Wednesday, August 24, 2016

It just is.


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.)

Monday, August 22, 2016

Daydreaming About a Convenient Life

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.


Tuesday, August 9, 2016

A few of my favorite things

This blog is being interrupted because I've been sick for-freaking-EVER and I need to cheer myself up by thinking of things that make me happy soooo here's a list.

  • Macaroni and cheese with BBQ sauce
  • When missionaries also put BBQ sauce on their mac n' cheese and my family is amazed I'm not the only one -- HA! 
  • Getting to take the sacrament on the actual exact five year anniversary of the first time I ever took the sacrament <3 <3 <3 
  • The JOY I felt on my 5 year dunkdayversary. I wasn't expecting that. 
  • Dieter F. Uchtdorf talks. Like this one. Duuuude. So good.
  • Remembering that time Camille was really confused about why I asked if Dieter F. Uchtdorf was overweight #bestinvestigatorever 
  • Talking with members of my stake presidency. Oh man. So good. I totally word vomited about how bad I am at my calling and he took it like a champ and told me all the stuff I needed to hear. 
  • My cat, Chessie. I'm allergic to cats and I did not want to become this cat's human, but she's the boss. She's watched me sleep almost every night since I got pneumonia. If I cough too much she bites me. 
  • The youth in my branch. They're some of the most amazing kids with some really serious trials. I wish I was better at helping them, but I'm grateful for the opportunity to learn from them. 
  • Texting my all-time best friend after accidentally ignoring him for months and remembering that no matter how long we may go without talking and how many dumb things either of us do, he'll always be one of my best friends. 
  • Trinity's absolute adoration of Stargate Atlantis (and legitimate fear of Dr. Rush on SGU) 
  • The emails Elder Blakley and Trinity send each other. ("What's up Elder Dude! It's your true homie Trinity!") SO FREAKING CUTE 
  • That Mormon Facebook group I accidentally helped create/became the admin of when I was a LARC in early 2012... it's the best. Srsly. I love my internet Morms. 
  • PEACH PIE
  • The fact that Taco Bell exists in the world even though it doesn't exist near me and I couldn't really eat it anyway... it exists, and that brings me joy.
  • Ditto for Cafe Rio
  • Essential oils that help with nausea
  • The appreciation for the small things in life that naturally comes as a result of being chronically ill. For example, lately I feel joyful almost every time I get to go outside. 
  • Talking to WVCM RMs. Even when we don't talk much, it makes me happy just to exchange a few words. Being a ward missionary in Motown was pretty much the best experience of my life and I love(d) those full-time missionaries like siblings... which I mean they kind of are... so it fits. 
  • My grandma Eleanor. She's the best person I know. She's been through a lot in life but she has an adventurer's spirit and one of the most humble and loving hearts in the universe. AND I inherited my love of pranking from her. If I somehow miraculously ever have a daughter she's def going to be named after her, FYI to my highly hypothetical future hubs. 
  • When my friends get married. I used to be kinda salty because a lot of Morms dump their single friends when they get married, but dude. My friends have some of the best marriages I've ever seen, and it's so amazing to see them meeting and developing relationships with the people who are going to be their teammates forever. ANNNND it's a great filter to see who really loves me because only the "true homies" stay friends once they get engaged. S'ALL GOOD. 
  • Missionaries playing with puppies
  • Lularoe... #obsessed and #unashamed (but not leggings. never leggings.) 
  • Seeing all the changes in myself in the past 7ish years 
  • When I use words like "legit" and Trin tells me I'm too old for slang 
  • Unfollowing political pages on Facebook 
  • Banana flavored popsicles 
  • The Unicorns (plus Talyn). No specifics here. Everything about them. They're the best. 
This is not all of the Unicorns, but we've never all been together at once sooo.

Thursday, July 7, 2016

Why I Believe - Part 2 - The Priesthood


Part one of this series can be found here.

Everyone knows I'm a Mormon. Seriously, everyone. There have been several times when missionaries have told me that some person they met on the street, usually a person I barely even know, has told them they know me. Even more often, I get messages from people saying they've offered the missionaries a glass of water/paid for their ice cream/not slammed a door in their faces/smiled at them on my behalf. (Thanks, guys!) 

What I don't think so many people know is why I believe. (Usually asked as "why I gave up sweet tea and frappes.") The simple answer is that it's true and it's changed my life - but that's not the answer anyone wants. What they want to hear is more complicated, and I can be hesitant to share those details at a holiday dinner or in the middle of the market. I'm more than happy to share in other settings, but most people don't want to come join my Sunday school class or schedule a 45 minute discussion. 

So, I've picked 5 principles of the gospel - basic things Mormons believe - that contribute the most to my personal testimony. Mormons believe a lot more than just this, most of it exactly the same as any other Christian church, but these are 5 things that I feel most strongly tie my beliefs to this specific church. 

The Priesthood

The priesthood is the power and authority of God to act in His name for the benefit and salvation of His children.

In my church, almost every man has been ordained to hold the priesthood. However, this doesn't mean that all those men are pastors or preachers as other churches think of "the priesthood," nor does it mean that women aren't able to access the priesthood power.

The priesthood is most commonly thought of in relation to priesthood ordinances such as baptism, blessing and passing the sacrament (communion), and giving priesthood blessings. Those ordinances can only be performed by those individuals who have been ordained to hold the priesthood. Additionally, one who holds the priesthood has no access to its power when he isn't worthy to do so. The powers of Heaven can only be used upon the principles of righteousness (D&C 121:34-45).

That same power is also available to anyone authorized to do God's work, regardless of whether they've been ordained to hold the priesthood, so long as they're worthy. I've seen that power magnified in my own life countless times as I've worked to fulfill my callings and serve the people around me.


My testimony of the priesthood is strong, and it's grown over time. For a while, I struggled greatly with the idea that imperfect and sometimes willfully cruel or negligent human beings can wield the power and authority of God. It amazes me that He trusts anyone with that gift, but I know that He does, and I'm forever grateful.

My testimony of the priesthood is mostly based on the miracle of priesthood blessings. A priesthood blessing is when one who holds the priesthood lays his hands upon someone in need of healing, comfort, or counsel and gives voice to the blessing Heavenly Father wants that person to hear. We believe that the words spoken during priesthood blessings are inspired by God and the Holy Ghost.

Just this week, I received a priesthood blessing because I was ill and needed to leave the Girls Camp where I was serving as a leader. As soon as two priesthood holders laid their hands on my head and began to speak, my soul felt lightened. I felt the Holy Ghost pour into me, assuring me of the things I most needed to know.

Another priesthood blessing that will always stand out in my memory is one of the many I received from the missionaries during my last semester of college. I became violently ill during the priesthood session of our church's semiannual General Conference - a time when everyone who holds the priesthood was engaged in a worship service set aside to spiritually uplift and nourish them. I felt bad for drawing them away, but I sent a text to several of my missionary friends. Two of them responded right away and came to give me a blessing.

Earlier that day, I had felt that I should ask a certain missionary for a blessing, but I'd hesitated to do so. It just so happened that the one who dropped everything to come help me was the same person. As he spoke, I knew not only that I truly needed to hear the exact words he had to say, but also that he personally had no idea what was happening in my life that made them so needed. The things he said weren't easy to hear, but I have no doubt they were inspired by God because He knew everything on my mind.

Priesthood blessings such as those have carried me through many difficult days in the past five years. I couldn't tell you how many I've received, but I've been touched by and grateful for each and every one. It's a tremendous blessing (HA!) to be able to hear the words Heavenly Father wants me to hear spoken aloud. I've never been blessed with miraculous physical healing, and I neither expect nor want to be. What I have been blessed with is the knowledge that Heavenly Father knows and loves me, that Christ is with me in all of my mortal trials, and that the power of God is always accessible to me.

We don't usually take photos of priesthood ordinances being performed, so all I have is stock images provided by lds.org. I am neither a beautiful young mother nor a sick little boy. 

What we did for mutual... "Let the Holy Spirit Guide"

It's been SO HARD to find ideas for youth activities for my teeny tiny branch! Now that I feel like I'm starting to get into the swing of things, I decided to start sharing what we've done each time to help out anyone else planning mutual activities for small groups.

When I'm planning an activity, I try to guess how many people will be there, but the truth is that we could have just one youth or ten. Luckily, our wonderful missionaries and branch presidency are willing to join in on the fun!

Last week, our activity was a classic blindfolded obstacle course. The branch president's wife helped set up chairs in our "multipurpose room" and the youth took turns wearing a blindfold and walking through the course. I tried not to give too many instructions because I like to see what happens naturally in this game.

The rules: 

  • One person acts as the "Holy Ghost" and stands behind the ribbon, giving verbal instructions only 
    • For an extra challenge, specify that they can only say the words "left," "right," "backwards," and "forwards" 
    • Those who know those words in another language can easily differentiate who their "Holy Ghost" is among all the voices in the room because that's the only person speaking Spanish or Chinese 
  • The person walking through the course must be blindfolded before entering the room 
  • Others are told that they're "allowed" to create distractions (they get really into it) 
    • For added intensity, assign one person be the "adversary" actively trying to discourage those walking through 
    • Warning: This can get really intense, so be prepared to step in if it becomes too overwhelming 
  • Challenge mode: If the person walking through the course bumps into anything, he or she has to start over 
  • Challenge mode: Have multiple people go through the course at once (with or without a separate "Holy Ghost" for each) 
One of my favorite things about this activity is that the spiritual lessons to go along with it are created naturally, as the youth (or YSAs, or even missionaries) interact with one another. You'll notice principles you can point out on your own, but here are two things that I've used when leading the game with different groups.


FIRST: The "Holy Ghost" has to stay behind the ribbon, but the person going through the course can go as close to it or as far from it as they want, even crossing under the line to stand right beside it. All of the distractions and the "adversary" can move around the room however they want, standing right in front of the "Holy Ghost" and trying to mimic its voice or climbing on chairs to whisper in the person's ear.

This is symbolic of how we have to be receptive to the spirit, and how the more we listen and act on its promptings, the easier it is for us to receive additional guidance and filter out negative voices. When we're far from the spirit, it can be hard to tell whether the promptings we receive are of the spirit, but as we draw closer to it and become experienced in obeying, it's easier to discern.


SECOND: Never before have I seen the people doing this actually band together to help each other. Sure, most of the time they were creepily whispering in each other's ears about how they couldn't possibly succeed and the "Holy Ghost" was going to lead them astray, but there was a cool moment where they helped each other too.


Heavenly Father didn't send us to go through the trials of mortality alone - he gave us each other. Sometimes we fall into unexpected traps and get boxed in by the negative distractions in life, and even with the Holy Ghost guiding us, it can be tough to get out. That's why it's important to have friends and family to help us find our way back to the path - or even move a few obstacles if needed.

I love this activity because it's easy, spiritual, and can be adjusted to fit a group of any size, and the youth love it because it's active and fun. Throw in some brownies afterwards, and it's always a winner.

Thursday, June 9, 2016

When You're Asked to Do What's Hard

I'm sitting in a church right now. It's quiet and peaceful, but I'm not.

Earlier today, I had lunch with the new missionaries in my branch. We talked about the youth and worked on our summer plan for youth Sunday school and mutual. And I felt so. dang. inadequate.

Lately, I feel that way a lot. I know I'm where Heavenly Father wants me to be, serving in the callings He wants me to perform, but I feel like I'm not good enough. It's been a very humbling year.

One of the quotes I clung to in my last two callings was Elder Maxwell's "God does not begin by asking about our ability, but only about our availability, and if we then prove our dependability, he will increase our capability." And it worked for me then.

I put as much time and effort into my callings as I could, and I saw Heavenly Father move mountains in me. Things didn't go perfectly -- there were activities that flopped, investigators who flaked, friends who fell away from the church and felt they couldn't be friends with me anymore because I gave the church so much of myself, one whole semester when hardly anyone came to institute. But overall, I felt productive. I felt like God was using me to make a difference.

This time... not so much.

I'm trying to be a good leader, teacher, and friend to the youth, but have I really been giving it my all? No. Not like I did before. So of course the miracles aren't the same. I frequently have the thought that I want to improve. I want to give more of myself to these callings. But I'm not sure where to even begin.

When I talk about this with my friends, they sometimes say that some callings are just hard and unpleasant. I believe that (please not primary, never primary), but I'm not willing to give up on this one, writing it off as a "bad experience" or "too hard." I love my little branch. I love the little group of teenagers who are trying to live a better life in the midst of a society that says their morality is immoral.

I don't know where to go from here. I don't know how to begin to do the things that I should be doing. But I do know that I want to do better, and that Heavenly Father asked me to do it because He knows I can.

There has to be a way, if I can just figure out where to start.

Friday, June 3, 2016

Sometimes

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.