It's easy to miss the life you had before you were sick, it's also easy to miss the life you dreamed of having, especially as that dream gets further and further away. So you build new dreams, dreams based in acceptance of your body, your heart and your mind.
In the summer of 2013 I was recovering from my second craniotomy, I had just mended fences with a man I loved deeply, and was in that overwhelming position of feeling like you wish you were better than you are. My mind felt like my body looked capable. I didn't feel like I was a sick person. I saw myself putting myself in a box, that invisible disability box that makes statements like "but you look fine" seem less absurd. I woke up early one morning at my parents’ house and thought I would take advantage of their premium cable and watch a movie — escape into someone else's world for a moment. I watched the movie "Extremely Loud and Incredibly Close," based on the book by the same name. I didn't realize what a visceral reaction I would have to a movie about loss, a search for answers and a quest to heal. I was overcome. Every time the movie became too much for me I would look to my cellphone — I had gotten dressed that day and I didn't want to waste it — I had hoped to see my dear friends, I hoped to do something normal. I wanted to enjoy myself. Get outside, live the Colorado life, breathe the fresh air.
The phone didn't ring. No new messages.
I began and then continued sobbing as I watched the story unfold on the screen. I felt myself moving along with the young protagonist on the screen. I am him, he is me. We are searching, endlessly.
Roughly an hour after the movie ended I sat frozen in my chair and waiting. I wasn’t sure what I was waiting for, but I was waiting. My mom came down stairs and saw the stricken look on my face. What’s wrong? I didn’t want to admit the real answer, no one had asked me to join them. My messages seemed to be fading into the abyss. No one could hear me begging to be seen, no one could hear me wishing to be well. So I told her, “I just watched a sad movie.”
“Well, why would you do that?!” she asked, the exasperation clear in her face.
“I just did, OK, Mom?!” I told her. I said that it doesn’t matter if it was sad, it was a beautiful and valuable story. I was indignant though and she could hear it in me, just as I could hear it in myself. She knew it was more than just a sad movie. It was a loss I wasn’t yet ready to name. The loss of my physical strength, of my muscular body that I had spent years perfecting and building. Strong body, strong mind, I always told myself.
Finally my phone pinged. “I was out mountain biking, I’m sorry I missed you.”
This is a good time to make note of the fact that even at my best I was not a mountain biker, nor do I any longer have a desire to try mountain biking. The prospect of strapping myself to something on wheels and flying up and down mountains seems like a terrible choice. That being said, I felt immediately left out.
I felt a surge of jealousy that the one person I was dying to be with was doing things I could not do. I was jealous of his health, I was jealous of his friend’s health. I was jealous of their complete obliviousness to chronic and massively disabling pain. It was a strange moment of conflict in me. Did I really want the people I love to stop doing the things they love simply because I can’t? Not really. Did I want them to ask me to do it so I would have the option to say no? Maybe, but not really, that would just make me cringe at the fact that I would always be the one naming my invisible disability. Did I want them to move on from me because I was unable to participate fully? For sure, I did not. Did I want to participate? Sort of. My mind was a mess of emotions and feelings of being left out of a life I’d never known I always wanted to live. A life of adventure, a life of outdoorsy experience, a life full of friends and festive fellowship.
I was always a homebody, and I am even more so now.
Since that summer I have had five additional surgeries, four of which were craniotomies. I have had spinal taps and lumbar drains and my abilities have deteriorated further. I often catch myself in that moment of conflict, wishing people’s dreams would be to sit on the sofa with me contemplating their existence and watching Netflix. Not because that is the most fun option, but because it is the least painful. Other times I catch myself pushing harder than I should to keep up. Not admitting to myself or others when I am too tired to go on. I find myself fixating on the capability of others as it relates to my sense of lack in myself.
Then, I stop myself.
I feel myself think about lack. It is not lack. I remember that movie that hit me so hard that summer, of the journey of discovery that emerged from a deep and scarring pain. I think about how what I have lost in ability in my illness, I have gained in perspective and it drives me forward in my journey. It is not lack. I don’t lack anything. I stop thinking of what I can’t do and devote my energy to discovering what I can do. I may be left out of a great many things but I am not gone. I haven’t ceased to live. I will live differently.
I will live differently, and I hope that that will be my adventure. And when you all take a break from your expeditions through the world, I hope you will join me for something we both can do.