Tuesday, September 20, 2016

A Walk in the Park From the Depths of Hell
(AKA Whoever came up with this expression clearly didn't have CP)
(AKA WHAT DID I GET MYSELF INTO)

"Let's go to the park," my friend says.

"We can bring my dog," she says.

"It will be fun!" SHE SAYS.

Sure," I agree, "That sounds awesome."

For context, the last time we went to the park, we spread out a picnic blanket under a tree and I fed a sugar cookie to her sweet little Maltese as it fell asleep in my lap.

As an additional disclaimer, I absolutely adore this friend of mine. We've been friends for about ten years now and she is one of the sweetest, kindest people I have ever encountered. So this post is in no way a criticism of her. In fact, I'd venture to say that this post is more of a criticism of ME - because I should have seen this coming, and I probably should have said something earlier on in the situation. Buuuuut I didn't...so here we are!

Right after my friend suggests the park idea, she texts her mom to ask if we could take the Maltese with us. A few seconds later, her phone buzzes.
"Oh," she says, "My mom said that Bailey hurt his paw, so it looks like we'll have to take my Standard Poodle instead!"

That was warning sign number one.

When we pull into her driveway to pick up her dog, we decide that I'll wait in the car, but about a minute later, my friend calls to me.

"Hey," she says, "actually you should come in! It might be a few minutes longer than we thought because my mom has to get the dog ready, and she wants me to change into my running shoes."

That's about when I realized I was getting in over my head.

In the kitchen, her mom is fastening the leash and collar onto the 60-lb Standard Poodle that is going to accompany us to the park.

"Aww, hi Lily!" I say, scratching her dog around the neck. Then I turn to her mom. "She seems so calm!" I say. (my dogs usually get ridiculously excited as soon as we bring out their leashes)

Her mom laughs. "Ohhhh, she looks calm NOW, but just you wait! This one has tons of energy...she can jump over five foot walls!"

(F*ck) 

Then her mom hands me a paper bag.

"Here, I got some water for you girls because it's 90 degrees outside today and I don't want you to get dehydrated. I put in two bottles of water for Lily because I know she'll be exhausted after this."

SO. Quick recap on the situation I'd somehow managed to get myself into: I am standing in the middle of the kitchen, holding a paper bag with four water bottles -- two for the soon-to-be-exhausted Standard Poodle that can jump over five-foot walls. My friend is upstairs putting on running shoes, and the dog is "getting ready" like this is going to be some Olympic event. Meanwhile, I've somehow managed to overlook the fact that it is NINETY DEGREES OUTSIDE.

Once we get to the park, Five-Foot-Wall-Scaling Standard Poodle leaps out of the backseat of the car with all the grace of a pole-vaulter and sets the pace for our walk.

Side note: I've got two speeds: CP regular and CP "fast."
Standard Poodle speed is not in my repertoire.

So I'm struggling hard to keep up and my friend is leisurely strolling along on the cement path in front of us, trying to make conversation, and I'm trying not to be socially inept but all I can think at this point is:
"CEMENT. THERE'S CEMENT EVERYWHERE."

We pass bench after bench after bench, and each one seems to taunt me.

"So what do you want to do tomorrow?" she muses.

Sit down. Sleep. Movie marathon. 

"Oh, I don't know!" I say, attempting to sound cheerfully nonchalant and trying hard to keep the breathlessness out of my voice. "Did you have any ideas?"

"Yeah, I was thinking maybe we could go into the city and walk around all the shops, and then maybe we could go to the beach!"

"That sounds fun!" I reply, but inside I'm dying at the thought of walking ever again. "Or...or...maybe we could go see a movie," I add hopefully, praying that my voice sounds sufficiently casual. Or anything that involves sitting down. 

We continue walking for what seems like forever and my friend looks the same as when we first arrived, but I can feel that I'm getting flushed and I start worrying that my exhaustion is showing all over my face. If my friend notices, though, she's too polite to say anything.

Instead, she points to the ocean view to the right of the cement path. "Look at this viewwww," she marvels. "Wowwww."

Meanwhile, I'm glancing surreptitiously to the left. Look at these benchesssss, Wowwww. 

Secretly, I can't help but think that the farther we walk away from the car, the farther we'll have to walk back. I already can't imagine doing this all over again. As we continue down the cement path, I realize that I'm starting to feel lightheaded, and with a pang of horror I imagine my friend having to pick me up off the cement path after I've collapsed from heatstroke.

Here's where a reasonable human being might pause and say, "I HAVE A CONDITION. I KNOW THIS HAS SOMEHOW NEVER COME UP IN THE TEN YEARS THAT WE'VE KNOWN EACH OTHER, BUT THE REASON I WALK WEIRD.... THAT'S CEREBRAL PALSY. AND IT MEANS THAT I CANNOT WALK INDEFINITELY ON CEMENT AT STANDARD POODLE SPEED ON A 90 DEGREE DAY AND SURVIVE."

But I couldn't. Every time I opened my mouth to speak, the words just wouldn't come. I had two options: explain about cerebral palsy to my friend of ten years - OR - pass out on the cement. And I was choosing to pass out on the cement.

"Oh it doesn't seem like we've gone that far!" my friend exclaims, looking over her shoulder at the ten billion miles of cement we'd just traversed. I say nothing but inside I'm dying.

I hear my surgeon echoing in my head."You've got to be mindful because your leg is going to be uncooperative for another year or so."

That's when I see it: HEAVEN. (AKA a shaded area with picnic tables)

"LET'S SIT THERE, THAT LOOKS AMAZING!" I say, and I can't keep the desperation from creeping into my voice.

"Oh yes! This is such a cute little spot, good idea!" my friend says.

I slide onto the bench and experience a sense of relief that completely defies description. The burning sensation that was taking over my legs (especially lefty, who's still recovering) starts to recede, and I pull out a water bottle from the paper bag I was holding and drink.

I finish most of its contents in one gulp, and then I offer a water bottle to my friend.

"No thanks!" she says cheerfully. "I'm all set!"
The ocean view from the park

For twenty glorious minutes we sit and admire the scenery (and I can finally appreciate the view that she marveled at earlier) and talk about life. I probably should have seized this opportunity to talk about CP - but again, the words just wouldn't come. On top of that, the entire time, I find that I'm worrying about how I'm going to manage the walk back, so eventually I decide it would be best to just get it over with.

"Do you think we should go back now?" I say (in spite of the fact that walking all the way back is the last thing I feel like doing).

"Sure!" she says. "Let's go forward!"

"Wait," I say. "Forward? As in...away from the car?" I can't quite keep the panic from my voice.

"Yeah, the park makes a circle, doesn't it? Let's do a circle to get back to the car!"

YES THE PARK MAKES A CIRCLE. A LITERAL FIVE-MILE CIRCLE.
(I know this particular circle well because my brother used to run races around half of it when he did track in high school.)

"It's five miles," I say. "How about we just go back to where we came and then if we decide we want to go farther" - please God, no - "we can walk past the car in the opposite direction."

My friend agrees to this, cheerfully, and meanwhile I'm attempting to mentally prepare myself for this journey of walking all the way back, and maybe even MORE.

We continue back - and the sun is still beating down on us ferociously - and I'm silently agonizing as my legs try to accommodate Standard Poodle Speed. Eventually, the car is in sight and I'm quietly rejoicing...keeping it cool on the outside but inwardly partying....and then my friend says, "So at the bridge" - right next to the car, right next to MY FINISH LINE - "let's turn around."

No. No no no no no.

"You mean, like...go back?" I ask. "I'm...I'm a little worried about getting sunburned," I say, trying anything but admitting CP at this point. "The sun's pretty strong."

"Yeah," she says, "but it's getting to be the late afternoon so it's probably dying down."

I'M DYING DOWN.

We turn around.

A few minutes later, I try again: "I don't want you to be late for dinner"[at 6 pm, two hours from now -I'm getting desperate].

Finally, my legs just CAN'T anymore. My CP is protesting full-force and I can feel my coordination getting worse. Every step takes deliberate concentration, and even with conscious effort, I can feel that my movements are becoming increasingly clumsier.

"I THINK WE SHOULD GO BACK NOW," I say.

"Oh, we are going back!" she replies cheerfully, and at this point I'm confused. She points to a car in the far distance. "That's the car."

I know for a fact that this is not our car. That car has been my finish line for this entire ordeal. I could identify it from a hundred miles away.

"No, that's not the car," I say. "We are going in the opposite direction of the car."

"Really?" she says. "Okay...well...if you're sure, let's turn around. But if we're wrong then we're going to have to walk all the way back here!" (She says this kindly, but inwardly I'm panicking at this possibility)

We turn around and - THANK YOU GOD - after what seemed like miles, we finally reach the car. I've never been happier to sit down in my entire life.

Then she turns to me and says, "Maybe tomorrow we can come back and walk the entire circle!"

FIVE MILES. 

NOPE. NOPE. NOPE.

"How about we just come back and have a picnic instead?" I suggest.

"Ooh, yes, that sounds great!" she replies.

(inward sigh of relief)

~

I wonder why, after all these years, it's still so hard...how can I write about CP so openly here, and yet  it seems I'd sooner pass out on cement than talk about it with a friend whom I've known for ten years. I know she wouldn't have judged me - she's one of the least judgmental, kindest people I know...and it's visually obvious that I've got a disability, so it's not like it would be a huge surprise.

If I'd had a sprained ankle or a broken leg or something of the sort, I would have easily been able to say, "I don't think I can go for a walk in the park today" - but somehow, it's a million times harder to say, "I've got cerebral palsy...there's something wrong with my brain, and I don't think I can go for a walk in the park today, or tomorrow, or ever."

And I did go for that walk - somehow, my legs managed to do it, but it wasn't leisurely. It was panic and dread and "how did I get myself into this" and "should I say something" and "why can't I tell her" the entire time.

Just the other day, I had just finished up tutoring, and the girl whom I tutor (who is kind of like a little sister to me) was silent for a minute, deep in thought.

Then she said: "Do you remember the mile run from when you were in high school?"

"Yes," I said. I remembered that run. I remembered standing on the sidelines in gym class and watching it, at least. I didn't tell her that I was always exempt from it, because as we know, Complicated Cerebral Palsy Conversations are not my thing.

"It was a bad day for me today. I took fourteen minutes to run the mile and I was one of the last people to finish. Everyone was watching me and laughing at me," she said.

"Hey, I think fourteen minutes is pretty good!" I said. "It's a lot better than I could do."

"Really?" she said. "How long did it take you?"

"I don't remember," I said (see: Complicated Cerebral Palsy Conversations). "But don't be sad about fourteen minutes. I think it's awesome that you ran that mile and you finished even when they were laughing at you. That takes a lot of strength."

I think it always takes strength to persevere through difficulties, and it takes even more strength to admit that we have difficulties.

Someday, I want to get to a place in my life where I can comfortably admit that, for me, a walk in the park isn't always a walk in the park.

Sometimes we struggle. Sometimes life is difficult. And that's okay.

20 comments:

  1. Ahhh this is like a horror story! So awful! I'm glad you were okay. This is why we plan everything, right? Because CP and spontaneity will get you nowhere (except maybe walking at Standard Poodle Speed FOREVER or jumping off a dock in the middle of a lake with NO life jacket....)

    But seriously this is why I love your posts so much: I RELATE. (And there are so few times in everyday life I can say that, you know?) So thanks for sharing this. These kinds of stories let me know I'm not alone.

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    1. Thank you for getting it, Tonia <3 YES, I'm a huge planner...spontaneity can be hard when it's paired with CP! (and ohhh I still cringe every time I hear that lake story, haha - a prime example of CP and spontaneity not mixing!)

      It means so much to me that you can relate, and I love knowing that I can come and vent to you and you will understand. <3 You are definitely not alone - we are in this together!

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  2. ARGH. While I don't know what it's like to not want to talk about limitations or disabilities personally, I know what it's like to not want to talk about them when it comes to my son. Recently, a friend of his asked if he could spend the night. I know this is NOT going to work (plus, he'd be horrified that Tucker wears pull-ups at night and is older than he is and Tucker would be horrified at his friend not and and and). UGH. I'm sorry and SO hope she agreed to a movie the next day!!!!
    Maybe recent surgery would be a good excuse???? Or, gah telling her (I KNOW). Hugs and love, friend.

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    1. Ohhh Kristi...I'm sad that you can relate to the "not-wanting-to-talk-about-it" topic. :( I hope Tucker and his friend were still able to have a fun day together, even if sleeping over wasn't a realistic possibility! Thank you for reading and commiserating with me and YES - we watched a movie the next day!

      I thought about mentioning the surgery, and that definitely would have been easier than bringing up CP, but still hard, you know? The whole situation unfolded so quickly, and by the time I'd realized I was completely over my head, I was too afraid to say anything. It's tough. I don't think I'm ready to talk about it with her yet (and I don't quite get why I CAN'T talk about it, because we're such close friends) but it helps to know that I can at least come here.

      Tons of hugs and love back <3 Thank you for all of your support, always.

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  3. Ohhh wow. As I read this I was half laughing and half saying to myself, "Oh my gosh that is so true," because I've been in situations similar to this, and I know exactly how you feel. I don't know what it is, but for some reason I have difficulty bringing up my CP in these situations also, and I don't even know why. I mean, it's not even that hard, but for some reason I just can't bring myself to do it-- too stubborn, I guess. Here's to hoping you got to do a more sedentary activity the next day! :)

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    1. Ohhh, I'm sorry to hear that you've dealt with similar difficulties, but I'm glad to know that I'm not alone in this! I think for me it was stubbornness as well, mixed in with a bunch of other complicated feelings. You're right - it SHOULDN'T be that hard to talk about, but somehow it just IS. And yes - we watched a movie the next day and it was wonderful! :)

      Thanks for getting it. <3

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  4. I can relate to this, 100 percent. I hate disclosing my CP, because the first time I did, I explained that it was a result of brain damage at birth and my friend said in response "But you're smart!" I had to explain that the brain controls muscles, too, and since then, I really haven't enjoyed disclosure.

    I know that in circumstances like the one you described, it might be good to share about your CP in the moment, but I completely understand that internal debate that lasts so long that it causes you to miss out on an opportunity to disclose. Since you're a writer, how do you feel about sharing about your CP by texting, writing a note, or messaging the person on Facebook? I've become more open over time, and that's usually how I do it. Also, if you don't really enjoy using the words "cerebral palsy", you could just say that because of your physical disability affecting your legs, it takes more of your energy for you to walk, especially at Standard Poodle Speed, which is a little faster than you're accustomed to. I've personally found that after I share that I have CP, people treat me the same. I'm not sure if everything I shared here applies to you, because I am affected more mildly, but I certainly hope that this helps you! You're not alone in feeling the way you do. ❤️

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    1. Ohh -- the "But you're smart!" reaction has come up for me too, from friends and teachers and professors, and it's made me reluctant to disclose my CP as well. I think that's one of the hardest things about having CP - people have all sorts of misconceptions about what it means.

      I love that you mention writing being an avenue of disclosure for you - and I feel exactly the same!! I have become more open about my CP over time as well, and writing/texting/Facebook messaging are my preferred methods of disclosure. Somehow it's just so much easier to write about it than to speak about it! Even telling people about CP through writing can be hard sometimes, though. I have more trouble when I've known someone for many years and CP has never come up (like with this friend - we've known each other for 10 years and I've never talked about my disability with her, so it's harder to do it now because we've waited so long.).

      I made a conscious decision to be more open about CP when I went to college, and I found that mentioning my disability through Facebook messaging or texting was such a good way to introduce it comfortably.

      Thank you so much for your advice and encouragement. <3

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    2. You sound just like me. I was so uncomfortable with my CP in high school that I almost never mentioned it to my friends. Consequently, I don't feel comfortable telling them now, even though I've known them for seven years now. I want to keep things "light" with those friends. The friends I tell in writing are generally my college friends, and it had been hard to te the ones who know, but it's been worth it. Like you, I'm a writer, and that definitely influences how I choose to disclose. Speaking in person is less comfortable for me. And thank YOU so much for this blog. ❤️

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  5. I must say I've never had problems admitting I have a disability or asking people to speak loudly. I don't know why but I haven't. I'm sorry you feel like you can't tell people you have CP.

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    1. Hi Kathryn! I think for me, some of my issues with disclosing my CP stem from the fact that cerebral palsy affects the brain, and there are so many assumptions that go along with that, you know what I mean? I'm glad that you feel comfortable telling people about your disability and asking them to speak up if needed - that's awesome. :)

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  6. Ohhh, K, my sweet! I so understand you not telling, and falling on your sword and making yourself do ALL THE WALKING! But good grief, I'm glad you survived the walk with your composure and your body intact!

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    1. Lizzi <3 I'm glad I survived too...it was looking questionable at some points. ;) Thank you for your encouragement, friend.

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  7. This is (imo) the best post you have ever written

    My 4 yo has cp and i also find it difficult to know what to disclose to whom, because i'm not sure if everyone is able to deal with "brain damage" without thinking less of him.

    I totally relate to what anonymous wrote above too.

    Please keep writing!

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    1. Thank you!! <3 I completely know what you mean...there's so much stigma attached to that label of "brain damage." I know that's something my parents struggled with as well, because sometimes people made assumptions about me when they found out about my CP. It's a difficult thing for sure.

      Thank you for taking the time to leave a comment, and I really appreciate the encouragement!

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  8. It's like playing the flute with wind blowing in your face.

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    1. That's an awesome comparison, Anna! ;) Playing the flute with the wind in your face definitely sounds like it would be a challenge!

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    2. It is. Wind can cancel sound from a flute entirely!

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  9. I loved that through all the pain I got the humor and you never lost that feeling. I don't know why it is difficult for you to discuss it with your friend. Maybe it's because she has been your friend for 10 years and doesn't "see" you as having CP you want to keep that facade? You have this awesome friend who sees you as 'K' and not "my friend with CP".

    Which is pretty awesome

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    1. Kerri <3 Yes, I think that's a huge part of it! I wish I could be more open with her about my CP, but I love that she doesn't emphasize my disability. :)

      Thank you for stopping by and commenting! <3

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Please feel free to leave a comment. I would love to hear from you. Thanks! :-)