Monday, June 27, 2016

Surgery Tomorrow!

I know it's been a while since my last post - I have several others in the works - but I just wanted to stop in and mention that my surgery is scheduled for tomorrow, so any prayers and/or good thoughts you could send my way would be hugely appreciated. :)

I'm not really sure what the immediate recovery is going to be like (but I will write about that after the experience!), but afterwards I'm supposed to be reallllly careful / stay off my leg for about 6-8 weeks, so that should be interesting...

The tough part about having CP in all of this is I'm not really sure how the surgery will impact me. Most people who have the same surgery don't have such strict 6-8 week restrictions, but because of my CP, everything is much higher stakes. If I were to fall on the unhealed bone and re-break my leg, things would be SO bad...in fact, I'm not even sure what the extent of the badness would be, because my surgeon trailed off at that part, but I'm pretty good at filling in the blanks. They're also thinking that because of my CP, it'll take longer for me to return to my "baseline." But despite all of this, my surgeon thinks that it's the right thing to do, and hopefully it will help with the pain in my leg!

...So despite all of the unknowns, I'm just going to take a deep breath and have faith that it will all work out for the best in the end.

I won't say that I'm not scared, because I am. I'm nervous about little things, like whether they will be able to find a vein for my IV after one of my only "good" veins was used for a blood test, so there's a huge bruise in the spot where they normally try to place my IV. Here's hoping they won't need to stick me twelve times and the blood won't spurt out of my hand like it did the last time ;) I'm also nervous about some bigger things...like how I'll be immediately after the surgery, especially after my last, not-so-good experience in the hospital where my pain was hard to control and I couldn't keep down food and water...and of course, I'm worried about the long-term effects of this decision.

I think my mom might be more scared than I am though...so the two of us are heading to the beach for the day to try to relax.

I hope the next time I post here, I come with good news. :) In the meantime, thank you so much for alllll of your support...it really means a lot!

P.S. If you've sent me an email and I haven't replied yet, please know that I have read it and I LOVE hearing from you! I just want to be able to give my response the attention and time it deserves. And if you'd like to send me an email for whatever reason, I'd love hear from you too...write to transcendingcp@gmail.com.

Until next time! xo

Thursday, June 2, 2016

THE FIELD TRIP FIASCO: When everything ISN'T fine, but one person makes all the difference

STORY TIME! :)

Last December, my anatomy class took a field trip to a cadaver lab to see an actual cadaver at a large university. I was excited about the trip itself, but I have to admit that when I saw the trip outlined on the syllabus, my heart sank a little bit. With CP, it's never "just" a field trip - life is a lot more complicated than that. What if the campus isn't accessible? What if we have to walk miles across the campus (which is the size of a small city) to get to where we need to be, and I can't keep up with the class? What if it's icy in December and I fall? What if...? What if...? What if...?

What if I just email the professor and explain my situation? I took a deep breath and decided that's what I'd do. She'd probably understand better than most, I figured, because she's a physical therapist by trade and teaches anatomy as an adjunct. Maybe she'd have advice and insights for me, or she'd tell me that there was no way to safely make the trip work, and that would be okay too.

So I womanned up and sent her an email explaining about my CP. It was the end of September at the time, but I decided it was best to be proactive about it...if you've gotta swallow a frog, do it fast! ;)

I tried to make it casual but direct...here's an excerpt if you're curious:
"I have cerebral palsy that primarily affects my lower body, so my balance and endurance can be kind of iffy, and I know that [UNIVERSITY] is a huge campus and it might be a little icy in December. I was wondering if you might have any insights with regard to how much walking might be involved and/or what the campus would be like? If not, that's okay - I just don't want to hold up the rest of the class, and I have trouble handling curbs because of my balance issues, so I'm a bit concerned about getting from point A to point B. :)"

THEN - ok, this part might've been overkill, but I wanted to make sure I got my point across loud and clear - I mentioned, briefly, the incident that occurred eight years ago, when I slipped and fell and broke my femur.

"I just want to try to anticipate any issues that might arise," I wrote. "It was a difficult experience to go through and it's not something that I'd ever want to repeat if I can help it - so I try to err on the side of caution, especially when pavement and ice are involved."

She emailed me back promptly and was very gracious, saying that her goal was to provide me with the physical support that I needed but for me not to feel uncomfortable in any way.

That sounds good, I thought.

Then she asked if we could meet before class to discuss things further. I agreed. But when I arrived to class early to meet with her, there was another one of my classmates sitting next to her at the same table. I know this might sound silly to some of you that are more..."seasoned" (is that the right word??) when it comes to talking about your disability, but I REALLY didn't feel comfortable delving into my personal life with this kid listening in. I'm not ashamed about my CP, but I'd still rather talk about accommodations and personal difficulties in a more private setting.

I think she realized this, because she watched me carefully for a moment as I tried to figure out what to do/say, and then she said something like, "I checked with the program director and he said there should be no accessibility issues so I think everything will be fine."

I nodded. OK. That sounds good, I said.

In hindsight, I think both of us could have handled this situation better. Maybe she could have asked my classmate if he could let us talk alone for a few minutes or informed him that we had made an appointment to talk, or maybe we both could have gone to another table. And maybe I could have been more open - maybe, after class, I could have explained my hesitation to talk about CP in front of my classmate and pressed her further about accessibility.

But I didn't. We didn't. She told me everything was going to be fine, and I believed her.

I should have realized. I should have realized when, 2.5 months after this conversation, she told us to meet in a certain parking lot on our campus that I'd never been to before and that seemed to be in a very odd place on the map. I started walking toward the general direction of the parking lot about an hour before we were scheduled to meet there. Plenty of time, right? WRONG. DEAD. WRONG.

I ran into another girl from my class as I was walking (for the sake of the story, let's call her Emma), and we figured we'd find the parking lot together, somehow...even though neither of us really knew where we were going.

First, we ran into a CEMENT STAIRCASE with about 30 steps down. SIGH. There was a railing, so I managed, but that's about when I realized that "anticipating any issues that might arise" is a heck of a lot harder than it sounds.

THEN. Curbs. E V E R Y W H E R E. We weren't even off our campus yet, and I was already in trouble! This parking lot that she wanted us to meet at was at THE MOST INACCESSIBLE SPOT POSSIBLE.

I didn't feel comfortable asking Emma to give me a hand on the curb. Big Mistake. I took a deep breath and attempted the curb and...

I fell. On the pavement. In the middle of the road. In retrospect, sacrificing my safety for the sake of my dignity by not asking for help was a Very Stupid Idea...and it didn't even work, because there's nothing quite as undignified as lying in a heap in the middle of the road after you trip on a curb.

Emma helped me up, and a few teachers from a middle school near our campus witnessed the whole thing and offered to help as well. ("Do you want to come in and see our school nurse??" they asked. No thank you...this situation is embarrassing enough as it is!)

After a moment, though, I realized why they were asking: blood was streaming from my lip. PERFECT. WE HAVEN'T EVEN GONE ON THE FIELD TRIP YET AND I'VE ALREADY MANAGED TO GET LOST, TRIP ON A CURB, FALL ON MY FACE, AND NOW, I'M COVERED IN BLOOD.

Emma was so amazing, though - she had tissues in her backpack (side note: ever since this incident I have followed her lead and I've never been without a pack of travel tissues...you know, just in case I fall flat on my face again in the near future, which is a clear possibility when you've got CP!)...and she was completely calm about everything.

She offered to tell the professor what had happened if I wanted to go back to my room and skip the field trip, but I figured if I'd made it this far already, I might as well keep going, so - after she reassured me that the cut on my lip wasn't noticeable (and it wasn't, at least after the bleeding stopped), we continued on our way.

After a few more feet, we came across another curb. (I have never seen so many curbs in a contained area EVER. It was like my Own Personal Hell) This time, I asked her for a hand.

"Oh, yeah, of course," she said - and it was no big deal.

We made it to the parking lot just in time (recall that I had left an hour early!!).

I had decided ahead of time with the professor that I would ride with her group so that she could drop us off in front of where we needed to be instead of walking a mile from the parking garage. That part worked out well, and it actually ended up that our entire class was dropped off in front, barring the professor and the three other people who were drivers - so it wasn't really obvious that I was being accommodated...but once again, there were curbs EVERYWHERE on this campus, and most of them didn't seem to have curb cuts. Sigh.

Just when I was trying to figure out how to handle the situation, Emma leaned over and whispered in my ear.

"I can be your person whenever there's a curb if you'd like." 

This was one of the kindest, most nonchalant offers of assistance I've ever received, and suddenly, the entire situation seemed about fifteen times less stressful. It's amazing how a little bit of compassion can make such a big difference. Every time we came across a curb, she just offered her arm.

The cadavers were really cool, too, and I'm so glad I went on the trip, but the most important lessons I learned from this experience didn't show up on my anatomy exam.

That night, I went back to my dorm room and sobbed into my pillow. I had held it together all day and I just couldn't anymore. It was yet another reality check that I am living in a world that wasn't built for people like me, a world where simple, everyday structures like stairs and cement curbs make my heart race and simple assurances like "it will be fine" from a physical therapist simply aren't enough.

I cried because I was frustrated, and embarrassed, and exhausted...
but also because there are people like Emma in the world
people who will be there when nobody else is
with a smile and a whisper:
I can be your person.