School’s Out

I used to have an almost-perfect attendance record in school…but then RSD happened. Beginning in 8th grade, I’ve had an every-other-year sort of pattern with my school situation. Actually, that’s not even right. After missing half of my 8th grade year, it sort of became a toss-up as to whether or not I’d be in school during any given month. I think 9th grade was my last full year of school. As of today, I’m beginning another off-semester. Yep, I finally made my decision…my health is more important than school.

Now, some people may look at my situation and think (or say), “wow, you’re so lucky! You don’t have to worry about school.” Well, for a normal person, that may be the case. But truthfully, I wish I could go to school and worry about studying instead of pondering the possibilities of my medical future. I wish that the worst thing in my life was failing an exam. I wish I could further my education so I could graduate and have a real job. None of this is “lucky,” nor is it easy to say goodbye to another semester of education. But sometimes life brings us to the point where we have to buckle down and make the tough decisions, sacrificing our present comfort  for the hope of a better future.

I keep reminding myself that school will always be there. Whether I go back four months from now or four years from now, it will always be there. That’s not changing. But my health? Well, there is always the potential for things to get worse. As time goes on, the possibility of a spread increases while the idea of remission decreases. It’s more important to be proactive now and have an open schedule in case something happens.

The other thing that I have to remember is that I absolutely cannot compare myself to those around me. As the people I’ve grown up with graduate, get married, and have kids, I can’t allow myself to get down about the fact that I am still where I am. I have to continuously tell myself that we each have our own journey in life. Sure, I have friends who are younger than me and have already graduated, but they’ve had pretty simple, normal lives. They’ve never stepped foot in a hospital. They’ve never felt the defeat of doctors telling them they can’t help. They’ve never been locked in a psych ward or taken back to an operating room. They’ve had time and energy to devote to books and homework, while I’ve been fighting with all my strength to have the courage to stay alive. Trying to compare my story with theirs just doesn’t make sense.

So, now that I’m not in school…what do I do? Well, to be honest, I don’t know. My next appointment isn’t until mid-October. I could try doing some outpatient PT now, but most therapists don’t even know what RSD is, and I’ve already tried that route multiple times. I need to keep myself busy, so I think I’ll work on writing, crafting (I see quite a few new crutch covers in my future…), and doing some volunteer work. If anyone has suggestions for what to do with my time, let me know!

I’ll never understand why things happen the way they do. Why I continuously get my hopes up, only to have a twist in plans. All I can do is trust that one day, this will all make sense. And hey, my wallet will be a little less starved now that I’m not paying tuition for the semester! Looking on the bright side…;)

Who knows what the future may bring, but now I have an open calendar, ready to embrace whatever life throws my way.

 

Left Behind

It’s that season again…every time I open Facebook or check Instagram, there seems to be another “back to school” post or photo. I see pictures of people I’ve known since they were toddlers announcing the college they’re going to, showing the world dorm pics, and getting excited for new beginnings. I look longingly at orientation albums for new RA’s or other college leaders, imagining what it would be like if I were healthy enough to be part of the fun.

I’m starting my Senior year of college in just a few weeks. That itself is an accomplishment because of the crazy amount of school I’ve missed through the years. But when I see posts from fellow Seniors, especially the people I grew up with, a feeling of sadness pours over me. You see, while they are flaunting their upcoming internships, counting down to graduation, and becoming stars on their sports teams, I am sitting in my living room with barely anything to show of the past few years of my life.

When I started college, I had big dreams. I wanted to be an RA, become involved in different clubs and groups, and spend time working and volunteering at hospitals and other places. I hoped to find lots of friends, crossed my fingers that a special boyfriend would come into the picture, and imagined happy days spent in the company of others. I made goals to achieve high grades and study diligently. I thought college would finally be my respite from my hectic high school experience. But on the night of September 3, 2012, all those dreams sank to the bottom of the pond, along with my ability to walk on my own.

There are some days when I just can’t help but feel left behind in all the college/life experiences. I mean, here I am, entering my Senior year and living at home. Jobless. Boyfriendless. Not at all living out what I had imagined. I mean, I don’t want to throw some huge pity party, because trust me, I know things could be a lot worse. But I do think that it’s okay to allow myself to experience these feelings of loss and loneliness.

My resume might not include all sorts of crazy jobs, internships, and opportunities like my fellow Seniors. My hand may still be empty and ring-less, with crutches tagging along instead of a man. My cell phone may only feature texts from my mom and from the local grocery store advertising the latest sales. My heart and mind may contain more scars than memories. But somewhere deeper than grades and classes and careers lies a different sort of adventure.

I carry with me my own story. My crazy roller coaster of a life, complete with treatment centers, hospitals, and operating rooms. My tear-shedding journey to get to the point where I am now. So even though I’m nowhere near the point that I thought I’d be right now, I’m still here. I’m still breathing. I’ve made it this far, so I have confidence that I can keep going, reminding myself that the only person I need to be better than is the person I was yesterday. Who cares if I’m not as brilliant or as experienced as those around me? They probably didn’t have to leave school every other year, move to different states for treatment, or spend more time in physical therapy than with friends.

We each have our own story to tell and adventure to go on. So even though I may feel left behind at times, I have to remind myself that life’s not a race…it’s a journey.

 

Through My Eyes

For the first decade or so of my life, eyesight was something that I took for granted. Sure, I had to have glasses in fifth grade, but I thought they were pretty stylish and didn’t think much of it. After all, having wire rims on your face was the norm. I didn’t realize how valuable the sense of sight is until I was suddenly left without it.

Right before my freshman year of high school, I went in for a routine eye exam. I suspected that I might need a change of prescription before I was thrown into the fast-paced life of a high school student. My eye doctor, who had become friends with my family through the years, began his usual examination process. I read the charts, did a color vision test, and allowed him to drop the cold dilation drops into my eyes. Knowing what to expect, I walked out of the doctor that afternoon in a complete blur. It takes a few hours for the dilation effects to wear off so I planned for a quiet evening at home, anticipating the next morning when everything would become normal again.

When I woke up the next day, the blurriness had not changed. I could barely fumble my way down the stairs, grasping the banister as I told my mom about my discovery. She sort of brushed it off, thinking I might be overreacting, but after a few more days passed, she realized something was definitely wrong. This began a series of different doctors’ appointments, each time hearing something to the effect of, “stop faking,” or “just muddle through.” I was diagnosed as being legally blind and told that there wasn’t much hope for my future. People told me I’d never drive or be able to succeed in school with such low vision, but I was not willing to accept this.

After a long and difficult journey, I finally found a doctor who could help. Not only was she a sweet, caring doctor, she was also familiar with my other mysterious condition, RSD/CRPS. After finding tangible evidence of a problem in her exam, she concluded that this might be an attack of the RSD monster and prescribed daily vision therapy.

Eventually my hours of therapy paid off and I was able to see more clearly with the aid of bifocal lenses. Like the treatment for RSD in my limbs, where I had to move what hurt, I was forced to move and use my eyes, even when they didn’t seem to work. My doctor was pleased with the results and even wrote a paper about this great mystery.

Why do I say all this? Well, it’s because after my crazy journey (which still is not over), I have learned to not take anything, even eyesight, for granted. As I was forced to change my phone settings to the largest font today, I reminded myself that things could always be worse. I’ve come a long way since wearing two pairs of glasses on my first day of high school in an attempt to be able to see something and not run into walls. While I still wear bifocals and am far from having amazing vision, I am grateful for every sunset I get to experience, every book I am privileged to read, and every picture I get to look at. So, even though I won’t always know who you are until you’re close to my face and I have trouble reading sometimes, there is beauty in the fact that I can see.

Take some time to appreciate your eyes today. Watch something beautiful, read a story, capture a moment  on film. Just don’t let this gift of sight go to waste.

Side Effects of CRPS

Yesterday I was finally able to do my show-and-tell for Kinesiology, so I can now cross that off the to-do list! Hooray! I awkwardly went to the front of the classroom, holding a mug because that was the only thing I could think of to bring. I love tea and coffee, and the mug has a quote about baking, which is another love of mine. Perfect. I talked about those things for a minute and then people were allowed to ask questions. There was some silence so my Professor stepped in.

“Since this is a class about disabilities, and you have a disability (although that is just one small part of who you are, of course), could you please tell us about that and how your life has changed because of it?”he asked. I had sort of expected this, since my crutches/leg are obvious and I have had some conversations with my Professor about RSD/CRPS in the past few weeks. I gave my usual five second speech about what this pain disorder is, blank stares on everyone’s faces. Nobody had heard of it before and I’m sure that in my nervousness I didn’t do a great job of explaining.

But then my Professor wanted to know more. He wanted to know some ways in which having CRPS has caused my life to be different. I thought about it for a second but still didn’t give a great reply. I said something about having to adapt and become humble, asking for help more often. As I left the class later that night I thought about the question some more, knowing that there are more ways than just the few I listed.

So, here’s a list of some of my “Side Effects” of having CRPS:

• Creativity –> I’ve had to come up with numerous creative ways of getting around challenges, such as figuring out how to carry things while on crutches or learning how to put pants on while standing on one leg.
• Empathy –> Instead of simply seeing people with pain and thinking, “oh, sucks to be them,” I can now relate to them and somewhat understand what they are going through. {As a side note, I will never know exactly how someone else feels, because, after all…I’m not them! But I can try to understand their situation when I’m in a similar one}
• Friendships –> I have met so many amazing people along this journey. From hospital buddies to Ronald McDonald House families to people who also have CRPS, it’s been great to get to know wonderful people.
• Talking to Strangers –> Okay, this might not always be good (ya know, “stranger danger!”), but for the most part, it has been interesting to talk to random people who ask about what happened. True, sometimes it’s annoying or too invasive, but I’ve been able to have some great conversations while out shopping or sitting in a class.
• Spreading Awareness –> When I talk to people, I usually encourage them to look up RSD/CRPS so they can become informed about it. This has been especially good here at school since I have a lot of people going into the medical field in my classes, so I hope that some of them can take my story and learn for future patients. I’ve educated clueless doctors, family members, friends…and hopefully they’ll tell others, spreading more awareness about this horrific disorder.
• Experience –> Well, I can only help that this journey will make me a better Occupational Therapist one day. I’ve had plenty of experience as a patient so I am hoping that this enhances my abilities on the other side of things.
• Dependence on Others –> While I don’t particularly like this aspect, having RSD/CRPS has caused me to humble myself and ask for help. I’ve learned that I can’t live in isolation because people are very important, especially when you can’t do everything on your own.
• Strength –> They say that what doesn’t kill you makes you stronger. And while sometimes it makes you wish it would kill you, the strength that blossoms out of struggle is beautiful.
• Respect for my Body –> There was a time in my life when I hated everything about my body. I didn’t want to look at it and just wanted to hide from the world. Now I can truly appreciate the functions of my body when things are working properly, because I sure do miss them when they’re gone.

Well, I know there are a million other lessons learned and “side effects” of my RSD/CRPS, but I’ll leave it at that for now. I have lots of studying to get done before Spring Break finally starts on Thursday, so I’d better get on that!

Thanks for stopping by 🙂