THE WORDS THAT HAUNT ME AS SOMEONE LIVING WITH CHRONIC PAIN
When I was 15, I had to get waist-down reconstructive surgery. The left leg surgery went incredibly well, but the right leg surgery was disastrous. The epidural didn’t work and so, when I was woken up, I started screaming from the pain. I screamed for three days, waking up screaming each time until they put me under again. I don’t remember this. My body blocked it out. All I remember is being in the hospital for a long time and being extremely uncomfortable, looking at my mom who had been crying and whispering to her “I can’t do this anymore.” I don’t even remember why I said that or why she had been crying or even what day that was. All I remember is that is what I said, feeling exhausted and empty with the nurses looking on with concern.
A few months after my surgeries, I was trying to get ready for church but was in so much pain that I started crying. We made it to church a bit late and felt extremely grumpy and a bit angry at everyone because they all seemed so happy and were not in any pain. “Sometimes,” my mom said to me after I tried to avoid church members coming up to talk to me, “you just have to fake it ‘til you make it.”
Now, almost nine years later, those words haunt me. For six years after that, I would keep all I struggled with as close to me and as silent as possible. I would never tell anyone how bad my pain and extreme suffering was. All they knew was that I stopped coming to gatherings, no longer made it to church, no longer came out of my house, and then I no longer came out of my bedroom. I stopped eating, though they weren’t aware because of how incredibly painful it was to eat, let alone the pain I got from brushing my teeth. My favorite activities were a distant memory and I could no longer remember not having any pain. Pain was not only my life, but it was my best friend and closest companion. It never left me alone, never left my side, and it was with me through it all. No pain medication would be able to relieve it or get it to release its interest in me.
I won’t go into any more detail about my pain, except to say it was all over and it was everything. Every type of pain you have experienced — stinging, burning, aching and all-encompassing — I felt it second by second. But this is not a story about pain; it is about how I fought back and how, despite it, I found freedom.
A few years after I graduated, I started getting this therapy that rewired my nerves to not read pain when it wasn’t there. It gave me almost two months of no pain. For the first time, I posted and told the world I was free from this horrid pain. They learned that all those times they passed me in the halls or chatted with me at parties, I was battling my pain to do these things. But I was free, so my lips were loosened. And then it came back and no matter the treatment, it wouldn’t go away. I kept being asked how my pain was decreased and so I found myself sticking to my honest code and hinting at how bad it was getting again. Finally, it got so bad I could no longer hold back. I had to let people know how miserable I was. I couldn’t contain it in my little body any longer. And, I had never felt so free.
I realized that all the times I bit my lip and laughed off my pain, every time I made jokes about it or deflected the reason as to why I dropped my spoon during a fancy dinner — I could no longer grip it because of the pain of holding it — I was hurting myself even more. Not being open about my struggle made people think I was fine and they treated me that way. In the long run, it caused me even more pain because I didn’t have the help I needed and craved.
It was so incredibly hard, at first, to express how I was really feeling. After a decade of keeping it all in, I had to literally retrain myself to not hold back. I had to let go of that pain and anger at my family for not knowing or helping me because it was my fault, not theirs, that they didn’t see what I was going through. It was my fault for hiding it from them and becoming so good at keeping my pain-free mask on at all times.
I am not saying I can no longer handle my pain because I have become weak, or I can now handle it all with ease and enthusiasm. I daresay it will never be one or the other. I have really hard days and I have days I don’t notice it as much because I have gotten used to the pain level I am at. But no matter how bad my pain is now, it will never be as bad as before because now, I have people on my side. I have people who know exactly what I am feeling and fighting; they are cheering me on and helping every way they can. I now have an army of warriors at my side who will not let me down, despite the battles that keep coming.
Now, I am no longer fighting a war on my own. I have allies who are a thousand times bigger than the little girl who sobbed herself to sleep all alone and feeling forgotten. I have friends and family who have my back. And no matter how dark my nights get, I know I will always have people in the world who can hand me a candle of hope. Freedom abounds when you don’t hide your struggles like a dirty secret.
The truth will set you free.