Thursday 18th September 2014,
The Liz Army

Does a brain tumor diagnosis mean you are disabled?

Liz February 24, 2014 Surviving 9 Comments
All this parking could be mine!

A few weeks ago I met up with Sarah Funes: a regular contributor to #BTSM (brain tumor social media). I had never met her in real life, just on Twitter. She was in the state capital for work and we thought it would be a good idea to get coffee. For convenience, I drove my car to pick her up and take us to one of my favorite spots.

Due to her brain tumor, Sarah has hemiparaplegia, a loss of motor function in one side of her body, and vision issues with the eye on that same side. Needless to say, Sarah has difficulty standing for long periods of time and uses a Segway in situations where she needs to travel more than just a few blocks.

When we arrived at the coffee shop I had a hard time finding a parking spot. Sarah pointed out the handicapped space and said we could park there.

“Do you have a parking placard with you?” I asked.

“No, use yours,” she said.

“I don’t have a handicapped placard.”

“You don’t?!”

What I forgot to mention so far is that Sarah is an international human rights activist fighting for the right of people in the disability community. She collaborated on a project creating the first disabled Muslim superhero for a comic book. While I might be an advocate, Sarah is an activist.

For the next minute Sarah gave me the rundown on why I deserved a permanent disabled parking placard (e.g., fatigue, “you never know if you are going to have a seizure”, tumor gets worse over time,  you need to be prepared), and how I should go about getting a placard. I didn’t have to use it, she said, but I should have one.

“Have you seen the pics I post to Instagram of me doing handstands, lifting weights, and pushing tires?” I asked. “I am not disabled and it would be wrong for me to use a handicapped parking space when there are people that really are handicapped and are more deserving.”

Sarah left me with a “well, you never know” look, and we moved on with our visit.

But that left me wondering… am I disabled?

wallstandI am not handicapped

If you know me in real life (as opposed to only via the Internet–this blog, Facebook, Twitter, Instagram, etc.), then you know I am a fully functional adult with no mental or physical impairments, that otherwise are common among brain tumor survivors.

I have, however, gotten to know many brain tumor patients and am familiar with the side effects that result from this disease. And I insert a note here to the layperson: brain tumor side effects are a direct result of the location of where the tumor resides in the brain, and of treatment that results therein. (Note to Uncle Bob: I am starting to write like you. Please make it stop.)

That all being said… I am not perfect. I have neuro-physiological issues that can no longer be seen with the naked eye.

But then again…

After my second brain surgery I had to relearn how to walk and balance. If I close my eyes and can’t see the world around me, I will fall over. My sense of touch and proprioception are forever damaged. But does that mean I can’t walk through a parking lot to get to a store? No. Does that mean I can’t run four blocks to make it to a meeting. No.

However, there is one person who witnesses the defects in my central nervous system: my trainer, Allyson.

I exercise at a weird/funky/cool alternative to a traditional gym. We are called BodyTribe, and Allyson has been with me since I started taking movement seriously.

When I first started moving at BodyTribe I wasn’t as “good” as everyone else. I chalked it up to me being brand new to exercise.

But now, more than a year and a half later, I still have issues. If I am doing a bench press, Allyson reminds me to “put my brain in my right side” (the funky side with hemispatial neglect) so I can move the bar evenly. If I am doing a squat, my entire body twists left, even though I have been training for months. And it is only when I “put my brain” in my body will I perform “normally.” (Please forgive all of the “air quotes.”)

Pretty much everything I do at the gym takes as much mental effort as it does physical strength.

Am I normal?

This last week I took Allyson aside and asked for a progress report. I felt that in comparison to long time gym rats and newbies alike, I wasn’t as strong. Allyson reminded me that everyone has different bodies and that you can’t compare yourself to other people, especially when it is obvious that I put in the time and effort (and eat well, etc.).

Allyson didn’t know I was asking for other reasons. She didn’t know I was asking if she thinks I am “normal.”

Later I received a text message from Allyson.

I wish I said then: your technique, from the powerlifts to especially weightlifts is INCREDIBLY strong. If we were gonna compare (which we won’t of course), your technique is above and beyond in some aspects, and your attitude toward the lifts, and how to give your all, is next level shit (one of my favorite sayings).

It’s all in our heads

The text message from Allyson made me misty-eyed (because I am a total girl), and reinforced something I’ve known all along:

How we deal with our response to the diagnosis and treatment, our abilities or disabilities, is totally up to us. We can’t perform our own brain surgeries or invent new drugs and treatment, but we can choose to strengthen our metal state of mind when it comes to our health. At the risk of sounding like a self-help book, it really is all about our attitude.

There will always be a dark corner of our minds that doesn’t think we are going to live through this, or doesn’t have the confidence to even project awesomeness. Everyone has that in their heads. I have it too. But I try to push it away.

As Allyson said, giving it your all is “some next level shit” (i.e., taking things to the next level), and that is what I try to do.

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  • http://www.3000milestoacure.com 3000 Miles to a cure

    I so appreciate your insightful comments. No answers here really, but a really authentic person’s honest experience. Thank you.

    • http://thelizarmy.com/ Liz

      Thank you! This stuff will always be crazy.

  • micwil3232

    I think I’ll steal the “next level shit” quote if that’s okay? I love it ;)
    I too try and push the darker corner of my brain away but it’s not that easy given the regular check ups and focal seizures but focussing on “taking things to the next level – thus “next level shit” is a good way of living x Thanks for continuing with your blog Liz

    • http://thelizarmy.com/ Liz

      Allyson will be honored to hear “that’s next level shit” is spreading beyond the gym!

  • Facing Cancer Together

    What a good post. I have stage four BC in my lungs, and the question of disability has come up . . . and then I wonder, am I disabled if I still live normally? It’s good to know I’m not the only one confused on that front. And yeah, “next level shit” is a fantastic expression. ~Catherine

    • http://thelizarmy.com/ Liz

      BC = ? Breast cancer? Brain cancer?
      Feel free to steal “next level shit” as much as you want. :)

      • Facing Cancer Together

        Oh yeah, that was unclear. Breast cancer.

  • tucsontoni

    I hope you don’t mind but I posted this to my status on FB. Of course I gave you the credit for it.The whole thing was awesome but the last paragraph really hit home for me. When people ask why I have such a good attitude about my Cancer I tell them exactly what you say in your last paragraph.

    • http://thelizarmy.com/ Liz

      Of course I don’t mind! Share away.