October 13th, 2018. I remember that day (ironically) clearer than I could ever imagine. Opening my eyes to welcome the morning light, I realized my head felt like an exploding firecracker. What? I had gotten plenty of sleep (hello - 8 hours! Which, for being a college senior was quite good, I had to say), I had been drinking plenty of water, had eaten a healthy meal the night before…why was my head exploding? The rest of the day was like walking through literal fog, the sharp pain surrounding my entire head and behind my eyes. In many ways, I remember feeling like the pain was comparable to someone lighting the nerves behind my eyes on fire. Weird, I know.
The next few weeks, months, and years consisted of doctor appointment after doctor appointment; multiple MRI and PET scans; opinions here, opinions there; take this substance or that for the pain. One thing I could remember clearer than anything else walking out of every office…no firm answer. A big fat question mark. So there I was, a college senior once excited about having the best year of my life, only to find that I spent the rest of every day in my dark bedroom. And as far as I knew, just about ANYTHING made the pain worse: brief walks, loud talking or loud noises, weird or strong smells, acupuncture or massages (you know, the things that are supposed to help), and bright lights (especially the cool modern lighting we all like? awful), just to name a few. Then the questions from my “friends” began to come…What the heck is wrong with you? Oh, so you don’t drink anymore? Wow, you’re literally NEVER around. The pain I felt was no longer just physical; rather, the emotional and psychological pain that surrounded missing class, celebrations, hang-outs, night-outs, and so much more left me numb and empty. I felt buried deep in the ground, each snide comment, question, or complaint about my “lack of further existence” burying me deeper…and deeper.
Almost four years later, I am in a fuzzy, not well-understood category of atypical migraineurs and chronic neck and back pain. While my life no longer purely consists of dark rooms and sleep, it does consist of numerous doctor’s appointments, diet change, minimal exercise, activity limitations, a rigid sleep schedule, medications, supplements, and more medications, and, well, frankly saying “no” to a host of things I hate saying “no” to. Yes, years of experience have formed new habits and some acceptance of what I no longer am able to do, and, in some ways, it has gotten easier to know my limits and triggers of pain. However, I still have many moments of wishing my life was different. I have a recent memory watching some friends play soccer (which, might I mention, was a huge part of my life before October 13th) and giving my best effort to hold back tears, tears of deep longing to be running and playing alongside them. Another recent memory was explaining to someone the cost of getting less than 9 hours of sleep a night, with her remarks consisting of “I don’t even know how you have time to be productive!”
Where does my motivation lie? How did I navigate through the darkest of seasons in pain? Frankly put, I really didn’t. I complained, I wept, I shook with fear, with endless questions running through my head without answers. “What if my life never improves? HOW can anyone live, truly LIVE like this? And the darkest question, can I really live like this anymore?”
There are a few things that helped me walk through the storm, maybe they can be of resource to you too. First, I started this dark season with friends, and not the right kind of friends. I now walk through this season with “I will be with you in the pain” friends, with “I love you no matter if you have to cancel on me three times in a row” friends, with friends that saw ME and wanted me as a friend regardless of my limitations. Second, I married someone in the midst of this season whom I told a thousand times that his life wouldn’t be fun with me as his partner, because all I would do is limit his dreams of adventure, thrill, and passion. Yet, no matter the red flags I offered, he chose and accepted me as I was, fully knowing that my pain journey may never change. Third, as difficult as it was, I learned to listen to my body and respect when the answer was “no.” However, perhaps more importantly, my body did not get the final say….I did. There were times I suffered through pain at a wedding, and by all means, I am happy I went. There were also times I knew attending an event would leave me bed-ridden for the next few days, so I politely declined, acknowledging my health as more important in the days to come. All that to say….it depends. I respected my body, and I respected my desires. Learning when to respect each one took time, trial and error, and patience. And yes, I still have times when I get it wrong. Finally, although I wish I could say it was the first thing I thought of when I entered the dark times, my faith was the last thing I turned to on the list. I was angry, cursing relentlessly at God, not knowing what to project my anger onto. Thankfully, He willingly took the burden and blame of my condition, and provided me with a sense of hope and peace that one day my body, whether during my lifetime or not, would be completely renewed. Am I still angry on my tough days? Absolutely. Do I take comfort in the temporary struggle of pain in my life? You bet…I couldn’t live without that hope.
SO. Here I am wanting to encourage you, to stand alongside you, to hear you. Wanting you to know what I wish I knew the morning of October 13th, 2018. You, precious human, are not alone. You don’t take up space, you are creating it - and I hope to create it with you. In a world that does not understand and a world where many do not care to understand, I hope you know there is great power in your voice and your unique pain experience. Trust me, I am still learning what my voice looks like, and how to not perceive my voice as a weakness. Please tell me, how can I support and BE with you? What do you so badly wish others would know but finding the voice to speak it feels shameful or like speaking to deaf ears? Also, I perfectly respect your wish to walk through the suffering without sharing your voice. I am with you in that pit too and respect that decision as much as the decision to share your voice.
Here, reader, is my promise to you: I don’t want to change any of your pain experience. Please. It’s so valuable, and deserves to be heard. I won’t pretend to “get it” either. Because the reality is I likely won’t…chronic pain looks different for everyone. Some days it’s manageable and hideable, some days you want to scream, and some days are just plain in between (gritting your teeth, maybe hidden with a smile). You are loved and worthy on your best and worst pain days, and if I am the only one that says it to you, I mean it very with every fiber of my being.