I have been on this hamster wheel of surgeries, and treatments, and applications of treatments, and with that I've been isolated to our house for well over a few years. Obviously, I get out (I just walked four blocks to the grocery store, in fact), but it's always limited, always within time constraints of the chlorotoxin. I've been conditioned to fear seizures, and seizure triggers (heat, sun, noise, thirst, hunger, emotional stress, physical stress), leading me to micromanage my life to an exhausting minutia. I just want to live, and explore, and laugh, and for the first time in four and a half years, in Moab Utah, I felt normal. I felt completely happy, blissful. They got me. They told their stories that I knew in my bones. I felt it. We were the same.
I do a great job of recognizing the beauty in life. In every single moment I am tangibly grateful for each breath, each laugh. I have a lot of fun noticing the little details each day (the fresh breeze on a new soft leaf, the color of the sky when I peek out of our bedroom window) but I am not living the way I want to live. Not because I have cancer, but because I have so many constraints. Too many constraints. I can't not do the chlorotoxin every four hours. I can't not do my immunotherapy. But what I can do is surround myself with people who get me. People that support me within my limitations. I have a great group of friends, but now I have a tribe. A tribe that feels like family. It sucks, but when you get diagnosed with cancer, all of a sudden everything changes and it never goes back. I've had to distance myself from friends because they didn't understand my needs, both physically and emotionally. I've had friends distance themselves from me for their own reasons. It's a complicated life that we live, and for the first time, talking to my peers, looking in their eyes, I realized that I don't have to entertain my apologetic internal dialog about what I'm going through. Cancer patients don't just fight for their lives, they also shelter the people they love, about their fears, about the true state and reality of the struggle. They try to assimilate, to blend in. It's just easier for everyone, but it's exhausting. It's necessary because people can't really handle our burdens non-stop. It's too real. It's too honest. It's too close to death.
I feel like I've awakened. I feel like I found an oasis, just in time to replenish my body. I don't know how this trip, this experience, will change the trajectory of my life, but it will. It always does.
