Monday, October 17, 2016

When they ask you the question you aren't sure you're strong enough to answer

I started a job as a physical therapy aide with one of my former PTs (I was her patient from age nine to fifteen). It's a way for me to obtain the experience hours that I need in order to apply for graduate school in the field of healthcare, and it's a strictly part-time thing a couple times a week for now. I'm still testing the waters to see if it will work out...but day one is in the books and it went pretty well, so I am hopeful.

But there was ONE moment, and I should have seen it coming. I was talking with a patient, somebody I had met before outside of the clinic but hadn't gotten to know well.

The PT commented that I was familiar with a lot of the exercises that he was doing and I agreed.

"Yep, I've done that one, like, eighty billion times," I said.

"My hips are like the hips of a one-hundred-year-old," he said.
"Oh I think I've got you beat!" I laughed.
He laughed too. Then silence. Then...


"So.......what is...what is the problem that you had?" 

His voice was measured, cautious, politely curious.

It was then that I realized...I am not allowed to ask the patients direct questions about their medical conditions, but that protection is unidirectional.

They can ask me all they want. 

And here's the thing: 
I still can't say the words 'cerebral palsy.'

I took a deep breath, silently summoning all of the courage I could manage, trying to keep the panic from edging into my voice, trying trying trying to pretend that this question didn't make me want to crawl under the exam table.

"Oh, I...I have CP, so PT has been pretty much a lifelong thing for me," I said.

He smiled. "Ahh, ok!"

I think he was politely feigning understanding, because "CP" isn't exactly a well-known acronym, but somehow it's a million times easier than "cerebral palsy," and at this point in my life, those two letters are the best I can do.

During our lunch break, the PT pulled me aside.

"Somebody is coming after lunch, and he is probably going to ask you questions...personal questions. Please know that you don't have to answer anything he asks you."

"It's fine," I said, in spite of myself. "I can answer questions."

"No, I need to protect you," she said.

I see the way they stare at me. I see them wondering, and some of them will never dare to voice their questions, but some of them will. She can't protect me forever. She can't protect me from the world, can't protect me from cerebral palsy. I certainly don't feel obligated to answer anything invasive, but at the same time, I don't feel as though I should hide this part of myself, least of all in a physical therapy clinic, where my CP might help somebody feel just a little bit less alone.

Sometimes it's hard...sometimes it's crushing, lonely, seemingly unbearable. Sometimes it's painful...physically, emotionally, mentally, everything. But mostly...mostly it's just a part of who I am, a beautiful, irreplaceable part of what makes me ME.

Somehow, I need to find the strength within me to say those words out loudwithout shame, without panic, without hesitance.

I have cerebral palsy.
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Edited to add: This is off-topic to the post above, but I collaborated with my friends Tonia and Tara to put together a CP Survival Guide: a non-sponsored post in which we recommended some of our favorite products to make living with CP a little bit easier. :) Check it out here!  

14 comments:

  1. Just want to say I so, so get it, and you are not alone. <3

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    1. Thank you, Tonia. <3 It means so much to me that you can empathize!

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  2. Not the same, but when talking about the various medical problems my 3yo had/has, the more I say them out loud the easier it gets! Good luck to you, you go girl :)

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    1. Aww, Laura, thanks for the encouragement and for getting it!! I definitely agree that it gets easier with practice! <3

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  3. I think its so cool you are now working as a PT assistant! Maybe I will think more about that as a job... I wish I had you around when I was in PT as a kid. Having somebody else with CP around would have made me feel safe and much happier in PT. I know it's hard for you to reveal your CP and you shouldn't feel you have to reveal it to everybody but considering the line of work you are in now talking about CP can be highly valuable to others. Most people know it takes courage to reveal one's condition so it will establish trust between you and the patients and they may feel braver in PT and want to follow your example. Once I tell people about CP they tend to open up to me because they start trusting me. Revealing the CP can give you power in a sense. I also usually answer CP but for me I just do that to save time unless I'm explaining it to a science professor or someone who would want to know the full name. Just remember there is no shame in the words "cerebral palsy" because it is the truth and it is a beautiful part of you. I guess its more natural for me to talk about CP because of talked about it since I learned to speak LOL Loved the CP survival guide too! Great suggestions!

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    1. Margot! <3 Thank you so much for your input! I love that you say there's no shame in the words "cerebral palsy" -- so true, friend. I'm working on all of this, but in the meantime, it means so much to have your encouragement! Glad you enjoyed the guide, too! :)

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    2. You're very welcome K! It has been an honor to know you and your input on your emails and your blog posts have been hugely helpful to me! I just read your "Four Years Ago" post too! Congrats! I understand your fear of becoming only known as "the girl with CP" I have experienced this and it is not fun to only be identified as that but I noticed the only people who saw me as just "the spastic girl" were insecure and obsessed with their own disabilities and did not respect me, and so could not see me as "me" beyond the CP. I usually don't get identified as just "the spastic" by able bodied people except in VERY rare cases. You simply need to find a balance when talking about CP. The way I talk about CP around people who do not have CP themselves is this: I only discuss it when I have a need of assistance(like in a classroom) or if someone asks me honestly like the patient did in this post. That's how you keep it in check verbally. If talking about the CP is one of these reasons you have no reason to fear talking about it at all, even though I know its hard. It was hard for me to communicate other things so I know where your at. As for the blog, it is like my films where you can talk about anything because its totally yours and you are reaching people. I'm so glad you are able to reach me and so many others!

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  4. As a nurse with CP, I can tell you I get asked a lot by my patients "What is wrong with you?" or "Have you had a stroke?" Somehowing in the medical field, it seems to make it okay for people to ask. And I like you, have had a hard time opening up about it.

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    1. Hi Nurse Bee! I didn't know people with CP could be nurses! That's awesome! In regards to the stroke question one of my math teachers said "You look like my friend who had a stroke" in response to seeing my movements. He meant it in a nice way not a mean way. After that I ended up becoming friends with 2 people who have had strokes and the similarities with stroke when compared to CP are striking!

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    2. Nurse Bee,
      AHH -- like Margot, I was so excited to hear about your profession as a nurse...so cool!!! I definitely agree that some of those "boundaries" seem to be broken down in the medical field...it makes me feel better to know that you've had similar experiences and difficulties, though. Hugs!

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  5. It was VERY hard for me to say at first, and now I can mostly (depending on the day and the sensitivity of the moment) say it about the boys no problem. The boys themselves have a hard time with it (of course they do, they're 6!!) but when I hear someone ask them and they sort of freeze, we talk about it afterwards and what they could say next time. It's a learning curve for sure.

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    1. I love that you talk through it with your boys afterward, Tracey!! I had some trouble with it when I was younger too, but I never used the term "cerebral palsy" or "CP" in my explanation until now. CP/cerebral palsy was something that I never said, so it's been a challenging adjustment! I definitely agree that it's a learning curve.

      Thank you so much for stopping by and for taking the time to leave a comment. <3

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  6. Some words just don't sit well on our tongues.

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  7. Trishla Foundation best cerebral Palsy treatment center in India. http://www.trishlafoundation.com/

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