Oh, the holidays…

by Kassady Oberacker – The reflections of how this EDSer relates to the holidays… and what we REALLY want from loved ones during the Holiday season.

Happy Holidays?

“It’s that time of year… The time I get to be beyond stressed because I don’t have the money to buy gifts for those that I love (even though that’s not what it’s really about), my body normally doesn’t cooperate with me… ever, and the one at the top of my list…

When people ask me what do you want for Christmas, I’m not able to ask for things that I may truly want because I’m forced to ask for things that I need. Essentials. I’ve asked for braces, specialized pillows, help paying bills, money for new New Balance shoes – oh see, cuz I can’t buy the regular ones that they sell at regular shoe stores… My body requires that I have the shoes that cost over $150 a pair because they have stability control that prevents my ankles from dislocating and keeps my knees and hips in line and the only pair I have currently have a hole in the toe of the right shoe and my feet are going to get REALLY wet this year… See where my brain goes? Essentials…

I can’t ask for things like movie tickets, money for new clothes (because lets be real, I hardly leave the house anymore… farthest I go is from the bed to the couch… So, why would I need new clothes?), books, or new bedding. Then again, I can’t ask for anything… I feel guilt. I feel anger. I feel sad. I cannot return the favor.

Then you hear, “Oh, don’t worry about it. You don’t have to get me anything!” Really? I don’t? Because I honestly feel like I do. I mean, I could probably go without eating. My body doesn’t let me eat much anyways before it begins to revolt in a cellular war against me.

I’m chronically ill. Circumstance has put me in the position of having to beg for rides like a 15 1/2 year old child that is oh-so-anxiously awaiting their license because medically, I cannot drive… Oh, and there’s always the not being able to work thing… That tends to put a bit of a damper on my financial situation. And of course the weather itself… What didn’t ache in the summer months or even the fall has surely found a way to let me know it’s going to hurt. All. Winter. Long. Chronic pain isn’t just the “ouchies,” you see. Unfortunately, my young body doesn’t discriminate like the masses do… I’m not too young for chronic illness or chronic pain. But thanks for pointing out that I “don’t look sick,” when I feel like I’ve already died inside.

I digress…

The holidays… It’s so hard to be of good cheer. Getting dressed up? I barely want to get dressed. I barely want to get out of bed. Hell, I barely want to take a shower… Hair? Make up? You’ve GOT to be kidding me!?!? Can we all pretend I’m five again… Of course, we must impose the change that instead of Christmas beginning before daylight… Can we try… Oh, maybe 2 pm… For my wake up time, I mean?

Oh and one more thing… If you’re going to ask me how I’m feel… Don’t ask unless you really want to know. Please… Because I’ve honestly grown tired of saying I’m fine because I’m not. I’m really not. And the doctor’s… They’re not all bad. They’re just as confused and frustrated as I am. They’re not just ordering tests to “pad my bill” and their bank account. That thought is nearly laughable. Ha! Ok, it actually is… because I really cannot recall the last time I actually paid a medical bill. Oh, you know. The old blood from a turnip thing?

So, what do I really want for Christmas? I really want my friends and family to realize that I’m downright depressed and feel like hell. I want visitors. I want to be able to get out of the house for a bit on my good days. I want people to not be afraid to ask me to go somewhere because I’ve had to say no and cancel in the past. Most of all… I want people to be compassionate for those of us with chronic illness and chronic pain. We’re not lazy. We’re just a little bit broken and different…

Welcome to the Island of Misfit Toys, my friends… Welcome.”