It’s hard, having to adjust and readjust and adjust again to all these unexpected curve balls in life. I’ve never been a fan of change. I love my traditions. Even when we moved, I hated that the stockings at Christmas couldn’t be in the same place or that 4th of July wasn’t spent around our pool. But more and more I’ve had to learn to just go with the flow. A saying I’ve picked up and now my family has too.
I don’t think it’s something that you just get used to, having no control of the unwelcome timing of attacks, that is. In many ways, for the last few years I’ve tried to make up for my lack of control over my body in other ways. I had a picture in my head of how things should go and each time that picture was skewed, I couldn’t handle it.
But it’s scary. Talking one minute and not being able to the next. Waking up in the morning, and not being able to see out of one eye. Not being able to feel your arm or leg. Physically unable to control or move your body. It’s scary.
It’s also embarrassing. To fall in public, to wake up on the floor in Walmart, to disrupt another class, I almost used to hate getting up because it’s embarrassing. It’s not cute to have half of your face droop or to stutter or to drag your leg. It’s weird to have a thing obviously in your chest. It’s uncomfortable when your memory just decides to take a break. It’s obnoxious to sit away from a group or have to randomly make a run for the restroom because nausea won. It’s embarrassing.
It’s the biggest emotional challenge I’ve ever faced, obviously. To have so many people not understand why you handle it the way you do, why you suddenly are around less and less, creates an uncomfortable situation for all involved. So many people judge off of misconceptions instead of trying to educate themselves. Most people run from it, because that’s what is easy. It’s easy to distance yourself from it, instead of accepting and trying to understand. It’s easy to get offended or put off when plans are continually cancelled or people change. I wish I could distance myself from it. I wish my family could distance themselves from it. I wish my best friends could distance themselves from it. It’s a gigantic emotional challenge.
But guess what? THAT’S LIFE. Throwing pity parties everyday isn’t gonna getcha anywhere. So, we just roll with it! We make jokes about it. And we stay thankful for all the positives and little things in life.
Kels, Zach and I joke about me always “having problems” since I’ve been the accident prone child since day one. I was the one that had to wear the ridiculous get up when we went sledding because of my cast, and the one that managed to scrape my face down the diving board trying to handstand off it. Now, I’m the one they sit with in the hospital, still laughing as the nurse pumps Benadryl in me. In the last three years, Zach has hardly missed any of my hospital stays, even in Chi Town. Kelsey always saves time for our ridiculous adventures, like getting a four wheeler stuck in brush.
Ash is an incredibly good sport since I’m always changing our plans. She doesn’t even blink an eye when our food comes out at a restaurant and makes me randomly way too nauseous to eat. Or when my meds hit me and I ask her the same question multiple times, she just laughs and probably tries to mess with me and confuse me…not that I need help with that! So Ashley, should I wear a dress?
The Rents and I are ER pros. My dad finds vending machine snacks for us, the best game on, and gets comfortable. The two of us have the WORST luck with doctors, too many times have we ended up with a freak that was more worried about getting close to Dad than solving my issue. My dad isn’t the most subtle person when it comes to his reaction of Dr. Dreamcatcher playing constipation charades. My mom likes to keep me distracted and sometimes sings for me(I’m laughing while I type this). One time a nurse walked in while I was passed out and my mom said “Ohh, she’s just showing off again”, apparently the nurse did not like that and scolded my mom. Obviously she was kidding! I think Parker absolutely loves when my medicine makes me funny, mostly because I’ll laugh at all of his jokes😉
So yeah, it’s rough some days. Yeah, I’d give anything in the world for a magic pill. But, what I wouldn’t trade, are the memories and togetherness this has brought me and my amazing support group. So hospitals are a regular part of our life? Floor parties are normal, so what? We’ve shared plenty of tears but so many laughs. HM doesn’t rule my world anymore. Ya just gotta learn to go with the flow!!😎