Hi, my name is Caleb. I feel incredibly blessed to be here today, sharing my story and incredibly grateful for the healing in both my physical and mental wellbeing since my health struggles started. This past January, I underwent life-changing brain surgery.
Getting to that point wasn’t easy. For the longest time, doctors couldn’t pinpoint exactly what was wrong with me. While we searched for answers, I lived in a fog of confusion, intense dizziness, and constant pain. I experienced terrifying episodes where I couldn’t speak, and my arms and legs would go numb. Some days, the pain was so overwhelming I couldn’t even get out of bed.
In the midst of it all, I lost my dream job working with young adults with disabilities, helping them build job and life skills. But what hurt the most was feeling like I was losing time I’d never get back with my wife and my son, who at the time had just turned one.
Now, as he turns two, I’m filled with gratitude for this second chance to be completely present/myself with him, with my family, and with life.
I was diagnosed with meningitis, a rare autoimmune disorder called autoimmune encephalitis, and a significant brain defect called a Chiari I malformation. Essentially what this means is that the protective layer around my brain was swollen, then my body’s immune system was attacking my healthy brain cells, all while I had a brain defect that caused an increase in pressure to my brain/brain stem. This combination is incredibly rare and it caused such intense agony for me for close to a full year.
I was desperate for relief. The pain had pushed me to a breaking point mentally, emotionally, and physically. I couldn’t imagine having to live the rest of my life like that, especially knowing there was a chance that surgery might help. I knew I needed to get the surgery.
However, because of my autoimmune encephalitis, I was told I’d have to wait at least six more months. My immune system was far too fragile, and the risk was simply too great. The doctors feared that if we moved forward too soon, my body could launch another aggressive attack on my brain.
Those six months felt like six years. I underwent IV treatments that left me feeling like a stranger in my own body. My heart would race, sleep became nearly impossible, and I constantly felt drained and unwell. In an attempt to ease the pain, I tried occipital nerve block injections at the base of my skull. For a moment, they gave me a glimpse of relief, maybe a day at most, before the pain came surging back, just as fierce as before. It was constant, sharp, and all consuming. It felt as if the silence in my head had been stolen, replaced by this disruptive loud noise, demanding to be felt.
January 24th, 2025, the day of my surgery, is a date I’ll never forget. I had been through other procedures before, ones far less serious, and yet I’d felt more anxious for those than I did for this. This time was different. I knew in my heart that I needed this surgery. I believed it was the right choice, the only choice for my future, and I felt a deep sense of peace going into it.
But nothing could have prepared me for the first 48 hours afterward. The pain was beyond anything I had imagined. I was told recovery would take time, and that patience was essential.
Then, just seven days later, something changed. I was lying down, icing the back of my head, when I suddenly realized…there was silence. The constant, painful noise that had filled my head for so long was gone. For the first time in what felt like forever, my mind was quiet. I couldn’t hold back the tears. I wept, overwhelmed with gratitude, relief, and the hope that healing had finally begun.
Fast forward to today… my healing is still ongoing, but I truly have nothing to complain about. I can lift my son with ease, I’m no longer in constant pain, and each month I continue to feel stronger. I’m beyond grateful to be where I am now, and I know without a doubt that I wouldn’t have made it this far without the incredible support of my wife and family.
My wife has been, and continues to be, the rock holding our family together through this entire ordeal. I can’t imagine being in her position, and I hope she never has to go through anything like it again. Her strength has been nothing short of inspiring. My family has also been extremely supportive in every way possible—taking me to appointments, caring for my son when I couldn’t, and helping in countless other ways I could go on and on about.
Even now, as I continue my journey trying to pay for my brain surgery by selling some of my things online, my cousin has gone above and beyond—providing me with access to nearly his entire vintage Pokémon collection to help me reach my goals. The support system around me has been nothing short of amazing.
Many people have encouraged me to share my story, and honestly, I’m glad I did. I wouldn’t have made it through this journey alone, and if you’ve made it this far in reading—thank you. Writing this has been incredibly therapeutic. In many ways, I think I’ve tried to block out or avoid thinking about this past year. But revisiting what happened has helped me realize just how far I’ve come—and how much I have to be grateful for every single day.
Thank you.
-Caleb
