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.