A World of Hurt

I had forgotten until my professor reminded us in class last week that we have an upcoming project. We each have to take on a disability for a day and write a paper about what we learned from the struggles of those 24 hours. To be honest, I had all but ignored the upcoming due date until my professor grabbed me before class the other day and let me know that she was excusing me from a part of the project. You see, I don’t have to assume a disability like my classmates. I just get to write about one of mine.

I’m not displeased with this professor- quite the contrary. She completed her degree while on chemo for Hodgkin’s Lymphoma and has subsequently beaten breast cancer (and had a quadruple bypass) while working and teaching full time, so she is one of the few people in real life that truly understands how difficult this is.

But the idea metaphorically knocked me on my ass.

My classmates are spending this weekend learning how to function without the use of one side of their body (stroke) or with an immobilized leg (fractured distal femur) and I am living it. I am laid out flat on my couch because my head hurts so much today that simply being upright is almost too taxing right now. I’m studying for a test that I couldn’t take on time because I was literally bedridden with pain while the material was presented.

And yet, when I started thinking about the project, I had to stop and ask my husband if just pain is actually a disability. Because it’s not like a stroke or a broken leg. It’s less tangible, less documentable. More debatable.

I don’t have a sling or crutches for my disability. I don’t have a placard on my license plate or an assistive device to support me. I have a scar that I can cover with my hair and I have invisible, never-ending pain. I have tingling in my face on bad days and extra weakness in my left hand. I have paralyzing fear over a medical test next week that may very well determine a huge portion of my future. But it’s hidden. It’s not a disability in the way that always comes to mind.

And yet, it is a disability. As much as I’d love to have a good reason or ability to deny it, pain disables me.

Pain disables me from focusing on school, on life, on most anything.

Pain disables me from being a normal 26 year old. From going to the gym, from drinking and having fun with people my age.

Pain disables me from making plans more than a week ahead of time.

Pain disables me from sleeping more than a few hours at night.

Pain disables me from being the person I used to be. From being happy.

Pain disables who I am, to my very core.

And so my classmate will turn in their slings, crutches and braces tomorrow, marking the end of their day of disability at the very same time I mark the 106th consecutive day with mine. They will consider what the day was like and write a paper, I will consider my life and write one. Some of them will forget the 24 hours they had to play this part and live this life. Some will be annoyed at the inconvenience.

But all of them get to go back to normal. All of them regain the use of their arms and legs, hands and feet.

There are few things in the universe that I wouldn’t do to have that luxury, to be able to return this disability. To be normal. To forget this nightmare and move on with my life.

To not be in a world of pain.

To be abled once again.


9 Comments so far
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Katie,
You write so beautifully. You deserve an A+ for what you have to go through every day. You accomplish more in a pain-full day then I have in pain-free years. It motivates me to do something bigger and better and not take anything for granted. Thank you so much for being you. As always… you rock! *hugs*!!!

[Reply]

oh sweetie, as always, i wish i could do something to make you feel better. even if only for a day.

hugs and kisses

xo

[Reply]

Katie I read this entry earlier and it left me somewhat speechless. I’ve been trying all afternoon and evening to come up with something comforting and encouraging to say. You write so honestly I find myself at a loss for words. I pray for you often and I hope you find some relief soon.

[Reply]

Katiebear,

I love you. You are one of the strongest, bravest, toughest people I know.

I admire you and I love you.

xoxo

[Reply]

I am close to tears right now. My eyes are watery. I wish there was something I could say or do that would take your pain away. You are an amazing person and a beautiful writer. I hope that some of your classmates are able to look at things differently after this project but I believe you are right in saying some will look at it as an annoyance. <3 *hugs*

[Reply]

I have been lurking here for just a few days….I’m not sure which blog I found you through – but I’m so glad I did -I have gone back and read a lot of your posts. Your writing is so poignant and powerful. (And sometimes really funny – the whole I love you too/U2 post made me laugh outloud!) I can’t imgaine what your life must be like day to day, but I can tell you that the pain does not diminish your ability to write beautifully or touch others.

[Reply]

These “disabled for a weekend” things leave me with mixed feelings. Yeah, to some extent AB people get to deal with what people with disabilities cope with all the time. Only they don’t deal with chronic pain and they don’t deal with the fact that one day can be good and the next can be utter hell.

But I think this has you thinking on a track where you might be able to go back to Disability Services and tell them about that idiot prof. (Yeah, I’m still hung up on that.)

I’ll pray for you.

[Reply]

I don’t think that anyone who hasn’t been there “for real” would ever quite get it. Whether it’s being sick or being disabled by pain. You just don’t know until you’re there.

I hope things go as well as possible with the medical test.

[Reply]

Every time I read one of your posts like this, I just nod and nod and nod. I’ve long argued with myself whether pain is a disability. Some days I say yes, it is, and others I beat down on myself and say no, it isn’t. Your strength amazes me. I am humbled that you are still going through school, and hope that I can learn to have the same strength. I hope that your test results aren’t anything too scary, and I hope that they help your doctors figure out what is going on and how to stop it.

I’m here for you, if you need me. Hugs and love.

[Reply]

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    Welcome! I'm Katie, a 26 year old, newly-ish wed, full time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, not just the headaches and neurology stuff, but life as a doctor's wife, as a retired teacher and as the magnet to all kinds of crazy events. Sit down, get yourself something to drink and stay for a while. (And check out the FAQs. It'll save you some serious archive digging.)

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