What does strength look like? How does one fight? In the midst of this struggle I feel weak and lost, not strong and determined.
You asked about the wobble and I’m so glad you did. I’ve told countless doctors, specialists and friends and they all cling to the pain, offering remedies to kill it. But the physical pain, as horrible as it was, left months ago. Its departure seems to have left empty caverns in my brain that fill to bursting with fluid that sloshes around when I move. The electrical current in there sends sparks all over my head which fizz when I touch my face and hair. Thinking makes my eyes move unnaturally at times which makes my stomach drop and my nerves jitter.
There’s a channel that runs from my right shoulder, up through my neck to a spot inside my right hemisphere – this is the point where the ‘feeling’ began. It was like a tiny bug was burrowing in there for about a week before the crushing headaches began. This sent me to bed for weeks with near daily trips to the hospital or clinic where doctors would stare blankly at me and say ‘migraine’. One doctor connected me to monitors and injected me with propofol to ‘put me out’ for an hour to ‘reset my brain’, another ordered twice daily injections of torridol and gravol which zombified me terribly. Tests of all varieties, including CT scan, MRI and blood work, all came back clear which ultimately led the doctors to prescribe “therapy” and ask about my mental state. One Dr told me to ‘enjoy it’ which was the end of the medical road for me.
I came to my parents house with the boys for a week after seeing a neurologist who took 20 minutes to diagnose ‘migraine’ and tell me to quintuple the amytriptaline I was already taking. It was only meant to be a week, just a little time to give Adam a much needed break from the pressure and stress of being a single parent and caretaker to me. As a last ditch effort to save my brain my mom took me to see her chiropractor. I was so ‘gone’ by that point that I felt invisible and floaty. I couldn’t talk to people and walked as if pushing through lava. When they gave me an intake form I wanted to just write ‘help me’ but instead dutifully circled my whole head as the ‘problem area’ and checked the little boxes like it was yet another fruitless request for understanding and support.
With NUCCA treatment for ‘axis sublaxation’ over 6 weeks I’ve had a total of 6 days where I bordered on feeling well. The clarity is like seeing again after being blind. In those moments I begin to think of the future and let gratitude for the miracle wash over me. When the wobbly brain comes back it’s like being in the dark again. So scary and hopeless. I scratch around for clues to what I did wrong to break the spell, wondering when I’ll see again.
So I ask what strength looks like? People keep saying I’m strong but inside it feels like deep crumbling, loss and failure. It feels like powerlessness and rage, resignation and depression. I know of that thread you spoke of, I feel it whispering to me that this death will at last be followed by rebirth. It is the only internal comfort I have. It saves me from the self hatred that threatens to blame me for this whole fucking mess. It’s the living through the transition that is so unbearable and chaotic.
I keep thinking of butterflies. Does the caterpillar cry when it disintegrates into cellular mush? Does it hurt? Does it lament the loss of its hordes of tiny legs? Does it struggle against the transition or release itself with some inate faith that soon it will fly?
This is happening. It is real and it is now and I am alone inside trying to survive with as much grace as possible.
Thank you for letting me in and offering me a safe place to land in all my fractured vulnerability. Please know that the tiny thread is strong. It will pull me through.