One of my biggest pet peeves is being "accident prone". Oh my gosh, it totally rubs me the wrong way. Even though I meet this comment with a forced smile and usually crack a joke, it hurts me a lot. I don't completely know why. After all, people get called “accident prone” every day. Some things in life are not preventable and I think this is the most challenging part to come to terms with. I think a huge part of why I can't stand the phrase so much lies in my medical history and all of the other obstacles I have had to overcome during my life to get to where I am today. No one wants to get hurt or be in pain, but for some, it seems nearly unavoidable.
With severe dystonia, CRPS, and joint hypermobility syndrome, merely sleeping can cause a disaster. All it takes is rolling over in my sleep to sublux my joints. A small whiff of smoke after walking past a person smoking on my way to class can send me gasping for air because of asthma. Standing up from my chair can send me crashing to the ground from dysautonomia and syncope. Living life for two or three months at a time sends me to the hospital for a week to ten day admission.
Now, I could be running away from life all scared and decide to live in a cave in the middle of nowhere (and some days, that seems like the easiest road to take), but I'm not. I choose to stay and play the game of life, even if my game looks a little different or has some pretty crazy detours. After all, these detours have to get me somewhere at the end of the day. Life never goes the way anyone expects it to, but the key to winning is finding a way to accomplish your goals even if it is not the “traditional” way. So please, if you happen to witness or hear about one of these incidents, please don't judge me or call me accident prone. Just remember that I am trying to hold my body together in a body that is forever fighting itself and even though I may make it look easy, it really isn’t.
Recently, the RSD/CRPS community lost another one of its most active members. It was sudden, shocking, and serves as a reminder to everyone with RSD/CRPS, that our days are numbered.
Well, I thought waiting a couple of days would help me to process and find the words to convey the points I'd like to make. However, it is just the opposite. The more I think about it, the more I am at a loss for words. So here it goes....
Max, I didn't know you super well, but I know that you were an amazing young man, who bravely served our country until you were seriously injured. Your injury caused RSD/CRPS, an incurable neurological disorder that causes excruciating pain, as well as several other conditions as a result. RSD/CRPS is not regarded as a terminal condition, however, it's effects on the body and complications from treatments, threaten to take the innocent lives of many warriors.
Tragically, you left the earthly world on August 11, 2015, after fighting so hard and courageously for many years. Thanks for inspiring us to fight for the cure. Please watch over myself and the rest of the RSD/CRPS community. Help us to find the cure from up there and we will finish your work down here.
While I am extremely heavyhearted, I am taking the most comfort in knowing that you are not suffering anymore; pain free at last. Fly high, warrior! We will see you again someday.
December 9th, 1988-August 11th, 2015
This is why we need a cure. So many complications result from RSD/CRPS and their treatments that are severe enough to threaten or alter life. I am speaking from personal experience when I say this. In addition, the suicide rates for CRPS and the conditions it causes are astronomical. It is no wonder that they are known as the "Suicide Disease". Between suicide and medical complications, RSD/CRPS is extremely dangerous. This is why the world needs to know what these seven letters mean to so many people.
When someone tells me I inspire them, I appreciate that there is something about me that they would like to emulate. However, just because I go to college, have a job, and practice martial arts and skiing, with several chronic illnesses doesn't make me someone to be admired. I get slightly uncomfortable. For many, I feel like the reason that they are inspired by me is because of my chronic illnesses. Everyone is inspiring for something, but please, don't hold me to a higher level just because of my chronic illnesses. It is not something that I want to be known for. I am just a typical girl living in atypical circumstances and I attempt to do the normal things that everyone else does. Sometimes I have to make modifications, but I'll try to do everything as normal as possible.