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)

"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!"


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:

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.


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!"

(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."


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.


"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!"



"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.

Wednesday, September 14, 2016

Catching Up: CP & Beaches, and Dealing With Missing Out

Where to begin...I've had a pretty busy couple of weeks (at least compared to the rest of the summer!), and I've been meaning to come here and write.


I've been working on a blog post that explains some of the neuroscience behind CP, and I am really excited to publish that here soon!! I've received more emails than I can count asking about startle reflex as it relates to CP...and YES - I jump at everything, too!! ;) (I smile to myself every time somebody writes to me with that question, because you guys are MY PEOPLE - we "get" each other!) I will be including what I've been able to work out about the CP startle response in this upcoming post, and I will address several other CP/neuroscience topics as well. I've just been delaying publishing it mainly because I want to include illustrations for some of the explanations, and my drawing skills leave something to be desired!

(Side note...If you've sent me an email and I haven't replied yet - I'm sorry!! It's not you, it's 110 percent ME! I absolutely LOVE getting mail from you guys, and I will reply, I promise! And if you're here reading this now, even though it's been a couple of weeks since my last post - THANK YOU! :) I'm honored that you continue to come here and care about what I've got to say in my little corner of the blogosphere, and I hope that my words have helped you in some way.)


In the realm of reality/adulting, I've been busy trying to work out career-related details, now that my leg has healed enough (CP complicates my career planning a bit, in case you were wondering...but "complicated" doesn't mean "impossible," and I'm not going to let it stop me!). I've also been studying for the GRE (an exam for graduate school) and tutoring an eleventh grader most afternoons and evenings. I don't want to think about adulting right now soooo I am making an executive decision to abruptly change the subject:

The weekend before last, my mom, my brother, my brother's (girl)friend, and I all went to my uncle's house on the beach for a party! His last get-together had occurred in early July, the weekend after my surgery...and a few days before my surgery, I'd overheard my mom talking on the phone, telling her sister that we wouldn't be able to go because she needed to take care of me. This hit me hard...because the beach is like my mom's Holy Land, especially when her siblings are there, too, and I hated being the reason that she couldn't go. I felt like such a burden...and I tried to convince her to go without me, but she refused and insisted that she wasn't that sad about not going. ANYWAY - needless to say, I was really excited that she could go this time around, and I was looking forward to tagging along as well.

I have a love-hate relationship with the beach. Okay - it's mostly LOVE, but beach trips always seem to emphasize my CP, and that can be tough. My brother and his (girl)friend (let's call her Rachel) were always willing to offer me a hand when needed, but oftentimes it's hard for me to ask for help...I still feel awkward asking my brother if I can hold his hand for balance, and asking Rachel is even harder, even though we've known each other for about four years. Still, when my options are 1) ask for help or 2) fall flat on my face, I've been learning to lean towards option 1 in most situations.

Most of the time, even if no one's around to help, I can find ways to adapt and make it work. For example, when we were all going to go swimming in the ocean, my mom, aunt, brother, and Rachel all ran in effortlessly. I wanted to follow but I wasn't sure how; the waves were nearly non-existent at this point but even with the still waters, I knew I'd probably lose my balance if I tried to wade in with no support. I was unsure what to do for a moment, but then I spotted a boogie board! I placed it in front of me in the water and used it kind of like a crutch, leaning my hands on it for balance - and it worked!

The stairs to the beach
(photo credit goes to my aunt! I held onto the railing like my life
depended on it whenever I traversed these stairs ;))
I think the hardest moment (CP-wise) for me that weekend was later that night, though. It was about 11 pm and my mom and my aunt had just walked down the steps to the beach, where they saw the fish jumping in the water, illuminated by the moonlight. They came back and told my brother, Rachel, and me: "You've got to go see it...it's like a once-in-a-lifetime experience! It's incredible, go look." A few minutes later, we were about to go outside and see, when my mom called to me from upstairs, "You need to stay behind...it's really dark out there and I don't want you to fall on the stairs and get hurt."

I knew she was right...I knew she was being the voice of reason...but still, it stung. I didn't care so much about missing the actual experience...I was more hurt by the realization that I was missing out because of CP.  It reminded me of when I was nine years old, and my brothers and two of our friends were going to see Spy Kids 3 at the movie theater...I wasn't even that interested in the movie, but I couldn't go because I had a physical therapy appointment, and so all of a sudden, missing that movie felt like a Big Deal.

I think I will always have to deal with that hurt from time to time, and it might not get any easier, but as I climbed into bed that night, I decided to focus on what I could join in on. I had an awesome time despite that hard moment, and I swam in the ocean to my heart's content (my favorite part!)!

Next up: my best friends from home flew back here for a few days, and we had an amazing time reuniting. :) CP always keeps things interesting though......I've got a story that I'd like to share here, but I'll save it for next time!

P.S. Here's a photo from a few days ago; one of my collie's favorite hobbies is tug-of-war...sometimes she climbs on me while we play and it makes me smile. :)