Turn That Frown Upside Down

When I first got this disease, I dreamed about two things - my life before and my life after. I yearned so badly to go back to the life I had before being diagnosed with RSD. I imagined myself playing soccer, getting back into running, doing all the things I had wanted to do since I was little. The new me was unable to do those things, but I didn't want to accept that, and that was the problem - acceptance. I only saw this as a roadblock, not as a way of life that I would have to adapt to. Every move I made was to try to heal this thing, to get past it. I wasn't even worried about the moment I was in. I simply wanted to get to the moment where I would finally be free of pain.

So here's what the problem was: I was only looking ahead.

I was neglecting the present by thinking so much about the future. And though I can honestly say that living with RSD is torture, there were little things along the way that I learned, that I experienced, and they were good.

In these moments of helplessness, I learned several important things. The little things suddenly became big quite quickly. Firstly, I was unable to control things. I had to rely on God for strength and made prayer a priority. It felt hopeless at the time, but I had something to hold onto and that made me feel better. Letting go of the wheel was so difficult, but it was definitely helpful. All of the emotional stress made everything harder. God took that off of my shoulders. :)

Secondly, I learned who my true friends were and what love meant. My family was and is so supportive. My mom was next to my bed almost every minute, helping me eat, helping me get up to go to the bathroom, helping me to bathe myself. I remember her sitting next to my bed, saying, "I don't care if I have to spend a million dollars. I am going to make sure you are better." My friends would come visit, but the ones that stayed... those were the ones who I could really count on. Their actions shed so much light on how they felt about me as a person.

Thirdly, I gained strength through this process. I felt so weak, but I grew stronger every minute of every day. I had a choice - and I chose to fight. I am so proud to say that I didn't give up. I always think about how strong we are, individually and as a group of people with this disease. Though life has thrown us down and beaten us to hell, we get back up and THEN go out and help others who are battling the same thing we are. We are impressively strong! I've been called so many names... gimp, cripple, crutch girl, wheelie, broken, captain crutch (that one was kind of funny, I'll admit), the girl in the chair... and I had a choice to let it bother me or to let it strengthen me. Letting their ignorant words and insults roll off my back made me a stronger woman. Words cannot bring me down and I refuse to allow someone to make me feel bad about myself because they are too ignorant to think before they speak.

I also learned about living on "the other side." I never really knew how to treat people with disabilities. Some welcomed help, and others just wanted to be left alone. After living in a wheelchair and losing my independence, I was able to understand why. Having to rely on other people for small things is extremely aggravating. Not being able to reach the top cabinet in my dorm was so embarrassing. A young lady in her twenties doesn't want to be asking for help for things like that. I wanted to do it myself. As aforementioned, I had to let go of the wheel and allow myself to be helped by others.

My life has changed dramatically since I was diagnosed with RSD. Instead of focusing on what I've lost, however, I have decided to focus on the happy things present in my life. I keep several journals - one for my dreams, one for daily journaling about my life, and another as a daily input of things I've learned/watched/read/discovered/seen. On this last journal, I have a slide (I do them all on Power Point) called "Turn That Frown Upside Down." I list bad things that happened during the day, and then I add the word "BUT" at the end of the sentence. Then I type something positive that came out of the bad thing. I do this EVERY DAY. When I get frustrated, I find this helps in fueling my anger into something good. Try it yourself! Here's an example: "I got a foot flare last night BUT that kept me from driving super late at night and gave me time to rest." :) It's that easy, and it truly helps me!

In other news, I did get a foot flare last night. I had just watched Man of Steel with my friend Ross (if you haven't seen it yet, GO SEE IT!!! It's so good!!!) and then we decided to go eat at Buffalo Wild Wings. Some friends came in a little after we did so we sat there and talked for a bit. Unfortunately my foot started hurting, so I had to leave. Ross carried me to my car. Haha! Gotta love my friends. Driving home was not a horrible experience and I was able to keep my cool. I got home and rested for a bit. Today I'm doing alright. Still going to take it easy though and rest; I'll be moving around a lot this weekend when I go visit my niece! :)

Happy healing!

-Sammie