Every time I leave the house, I’m reminded of the simple fact that people will see you but never really know you. And unfortunately that never stops them from thinking that they do. My physical therapist asked me just this week, “what has it been like for you living with CRPS?” I sighed and laughed lightly..because really, …where does one begin? To say it has been hard would be cruel actually. I haven’t had my limbs severed, I don’t need a wheelchair or assistance to move around, visibly and for all intensive purposes, I look fine. In fact, my doctor told me in the beginning that it would have been easier if I’d just broken my arm. I didn’t understand then. I couldn’t understand. But, I do now.
CRPS -(Complex Regional Pain Syndrome)- has changed my life. In increments, monumentally and in ways I didn’t see coming. There is very little that I do that I’m not reminded that there is something wrong. And feeling constantly what no one else will ever see, now that actually messes with you. I’ve played down my feelings so much that they then threaten to overwhelm me. I hate being asked how I’m doing. I’m sorry, but it’s tiring. And I have to evaluate every time I’m asked that question just how I’m going to answer. Because there are the posers of course who will always be more curious than concerned. With them, in the beginning I tried to keep it as brief as possible. Knowing already that they weren’t even sincere in asking. I saved the fullness of it for those who I knew actually cared.
And it backfired. Probably just because people will be people. No matter how good their intentions are, as bad as their intentions are. I learnt that telling the unconcerned that I was fine only meant that what they spread around was incorrect. And explaining it all to those who cared just seemed to tire and worry them more than could be helped. I try now to answer everyone as best that I can. Because if they’re gonna talk anyway, they might as well speak the truth. And there is no cure for CRPS. I can’t spend my life going to doctors, doing surgery or on drug trials. I don’t have the time, energy or resources for such a thing. Life is uncertain and precious. I can only try to give it my best one step at a time.
That being said, I already know that it won’t be easy. My nerves misfire every day. The slightest things amplify pain. I can’t jiggle my baby niece in my arms for long before I’m tired. But I’ll be okay. I’m still here. I may feel beat up but I am not beaten. And when you see me and I look fine, remember you won’t know what I’m feeling. I just hope that you’ll hear what I’m saying. Because, I am more than what you see.