Tuesday, October 25, 2016

FOUR YEARS

Four years. 

Four years ago today I was sitting on my bed in my freshman year dorm room when I hit "Publish" on my very first blog post. I then proceeded immediately to the "settings" of my blog and set everything to "Private" so that only I could read what I had written, which completely defeats the purpose of writing a blog.

I was scared. I wasn't sure how to share my story, or where to begin, or if anybody would even want to read what I had written.

But when I gathered the courage to set my blog to "public" again, people actually started reading what I was writing, and it seemed like it mattered to them. So I kept at it...I kept writing, kept sharing, kept connecting.

When I started this blog, there was a part of me that was afraid I was giving permission for my CP to overshadow the rest of my life. You see, cerebral palsy is something I rarely discuss outside of this space, outside of this community. I've never wanted to be known as "that girl with a disability" or "that girl who walks funny," and while CP is a beautiful, wonderful part of my identity, I want people to see me as so much more than that.

Looking back, I realize that my worries were unfounded. Blogging about my CP hasn't allowed it to take over my life, but my blog has given CP a space within my life. For the first time, I feel as though I have a safe place to acknowledge my cerebral palsy and all of the "extras" that come along with it (including, but not limited to, startle reflex, wrecked shoes, surgeries, and mini heart attacks whenever I spot a curb). I don't have to hide that part of me anymore. And having this space has given me the courage and confidence to be more open about my CP in the "outside" world, too -- even knowing that "the real world" might not be as supportive and understanding as my blog readers.

Above all, I want to thank you guys -- my readers -- whether you've been part of this journey for all four years or whether you've just found my blog, I want you to know that I appreciate you so, so much. My favorite part of blogging is that it has given me the opportunity to form connections beyond what I ever thought possible...friendships that are every bit as deep and complex and beautiful as the friendships I have forged in person. Many of you have reached out to tell me that this blog has helped you feel less alone, and hearing that fills me with warmth beyond words. Know that YOU have helped me, too -- just by listening, just by being here, whether we've written novel-length emails back and forth or whether you prefer to read without commenting.

Thank you...thank you for showing me that I am not alone in this, and for being here to encourage me through the hard days and rejoice with me through the wonderful days. This blog has become more than I ever imagined it would, and it has been an honor and a privilege to share my journey with you! Here's to another four years of blogging and connecting and togetherness in this crazy adventure of life. <3

If you'd like to reach out at anytime, please don't hesitate to do so: transcendingcp@gmail.com

LOVE YOU ALL!

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.
_________________

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!  

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.

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.

BLOG-RELATED THINGS:

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.)

ADULTING THINGS / BEACHES / ETC:

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. :)


Wednesday, August 31, 2016

Doctor's Appointment, Surgery Talk, Numbness, Collapsing, and Waking Up on the Wrong Side of the Bed

Hiii! I just had my 8 week post-op doctor's appointment, so I wanted to give you all an update.

First, let's talk X-rays. I had to get two of them before this appointment. I'm not sure if I'm psyching myself out or it's a CP-related thing or a combination of both, but you know how the X-ray techs put you into a position and then instruct you to stay "very, very still" while the picture is being taken?? It probably doesn't help that the position is kind of awkward to begin with (for hip X-rays, you usually have to "frog-leg" your leg out to the side) - but as soon as I'm told to stay still, my leg tenses up and it takes everything in my power to keep it from spasming out of position.

My totally accurate rendition of the angry X-ray tech
I managed to stay still enough for the images to be captured clearly on the first try, which was nice. I'll never forget the time 8+ years ago when I needed some hip X-rays after my accident, and I moved TWICE (finally, the third attempt was successful). IF LOOKS COULD KILL - the X-ray tech was so angry with me ("YOU. WEREN'T. SUPPOSED. TO. MOVE !!!!!!" she said, as if I was being purposefully defiant).

My recovery has gone pretty smoothly (still NO PAIN, YAY), but I did have two concerns that I wanted to ask my doctor about at my appointment.

First - ever since my surgery, my leg started giving out on me at random! I wouldn't even be tired...sometimes I'd be walking and I'd get a really strange, indescribable feeling in my leg for half a second, and then my whole leg would just stop working and collapse on me. It was a little freaky, unlike anything I'd experienced before. I'm still experiencing that a bit, but it's been decreasing in frequency as the weeks have progressed.

Second - my scar/incision site is numb, and so is the skin around it.

As for the collapsing, my doctor said that after surgery, everyone (CP or not) is going to experience some degree of muscle weakness, but for someone like me, with a neuromuscular condition like CP, that weakness will be exacerbated. He explained that my leg's "collapsing" is partially a muscular issue (i.e., muscle weakness because they had to mess with the muscle itself) but it's also - because of my CP - a neurological issue (i.e., post-surgery, my brain is having a hard time figuring out how to use my leg again, and it's sending out confused, mixed up messages). As my brain and leg figure out how to work together again, this weakness will dissipate, but he estimated that it will take about a year for things to be truly back to "normal."

As for the numbness - if you're curious - he said that's to be expected, especially because they re-used the incision site from my first hip surgery. As time goes on, I will likely regain some feeling in that area, but it will always be somewhat numb, and he reassured me that it's not anything to worry about and it won't interfere with anything. The numbness occurred because when they made the incision, they had to cut through nerves in my leg, and the scar tissue that formed is not innervated.

After addressing these concerns, he tested the strength in both of my legs and was satisfied, and then we checked out my X-rays. I wish I had pics of them here to share with you, because they were really cool! The bone is all filled in (YAY!), but you can see exactly where the pins used to be because the bone hasn't completely healed yet. Full healing will take about a year or so, and after three years, he said we might not even be able to see (via X-ray) that there were pins in my leg to begin with. :)

Now that my eight weeks are up and the X-rays confirmed that the bone has filled in, I don't have to be so careful about not falling, which is really exciting. ANDDD...I don't have to go back for another appointment until February!

I don't know if I mentioned this previously or not, but in the pre-op room on the day of my surgery, my doctor was talking to my parents and me about future surgeries and other interventions like Botox injections in my legs to further improve my mobility and reduce spasticity. This kind of freaked me out (one surgery at a time, please!), and I was nervous that we were going to schedule something ELSE at this most recent appointment.

He was happy with how I was functioning though, and so am I, so we decided to postpone that discussion until AT LEAST February...and maybe even a full year from now so that we can ensure that my leg has healed completely. :)

"At this point," he said, "I really think less is more, and I want you to be the one who decides if and when we do more surgery."

That made me happy. I might consider other surgeries in the future, but for now, I'm looking forward to putting this all behind me and enjoying my life with less pain.

The lack of pain has been the most noticeable outcome, for sure, but there are other, subtler differences, too. For the first time, I can carry my dogs' full water bowl the ten feet across the kitchen without sloshing water onto the floor. I used to have to take tiny little inch-steps across the kitchen, concentrating with every fiber of my being to minimize spilling - but ever since the pins have been out, my hip doesn't drop as much, so my gait is more even. My dogs are definitely enjoying this new development - maybe even more than I am - because when they're thirsty, they no longer have to wait five minutes for me to inch across the kitchen with their water bowl! ;)

I've noticed that my balance is better, too! I've still got CP balance (i.e., if you push me, I'll end up on the floor faster than you can apologize), but I feel a bit steadier.

And...this morning, I woke up curled on my LEFT SIDE. Ordinarily, this might seem like a ridiculously mundane detail, but it's been 8.5+ years since I've been able to sleep on that side. It felt like a privilege. A luxury. A victory.

For the first time in 8.5 years, I woke up on the wrong side of the bed 
- and I can't stop smiling about it. :)

Monday, August 22, 2016

Cement Stairs and One Little Act That Meant Everything To Me

One of the main academic buildings on my college campus had two cement stairs, without a railing, leading up to the front door. 

If you're reading this and you've got cerebral palsy, too, perhaps your stomach dropped (like mine always does) at the mention of cement stairs. 

As I went about my day-to-day life, I watched in silent awe as people skipped up those god-forsaken stairs as if they were nothing. They SKIPPED. UP CEMENT STAIRS. I mean, how is it that the average human being can glide up two cement stairs without breaking their stride, without even glancing at their feet, and without falling flat on their face? It truly is an incredible enigma to me. 

Anyway, because I was not endowed with the superhuman ability to skip up cement stairs, I adapted by circling around those stairs so that I could lean against the side of the building for balance. Then, I stepped up onto the stairs as I leaned, hoping that nobody walking out would open the door in my face. I'm not gonna lie - it was terribly awkward, especially because I had to climb through mulch and bushes to get to the side of the building. 

One afternoon, I was walking to class with one of my professors. We were having a casual conversation about something too trivial to recall, and then she proceeded to skip up the steps, while I circled around awkwardly and climbed through those bushes so that I could lean onto the building as per my daily protocol. 

I could feel her eyes on me as I clambered through the bushes and I wondered for a moment if she was going to scold me for trampling over the college's decorative vegetation, even though I really had no other option. 

Then: "I'm sorry about that," she said, her voice quiet, and I stopped clambering for a minute to look at her in surprise. 

"It's fine," I said automatically, still self-conscious about the fact that I was climbing through the bushes and, worse, that my professor was watching me climb through the bushes. 

She met my eyes with a faint, kind smile on her face, but her voice was firm when she replied. "No, it really isn't fine. I've been working with the head of our department to make this building more accessible, and it really needs to be a priority." 

The very next day, a railing was installed along those front steps. 

And even though there is still progress that needs to be made - even though the building itself still needs to undergo renovations to be completely accessible (a project that they are currently trying to push through to administration) - I wanted to write this post as a reminder that a little step in the right direction - a little strip of iron - can speak volumes. 

That little strip of iron spared me the daily indignity of climbing through the bushes for the rest of my college years, but even more than that, it made me feel as though I was part of my community. 

That little strip of iron probably went unnoticed by every other person who used those steps, but to me, it meant everything

That little strip of iron said
"You're welcome in this building, too
You matter.

Tuesday, August 9, 2016

You Asked, We Answered:
A Cerebral Palsy Panel

[Image is: Tara on the left, K in the middle,
Tonia on the right, pictured at 4 years old.  All smiles.]
As a child and a teenager, I really didn't have anybody else to talk to who also had cerebral palsy or a similar disability. I had Google for the basic stats - but despite the search engine's assurance that there were hundreds of thousands of people in the United States with CP, I often felt like the only one. If there really are that many of us, then why don't I ever see anybody else like me? I thought. 

Particularly throughout my adolescence, I had questions...questions that Google couldn't answer, questions I couldn't ask my parents or friends, and I longed for a connection with somebody who understood. 

In the past few years, I have finally discovered the opportunity to connect with people who have CP and other disabilities, and I feel as though a huge weight has been lifted off my shoulders. I can't even begin to describe what it's like to realize that there are others, to realize that we aren't alone at all...we are a community. We are together. 

Two of those people I've connected with have become some of my closest friends: Tonia, from Tonia Says, and her sister Tara. We all have CP. Tonia and I have spastic diplegia (she uses a wheelchair and forearm crutches to get around, and I walk unassisted but with a noticeably different gait) and Tara has mild right-sided hemiplegia.

Recently, we asked people - disability or not - to reach out with questions, and we got an amazing response. We have answered your questions here in the hope that this post will be a resource for others who have disabilities as well as for parents of children with disabilities and non-disabled individuals who might have questions about life with CP. 

To see the answer to a question, click on the question and our responses will appear. You can click on the question again to hide the answer once you've viewed it. 

Last but not least, at the bottom of this post, we have put together a list of links to blogs, social media sites, and articles written by people who have cerebral palsy. There are so many of us - so if you're reading this and you have  a disability, reach out to us and remember that you are never alone. We are here for you.

What accommodations did you receive in college?


Tonia: I’m trying to remember if I received any. I must have. Though, the only one I can think of offhand is maybe extra time taking tests, but I don’t even think I had that anymore in college. When I transferred to a larger university, I did live in the one accessible dorm. 

Tara: Just accessible dorms. And we got to move in a day early. 

K: I didn't require any academic accommodations, but there were a number of physical accommodations that my college provided for me: 

1) HOUSING: I received priority housing, meaning that every year, I got to choose my dorm room before everybody else to ensure that it would work for me (and I was allowed to pick a friend to be my neighbor!). There was a group of dorms on my campus that were attached to the dining hall, which worked well for me because I never had to walk far for meals...and during snowstorms/rainstorms, I didn't have to battle the elements to get food, which was a plus. :) 

2) RIDES: My college had a list of disabled/temporarily injured students who were "allowed" to call campus safety for rides to class. I only called them if I absolutely HAD to (e.g., during a snowstorm before the sidewalks had been cleared) because sometimes they were rude about it or took thirty minutes to an hour to come, and by then my class was almost over anyway. It was a helpful service nonetheless, and there WERE some truly nice campus safety officers that I befriended. :) 

3) CLASSES: My classes were arranged so that, whenever possible, they were located in an accessible building.

4) My "official" documented accommodations specified that I was allowed to be late to class in the event of inclement weather (a non-issue, because pretty much ANYBODY can be late to class in college and for the most part, nobody cares), and that someone would check to make sure that I safely got out of my dorm in the event of a fire.

I was given paper documentation of my accommodations to give to all my professors in the beginning of each semester, but I never did that. It was just too awkward, and I found that it confused my professors because none of my accommodations were academic. Instead, if any potential issues ever came up (e.g., field trips), I sent them an email, and I never encountered any professors who weren’t understanding.

Is it possible to be a science major and have CP? How did you manage labs?

K: YES. I was a neuroscience major and I have absolutely no regrets...it was such an amazing experience for me.

Labs were definitely a challenge at times. In upper-level labs, such as organic chemistry, sometimes we were there for 5 or more hours - which is a longggg time to be standing. My organic chemistry lab professor ALSO had a disability though, so she really "got it." Sometimes if I'd start to get tired, I'd just pull up a chair and sit while I worked - and if you've got overflow movements (i.e., your hands don't work as well when you're using your legs or focusing hard), I would recommend that you sit whenever possible while doing your lab work so that you can maximize your precision.

I didn't have any trouble pouring liquids or carrying things, but if you do, don't let that discourage you from pursuing science if it's a subject that you're passionate about. I know people with disabilities who have been assigned a partner to work with who can do the parts of the lab that require carrying or fine motor skills.


What has been your experience (if any) with CP and medical care as an adult? Are you able to find doctors who specialize in CP?


Tonia: Yeah, you pretty much fall off a cliff, LOL. Seriously, though, I’ve gone in for maybe-possibly CP-related stuff, and had to explain CP to the guy working in the minute clinic.

K: Ugh....like Tonia, I've had similar challenges with finding doctors who know about CP in adults, although to be fair, I haven't looked around a lot. I just switched to a new surgeon, though (the one who removed the pins from my hip), and he is AWESOME. He specializes in young adults (!), and he doesn't specifically specialize in CP, but he is very familiar with it - and that has been amazing.

Tara: I have no specific experience with medical care pertaining to CP as an adult.

Have you ever tried any kind of adaptive sports?


Tonia: I cringed at the idea of adaptive skiing when I went on a ski trip in sixth grade. I sat in the lodge the whole time because back then, I would rather have been bored than stick out because of my CP. When you’re a kid, all you want is to fit in. Tara reminded me, though, that I did attend camp for kids with disabilities from ages 13-15 and while there I did a bunch of what could be considered adaptive sports. Horseback riding, swimming, I feel like we did archery???

K: Yes. My CP is on the milder side, so for the most part, I have participated in "mainstream" sports along with non-disabled kids, and I just adapted for myself as I went along. I did ballet for two years, karate (along with my brothers) for six years, and I went to a summer soccer camp (again, with my brothers) in fourth grade. I did do downhill skiing as well, when I was younger. I don't know if it qualified as "adaptive," because I didn't use a sit-ski, but they definitely made adaptations for me. I used a ski-harness; my parents (or a ski instructor) skied behind me and used the harness to help me maintain my balance. I absolutely LOVED skiing, but I haven't been since I was about 12, and I have a feeling I might need more adaptations to ski now than I did when I was younger.

Tara: I have never tried adaptive sports.

How did you feel about doing PT when you were younger?


Tonia: When I was very young, it felt like fun. A little older and it felt scary sometimes, when working on balance issues. By late elementary school, early middle school, recovering from surgeries, it was not fun.

K: When I was little, I liked the puzzles and games that I got to play while we worked! By the time I was in middle school, I was going to a different therapist, and maybe it was the teenager in me, but I hated PT...I felt like the repetitive exercises were a complete waste of time (e.g., "Do 10 side leg lifts, then 20 bridges") and I didn't do them at home nearly as often as my therapist would have liked! When I was in ninth grade, I started working with a personal trainer in lieu of PT, and I liked that much better because I actually felt like I was getting stronger and accomplishing something -- and endless sets of repetitive exercises just didn't give me that feeling.

Tara: My earliest memory of PT is playing in some type of large cylindrical object. I was probably 2. At that point, I had no concept of PT. I got to play with things I did not have at home, and it was enjoyable. As I got older, I internalized a lot of the corrections as criticism which impacted my self-esteem.

I know CP is technically a static condition, but do you feel like your CP has gotten “worse” or harder to deal with as you’ve gotten older?


Tonia: The thing about CP (from what I understand) is that, as you say, it’s a static condition. However, having CP causes the wear and tear that happens to everyone’s bodies to happen to those of us with CP at a bit of an accelerated rate. All that being said, yes, I do notice that my stamina is not what it was in my 20s. I experience pain from time to time when I never used to.

K: Yes, I definitely feel like it has gotten worse in some ways, even though, as you say, it's technically "static." I don't feel like I can run around as well as I could when I was a kid, and in some ways, my muscles feel tighter. What Tonia said about CP causing accelerated wear and tear definitely seems to be true for me, too. I'm not sure how much of this could be attributed to the fact that I broke my femur at age 13/14, though - because after that, I experienced a huge drop in my physical abilities and never quite made it back to my "baseline." Now that I don't have as much pain in my left leg (after removing the pins), I'm noticing that I can move much more easily, more similarly to how I moved when I was younger.

Tara: I agree with K and Tonia. The biggest deal for me is definitely staying aware of the state of my shoes, and replacing them as soon as it is needed. (Which is at least every 3 months for me.) I have found that this drastically cuts down on the amount of pain I feel daily.

What (if anything) do you like about having CP?


Tonia: I love the sense of community and identity that comes with having CP (I have really only found this since I started blogging 2 years ago.) I love knowing there are other people like me whose bodies move like mine. I like being able to be there for younger people who have CP, so they know they are not alone.

K: Definitely the sense of community. It has been so amazing to find people who really understand what it's like to have CP and the unique experiences that go along with having a disability. Connecting with others who have disabilities has been such a blessing! I'd also say that CP has given my life a richness and a depth that I don't think it would otherwise have....it has challenged me to be tenacious, and to think critically and creatively about what I love about our world and what needs change...and it's definitely helped my problem-solving skills!

Tara: Just within the last six months or so, I have so enjoyed connecting with others who also have CP.

What was the most challenging part of college as someone with a disability?

K: For me, the most challenging part of college was finding my independence and feeling secure in my own body, especially in those first few weeks, when we had "mandatory" orientation games like Red Rover (shudder) and TAG IN THE DARK (my nightmare). I wanted to start my blog as soon as college began, actually - but I was in such a dark, despairing place those first couple of weeks that I just couldn't find the words to write. I felt more alone than I ever had in my entire life, and all of these "ice-breaker" games that were supposed to help us feel like a community just made me feel isolated and different from everybody else, because I couldn't safely participate in them.

Tonia: I went to college in the midwest, which means our winters are snowy. The hardest part for me was the lack of accessibility on my college campus after it snowed. The plows would come through, and push the giant snow piles right in front of the curb cuts. I’ve also gotten stranded in the middle of a public street on campus because of the snow and slush. And I dealt with angry professors who gave me punishment assignments because I actually could not make it across campus to their class due to weather.

Tara: The lack of a disability community.

What advice do you have for college/university students with CP?


K: If I could go back in time and talk to the college freshman version of me, I would say .... You can be independent, and you will be. Have confidence in your abilities - but at the same time, don't be afraid to skip those ridiculous orientation "ice-breakers," even if the college administrators claim they are "mandatory." Do what you need to do for yourself. Along those same lines, don't be afraid to ask for help if you need it - nobody is going to think less of you if you ask them for a hand on a curb or if you walk more slowly on the way to class. Be yourself, and be proud of who you are. This may be hard at first, but college will end up being one of the best experiences of your life...and don’t worry about finding friends! It will take a few weeks to find “your people,” but once you find them, you’ll wonder how you ever lived without them. *steps off soapbox*

Tonia: First and foremost, do whatever you must to keep yourself safe. Don’t be afraid to say “no.” Don’t be afraid to raise your voice. Secondly, don’t hate yourself if you can’t do college math. It’s not an excuse, but this is one of those things that could very well be “a CP thing.” I was always been around four years behind my peers on my math skills, while I was years ahead in reading and writing. I could not even understand the basic college math class I tested into. CP affects spatial concepts, so classes that are heavy on that might be difficult. Also, using a protractor may just be physically impossible. (It was for me.) If so, talk to the professor. Talk to disability services. Look into tutoring. Or find a major that does not require math classes.

Tara: Advocating for yourself can be overwhelming. Network with others with CP who have been or are currently in college - these people are a wealth of knowledge. Don’t be afraid of disability services or seeking mental health help.

Have you found having a disability makes romantic relationships or finding people to have those relationships with more difficult?


K: Yes, I think a disability might make dating/romance more challenging - but in my opinion, anybody who would judge you based on that isn't somebody that you would want to be in a relationship with anyway. :) To be honest, I haven't been too focused on dating/romantic relationships over the past few years (especially because the college culture tends to be one of "hookups" and partying, which are not what I am into!), but I have been asked out - which means that there are people out there who see you as more than your disability, or who see that it contributes positively to your life...you've just got to find those people! :)

Side note: When I was in high school, some people didn't know that I was a triplet, so they assumed that my brother was actually my boyfriend - both my brother and I found this hilarious. Anyway, there was a boy who I'd heard had been wanting to ask me out, but he was refraining because he thought I was "taken." I didn't like him back, but I didn't want to reject him - so my brother and I made no attempts to discourage that misconception. ;)

Tonia: I’m not interested in romance...at all… Never have been. So, the only difficulties I’ve had with regard to romantic relationships are men who refuse to accept the word “no” as a full sentence and respect it. Instead, they continue to pursue me, moving closer to sit by me, and even blocking me when I try to get away from them.

How do you think your temperament and other personality types influence your disability experiences?


Tonia: My Myers-Briggs Personality Type is ISFJ, which is also known as “The Nurturer.”

I could really easily look at the personality profile and see that it happened to me because of my CP. I mean, the “rich inner world,” the “learning by doing,” being aware of everyone’s feelings including my own and the intense sense of responsibility and duty. I could say the inner-world business was borne of me being on the fringes of actual social interaction. I could say it was because of the isolation I experienced. The hands-on learning, I could say, makes total sense, given the brain damage I experienced at birth. The awareness of all the feelings all the time, is because I knew what it was like to have mine hurt, and the sense of responsibility and duty is because I saw it modeled for me in the way my family took care of me.

But I think it’s cooler still to consider that those things happened for me. My personality set me up with a ready made coping mechanism for years of isolation, by giving me the creativity to make up lots of imaginary friends, to always play pretend, to always enjoy writing a good story. I got the bonus of being born a hands-on learner, because something somewhere knew I needed a way to experience and learn that clicked for me. I got the gift of extra sensitivity because I grew up knowing that words and actions matter and have lasting consequences so I’m glad I came equipped with a little extra in feelings-department. And it’s a great thing I came with that sense of responsibility and duty. With three younger brothers and lots of younger cousins to be an example to, it’s important that they know I’m there for them. With a twin sister I love more than anyone else in the world, it’s great to know I have what it takes to be here for her, too.

So, while I may very well have been a bit more extroverted had I not been born with CP - I also would not be me if that were the case - so I’m happy to be introverted, and I’m happy to be a nurturer. Also, our mom is an ISFJ, too, which is kind of awesome.

K: According to the Myers-Brigg Personality Test, I am an INFJ - "The Advocate."

"INFJs tend to see helping others as their purpose in life . . . though soft-spoken, they have very strong opinions and will fight tirelessly for an idea they believe in . . . INFJs find it easy to make connections with others, and have a talent for warm, sensitive language, speaking in human terms, rather than with pure logic and fact. There is a running theme with INFJs, and that is a yearning for authenticity and sincerity."

True to the profile of an INFJ, I value depth in my friendships beyond anything else - I love to laugh and have ridiculous, lighthearted conversations, but it is essential to me to be able to move beyond that and to be able to talk about the more difficult parts of life, too. My friends used to joke that I was the "counselor" of our friend group. (“If you ever have a bad day, go talk to K! She’ll pull out a chair for you, hand you a piece of string cheese, and listen as you pour your heart out.” ;)). I'm not sure if that comes from having CP and knowing what it was like to deal with difficult situations while feeling alone, or if it comes from being an INFJ, but in all likelihood, those two things are inseparable...my CP probably impacted my personality type, but my personality type also has a huge influence on how I conceptualize my CP.

I see my disability as an opportunity to spread compassion and understanding, so I would definitely agree with the Myers-Briggs assessment that my purpose in life is to help others. I want to use what I've been given to break down some of the stigma surrounding disability and to guide people who might be in a similar situation, and that's the main reason why I started writing and blogging about my CP. I don't expect to change the world, but when my time here is finished (hopefully many, many years from now), I'd like to know that I've left it a little bit brighter and a little bit kinder than it was when I first arrived.

So, YES - I am an INFJ through and through, and that has everything to do with how I handle my disability. I am soft-spoken (definitely!) but I have found my voice through my blog - and part of the reason why I LOVE blogging so much is that it allows me to help others, form meaningful connections, and speak up about cerebral palsy, even though I’m a quiet person by nature.

Tara: My temperament is melancholic, which is said to be thoughtful, considering and preoccupied with tragedy and cruelty in the world. I would say that this has made me more cautious in life. Any kind of injustice or ableism I encounter is less likely to just go in one ear and out the other, and will instead require a lot of discussion and processing.

My Myers-Briggs personality type is ISTJ (The Duty-Fulfiller). I don’t necessarily see this as influencing my disability experiences - moreso perhaps a product of birth order and being an oldest child.

My CP is very mild; how do you handle telling acquaintances or new friends about your CP?


Tonia: My CP is a bit more involved, and is such that I can’t walk unassisted. I use a manual wheelchair most of the time, and forearm crutches when I go places that cannot accommodate the chair. Because of that, people I encounter on a daily basis always know immediately that I am disabled. I can’t hide it. (Not suggesting that you are, only that I can’t quite relate to needing to disclose my disability.) So, I’m going to defer to Tara and K on this, as I feel like they are more knowledgeable in this area.

K: This is such a good question, and talking about my CP to people is something that I still struggle with as well. I walk unassisted but if I'm standing or walking, it's immediately obvious that I've got some sort of physical disability. In high school, I never spoke about my CP or made any sort of reference to my disability, and my friends never asked about it. When I got to college and started becoming more comfortable talking about it, I realized that I wanted that to change - I wanted to feel comfortable sharing about my CP and I wanted my friends to feel comfortable asking me about it.

So I started with one of my best friends from home. During the fall of my first year of college, during one of our late-night Facebook conversations, I sent her an essay that I had written about my CP. She really appreciated it, and even though we were really close before I'd told her about CP, somehow it brought us even closer.

I am more comfortable writing about my CP than speaking about it, so I used that strategy for a bunch of different people in my life. I slipped mention of my CP into an email when I had been matched up with my college roommate, or when texting with friends, I brought up a funny story relating to my CP. That way, they knew, but it wasn't awkward for either of us.

Another strategy that I've found helpful is to reference it casually in conversation, and each time you bring it up, it will become a little less awkward. You don't even have to specifically mention CP. For example, if it was really icy outside, sometimes I'd say something like, "I'm kind of nervous about going outside today...my balance is really questionable on a normal day, but when it's ICY outside...." or I'd mention having to get a ride to class. Each time you bring up your CP, even indirectly, it will help you and your friends become more comfortable mentioning it. I saw this trend with my friend group as well - at first, it was a completely off-limits topic, but after a while, my friends felt comfortable bringing it up in conversation, and I felt better about it, too!

I usually don't bother telling acquaintances about my CP, but if they do ask, I've found that it's helpful to have a pre-planned answer. For example, if someone asks me why I walk funny (usually I get this question from young children, but I adjust the vocabulary I use as necessary), I usually say, "Oh, I was born early so my brain doesn't always send the right instructions to my legs." You can adjust your answer according to your situation, the person asking, and how much you're comfortable sharing, but I find it's easiest to keep your answer as friendly, to-the-point and matter-of-fact as you can. (Again, you don’t even have to mention CP if you’re not comfortable with that...for instance, if you’ve got hemiplegia, you could just say something like, “Oh, the left/right side of my body doesn’t always do what I want it to do!” or “Sometimes I have trouble with the left/right side of my body.” Or, if you want to make it a little more lighthearted: “Sometimes my arm is a little rebellious!”)

It's still something I'm working on as well - it's not always easy to talk about CP, and my go-to strategy is still to mention it in an email or text message if I can, but I've found that speaking about it gets easier and easier the more that I practice! Good luck! :)

Tara: Honestly, I don’t tell people unless it happens to come up in conversation. It is my personal choice whether or not to tell anyone about my medical history. It depends on how much/whether I trust the person, and how much time I spend with them, among other things. If I’m asked straight out, it takes me by surprise as well, so I can definitely understand your feelings. There’s no “right” way to navigate something like this. Your feelings about disclosing (or not) may change with time and experience as well.

I'd love to know what it's like publicly/anonymously blogging about CP. What you believe some of the advantages and disadvantages are of sharing your CP journey publicly vs. anonymously?


Tonia: It’s normal for me, I guess? Like I mentioned in response to the previous question, my disability is something that’s visible. It’s the first thing people see when they look at me. I will say, though, that there are times when I want to get really honest about certain things, and I choose not to. I feel like if I blogged anonymously, perhaps I’d have less of a guard up about such things.

K: This is so interesting - I didn’t really think of myself as an "anonymous" blogger until now! I never thought I'd be the kind of person who would have my own blog, because by nature I'm kind of a quiet person and I don't really enjoy being in the spotlight. At my high school graduation dinner, my uncle mentioned that I should blog about going to college with CP, and I thought for sure that my parents would veto that idea - but they immediately and enthusiastically agreed, with one condition: that I don't post any current photos of myself (like me, they tend to be more private when it comes to sharing online). At the time, I laughed at my uncle’s idea ("Me? Start a blog? Never!"), but I kept it in the back of my mind. My parents don't know that I decided to go through with it, but you’ll notice that I don’t post any photos of myself beyond childhood, and that is my way of honoring their request. And although many of you use my first name in comments (which I am completely fine with!), I originally started with just "K" - which is a nickname I've had since I was really little, so it feels familiar, and it's just kind of stuck. :)

Only one person in my "real life" (hesitant to refer to it as that because my blog is my real life too, and I consider you guys to be real life friends!) knows about my blog, and she has CP, too. Although sometimes I'm tempted to share my blog with my parents and my best friends, for the most part I like keeping it separate from the rest of my life. I think this is in part because I am so vulnerable and open when I write here. It sounds corny, but I feel like I bare my soul for you guys. When people cross paths with me in "real life," my CP is certainly one of the first things that they see - but they are only seeing the superficial aspects of it: the tightness in my legs and the way my knees touch when I walk, for example. They don't see the ways in which my CP has shaped my life; they don't know about inaccessible field trips or surgeries, or even about the amazing parts of CP, the seemingly insignificant accomplishments that are everything to me.

If I put my picture onto my blog and posted it to Facebook, I'm guessing the girl who sat next to me in high school English would read it, and maybe the boy who sat behind me in trigonometry, and maybe that kid who passed me on the way to class a few times who "doesn't know me, but knows OF me." And I don't know if I feel comfortable with that. If my blog was about my favorite dessert recipes or my trip to the mountains, then - sure, I'd share it in a heartbeat and the girl from my English class could read it all day long if she wanted. But not this. Not yet. I don't want to be out in public and run into someone that I barely know and wonder if they read about the time I sobbed into my pillow after an inaccessible field trip, or vomited into a bucket for an hour after surgery. This blog, at this time in my life....this blog is for me. And for you.

I think one of the biggest advantages of having an anonymous blog is that I can be completely honest without having to censor myself. I'm not saying that everyone with a public blog censors themselves, and I'm very careful to respect the privacy of my family and friends in my blog, even though they don't read it...but for me personally, even if I just shared with a few select people, I'd read over every post and think, "How will this affect them? If they read that I had a bad day or that I'm having a hard time with my CP at the moment, will that worry them?" Then I'd edit. Rephrase. Remove. Delete. I’d feel obligated to sugarcoat or omit the difficult aspects of having CP, and those are so important to acknowledge and discuss. Ultimately, I think, because of that, I wouldn't get as much out of this blog, and I wouldn't be able to give as much either.

There are days when I wish I made my blog public, and I've seriously considered it at times. There are definitely advantages to it; I wish I could share some of these posts with my mom, for example. I know it would help us both talk more comfortably about my CP. But ultimately, although it’s a personal choice, I'm happy with my decision to NOT have a public blog. I love this little community we've formed together, and I love the connections that I've made with so many of my readers. My goal for my blog is to give as much of myself as I can in order to help as many readers as possible - and maintaining semi-anonymity is the best way for me to do that, because it allows me to feel comfortable sharing even when life is hard. :)

Follow-up question (by Tonia): Do you think our CP being “obvious” and “less obvious” makes the difference in choosing to blog publicly vs. anonymously? I’m struck that I (with the most obvious CP out of the three of us) blog publicly while K blogs anonymously. And Tara (with the least obvious) does not blog at all.


K: Hmm....it could play a role, and that's a really interesting thought - but at least for me, I'd say it's more of an issue of personal preference. I don't enjoy being the center of attention, and I tend to minimize how much I share on social media. In "real life," I like to share about myself, but I tend to be reserved about more complex topics (such as CP) unless I am with a friend that I trust and know well. Along those lines, I made the decision to keep my blog more anonymous in huge part because I know sharing publicly would limit how much I'd feel comfortable sharing. At least for me, I don't think my decision relates to the level of involvement of my CP, although it could be a factor for others.

Tara: My choice not to blog has more to do with a lack of time and energy than the obviousness of my CP.

Tonia: Fair. It just seemed really striking to read our answers and think about how our CP mirrored our blogging (or not) in a sense. Because, I think for me, CP does play a role, in that I’m so used to people seeing me, seeing my chair or my crutches and judging that, that it just never crossed my mind to blog anonymously.

As a person with mild hemiplegic CP, I feel I don’t quite fit in anywhere. Able-bodied people consider me disabled, but I don’t really feel like I’m disabled. I was wondering if Tara has any thoughts, as it sounds like she has mild CP as well?


Tara: I can really relate to your feelings. I was, for all intents and purposes, raised as able-bodied. I had several surgeries as a child. I wore a brace on my leg at different points. I still am way less coordinated than the average person. But essentially, I pass as able-bodied. And because of that, I too find it difficult to “fit” into the disability community. I will say “I have Cerebral Palsy” if pressed, but I do not use the term “disabled” when self identifying.

I will say, though, that connecting with others who have CP has been invaluable. I was surprised to have so much in common with these individuals. It has been such a validating experience.

Has anyone ever pushed your wheelchair without asking?


Tonia: Yes, most memorably on my first trip out of the country without my parents. I was 19.

We had just landed and someone brought me my wheelchair...and then started pushing me away from Tara and our friends, toward the main doors, talking about “leaving.”

If no one has ever done this to you, it feels a bit like being kidnapped might. I had no idea who this person was, what his intentions were, or where he was taking me. But I was afraid to speak up, because I thought he might get mad. Some people have really strong negative feelings toward disabled people, so I am always cautious.

Luckily, Tara and a friend rushed to catch him and stopped him from “leaving” with me.

Do you remember how weird it felt before and after surgery?


Tonia: Kind of? I didn’t feel weird before surgery, just scared. After surgery, I felt like my brain was wrapped in cotton so I just didn’t really care what was going on. Usually, I felt really tired and dizzy. Once, I was sick.

Tara: Anesthesia is no joke. It always feels weird! After surgery, I just remember being in a lot of pain and more tired than I had ever been in my life!

K: Yes. (see this post) Before my most recent surgery, they gave me laughing gas before inserting my IV (standard protocol because it was done at a children's hospital), and that was unsettling - it didn't make me laugh, but my breathing sort of slowed down and it distorted my hearing so that everyone's voices sounded far away.

Before one of my earlier surgeries, they administered my anesthesia through a mask, and I inhaled it the "wrong" way, so it made me cough. I reflexively pushed the mask away so that I could catch my breath, but the anesthesiologist pressed it down. I remember being terrified by that - I was only nine years old, and my last thought before going under was "I can't breathe and he doesn't know" and the anesthesiologist just stared at me as I fought the anesthesia. I was still coughing as I fell unconscious, which is a scary and unnatural feeling!

My body is really sensitive to anesthesia - I usually feel sick to my stomach afterward, and two surgeries ago, I woke up hypothermic. Apparently that's a somewhat common reaction to anesthesia (certain people are more susceptible to it), so this time around, they piled warming blankets on me in the recovery room, and I woke up nice and cozy. :)

I also have a distant, confused memory of being about four years old, and from what I understand, they couldn't get me to wake up after anesthesia...when I finally opened my eyes, the doctor was shaking me and my legs were in this weird contraption moving them up and down (maybe in an attempt to wake me? I still have no idea, although I was four and drugged up on anesthesia so I don't know how reliable this memory is). Then I just started crying uncontrollably and I didn't even have a good reason for it, which confused me even more. Ha...

Aside from those less-than-pleasant side effects, I usually wake up feeling completely exhausted and really, really thirsty, but nothing can quench my thirst!

Do your legs ever hurt when you put weight on them?


Tonia: Sometimes, yes. Specifically, if I do more physical activity than I’m used to, if it’s cold, or if the tread has worn off the bottom of my shoes.

Tara: Same as Tonia. Also, if spasticity is really bad due to overflow movements.

K: Yes. For the last 8.5 years, my left leg always hurt when I put weight on it. Otherwise, occasionally I just wake up with random pains that usually dissipate within a day or so - one day it might be my ankle, another day my knee, but it's usually not that bad. All of the factors Tonia mentioned can cause/exacerbate pain for me as well.

Do you ever feel like CP has “imposed introversion” on you? Do you think you would be more extroverted without it?


Tonia: You know, it’s possible! I am very much an introvert, and a lot of being disabled (for me) has meant dealing with people in authority acting like I am inferior because I use a wheelchair. There is a line in Grey’s Anatomy where Richard says to Bailey: “God made you short. Who made you quiet?” I feel like having CP might have played a part in making me “quiet,” so that people would not notice me and make rude comments. (Fun fact: As a kid, I was convinced that if I didn’t have CP, I would love to play on a Little League team...and my ultimate dream was to be an Olympic gymnast like Dominique Dawes.)

Tara: I don’t think it impacted my personality in that way.

K: I think I’d still be introverted if it weren't for CP, but I do wonder if my CP has increased the extent of my introversion. Really crowded places often make me nervous because I'm afraid of getting knocked over and trampled. Also, I typically avoid physically-oriented social activities such as dances, because I find them to be completely miserable (trying to maintain my balance in crowds is nerve-wracking and exhausting, and I hate when music is too loud to hear yourself think!). Overall, if CP weren't a part of my life, I think I'd still prefer books, movies, and quieter nights with a small group of friends over loud parties and crowded places, but maybe not quite to the same extent...but who knows? :)

How is it different having invisible disabilities as opposed to having disabilities people can see?

Tara: I would say it is a double-edged sword, because on one hand, I can pass as able-bodied. And there’s all sorts of privilege and presumed competence that goes with that.

On the other end of the spectrum, ableism looks different with invisible disabilities. I’ve been told:

“You don’t look like you really have CP.”

“You don’t have any balance issues at all, right?”

“You never pay attention.”

“You’re lazy.”

“You need to work harder.”

“You don’t care.”

These presumptions disregard my actual experiences and symptoms. They exacerbate feelings of isolation and promote self-loathing.

And as I mentioned before, it is difficult to find a place to land within the disability community. Because oftentimes, even they don’t see me.

As someone without a disability, sometimes I’m not sure how much help to offer (or not). Is there a “right amount” of help to offer and a “right way” to offer it?


Tonia: As someone who uses a wheelchair regularly, I would say, offer the same help you would offer to anyone else. If you see someone with their hands full, or who has dropped something, or is struggling with a heavy door, give them a hand. When in doubt, asking something like, “Do you need a hand?” is great, because it lets me say yes or no to the offer.

K: I completely agree with Tonia. I think the key is offering help politely and calmly ("Do you need a hand?" is so much better than "Ohhhh my goodness, LET ME HELP YOU!!") and if the person says no, accept that they know their own abilities and limitations.

Also? On occasion, when I help a non-disabled person, even in some tiny way (e.g., holding the door for them), they panic. "Ohhh, no, don't do that!" they say. "I should be helping YOU!" I understand the intent, but it makes me feel like I'm a centimeter high. Just because I have a disability doesn't mean that I'm incapable of helping other people. Most of the time, people just smile and say thank you - and that is perfect. :)

Tara: Offer help as naturally as possible. Don’t insist. Don’t be offended if we turn you down. Understand that sometimes what you’re doing to help may not be helpful, and be willing to back off. (i.e., If I am leaning on a door for support while opening it, you opening it for me will actually just result in me falling.)

How do you deal with feeling left out?


Tonia: Feeling left out was the hardest thing for me. Even into my 20’s, it was hard. The thing that has made the biggest difference for me now is connecting to other people with disabilities. With them, I know I belong somewhere. Those of us with CP and other disabilities know how it feels to be left out, and usually, we (at least, I) make a point not to do that to someone else.

K: This is such a difficult thing. There are so many instances, but I'm thinking back specifically to when my friend group went sledding without me - and they were gracious about it; they asked if I wanted to come and it wasn’t their fault at all, but I knew there was no way I could have walked in the snow - and I couldn't help feeling left behind. I called one of my best friends from home and we talked for a while - and then I cozied up in my bed with a jar of Nutella and Netflix. It didn't fix everything, but it came close; Nutella + Netflix = my coping mechanism for most of life's problems. Try it sometime. ;)

But seriously - blogging and reaching out to others within the disability community has been hugely helpful in that regard. It's just nice to know there are people who "get it." If you're a person with a disability reading this and you feel left out, too, just know this: you aren't alone. We are here. Reach out to us.

Tara: This is a very real part of having a disability. People don’t know how to include you, or they just don’t want to, or where they’re going is inaccessible. For me, accepting that this will happen has helped me. I try not to take it personally. (I try - I don’t always succeed.)

Accept that there are experiences that your neurotypical and/or able-bodied family members and peers will never fully understand. That’s okay. Reach out and connect to others within the disability community. We’re here, and we know what you’re going through.

Know that there will come a time in your life when you will be able to make a profound connection with someone because of your disability. Trust me.

Have you ever experienced shaking or involuntary tremors with your CP?


Tonia: Only after surgery or under extreme emotional stress.

K: Yes. Certain movements (like pushing out my knees) trigger shaking for me, but it seems a lot better now than it once was.

There was also one instance in college where the fire alarm went off and it was ridiculously cold outside, and the combination of startle reflex and cold made my legs shake so badly that everyone started offering me their coats!! I was so embarrassed, and my legs were tremoring so much that I was afraid I was going to collapse right there on the pavement, haha...I was so glad when we were allowed to go back inside!

Tara: I’ve experienced leg spasms after surgery, and my legs shake uncontrollably after any amount of alcohol. I experience involuntary movement akin to a whole body shiver at least once or twice daily.

Did you ever have alcohol in college and how did it affect you? Do you think having CP impacted how drinking affects you?


Tonia: I’ve only ever had, like, 2 sips of blush wine (this was after college.) I don’t know if having CP impacted how drinking affected me, but I wouldn’t rule it out. I know it hit me really fast. I felt spacey and my lips and tongue got numb. I don’t recall if it affected my gait or spasticity specifically.

K: Yes. I haven’t had much experience with alcohol (my first drink wasn’t until several months after my 21st birthday), because I was worried about how it would affect me. I have never had more than one drink at a time - and it’s hard to know how much of this is “placebo effect” - but alcohol actually seems to help me move a bit more easily; my legs felt a little looser. From a neural perspective, this actually makes sense, because alcohol mimics a neurotransmitter called GABA, and spasticity results from a deficiency of GABA. I’d be nervous about having more than one drink at time though, because I don’t need another reason to be off-balance!

If you’ve got CP and you’re wondering about alcohol, my suggestion would be to make sure you’re in a safe place and with a friend you trust, and take it slow to see how it will affect you. Also, if you’re taking any medications for spasticity (e.g., Baclofen) or anti-epileptic drugs, check with your doctor first - because those often can’t be safely mixed with alcohol.

Tara: As I previously stated, my legs shake uncontrollably after any amount of alcohol. (I’m talking about a sip of communion wine that makes my legs convulse almost to the point of not being able to walk unassisted. The shaking usually subsides in about a half hour.)

How do you feel about faith/religion/spirituality? How does it fit into your life as someone with CP?


Tonia: The short answer is, it’s really complicated. For a longer answer, check out the Let’s Talk About Faith series on my blog.

K: My faith is a pretty big part of my life, and I believe that God gave me CP for a reason: to enrich my own life and teach me to be a better person, but also so that I could help other people. With that said, it's upsetting to me when people imply that because I have CP, I am broken. I don't need to be fixed or healed, and I am not broken; I just have CP. :)

Tara: I definitely believe in a higher power, but I am severely disillusioned with organized religion. In my experience, religion and CP generally do not mix. I do not judge those who find comfort within church walls, but I have found more ableism than acceptance there myself. The very mention of faith/religion/spirituality/church aches like grief in my chest. Hearing those words is synonymous to me with REJECTION/ABUSE/WORTHLESSNESS/FORSAKEN.

When were you diagnosed with CP?


Tara and Tonia: We were diagnosed at 18 months old.

K: I was diagnosed at 13 months old, although I started getting PT at around 6 months.

I’ve heard that diminished pain sensitivity is a part of CP. I’ve also heard from others with it who have increased pain sensitivity. I was wondering if you’ve experienced any pain sensing issues?


Tonia: I’d say I fall on the diminished pain sensitivity side of the spectrum. Several years ago, a mug of ours had fallen on the floor and shattered. Tara and our cousin tried to pick up all the pieces and we thought they had. Later that night, I was doing something and noticed these small red stains on the carpet. I thought: “What IS that? That’s so weird!” Then, I noticed my foot. I had not registered any pain whatsoever when a random shard of mug cut it…

K: It's not completely obvious, but I think my pain sensitivity is a little diminished. When I was younger, I got a second degree burn on my lower back from a heating pad in PT, and I didn't even notice it until it started to get infected. Even when the heating pad was burning me, it might have felt a little bit uncomfortable, but it wasn't painful. I also had a couple of instances in college in which I took off my shoes at the end of the day only to realize that one of my socks was soaked in blood.

Tara: I have sensation issues both related and unrelated to CP. I would say I definitely experience diminished pain sensitivity, but increased sensitivity to other stimuli like a pedicure.

What was your major in college?


Tonia: I always wanted to pursue Creative Writing in college, but didn’t because I was cautioned I could never make a living. Graduating high school, I thought I would pursue Elementary education (second grade, because I felt like younger children would respect me more.) I ended up briefly pursuing a major in Special Education. To be clear, I never actually majored, due to financial struggle and a total inability to successfully take any college math, which was required for a SPED major.

K: My major was neuroscience - although when I started this blog, I thought I was going to be an English major. A neuroscience class that I took for fun changed that for me and I have absolutely no regrets. Neuroscience is such a fascinating subject, and my classes and textbooks have allowed me to develop a deeper understanding of my CP.

Tara: I briefly pursued a major in speech pathology. I was unable to complete it due to mental and financial strain.

Is there a correlation (that you know of) in multiples, regarding birth order and CP?


Tonia: To be clear, I’m not a doctor, however, from what I understand…

CP can happen because of oxygen deprivation before or during birth. In the case of multiples born naturally, one is born first. The other has to wait. (I don’t think any multiples above twins are delivered naturally.) I know Tara and I were natural births.

As I was second-born (15 minutes later, as our mom did not know she was having twins) it makes sense to me that I have more involved CP, as I had to wait a little bit to breathe. (We were also nine weeks premature, which, I am sure, contributed as well.)

K: Full disclosure - I'm not a doctor either, of course - but I have heard that there might be a (small) correlation between birth order and CP.

I'm a triplet, and I was born last out of the three of us (C-section, so we are less than 30 seconds apart) - and I'm the only one with CP. There have been a few studies that have reported a connection between CP development and birth order, such as this one (here), which found that 56 percent of twins with CP were born second (meaning that less than half of twins with CP - 44 percent - were first-born). However, many studies have found no association at all between CP and birth order, so at this point, it's still kind of a mystery.

Interestingly, it has been consistently found that boys are at a slightly higher risk for CP than girls - but neither of my brothers have CP.

How do I put my own hair up in a ponytail?


Tonia: I usually wear my hair really short, because of convenience as much as comfort, but there was a period of a few years when I grew it out. CP primarily affects my legs but also affects my right hand, so for a while, I really struggled with this.

I used clips and pins mostly, but once, I asked my cousin, who’s very into style, if he would show me how to put my hair up. He sat on my lap, and reached behind me, so his hands covered mine, and guided me through the process.

To be specific, I realized that I needed to hold my hair that was gathered in my more affected hand, so I could use my good hand to secure the ponytail holder around it. This took a lot of practice, but I eventually became able to put my own hair up.

(There is also a great article in our links section at the bottom called The Freedom of a Ponytail that is really worth the read!)

K: My hands are pretty much unaffected by my CP, so I don’t feel like I can add too much to this, but I had to put my hair up for labs almost every day in college, so I have a couple of tips that might help.
First - to get a smooth ponytail, I find it works best if I tip my head down and flip all my hair toward the front of my head, and then flip my hair back again as I tip my head back up.

Also - be patient with yourself and set a chair in front of a mirror so that you can practice without worrying about keeping your balance!

Tara:
1. Sit down. (Seriously, you don’t need to be thinking about balancing too!)

2. Put a hair tie on the wrist of your choice. I use my right (CP) wrist.

3. I use my right (CP) hand to gather the hair that I brush back with my left hand.

4. I put down the brush (left hand), while still holding my hair back with my right hand.

5. I use my left hand to move the hair tie off my right wrist, so it is around my hair. (The tie should be between my head and my right hand, still holding my hair.)

6. With my left hand, I stretch the tie to the left. This way, I can see what my left hand is doing with the tie.

7. I turn my left hand so that the hair tie forms a Figure 8.

8. I guide my left hand through the left side of the Figure 8, so the hair tie is around my knuckles.

9. I am now able to switch my gathered hair from my right hand to my left.

10. I use my right hand to peel the hair tie from my left knuckles.

11. With my right hand, I stretch the hair tie to the right.

12. I turn my right hand so that the hair tie forms a Figure 8.

13. I guide my right hand through the right side of the Figure 8, so the hair tie is around my knuckles.
14. I switch my gathered hair from my left hand back to my right hand.

15. I use my left hand to peel the hair tie from my right knuckles.

16. Repeat steps 7-14.

17. The Figure 8 should be small enough at this point to guide my ponytail through to stay.

(You do not want to know how many ponytails I made while typing this out!)

Is God planning to “fix me?” If so, WHY? It hurts to think that maybe my church is ableist. It is supposed to be a peaceful place, and now I feel unsure.


Tonia: I mean this, from the depths of my soul: There is nothing wrong with you. CP is an important part of what makes you who you are. You do not need to be fixed or healed physically, especially if it’s not something you want. Church (and all places of worship) are supposed to be peaceful and safe. If you don’t feel safe at your place of worship, don’t feel pressured to keep going. Find another place, or find peace by creating a sanctuary within you - a quiet place - where you can accept yourself and love yourself, exactly as you were created to be.

Tara: If you believe in God, then you believe that God made you. You were created with the utmost reverence and respect. Your disability is not a fluke or a mistake. You were meant to exist with your disability. Miracles happen every day - you are an example of that. There is no need to fix what is already perfect, friend. :)

I am so sorry to hear that your church may be ableist. That is such a difficult thing. There is no easy answer - we live in an ableist society, and it may be more of an anomaly to find a church that is not ableist. Above all, remember that you are loved. God does not exist solely within church walls but within each one of us.

Do you get lost a lot, geographically?

Tonia: Yes. It’s called place blindness, and from what I know (based on my own experience and talking to others) it seems pretty common in those of us with CP. You are not alone!

K: YES! (See my excited comments on Tonia’s post about place blindness! There are neurological reasons for this, especially in the case of spastic diplegia. This was pretty much the foundation of our friendship.)

I also have trouble with some other things that require visuospatial skills. Organic chemistry, especially, was a challenge for me. I got through it, and I never told the professor about my visuospatial issues, because they are usually mild enough that I can manage them by being patient with myself and working really, really hard. But there was night in particular, the day before an exam - we basically had to look at a 2D drawing of a chemical compound and use a plastic model kit, with tons of tiny little pieces, to turn that 2D picture into a 3D representation. Then, assuming we constructed it correctly, we had to remember which part of the model represented which part of the picture, flip the model so that the parts were oriented in a specific way, and THEN determine if the parts were oriented clockwise or counterclockwise. Lots of people without visuospatial issues struggled with this concept, but for me, it was a nightmare. Looking at the plastic model just confused me further, and I don’t think I’ve ever felt so hopeless about a concept as I did that night! All of my struggles made me feel really, really accomplished when I finished the class, though - and I got better at a lot of the skills as the class progressed, which makes me wonder the extent to which place-blindness/CP-related visuospatial issues can improve with practice.

Tara: I can follow simple directions - 3 turns or less. Any more than that, and everything just turns to a confusing mush.

Sometimes I question whether I should ever be a mom. Is it right to subject an innocent child to this way of life?


Tonia: People with CP are parents. (The CP Mommy). If being a mom is something that you want, and if you are financially able, and have the right support around you in the form of family and friends, there is no reason you should stop yourself from being a mom.

Though I am not a mom myself, I have taken care of many kids over the years (via babysitting, and as a camp counselor) and the thing about kids is: they will mirror you. If you are okay with your CP, they will be, too. They learn how to react to things from watching important adults in their lives. If you frame things as normally and as positively as you can, it will only mean good things for the kids you have in the future.

K: This ^

Tara: While you should not feel pressured to become a parent, being disabled does not preclude you from being one. Do not let internalized ableism stop you. If you have adequate housing, finances, support system and the desire to love and care for a child - you absolutely should! The only thing you’re subjecting an innocent child to is life.

How do you deal with ableism?


Tonia: People say all the time, “I could never live disabled.” The truth is, the hardest part about being disabled (for me) is not what I can’t do physically. It’s dealing with people’s attitudes and assumptions about what I can’t do physically. Dealing with ableism is hard. At best, it’s a rude question or a babyish tone of voice. At worst, it is violence.

Do whatever you can to keep yourself safe. What helps me the most is talking to other friends with disabilities after somebody says something ableist to me. That community is so important. (Don’t know where to find us? Check out the links at the bottom for a place to start.)

K: ^ YES, everything Tonia just said. I can't emphasize enough how important it is to have people in your life who understand what it's like.

Tara: If I am really comfortable with someone, I will correct them. After the incident, I will connect with Tonia, K, or another friend who understands.

How do I recognize when I am being ableist and stop?


Tonia: First of all, educate yourself. There are tons of resources online about ableism. Google it and read some results by people who are disabled. Also, if someone with a disability (visible or invisible) tells you that something you have said or done has hurt them, say, “I’m sorry, I won’t do that again,” and then do your very best to not do that thing again. 

Tara: Realize that ableism is a thing that exists. And then, basically do what Tonia says. (Ha! Tonia Says!)

Do you consider yourself a disability activist?


Tonia: I consider myself a disability advocate. To me, activist implies taking a more active role, and I have never crawled up the steps of the capitol building. But I have written things that alert public to issues that the disabled community faces.

K: I am not an activist, but like Tonia, I’d consider myself to be an advocate.

Tara: I do not consider myself a disability activist.

Do you have a hard time talking when you walk?


Tonia: I have a hard time doing anything else when I walk. Or bike. Or do anything that involves my legs. My legs always feel like they have to join in and “help” me do whatever else I am doing, when I am also using them. (Strangely, I can talk, and push myself in my wheelchair with no problems!)

K: Sometimes. It's not difficult if I'm walking on a level surface indoors, but oftentimes in college, people would want to walk with me on our way to class, and I definitely noticed it was trickier to carry on a conversation while navigating pavement or other, more precarious surfaces.

I can think of one particular situation that exemplified this. I was walking to class on a really icy day, and one of my best friends caught up with me. She was having trouble with one of her homework assignments, so she started asking me a ton of sciency questions. Oftentimes I'd help her in my room before dinner and I'd give lots of detail, but at this particular moment, I was desperately trying to avoid falling flat on my face, so for each of her questions, I could barely reply with more than "yes" or "no." I think she was confused by my vagueness, and then we had to split off in different directions, so I felt like a jerk for the next few hours. I caught up with her after class and explained, and she was completely understanding, but it was definitely one of those situations that could be misconstrued as rudeness when in reality I just couldn't divide my focus between walking and conversing.

Tara: Sometimes, but other times I find it easier to talk while I’m walking.

Does your leg ever feel weird and give out?


Tonia: Sometimes, when I have spasticity-related pain.

K: Sometimes! It doesn't even really hurt - sometimes I'll just be walking and one of my legs will collapse on me. I've always been able to catch myself in one of those instances though. This happened a lot, too, after my most recent surgery, but it's happening less often now, so maybe my leg was just "confused." ;)

Tara: Occasionally, when I am more physically active than usual.

Is there a right way to walk with forearm crutches? (Putting both forward, followed by your feet OR using them reciprocally?)


Tonia: I don’t know about a right way, but for me, it has always felt more natural and safe to use them reciprocally. Any other way, and I feel like I will lose my balance.

K: I've always used them reciprocally, although when I was in the hospital, the PTs wanted me to put them both forward and then my feet. I definitely prefer reciprocal, but maybe "both forward" takes a little more weight off your legs?

How can I know if the place I am going is really accessible?


Tonia: Call ahead to the venue (or house) and ask as many questions as you feel you need to. “How wide are your doorways?” “Is there an elevator?” “Are there handrails in the bathroom?” “Are there stairs anywhere that I will have to navigate?” If there is a website (or if you are speaking to a relative or friend) you could also have them take pictures or look at the pictures of the accessible rooms yourself to determine if it will work for you. Don’t be afraid to ask for a hand or a chair if you need one, once you are there.

My daughter is 18 and she has CP. Since she has graduated high school, I have been trying to get her to do more things for herself, but this is not working out well. I’m not sure if I am going about it in the right way.


Tonia: It’s possible that your daughter is picking up on your anxiety and frustration about this and it’s impacting her. For people without spastic CP, your feelings don’t impact your physical ability to complete tasks or move around. For those of us with it, strong emotions (anxiety, fear, anger, excitement) can cause spasticity (high muscle tone or tension) to affect our muscles.

First, try to be calm yourself when you encourage your daughter to try doing something for herself. Understand it probably will take her extra time, because lots of things require us to really think about what physical movement is necessary to complete a task. It’s not always automatic for us to “organize” our bodies to move in new ways.

Also, address your daughter’s fears. Ask her what is worrying her and talk about it together. “It’s okay if you drop something.” “It’s okay if something breaks.” “It’s okay if it takes you a little longer. We have time.”

Finally, try giving her small, manageable tasks you know she can do, to start with. Things like this are often as much about self-confidence as they are about motor-planning and CP issues. Once she does the small job successfully, add another job you know she can do. (Some examples might be setting silverware around the table, washing dishes, folding towels and washcloths, wiping off the kitchen counters or the table.) Slowly, introduce tasks she’s not familiar with, and give her plenty of time to figure out how to approach them in ways that work for her.

Tara: Realize that oftentimes, we spend our entire lives having someone else advocating and doing for us. And then, we turn 18. And the world is essentially turned upside-down, because we are told: “Do this.” Something that is second-nature to a parent feels overwhelming to someone who has never done it.

When introducing a new task to someone for the first time in a work environment, one does not expect a new employee to instantly retain and perform them. There is a period known as training, sometimes for as long as 2-3 weeks, to allow a person to absorb the intricacies of their new duties. 

When I train a new employee, I follow a model called SHOW TELL DO REVIEW: 

1. I SHOW or perform the task slowly from start to finish.
2. I TELL or explain what I am doing and why.
3. I allow my trainee to DO the task, while I am there to support them. (No discouragement or sarcasm allowed on my end, just calm correction.)
4. I REVIEW the task with the trainee. I allow them the space to perform it themselves. I assure them that I am close by if they have any questions.

Hope this helps both of you!

My son is 2 and he has CP. His doctor mentioned that he will have a lot of anxiety about interacting with other people. I didn’t really understand what was meant by that. What’s your take?


Tonia: Honestly? My take on this is that the doctor is jumping the gun a little bit. At 2 years old, your son is so young, and there is no use in projecting anxiety issues onto him. (Anxiety IS a real issue for many with CP, myself included.) But it’s presumptuous, in my opinion, to saddle a toddler with future social anxiety issues based solely on the fact that he has CP.

Your son will be looking to you at this age. He will pay attention to how his parents react to his behavior and situations. If you are comfortable and confident in introducing him to new situations and people, he will internalize that, and likely, be more at ease around others. So, do with him what you’d do with your typical child: teach him how to introduce himself to other kids. Practice asking them to play. Often, it seems, kids with disabilities feel out of their depth in social situations because we have not had the opportunity to be social with other children. I was comfortable with adults at 2 but not around kids my age, because I was not around kids much (due to health concerns.)

When is the right time (or is there one) to disclose CP in a college or work environment?


K: For me, it depends. I had a paid internship last summer as a research assistant, and my employers could see that I walked differently, but they never asked about it, and because CP didn't affect my ability to perform my job, I never mentioned it.

In college, I disclosed to my professors on a case-by-case basis. Occasionally, during the first class they would hand out slips of paper and tell us to write down anything we wanted them to know, so sometimes I wrote something along the lines of: "I have mild cerebral palsy that doesn't affect my cognitive abilities, but sometimes it's a little harder for me to get around - so I might be late to class sometimes, but I will try my absolute best to be on time! I am really looking forward to your class." 

Other times, I sent them an email with similar sentiments, particularly if the syllabus mentioned a field trip or if I had a class that ended a few minutes before theirs and I anticipated being late on a regular basis. Like I said earlier, professors usually didn't seem to mind if anybody was a couple minutes late, but I thought it was important to let them know if it was going to happen often.

If I didn’t anticipate it impacting anything, I didn't mention CP to my professors at all, and that worked out, too!

Tara: I have had jobs where disability was never an issue, and I’ve had others where it is (or becomes) a huge deal. I never disclose right away. (This is your personal choice, and employers cannot legally ask you if you are disabled/what your disability is.) Know that you can, at any time, request to meet with your employer or Human Resources (or disability services if you’re in college) to have a conversation regarding disability and accommodations.

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