them, their days would be so much brighter without them. I wish I could tell each and every one of them that no matter how many well-meaning strangers in the grocery store tell them how lucky they are to have their abusers in their lives, it's not true.
Someday I might tell the story of what was done to me, but I'm not ready yet. What I will tell, to everyone who will listen, is the story of what's been done for me.
We all have our personal Gethsemanes, but not a one of us is alone there. He who went there before us also goes there with us. And just like Him, we can leave those trials behind and move on to better things.
A few days ago, my little sister fell and hurt her foot. She was inconsolable, and my grandmother heard her yelling at me while I tried to calm her. "You wanted me to get hurt! You don't love me!" The biggest fear of an adopted child, heartbreakingly expressed in a moment of insecurity.
"No," my grandmother said softly, "Heather's loved you since the first time she saw you." I remembered that first moment with baby Trinity, a year old and staring fearfully at the strangers who would soon become family. I still feel that love, even more for the sassy 8-year-old than the sweet baby she once was. She is and always has been one strong little girl.
I remember the day I learned that a camera was the quickest way to turn her tears into a smile. I remember the first time she looked at a picture of her own tear-streaked face and squeaked, "Cute!" I cried for her the day she noticed me taking her picture and said, "Don't take my picture anymore. I'm not pretty." Later, "Take my picture off Facebook. I'm too ugly." The insecurities of womanhood begin far too soon.
I remember, as a teenager with too many burdens and no idea of where to find hope, listening to her soft toddler snores while I wept. I wanted to die that night, just like so many others. But when I held her hand, I felt the peace I needed to get through the day.
She came into my life, so tiny and already having survived so much, during one of the most difficult times in my 8-year battle with depression. I was a stranger to her in mortality, but I know we've known one another's souls for ages.
As she neared two years old, I remember listening to her giggles and wondering how anyone, even a baby, could be so happy. She had tantrums like any other toddler - okay, probably more - but to me, she was pure joy.
When all I wanted to do was lie by myself and stare at the ceiling, she would run up to me, beeping my wheelchair's horn and demanding, "Picture, Issy! Tongue out, now!" There was no saying no to that.
I remember when she began to realize that disability wasn't normal, and most big sisters weren't in wheelchairs. I remember her tears of frustration as she asked me, "Why can't you just walk?"
Just yesterday she asked me, for probably the hundredth time, "But do you like being in a wheelchair?"
Five years after her first realization, disability is still a big thing for her to come to understand, but she has learned that wheelchairs can be fun and that if Sissy (finally earned that beginning "S"!) can't do it with her, she can probably call some missionaries who can.
She's also learned that the missionaries are a lot cooler than her Sissy is, anyway. I don't deny it.
Attachment in adoption can be hard, and we've had some difficult times these past few years as she's tested me, seeing if I'm really here to stay and love her forever. It's worn me down many times, but I try to remember why this little one needs to know our attachment is secure. I can't promise her that I'll always be physically by her side, but I can promise that my love will never, ever change.
I won't hear the words "Can I sit on your lap?" from her many more times, but I do hope for a lifetime of hearing "Sissy, I need to talk."
That's what big sisters are here for.
I love this little girl -- young woman -- 60 pound Southern spitfire with all my heart. No matter how we were brought together in mortality or what may happen while we're here, I know beyond any doubt that our sisterhood began long ago as our spirits were formed and will last for an eternity more.
I give cards to the missionaries for every occasion I can think of...
Good-bye cards when they get transferred far away,
Housewarming cards when they get transferred across town,
Baby shower cards when they find out they're training,
Graduation or retirement cards when they go home,
Birthday cards for click days and baptism anniversaries,
Silly glitter-filled cards when I decide they need to laugh more.
Elder Fidel strikes back.
I'm a card person. (Also, a glitter person. No apologies.)
Finding the perfect card for a missionary isn't easy, though.
It would be a whole lot easier if Hallmark made a "humor" line of their ministry appreciation cards.
Here's how the process of finding a great missionary card usually goes:
Enter greeting card store
Smile apologetically to frazzled employee who knows what a wheelchair can do in a gift shop
Read ALL the cards in the appropriate section
If any of them have a unicorn on them, buy them on the spot
Discard anything depicting cigarettes, butts, or drinking (unless it's a 21st click-day card!)
Almost back into a grandma picking out a wedding card
Discard anything that's overly sappy (I want to make them cry with my words... and glitter)
Having discarded them all, read them all again
Pick out the 4-5 funniest "clean" cards
Glare at them for not being perfect #thestruggleisreal
Remind myself that they're only going to glance at this thing for 30 seconds
Knock over a display, or at least a few cards
Make accidental eye contact with that same frazzled employee
Grab a card at random, pay for it as quickly as possible, and flee the scene
This is how I got myself kicked out of a Hallmark store. (Disclaimer: Not today.) The bull in a china shop is really a wheelchair in a gift shop, y'all.
Your dad said it best. "It feels like this is all a bad dream, doesn't it?"
When you went to the orthopedic doctor for the first time today, you thought it was because one of your legs was shorter than the other. Your pediatrician sent you there because you've been having trouble walking, more than you should be, even with CMT. The new doctor suspected that it might be scoliosis, and had an x-ray of your spine done right there in the office. You went back to your exam room with your parents to wait for the x-ray to be read, and you could hear the doctors discussing it down the hall. The first hint that something was about to go wrong came while your dad was playing with a latex glove. "Look at that spine!" "Forget the spine! Look at those hips!"
Back to the x-ray table you went.
The rest of the appointment is a blur. You might remember the details now, but 12 years from now, you won't.
Today you were scheduled for your first major surgery, just a few weeks from now. You'll need at least three surgeries, the doctor said -- one for each displaced hip, and one for your spine. After those surgeries, you'll be able to walk without pain again. Maybe you'll even be able to run, for the first time in your life.
That isn't exactly how it's going to happen. What seems scary now is only scratching the surface of what the next few years will be like. You know this is a big deal, but your fears are about pain and the risks of anesthesia and starting middle school just weeks after hip surgery. The possibility of having to miss school is near the top of your list of concerns.
Things are going to get worse. So much worse. Your life is going to be forever changed, against your will, while you lie unconscious and unaware. You're going to grieve. You'll experience terror, denial, rage, and sorrow. You'll lash out at physical therapists, blame your parents, grow to hate God, and even consider suicide at the tender age of eleven. (I know, you think you're all grown up.)
What I wish you could know, throughout these next months and years of grief, is that after things have gotten as bad as they could possibly get, they're going to get better.
For years, you've stood by the fence during recess and watched other children play. You've dreamed of being able to run, and you imagine it feels like flying. You'll never know what it's like to run... but, thanks to the wheelchair you fear so much, someday you will feel like you're flying. That wheelchair will feel like shackles at first, but eventually, you'll come to see it as your wings.
Your childhood ended today. I'm sorry for that. But someday, years from now, you're going to find out that your life did not. It's only just beginning. And in eight long, painful years, you'll get a second chance to embrace it.
Thank you for hanging on through the storm. Thank you for surviving, one day at a time, and for retaining the essence of who you are. It's going to feel like a bad dream for a long time, but the best is yet to come.
1. It's okay to ask questions! (Appropriate for our relationship.) In general, it's best to ask questions as they come up naturally. (And they will.) We know we're disabled, and talking about it isn't bad. Chances are, we'll bring it up first, but if not, go ahead. We know you're thinking about it. Just try to avoid becoming the guy all of our friends know as the one who asked how we go to the bathroom on the first date.
2. Be flexible. We've spent years learning how to live with a disability. We're used to things not going exactly as planned, and we've learned that it's no big deal. Don't be embarrassed if the "perfect date" you'd planned goes out the window because of accessibility issues. We've had to be carried up the stairs by a stranger before, and we're not going to stress if we have to spend half an hour searching for an accessible bathroom. You shouldn't worry about it either. Just relax, roll with it, and laugh.
3. Plan ahead. We'll be impressed if we get to the park and find that you already know which trails and picnic areas are wheelchair-friendly. We're the experts of searching websites and calling ahead for accessibility information, but we appreciate it when our dates think to do it too.
4. We can do it ourselves. (But help can be good.) Most of us are used to either doing things ourselves or asking for help. Personally, I'm accustomed to opening doors, carrying my food to the table, and moving chairs out of the way, and I don't think anything of it if a guy doesn't automatically do those things for me. We don't want our dates to feel like they need to take care of us. That said, if you would open the door for any other date or we're obviously struggling with something, go ahead and be chivalrous.
5. Related to that... We're looking for romance, not a caretaker. We're already capable of living full and independent lives, either on our own or with the help of a professional caretaker. We don't expect the person we're dating (or even marrying) to help us with our personal care. Don't leave us lying in bed with the wheelchair on the other side of the room, but don't think you're signing on to be a nurse for the rest of your life. We've got it covered.
6. Yes, we can have sex. Most disabled girls are fully capable of being physically intimate with our partners. There are some conditions that may cause "traditional" sex to be too painful, but for the vast majority of us, we approach sex with the same attitude as most other things in life - with determination, creativity, and a sense of humor.
7. Be prepared for the comments. It happens to us often. Some of the most common ones are "Are you her brother?", "You must be a saint!", and "He's taking such good care of you!". Depending on the situation, it might not be appropriate to verbally shoot them down, but we notice how you react. Sorry to break it to you, but dating us doesn't make you a saint. ;) If you must smile and nod in the moment, be sure to let us know you don't actually agree.
8. We like it when you think our gear is cool. My power chair has a seat that reclines or changes height with the push of a button, and my custom-modified van is just plain cool. Boys dig it, and it makes me laugh when they get excited about it. Don't obsess over our tech too much, but feel free to tell us how awesome it is.
9. Use "wheelchair etiquette." Sit down to talk to us when possible, don't speak for us (people will expect you to), don't give the chair a push and let us fly down a hill... you know, have common sense and be a decent person.
10. Disability isn't the most important thing in our lives. I'm passionate about religion, adoption, and sci-fi. I've cared about each of those things for longer than I've been in a wheelchair. We all have different interests and passions, and disability is only one of them. Don't treat the wheelchair like He-Who-Must-Not-Be-Named, but don't focus on it to the exclusion of everything else.
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.
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.
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.
"[...] 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.
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.
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.>
"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.
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.
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.
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.
I haven't used this blog in a long time. I guess I've been getting out all of my desire for blogging (and then some) with the institute blog.
The experiences I've had in the past eight months have been valuable, but many of them were things I didn't feel comfortable posting for the world to see. Now that some time has passed and I've gained a broader perspective, I'm ready to talk about some of those things.
First:
On August 7th - the two year anniversary of my confirmation as a member of The Church of Jesus Christ of Latter-day Saints - my grandmother passed away. I had known for several months that it was coming. She had fallen in her apartment and broken her hip, and the surgeries and recovery process weakened her to a state where she was in constant pain and confined to a hospital bed.
Losing my grandmother, who was one of the greatest role models, was a painful loss, but I've been able to take comfort in understanding the Plan of Salvation. I know that my grandmother lived a full life and that she'll forever be remembered by everyone who knew her. She wasn't the kind of person who can easily be forgotten.
She lived a life full of trials, including childhood poverty, the death of her first child, and a painful lifelong disability, but she was a woman who was full of joy. She never tried to fit in or mold herself to anyone else's expectations, and she taught me to love myself in the same way. I wouldn't be the person I am today if I hadn't known her, and I know that I'll have the opportunity to be with her for eternity. I've been to the temple nearly every month since just before she died, and it's given me a great sense of peace.
Second:
Ever since I was baptized, I've wanted to serve a mission. I always knew that it was unlikely that I would be permitted to serve, but for over two years, I felt the desire to do so pull on my heart. It was on my mind almost every day, others told me I should consider it, and I honestly felt like it was what God wanted me to do. After fighting it for years, I finally approached my bishop in September and hesitantly asked if it would be possible. To my shock, the answer was "yes."
Wait... yes!?
That wasn't the answer I was expecting, but both my bishop and my stake president confirmed that, even with my disability, I could serve a full-time mission. I prayed and considered my options for about a week, and decided I would go. I knew there would be challenges, but it was what God wanted and what I wanted, so I threw myself into preparing to serve.
Then, just as I was about ready to go, the answer I and everyone else was getting from Heavenly Father changed. After months of promptings to go serve a mission, I suddenly got a big fat "STOP!" It surprised me, but I knew that serving a mission really wasn't what God would have me do.
I was saddened because I had a desire to serve and I thought I could contribute (both to the people I would meet and to the Church's perception of people with disabilities), but more than anything, I was confused about why I and so many others had felt led down one path only to then find out it was wrong. Overcoming that experience took time. I never lost my trust in God, but I lost my trust in myself. I thought that I must have acted on something other than a prompting of the Holy Ghost, but I couldn't distinguish between the prompting to serve a mission and any other personal revelation I had received.
To explain how I got past that, I'm simply going to share a Mormon Message with you.
So, all of this brings us through August, September, October, and the beginning of November.
Third:
Throughout all of this, a close friend of mine had been gradually wandering down a dangerous path. He didn't do anything morally wrong, but he developed an acute mental illness that culminated in a life-threatening situation. I won't go into much detail about it, because it isn't my story to tell, but it had a significant impact on me. Beginning in November, I recognized that what I had thought was just an odd pattern of behavior was, in reality, very serious.
For over a month, I dedicated nearly all of my time that wasn't spent in a classroom to caring for my friend. During that time, I felt a closer relationship with the Savior than I ever have at any other time. I received multiple priesthood blessings assuring me that I was doing the right thing, and I felt the love that God has for my friend being poured out through me. I have no regrets whatsoever and would do it all again with no hesitation if my friend needed it, but I sacrificed my own self-care in favor of caring for another person.
Given my own physical weakness, there was a significant price to pay for making that sacrifice. For nearly three months after my friend no longer needed my help, my body insisted that I catch up on its basic needs, particularly sleep. Six weeks of sleeping for two to three hours a night was traded in for two months of sleeping for twelve to sixteen hours a day. Only now, after three months, do I feel like my body has completely recovered, but I've never doubted for a moment that it was worth it.
I certainly wasn't a perfect friend, and there were many days when I probably made my friend's burden heavier instead of lighter, but I've learned so much about myself, about Christ, and about our loving Heavenly Father. I would have preferred to have learned those lessons without someone I love suffering so greatly. Nonetheless, I'm grateful to have had the experience of being there for my friend during that time. (He's been there for me through some pretty tough trials, too.)
Where Am I Now?
Right now, I'm trying to gain a sense of direction and figure out exactly what it is that God would have me do. School this semester has been hard... really hard. I'm already at a physical disadvantage, and the choices I made last semester (although awesome) have made it even harder. I'm looking for a job so I can feel productive and earn some money over the summer, but I haven't had any luck at finding a part-time job I'm capable of doing without a degree. For now, my life mostly consists of fulfilling my church callings (ward missionary and institute president) and building friendships with some fantastic people. I've been focusing on the temple (a friend and I have gone to the baptistry at the DC temple every month) and on developing my relationship with Heavenly Father through prayer. I've grown up a whole lot in both temporal and spiritual maturity, and I feel a great hope for the future, both in this mortal life and beyond.
Full disclosure: I wrote the first two sentences of this post in early November, and I'm finally posting it in March.
