As you guys can tell, I haven't been posting much. I've been trying to soak up as much life as possible. There's so much to see and do and experience. Half the time it's just around my own neighborhood, but also, since I've completed the years of Chlorotoxin, I'm free to eat and drink whenever I want. I don't have to administer medicine every four hours, and it's freeing. It's been weird, and a daze and a miracle and a gift. To feel human again, and "normal".
It took a few weeks to absorb it. I kept withholding food and water because the treatment protocol had been ingrained into my system. To be able to drink water whenever I want, all day every day, has been the most exciting thing. It's not that the treatment protocol was so hard, necessarily, but to go without water for four to five hours a day when dehydration triggers seizures has certainly been a challenge over the past two years. It was debilitating. The only thing that I fear more than a seizure is a recurrence, just to put it in perspective.
Honestly, I'm literally terrified every second of every day. I'm able to shove it off and distract myself and breathe and align myself with gratitude, but that when the night falls, when silence creeps across the threshold, my mind gets louder and louder. The cracks in my brain, the hot spots, the unique headaches, start talking. They nasally laugh and tell me in their jackal voices that I can think I'm winning, but they know something I don't. They scoff and trip my walking mind. They tell me I'm dying, that everyone with this cancer dies.
So I don't sleep well. I read my books, my lids drag down. I turn off the lamp, I sigh that deep sigh, and I start to drift. And just between thoughts and fantasy, my body jerks and tenses. My pores prickle and sweat. My heart races, my head spins with delirium. I think of everything wrong that I've eaten, every supplement I forgot to take that day. I kick myself for not exercising, for not taking my care more seriously. Because the truth is that I'm not as diligent as I used to be. My diet is not on point, I am not the machine I once was. I want to live, but at the same time I want to LIVE.
I don't think I'm alone in the late night self loathing. I don't think I'm alone in the late night overthinking. I wish it was something I could turn off, and boy do I try, but it's in my psyche. It is who I was from the time I was in the womb. It's in my core, and as much as I meditate, as much has I repeat my mantra, "Thank you. Thank you. Thank you." It's not enough, this doubt, this overactive mind is on a cellular level.
So I live, and I ride my bike, and go for walks with my walking group. I garden, and laugh with friends, and play with our dog, and snuggle with my cat. I paint, and I continue to be awe of the fortune of my life, my health. But deep down, I continue to be scared. My body has memories of pain, a deep sadness, the fear of death, the throwback of when I was diagnosed, when I was awake and they were cutting into my brain. The flashbacks to the recovery, relearning how to read and use a knife. I feel great, I love my life, but I have post-traumatic stress that I live with, and can't seem to fix. And the fear is that I don't know if I ever will.
Thank you to the sweetheart who anonymously commented on the blog on the 4th of July weekend wishing us a wonderful holiday. It made me feel incredibly special. We went up to Friday Harbor our hometown to spend time with friends and family. It was magical. We even got out on a friend's boat to do some fishing and were surrounded by a pod of Orca whales. It is not lost on me that I was raised on a piece of heaven. Friday Harbor is a panacea to my soul.