Saturday, October 18, 2014

Is That Your Final Answer?

Remember when that TV show Who Wants to be a Millionaire was popular? I always imagined what I would do if I were on that show, considering I'm the most indecisive person in the whole world other than my mother. Just the question itself, asking if that's the answer I'm ready to commit to, makes me squirm.

But for the past few months, I've been the one asking that question to everyone. My doctors, my specialists, my therapists, basically anyone who has been part of this whole injury and recovery shebang.

Because there is still a lot we don't know about them, and each one is different and complicated in it's own way, it's been hard to get an exact answer. That's why I was weak and felt like I couldn't completely feel things in my legs but was walking for some months, supposedly in the clear for paralysis the next month, in a neck brace on the weekend for a month or two, and then suddenly not walking and being diagnosed with partial paralysis. Whew.

My doctors and therapists have had me in so much testing the last couple of months to try and see if we can pinpoint where these problems are coming from. For a while I was having a hard time deciding if I'm a lab rat or a human.

FYI: your dignity kinda goes out the window the second you are diagnosed with serious injuries
So here's what the final (I THINK) prognosis is. I have a Traumatic Brain Injury, which we already knew. I also have a C6/C7 spinal cord injury (it's up by my neck), which we knew about, but Neurologist #2 didn't think it was a big deal. However, it is a big deal, and since no one paid attention to it at the beginning of all of this (except my amazing manual PT, Shannon, who KNEW something wasn't right), the damage just kept getting worse. On impact, there was a lot of damage to the ligaments on my spinal cord, which was another thing my PT could tell just by the instability in my neck and back. There's also damage to some layer of something (connective membranes, maybe? it's all greek to me) in my spinal cord. This damage is what's causing the signals from my feet to not make it all the way to my brain, which is why the tingling feeling in my feet and ankles has turned into paralysis/no feeling at all. We didn't know this until a couple weeks ago when I had the test that checks the speed of the signals.

So I'm just chilin' over here like...


So that's about as much information as we can get in a situation like this. Moving forward, all we can do is strengthen all of my muscles, work on my proprioception (knowing where to plant my feet/walk while keeping my balance, etc.), get me as close to "normal" as possible, and wait and see if it improves over time since I'm so young.

I am working really hard on learning how to shift my weight from leg to leg even though I can't feel it. We have been using some Wii games and the Wii Fit Board. It's hard as hell, but it's pretty fun! We are going to try putting me in some AFOs (ankle-foot orthosis, which are just braces on my lower legs/ankles/feet) to help with the walking. I can bend my knees since I have some feeling there, but it's hard for me to move my foot near my ankle and pick up the foot so my toes don't drag since I can't feel my feet. So basically these braces will hopefully help me walk "normally", which is great!

Since I'm doing rehab in Jackson permanently now, I've been staying with my awesome, loving, incredibly supportive cousins. They make me feel right at home and take such good care of me. I am such a lucky girl to have such a great, close-knit extended family! They mean the world to me.

I am constantly in awe of how much these doctors and therapists know about brain and spinal cord injuries, and all of the advancements doctors have made to improve the lives of those who have these types of injuries.  

The most frustrating thing is that I am constantly being told that a big problem is that I didn't get the right treatment from the hospital and the 3 different neurologists I saw at the very beginning. It just kept being brushed off as a small concussion, and no one ever looked into my spinal cord.

Neurologist #1 told me that I needed to go back to my life so my brain could re-learn to adjust, and at the time, I was okay with that because I would crawl all the way to Starkville just to be with my daycare kids again. I thought I could do it because that's what he told me to do, and he's a doctor so I listened. Neurologist #2 told me paralysis was not possible, and here I am now with paralysis in my feet.

Here's the worst part: THIS HAPPENS TO TBI PATIENTS ALL THE TIME!! Every day. Every year.

As common as TBIs are, they are NOT talked about often enough. Not in the general public and definitely not in hospitals and medical offices. 1.7 MILLION people in the US are diagnosed with a TBI every year. We have to talk about these "invisible injuries" more. We have to keep ourselves informed and not be so quick to judge just because there might be more to it than what we can see.

And we must be SMART, RESPONSIBLE DRIVERS! So many of my rehab friends are there because someone was being a stupid driver. Put down your phones and stop at the damn red light, people! It's maybe 60 seconds that you have to sit there and wait. At the end of this year, I will have given up 525,949 minutes of my life simply because the woman who hit me couldn't give up 1 minute. It's selfish, and it's not worth it.

But in light of all of this, I sure have learned a lot. When you have an injury that changes your daily life and keeps you from doing things like going out and partying with your friends, you sure do learn a lot about the people in your life. All of them love being there when life is a rainbow, but the ones worth keeping are the ones who stick around and refuse to leave when the hurricane hits.

The craziest part is that sometimes the people you think will stick around are actually the ones who aren't there at all.

And finally, life is absolutely awful and relentless sometimes. It really is. But somehow, even when you are so sure that the light at the end of the tunnel has burned out, there will be moments that come along and are so wonderful that the dark tunnel seems worth it.

My recent wonderful moments:

Being there when this sweet new baby boy cousin of mine made his grand entrance into our wild family. We love you Liam, so very much!

Getting to spend so much time being the older cousin to these beautiful kids who make me feel like a rockstar with my walker.

Finally getting to go on my 21st birthday trip to New York to see Derek Jeter (my favorite person in THE WORLD, in case you don't know me in real life and aren't aware of my Yankees obsession) play at Yankee Stadium during his last season. Thanks to my parents for working so hard to make my dreams come true despite the setbacks my wreck caused. And a big thanks to Mr. Captain for a great 20 years. I tip my hat to ya.

And finally, getting to spend lots of time with the coolest parents in the world, who have altered their life once again to take care of me during all of this rehab. It's not every 21 year old's dream to move back in with her parents and not be able to drive herself anywhere, but since I had to do it, I'm glad it's with these two. 

Even in the messiest of times, life is still good. Keep on keepin' on, sweet friends.

"I do not at all understand the mystery of grace -- only that it meets us where we are but does not leave us where it found us." -Anne Lamott

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