Tuesday, January 5, 2016

Challenges, Pain, Life Plans...and Polka Dotted Socks, Mind Control, and Reflections!

I have not forgotten this blog, and I will never forget all of you. I really appreciate all of the advice I received regarding graduation commencement accommodations - you guys were so helpful and so encouraging! I've arranged a meeting in February with the events coordinator at my school, and I will definitely go back and reread all of those comments before we meet. :)

It's been a difficult chapter of life for me and sometimes I feel that it's hard for me to take a moment to be vulnerable here because I need to be strong and focused and push my feelings aside. But I think that needs to change; when life gets tough, I need to remember to turn here again, to write and release and share.

Academically, this was probably my most difficult semester yet, even though my grades were good. I had a lot of demanding, science-heavy courses and a few good friends taking them alongside me. My friends have helped me through so many challenging times while I've been at school, and at times I've felt bad asking them for a hand to manage a curb, or I've felt as if I've slowed them down because of my CP. But this semester especially, I've come to realize that these relationships were reciprocal all along. I won't share the details here because they are part of my friends' stories, but I now understand, truly, that support can come in so many different forms, whether it be a 3 AM phone call or a hand on the sidewalk.

As I near my last semester of undergraduate college, I'm grappling with what's next in my journey. My neuroscience major combined with my life experiences as a person with CP have revealed to me that I would like to pursue a career in medicine, likely as a PA. I'm still working on the details of that and exploring my options, but that's another post for another day.

The heaviest burden that I am dealing with right now is the realization that this junction of my life is probably my last chance to easily seek out medical interventions to improve my physical functioning as much as I can. That is, if I need some sort of surgery, it would be easiest for me to have it done sooner rather than later, before I dive headlong into building a career for myself, attending graduate school, and working. Thinking about surgery isn't my idea of fun, and I get around well enough that I don't think it's a necessity at this point...but if it could make my life easier long-term, then I definitely want to consider it.

The pain in my hip is something that I live with every day, and I've lived with it for the past eight years - ever since I fractured my femur and had to get pins in it. The initial pain of that break almost defies words...but I've tried to capture it below - this is something that I drafted a few weeks ago and wasn't sure if I was going to share it because it's kind of heavy.

I do not remember much about that pain. I remember that when it was there, it was everything, all-encompassing, excruciating. Somebody was screaming, begging for it to be over. Help me. Help me. I am at the mercy of my body.

How bad is it on a scale of one to ten? Nine, I say. I am not sure if it is a ten, the worst pain I have ever felt, but it is the worst pain that I can remember. 

My vision goes spotty. Somewhere, a voice tells me that it will be over soon. The next thing I remember is nothingness, the sudden absence of feeling, and it is beautiful.

When I am discharged from the hospital a few days later, they give me lots of pain medication, something stronger than morphine, and they instruct me to take it every few hours for the next few weeks. 

I only take the meds for one day. There is pain after that, pain that keeps me awake at night, sharp like a knife in my leg, but it's never Nine again. I'm afraid that if I take the medicine, Nine will lurk behind it, waiting for me, and I figure that at least this way, I can have power over it. This way, it can't blindside me. Still, the sixes and sevens give my mom nightmares. Sometimes I try to tell her that they're fours and fives, but she knows me too well, and it's as if she needs to shoulder my burden so badly that she takes it upon herself in her dreams. It's as if I will hurt less if we hurt together. 

The pain that I live with today isn't bad at all in comparison (not even close to Nine...depending on the day, I'd say it's probably a 2 or a 3), but it's a sharp and constant reminder of what I've been through. I feel it whenever I bear weight on my leg, so every step brings pain, and I feel it whenever I lie on my side. I've gotten pretty good at ignoring it, though; I know that the pain is there, but it's almost as though my brain doesn't acknowledge that it is pain anymore. If I knew for sure that removing the pins in my leg would get rid of that pain, I would do it in an instant, but there's a part of me that's afraid that another surgery would cancel out all the progress I've made, or that the pain would still be there afterward.

So my life hasn't been easy lately, and difficult decisions lie ahead, but nobody ever said life would be easy. :) And I know this is a heavy post, so I should mention that there have been many, many bright spots as well, and I'll be sure to write about these soon! I've spent many hours having fun with my friends from college, reunited with my friends from home, bought some polka-dotted socks, did some coloring in an adult coloring book that I received for Christmas, snuggled my dogs, taught a bunch of fifth-graders about neuroscience by allowing them to control my muscles with their mind (so cool!! definitely a topic for a future post! They LOVED it), and read a bunch of books FOR FUN (I'm currently reading 11 22 63 by Stephen King)...and this Friday, I'm planning on spending the day with my mom's newest group of students (also fifth-graders!). Even when things are difficult, there is definitely a lot to smile about. :)