Tuesday, August 29, 2017

7 Weeks Post-SDR: ELATION OVER STAIRS & Progress Through Struggles

There are no words that could come close to capturing the feeling you get when you finally, finally, finally accomplish something that you've been working on for as long as you can remember.

A few days ago, I stood at the bottom of the staircase, took a deep breath, and walked up. With no hands. Alternating steps. 

When I got to the top, I turned around. Took another deep breath. And walked down the same way. 

Pre-SDR, if I concentrated hard, I could sometimes do one step up without a railing, and one step down. They were shaky steps, often thwarted by thinking too hard or not thinking hard enough. Sometimes I'd lead with one foot, and the other foot wouldn't follow quickly enough, and I'd fall. This happened often enough that independently navigating curbs has never been an option for me.

But now? Maybe when I come across a curb in public, I won't have to feel the pounding of my heart in my chest. Maybe I won't have to worry about whether I'm safe, because I'll know that I am. This staircase is so much more than a staircase for me. It's independence, and safety, and freedom.

It was never just a staircase. 

These past seven weeks have been incredibly difficult at times. At times I've wanted to post here, but I just couldn't, because I didn't know how to put words to my feelings...didn't want to put words to my feelings, because I was afraid they would hurt all the more if I gave them power by typing them onto a page. I was frustrated that my legs weren't working in a way that was familiar to me, afraid of dealing with the possibility of failing myself and my family, and feeling crushed under the pressure of it all.

But things are looking up. The pace of my day-to-day life has picked up again, with an online graduate school program and tutoring in the evenings and an intense regimen of PT. I do four days per week of formal physical therapy that lasts for about an hour and twenty minutes, one day per week of personal training, and I usually go swimming for at least one day as well. On top of that, I do stretching and exercising at home. I just finished 25 minutes on the treadmill (definitely had to pep-talk myself through those last five minutes!!!), and after this I'm going to go stretch my hamstrings. (I think I'm developing an addiction to hamstring stretching!!! More on that later) It's a lot, for sure, but I'm motivated and encouraged by my progress. :)

My next goal is to work on building my confidence with curbs out in public. Physically, they are so much easier than before surgery, but my mind still remembers how difficult they were, and I've fallen flat on my face so many times that it's a difficult fear to transcend. A lot of this recovery experience feels like that: there's a disconnect between how my legs feel now, and how my body remembers them.

That's it for now, but I'd like to write here more often. It's cathartic to share my experiences with you guys, and my hope is that maybe someday it will help somebody else....so maybe I'll be back here tomorrow with some more to share. :) Thanks for stopping by!

Tuesday, August 15, 2017

Day 3 Post-SDR: The Hardest Monday Of My Life (ft. vomit, unwelcome roommates of multiple species, & lots and lots of tears)

I'm not a morning person and I'm not a Monday person, so I think it's fair to say I'm biased against Monday mornings to begin with, but the particular one that I am about to relay to you was the Monday-est Monday morning I've ever had. 

Let me paint a picture for you: it's 7am, 3 hours after the pain management doctor was bent over my epidural pump and apologizing because I'm not able to receive the blood-thinning "better" pain medications.

I am simultaneously throwing up, trying to breathe, and trying NOT to breathe so I don't aspirate into my lungs.

Panic washes over me as I realize that somehow, I'm unable to breathe through my nose. My body feels as if it's warring with itself, and I'm stuck in the middle of it all, somehow separate and yet unable to escape. As my stomach reflexively retches, forcing air out, my lungs reflexively fight to get air in.

My mom is trying to help me sit up. With her other hand she presses the call button over and over and over and over again. A nurse answers through the speaker on the remote, asking if we are okay. My mom doesn't need to reply because whatever horrific sound effects the poor nurse hears on her end sends them running to my room. Later, I wondered if the entire nurse's station heard me throwing up, but in that moment, I couldn't have cared less.

When my stomach has finally calmed itself down (with the help of some anti-nausea meds), those nurses leave.

Someone else enters.

This is the part of the story where my mom completely loses it. 

"Did you see that??!" she asks, staring at the door to my hospital room.

"See what?" I reply, still preoccupied by the pink basin in my lap.

"SOMETHING JUST CRAWLED UNDER THE DOOR!" she says. I can tell she's seriously considering leaping onto a chair.

"Like a bug, or...?"

"YES, it was HUGE...really really huge and I don't know where it went but - OH THERE IT IS, I SEE IT, IT'S DEFINITELY A COCKROACH AND IT'S GOING INTO THE BATHROOM, IT'S -" (at this moment, she runs over to the bathroom door and slams it shut, which we both know will do nothing because Mr. Roach is the perfect size between terrifyingly huge and yet terrifyingly small enough to fit under the gap beneath the door.)

She turns to me and exhales: "OKAY...okay. Okay. It's in the bathroom. Do you think we can use the call button for this kind of emergency too???" (contemplative pause) "....You are so lucky to be in that bed right now."

And then we just start to laugh. Because after the kind of morning we'd just had - 4am meetings with the pain management team followed by I-can't-breathe throwing up - a cockroach as a roommate is just about the last thing we needed.

Not too long after, though, Mr. Roach decides on his own to leave the bathroom and crawl out of the room. Miracles do happen, people. #SDRChangesLives but #SoDoCockroachesFinallyLeavingYourRoom.


After that fiasco, the neuro team came in to remove my catheters. I was pretty worried about having no more epidural to control my pain, especially considering how much pain I had experienced earlier in the morning, but they assured me that the oral pain medications would be just as effective, and they were right. :)

I got extra pain meds then, too, because my next visitor was my PT. Honestly, I don't remember much at all about her visit, and maybe it's because of those pain meds. I remember that the room spun when I sat up on the edge of the bed. She had her arms around me to support my back as I sat, but it definitely wasn't the most comfortable experience. Then she had me wrap my arms around her shoulders as she pulled me to standing. My legs felt like jelly, completely incapable of supporting my weight, and as she helped me take a few shuffling steps toward my wheelchair, I was struck by the very strange sensation that my legs were not my own. In some ways, they were heavy, and still pretty numb from the residual epidural medications in my system, but at the same time, they no longer resisted me. They didn't fight back anymore.

After I was settled in my wheelchair, we went for a quick trip around the hospital so that I could get used to sitting up for longer, and then it was back to bed. At this point, I really wanted to get cleaned up and change out of my hospital gown into some Real Clothes (and now that my catheters were out, I was officially allowed to!).

My amazing and incredibly resourceful mom had a plan to accomplish this. She stopped by the nurses station and asked for several of the largest diapers they had on hand. They got a good laugh out of this, and were particularly intrigued when she explained that she needed those diapers in order to give me a "shower." (I wouldn't be allowed a true shower until Day 10 post-op! *shudder*)

Back in my room, she positioned the diapers under my head and used them to absorb water as she and my nurse shampooed and conditioned my hair. They sponge-bathed the rest of me and then I changed into my SDR t-shirt and pajama shorts, and my mom did my hair (side ponytail, 80's style! Not exactly my favorite but hey, my options were limited, and Laura Ingalls Braids were completely out of the question!). It wasn't the most luxurious shower I've ever had, but I was in no position to be picky, and it felt amazing to be clean!

By now, it was Monday afternoon, so I believed that the Monday morning horrors were finally behind me.

I was mistaken. Never underestimate the mood-wrecking power of a single sentence spoken over a hospital intercom.

"This is a reminder that all fire alarms are going to be undergoing testing in the next hour." 

I began to sob. 

Yes, I am twenty-three years old and I am crying over a fire alarm. Before you judge, let me explain.

As a person with CP, fire alarms are already a source of immeasurable anxiety for me. If you're reading this and you also have CP, you'll know what I mean. If you're reading this and you don't have CP, then I ask you to imagine what it's like for you when a fire alarm goes off. You probably startle, and your body tenses up for a moment, and then you get on with your day. But my brain has a hard time turning off that reflex; I startle hard, and for at least several minutes afterward, my legs feel "stuck," and painfully stiff.

And in the first few days after SDR, my already-heightened startle reflex was more powerful than ever before. A knock on the door, a ringing cell phone, and even an unexpected light touch on my arm or leg produced waves of excruciating spasms that arched my back and rocked my body. These spasms were so intense, so sudden and unpleasant that my mom referred to them as earthquakes.

I already feared unannounced whispers and taps on the shoulder, having experienced the awful pain of the earthquakes they created. But as I lay in that bed, white-knuckled hands death-gripping the bedrails, I imagined the kind of torture that a fire alarm might induce.

I could not stop the tears. Could hardly form a sentence. Was terrified of the pain that might come for me just minutes before I was expected to get out of bed for my next PT session.

But my amazing nurse came in to reassure me that the alarm would be quiet. I wouldn't even be able to hear it from my room, she said.

So there you go. Lesson of the Day: Don't Cry Over False Fire Alarms. I wiped my eyes, took a deep breath, and repeated four words in my head over and over again. You can do this. You can do this. You can do this. You can do this. 

When my PT arrived a few minutes later to help me out of bed and bring me to the PT gym, I think it was still pretty obvious by my reddened eyes that I had fallen to pieces...but if she noticed, she was too polite to say so.

At PT, we started with simple exercises on the table, like bridges and side leg lifts...except they weren't so simple anymore! I couldn't do a bridge at all, and my side leg lifts consisted of the PT pretty much lifting up my leg for me! It was kind of a strange feeling to struggle so much with exercises that have been pretty "easy" for me my whole life, and to realize that so much of my "strength" was actually spasticity.

And then we did sit-to-stands. They were definitely painful on my back (a sharp, burning soreness), and yet I was amazed at how much easier it was to put weight through my legs. Pre-SDR, I could feel my knees resist me whenever I tried to straighten them, as if tight elastic bands were attached to my muscles, trying to force them bent again. Now, I was able to straighten them with ease, and not only would they extend further than before, but they'd stay that way.

As the "grand finale" of my PT session, I did a few laps around the gym using a walker. It wasn't the most graceful walking I've ever done, but the steps felt completely different than any I'd ever taken before. My legs still felt "borrowed," as if they didn't quite belong to me yet...but my steps felt so light! I have a video of my walking on my phone, and I can hear the tears in my mom's voice as she notices my straight knees. I think it would have been a happy tears moment for me, too, if I hadn't been concentrating so hard! :)

In the same PT session, I saw the family that had stopped by my room on Sunday while I was asleep...it was nice to meet them now that I was actually conscious (and to meet their little girl, too! She gave me a big smile and watched me with wide, curious eyes!).

Later that evening, when I was back in my room, my neurosurgeon came by to check on me. He was almost giddy over the range-of-motion in my ankles, and per my mom's request, I showed him and his fellow a few seconds of the clip of me walking in PT. He was really happy with that - and with my SDR t-shirt. ;)

Then we had to switch rooms. The hospital room I'd been given was actually meant for seizure monitoring, and another patient had come in who needed it. It was great for those first few days post-surgery, because it was private and the shades could be pulled down to turn the room *completely* dark, even in broad daylight...so it was amazing for sleeping! But now that I was starting to feel better, I actually didn't mind the room switch.

Except that as they wheeled my bed into my new room, I heard and smelled my roommates before I saw them.

My new room! Here's the view from my bed.
They were eating chicken tenders. Chicken. Tenders. You know, the very same food that I had eaten for brunch a couple days before, and the mere thought of it made me feel sick to my stomach. I glanced toward them, trying to force a smile and a wave for the sake of politeness. A little girl was sitting in the hospital bed with her mom, watching Despicable Me on volume level 106. The sheer amount of food on their trays would have been impressive if it hadn't made me feel so ill...mountains of chicken tenders, French fries, and ketchup. The room smelled like a McDonald's, and the mom was one of those Very Loud Chewers, so it was impossible for me to forget what they were eating.

It also turns out that her mom was a Very Loud Laugher. And a Very Loud Talker. A Very Loud Person. And every time she'd laugh or shout or drop something on the floor, the spasms in my back would return with a vengeance.

Very Loud Mom and her daughter were supposed to be discharged hours prior, but according to the nurses, they were taking their time leaving. My mom and I listened to them read over the discharge paperwork, and they were laughing about how they could just pretend that they had no one to pick them up and then they could stay here for as long as they wanted. The horror! Given the choice between sleeping in the hallway or staying in the room with spasm-inducing Very Loud Mom and her heaping plates of nauseating fried food, I'd choose the hallway ten times over.
The puzzle when it was all finished! No missing pieces. :,)

Once again, though...miracles do happen. They actually did leave, and a volunteer guy came by to give me a puzzle to work on. I LOVE puzzles...I thanked him profusely and told him he made my day. He said I made his too. It was a Hallmark Moment, you guys. :,)

Our new roommates arrived in the middle of the night...a mom, a dad, and twin newborn boys. I'll save that story for my last hospital stay post!

So there's Monday: cockroaches and vomiting and spasms...fire alarm tears and happy tears and chicken-tender-eating roommates! 

Thank you to all of you who have reached out with words of encouragement and support, and thank you to all who continue to follow my journey! For those who have reached out with concerns, I want to assure you that my last post was written in good spirits...I promise. I mean everything I said: I'm not planning to stop writing anytime soon, and I'm going to continue relaying my experiences with honesty and openness. This post just took a lot longer than usual to write because I needed to do this Monday justice!

I'm thinking that my next post will be another "current day" update, so stay tuned for that very soon! But I definitely have a lot more to write about the rest of my hospital stay, PT sessions in St. Louis, and the (crazy!) plane ride home.

Until next time! xo

Thursday, August 3, 2017

Dragons, New Legs, and Complicated Feelings: A Letter to YOU

Before I continue with my hospital stay posts, I want to talk to you about something.

I want to talk to you about Complicated Feelings. My purpose in writing this blog is to help you feel less alone...to help you feel uplifted and understood and loved. I never want you to come to my blog and leave feeling alienated or less than or hurt.

When I write about my SDR experiences, I'm writing from a perspective that is deeply personal to me. I know that others with CP don't necessarily feel the same way about spasticity or cerebral palsy, and that's 100% okay. For me, spasticity did feel like a dragon, so Dr. Park's metaphor (i.e., SDR = slaying a dragon) resonates. For me, spasticity was wholly negative and separate from CP. It slowed me down and caused me a great deal of pain. And now that my spasticity is gone?? My body feels completely different, and it's a disorienting and extremely difficult yet extremely joyful experience for me...something that I need to write about. I do feel free - as if a literal weight has been lifted, not from my shoulders but from my legs.

You might feel differently. Maybe for you, spasticity is simply a part of having CP. Maybe for you, it doesn't cause suffering. Maybe for you, spasticity represents security, something you feel you need to get around. Maybe for you, it's not a dragon. I acknowledge you. I see you. I want you know that even though I write from my own perspective about my "new legs" and my new sense of freedom, I am not implying that you are not free.

For me, so far, SDR has been the right decision. For you (if you are reading this as another person with CP), it might not be. And that's okay.

And even though I've had SDR, I still have CP. That's not something I'd ever want to take away. As I've noted on this blog in the past, CP is a part of who I am, and I have grown to love that about myself. My goal in having this surgery is simply to move easier...to have less pain...to improve physically so that I can live a healthier life going forward.

I will continue to document my experiences honestly, sharing my triumphs and hardships as they come - I feel like I owe that to you, and I owe that to myself, too. But I also want you to know that I am here to talk if you ever come away from my blog feeling worse than you did when you arrived. I don't hear from the vast majority of my readers on a regular basis, so I don't know how you're feeling. I can only hope and pray that my blog is a source of comfort and solidarity for you. But if it isn't? Please...send me an email, or write me a comment.

Yes, I do feel as though my dragon has been slayed. I do feel freer, as if I have new legs. I am continuing to work hard in PT, and I am excited to make progress. For me, SDR seems like it was the right choice...the right path for me as I strive to be the healthiest, happiest version of myself that I can be. But for you? Maybe it's not. Maybe you embrace your spasticity in the same way that you embrace CP. And that's awesome.

Whichever path you choose...whether or not spasticity is a dragon for you, whether or not SDR represents freedom for you, just know that you are enough. We are enough. And we are in this together. <3