My Life in Words: (Ashley’s Spoonie Story)

According to the Merriam-Webster dictionary, the word “chronic” is defined as: continuing or occurring again and again for a long time, always present or encountered.  The word “pain” is simply defined as: mild to severe discomfort and suffering.  If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose “normal” has become something most people cannot comprehend: mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.

Chronic Pain is Life Changing

As is the case with a lot of chronic pain warriors, my life didn’t start out this way.  There was once a time when my life didn’t involve seeing my doctors more often than my friends; when pharmacy visits didn’t happen every other day; when I didn’t have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didn’t spend my nights tossing and turning because of the insomnia; when I didn’t have to open a medication bottle multiple times a day.

There was a time when when I didn’t have to research for hours on end just to understand what happens beneath my own skin; when I didn’t have to sit and rest after a shower; when I didn’t have to try to explain things about my body to other people that even I don’t understand fully; and a time when I wasn’t intimately familiar with the definition of “chronic pain” as a result of life has become every minute of every day.

Everything changed on of March 21st, 2011. It happened in the blink of an eye.  It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our school’s softball field. I don’t remember much of that incident, except for three distinct things: my coach’s voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasn’t stopped in 8 years, 5 months, and 25 days.

My Chronic Pain Journey

Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey.  There have been countless moments where I can’t even seem to even hold myself up anymore, falling to the floor and weeping for the soul that’s exhausted and depleted, and wondering if this is a life worth even living.  I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me “I don’t believe you’re in that much pain.” I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didn’t see the way I collapsed in the hallway; she didn’t  hear my sobs outside of her pretentiously white-walled office; she didn’t see my family pick me up off the ground, all the while telling me repeatedly “we believe you.”

Living chronically ill isn’t for the weak, it has more hard moments that you would ever be able to imagine.  However, there are also some moments that have made this journey that I’ve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life.  One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldn’t even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, “I am going to love you one day, give me some time.”  I realized that just because our bodies feel like a prison, that doesn’t mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.

Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but it’s an understood normal for us chronic pain warriors.  We wake up every morning to endure another day, with a strength we didn’t know was possible. But it’s so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.