A Letter to My Body About Our Life With Chronic Pain
I first want to thank you for waking me up every day at 4:00 a.m. to tell me it’s time to get up. It’s not a gentle nudge; it’s more of a “By the way, I’m still here. Please pay attention to me”
When you wake me up, it’s never pleasant. The charley horses I feel in my feet, along with the severe burning pain, aren’t the way someone would want to start their morning. I feel intense squeezing and stabbing pain as if someone were twisting my limbs in the wrong direction. Oh wait, that’s actually happening (without someone physically doing the task). There’s only so much I can handle that early in the morning, and I appreciate you pushing me to my limits. I’m sorry I should be more specific. Thank you, dystonia and complex regional pain syndrome (CRPS).
For many years, I have always asked you to please make the pain stop. I would wish for the pain to stop on every birthday, when I saw shooting stars or threw coins into a fountain. Those wishes haven’t come true. Why can’t I catch a break? Did I do something to upset you? All I want to do is is function daily without living in severe pain.
But now that I think about it, living in pain has taught me a lot about myself and how I can help others. You’ve taught me I can push myself to do anything I set my mind to do. I have dystonia, but I’m determined to relearn how to walk, and I won’t take no for an answer. I will do whatever it takes to succeed in relearning how to walk. Thank you for giving me this challenge. I enjoy taking on challenges and pushing myself to the point where I will succeed.
I listened to your advice, and that is the path I have taken. I realized I want to help children and families who are going through their own challenges. Without you, I wouldn’t be the person who I am today. I never want anyone to face the challenges I have, but that’s out of my control. All I can do is help others the best way I can. To me, social work was the right fit to help others.
I have learned to accept the pain you have given me, but it can be hard to handle at times. I’m willing to work with you, and I hope maybe you can work with me. Even though I am not a fan of you at times, I still love you deep down inside.
I’m willing to be a team with you. Thank you for the life lessons you have taught me and pushing me to the max. I know you are teaching me to be the best that I can be.
Sincerely Yours,
Tracy
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I'm an artist, disability advocate, speaker and a writer. I received my bachelor's of science, majoring in counseling with a minor in art therapy. I worked in the mental health field, primarily with high risk populations. I would use the creative arts to help my clients express how they were feeling. I pursued a master's degree in social work and changed career paths after becoming disabled. I sought to incorporate the creative arts to spread my message about disability advocacy. In 2021 I published my first book, "An Untethered Truth: A Medical Journey." An Untethered Truth is about my personal journey with devastating and life-threatening spinal conditions from birth, and how I learned through faith, hope and humor to advocate for myself through numerous operations, medical diagnoses, and misdiagnoses. I provide a guide for finding one's voice in a complicated medical world and finding support and resources for those living with disabilities.
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