Bones and I sat in the living room practicing songs for church. It was a lovely afternoon and we sang easily and joyfully together. I felt calm and happy. The tunes were simple and uplifting.
“Wherever you go, God is with you;
Wherever you go, God is there.
Wherever you go, whatever you do,
You are in God’s care.”
As we finished, I got hit with pain in my eye, about a 7 out of 10, enough to make me arch me my back and wince in pain but I could stay seated. Bones noticed the pain and asked if I wanted ice. She retrieved a bag of frozen peas and brought it to me. “Why does this keep happening? “ I whined.
The pain was such that I could no longer hold still. The knife in my eye pierced and I tried to relieve the pressure by smashing my face against the side of the piano beside me, writhing in my chair as I did so. Soon I was alternating between the floor and the chair. Finally, on my hands and knees, face pressed to the floor pinning the bag of peas. My breathing was heavy. Eventually I lifted up, aware that the pain had stopped, but that my eye was swollen, tearing and beginning to twitch. Through half sobs I said, “I can’t keep doing this every day.”
After a few seconds to gather myself, I stood and walked to the kitchen to put the peas back in the freezer. Just as I turned the corner to come back into the living room a hundred knives hit my eye all at once. The pain was a full 10 immediately. My knees buckled and I just caught myself on the doorway. After ice, an energy drink is my next line of defense against these headaches (I didn’t yet have oxygen). I’m not sure I could even really see or think through the pain at this point, but I swung around and reached for the fridge. I managed to grab one and started ripping the packaging open. Seeing the crazy amount of pain I was in, Bones called out to me to take one of my shots. That seemed more reasonable, so I dropped the bottle and pivoted for my bag where I keep the shots. I managed to grab the shot case, but I could hardly even flip the case open before I hit the ground in pain.
I can’t possibly describe this pain to you . It was the most searingly awful thing I have ever felt. Crawling across the floor, clawing at my face, smashing my head into the cold, hard ground, anything to relieve the pressure and the sharp, piercing knife that was cutting my eye out.
I fumbled with the shot package, in my pain I couldn’t break the seal on the dose to load the shot. Finally I handed it to Bones. She got the top off the dose and I was able to get the syringe loaded. Although it turns out when you are in the worst pain of your life, remembering which direction is counter clockwise is nearly impossible. I administered the shot to the back of my left arm. I can usually feel the medicine move through my body. There is a warm sensation as it travels. In the past it has felt almost calming. Each part of my body relaxing as it passes, with a metallic taste in my mouth right before it hits the place I need it most. This time its effect was more violent, like the medicine had to wage a war against the demon that possessed me as it battled to regain control of my body. I felt the warm sensation, but rather than calm, my muscles shuttered and heaved as the medicine passed. Finally the metallic taste came followed by convulsions of relief until I collapsed into sobs on the floor.
Exhausted, I dragged myself over to Bones and laid my head on her lap. She stroked my hair for a bit. It was over.
That was just one headache, albeit the worst one. I’ve been doing this nearly every day, multiple times a day for 10 months. My body is tired, my soul is tired. The constant fear of the next attack has left me anxious and depressed. My own kind of PTSD, except the trauma keeps repeating itself. I have tried everything to make these go away. A slew of medications, chiropractic, accupuncture, massage, reiki, therapy, prayer, meditation, dietary changes, mushrooms, cbd in so many forms, supplements, oxygen, caffeine, exercise, rest, you name it. I’ve been checked and examined every which way. Each new doctor or practitioner or well meaning friend is peddling some kind of hope that if I just try *this* my pain will go away. Some things have helped. Oxygen is the closest thing to a miracle I’ve ever felt, taking the pain of the headache away within minutes of breathing it in. But I have to be home near my oxygen tank when it hits, and it doesn’t stop them from coming, just relieves each individual attack. A new once monthly injection is giving much longer pain free periods, but it’s not over yet.
I don’t know how to make sense of that much pain, especially given the irony of what we were singing only seconds before this happened. How was I in God’s care in that experience? I felt nothing but utterly abandoned. And yet, as I look back over the last 10 months, I have been anything but alone.
In one desperate moment, deep in feelings of despair and aloneness, I cried aloud while driving to market, “Doesn’t anyone hear me screaming?!” The tears flew, only drying up just as I pulled up to unload for market. That evening, my therapist, who I’ve never seen at that market, walked by and spoke to me for a few minutes. Later, a friend from church was buying some beans from me when a headache hit. She took over the stand till the pain passed and ended up spending a couple hours sitting with me. When it came time to pack up, another headache hit. This time I had to take an injection to stop it, which left me feeling nauseated and confused. As I debated the safety of driving myself home, two more friends showed up, packed up my stand, and drove me home. Three visits, three answers to my prayer, three affirmations that I am not, and never have been alone.
All along the way, when I pay attention, I can see that I am being carried and loved by those around me. Bones who has been living her vows of in sickness and in health with grace and steadiness. My kids who are so tuned in to their mother’s suffering, providing comfort and distraction and hope. My parents whose willingness to drop anything to care for me or the kids reminds me daily that I do not have to walk this alone. The friends who have reached out with love, a listening ear or a helping hand around the farm. My church and my pastor for the meals and help weeding and the way they hold me in prayer. My nurse practitioner who has been so caring and thorough in trying to help me fight this awful condition and all the side effects the meds bring. All the folks in my cluster headache support group that I’ve never met in person, but are always ready to provide an encouraging word of solidarity online.
As I write this, the pain behind my right eye is beginning to build. I’ve slipped on my oxygen mask and I’m at peace with it. Really. Being a cluster head sucks, but I’m not afraid anymore. I’ve got the tools I need to cope with it and I am surrounded by an abundance of love. Even if the worst one happens again, I know that it will end and that I am not alone. Where ever I go I am in God’s care, and God’s face looks an awful lot like the folks around me.