Hallelujah

This is probably going to sound hyperbolic, but I really do think I had the best dad ever. I know everyone says that; every June there's an entire sector of retail dependent on the idea that people will buy their dad a mug, or a shirt, or a tablet cover, or whatever with "#1 Dad!" on it, but I really mean it. I had the best father in the world. My daddy was a quiet man, but when he did speak the things he said were hilarious, and intelligent, and so incredibly kind. He quietly and consistently did charity work not because he wanted the attention any of it brought- really only a handful of people even knew he was doing it most of the time- but because it made him happy to be able to give to others. He fostered in my sisters and myself a love of reading, knowledge, and politics that has served all of us well as adults. Daddy sparked my interest in Sherlock Holmes, the Hobbit, and pretty much anything science fiction when I was a small child, and he gave me my first computer when I was three. He brought me my first Harry Potter book and drove me to comic book and art supply stores on the weekends, and drove me to no less than three libraries a week to get my book fix. He recorded every aria I sang for the first 18 years of my life, and attended every performance I ever gave, putting each mp3 on his clunky first generation iPod. Daddy told me elaborate stories about all the birds on the lake (his favorite was the Great Blue Heron), taught me all the hiking trails in the Potowatami trail system, reeled in a Smallmouth Bass for me when my 9-year-old arm muscles were too weak, and took me back to his home in upstate New York to go kayaking in the summer. Daddy knew that I had a lot of health problems, and he didn't always understand them, but he would still let me curl up next to him when I was too sad to face the world and listen to reruns Car Talk on the radio. Every week he sat in the pews at church, beaming at mom as she sang in the choir loft (and then falling asleep during the sermon, snoring loudly). He spent a lot of time alone or with the dogs, boating or hiking, taking pictures of the woods or the lake, and he wrote a quarterly newspaper for our small Michigan town that heavily featured the wacky hijinks our pair of chocolate labs would get up to.

My dad on the day of my parent's wedding, age 22, 1973

Daddy and I, Amsterdam, 2004

Many of you reading this unfortunately never got to meet my dad, and for that I'm truly sorry. He was a rare soul. He lived an extraordinary, though far too short, life. I wish I could say that I wasn't bitter that everyone else got so much longer with him than me- I only got 18 years. I'm not sure how I'm going to get married in two and half months without him there to walk me down the aisle, and I'm not sure how I'll have children one day without him there to hold them. I know I'll figure it out, but in the mean time it hurts a lot. Tomorrow when I get ready for church I will put on the gold tennis bracelet he bought me when I was 16, pin the button with his picture that I made in college (before he died, actually) to the front of my dress, and pray that I can make it through Sacrament Meeting, Sunday School, and Relief Society without turing into a sobbing mess.

Daddy on the pontoon boat

Rest in peace, Larryboy.

Things No One Tells You About Being A Full-Time "Sick Person"

So no one really thinks they're going to grow up to be chronically ill- little kids don't dream about shuffling around from doctor to doctor or trying out new medications the same way they do about becoming firefighters or ballerinas, it just sort of happens to you one day and you roll with it because you have no other choice. Being a full-time "sick person" has gotten a lot of attention recently, partly in thanks to blogging platforms and other social media sites where people like yours truly can write about their experiences, and partly because of the success of books/movies like The Fault In Our Stars, which features several chronically ill characters. But there's a lot that healthy people don't know about being chronically ill, and there are certainly a lot of things that I didn't anticipate before I got sick. For instance:

• Holy cow, is it expensive. I'm not just talking about healthcare here (the amount of money that my family and I have spent on doctor's appointments, surgery, physical therapy, and medication over the past decade of my life is frankly disgusting and could buy my mom a small mansion), but the thousands of dollars I've lost attempting to pursue a college degree, only to be thwarted by illness. Or the potential hours I could have been working. Or even the gas spent to drive 40 miles round trip to see my specialists, sometimes several times a week, and the 30 miles round trip to get to pharmacy with the cheapest prescriptions. It adds up, folks.
• It is also a massive waste of time. Not counting the hours I've spent in waiting rooms, or on hold with doctor's offices, or being transferred from one hostile and underpaid receptionist to another, a lot of it is a waiting game. Waiting to see if surgery worked, waiting to see if my new medication regimen is any better than my old medication regimen (and of course the requisite increasing or decreasing of the dosage incrementally over a period of weeks so I don't accidentally like, overdose and kill myself), and waiting to see if my insurance will cover whatever new therapy my specialists think will help.
• There will come a time when if you hear "But if you just *insert quackery here* you'll be cured!" one more time you will have to be physically restrained to keep from punching whatever well-meaning relative/friend/coworker/etc. is trying to "fix" you. I get that it's hard to see sick people tired, or in pain. It's hard for us to live that way too. But telling us to take more vitamin D supplements/rub essential oils on our elbows/do yoga/cleanse our chakras/cut out dairy/whatever, especially if you're also telling us to stop taking our regular medication and stop seeing our specialists? That's not helpful or loving, that's just rude. So please, heed my advice, if you are tempted to tell a chronically ill person about a homeopathic "miracle cure" you have discovered, please consider the following: Are there actual peer-reviewed studies suggesting that this is helpful for this person's particular illness? If there are, don't you think this person's doctor has probably brought it to their attention? Would you want someone who is not a doctor to start giving you unsolicited medical advice? Seriously, just exercise some common courtesy here.
• It may seem glamorous to "get to stay in bed all day" but it is actually pretty boring and depressing. When people hear that I sleep, on average, 12-14 hours a day I usually get told, "Wow! You're so lucky! I wish I had your life!" Um, no. You really, really don't. Do you know why I sleep so much? Because when you sleep you cannot feel pain. And also because being sick makes you exhausted. Not "I just worked 12 hours and cleaned the house and cooked dinner" exhausted, but "I literally cannot sit or stand up without immediately passing out" exhausted. It's "I took a shower today and I am super proud of that" exhausted, or "I am too tired to consider eating today" exhausted. Do you know what my biggest accomplishment today was? Emptying the cat litter box and showering. I had grand plans that also included taking out the trash and maybe reading a book but I am honestly too damn tired and in too much pain for that, so I'm probably going to take take some pain medication and pass out after I post this. 
• That being said, there are occasional good days. Not all days are awful. Every once and awhile I will get lucky and you'll see me looking bright eyed and bushy tailed and Not Sick (please be aware that this is mostly an illusion created by makeup and hairspray). Hurrah! you will think. Sarah has been cured! She is no longer sick! Sadly, this is not the case, and I understand that this can be confusing. This is an issue I've had to explain to a lot of people- I will be sick for the rest of my life. My disease will not kill me, but it will make the next 50 years of my life painful and will probably rob me of several of my internal organs and sometimes my ability to walk. But I will have good days, and I cherish these, and I would love to share these good days with my friends and other loved ones. Just because someone has days when they are not bedridden does not mean they have been "cured".
• People will tell you that you are "inspiration" for being sick, or that you have been "specially blessed by Heavenly Father". I am not an inspiration, or especially blessed. I am Sarah. I am just a person who happens to be sick. I know that being a sick person takes up a lot of my life, but I (and every other chronically ill person) am so much more than that. Please do not reduce me, or others like me, to "inspiration porn". Is my life difficult? Yes, but not any more so than your average 25 year old. My difficulties just come in a different, more visible format. Please do not pity me, or put me up on a pedestal, because of circumstances outside of my control. Just support me.
• You will watch more television and spend more time online then you ever knew was humanly possible. When you're not sleeping, or driving to a doctor's appointment, or being felt-up by a specialist while med students who are the same age as you sit awkwardly in the corner of the exam room, you will be watching ALL THE DAYTIME TELEVISION. I can now recognize and identify any episode from the first four seasons of "Castle" from two rooms away just from hearing dialogue. That's a skill I certainly never intended to cultivate, thanks autoimmune disease! Anyone who's spent more than 30 seconds on my blog knows exactly how much time I spend online. I post on more snark and news forums than is probably healthy. I read a lot of books as well (I can order them straight from the local library via my computer). But when you're limited as to what you can do physically, television/internet/books become you best friends.

When I started writing this I intended to make it a lot more lighthearted than it turned out, and I apologize for that, but I just really needed to get it off my chest. So here you go, friends.