Peter Pan on the inside
There are no fairies, pirates, no flying, no Tinkerbell, no one who stays young with you forever.
Jason watches his life, a movie through time, a beginning an end, growing old. He is an audience of one, frozen in time. The characters in this movie are only passing figures, moving in a world that is not his. There won’t be any real graduations or movement forward into a future gifted with human bonding that marks our lives with unseen progress. No marriage or children or independence. Just a perpetual desire to play and hold onto objects that remain timeless.
The future has played a trick on Jason, standing in front of him, but never inviting him in.
At a younger age his lack of development was masked by his actual age, plus a long list of secondary mental health issues. Bouncing off walls, sudden bursts of anger and aggression, confusion, and deep sadness. The Jason you were going to get changed by the hour.
His speech was marked by speech impediment that sounds like intentional baby talk but is authentic to who he is. He reverts to feline behavior when threatened, hissing and scratching. He has an unexplainable fear of dolls and the sound of bagpipes. He eats without restraint.
It has been a long, odd journey inside my head, exploring what it means to be who we are, if meaning can even be applied. There is a strong, almost cruel desire and need for us to fit in, it is survival based, I get it. But the more I twist myself to encourage, negotiate, manipulate…beg Jason to follow what will keep him safe, the more I understand that I am going against who he is and his right to be here. I know he needs to employ a second brain (someone who takes care of him) to exist in our reality, I have willingly accepted the role of being one of his cognitive prosthetics, but I am screwing it up. I am guided by fear, fear of what other people will do or say, fear of what he will be exposed to outside of the world we have created for him. The fear of what will happen to him after we are gone.
Jason moves through his routine with a pattern created by medication and daily support. He lives for the next moment while we plan his entire life. Hoping to cage his eternal youth and guide it in a world that does not forgive outsiders. Like Peter Pan he has an alternative world to exist in, his imagination is resilient and I keep it fertilized with humor and faith. It is his weapon and his armor.
This process of evolving guidance allows me to be flexible with my approach to Jasons care. I remember one of Jasons therapist telling me that love was not enough. They wanted to approach sending him to an institution in the states for a month. Even though this was a move to negotiate more funding, the idea of his fragile brain being carried to a foreign land triggered my brain into repetitive nightmares. Love may not be enough, but it is a very useful tool. There is an intuition that is incorporated into the connective structure of what we call love. It is part of what tells us we are not alone. It tells us we are part of something bigger than ourselves. I use my love for Jason to pull him into a larger community, it is not a trick, or some kind of soft over emotional state, it is an instrument for survival, his survival. We all need love, but not in the way we think we do.
I try to see the world through Jasons eyes. The everyday newness, the danger and excitement, the desire to be filled with something that will make me stop craving a sense of security. It is exhausting. I don’t feel a continuous sense of adventure. I’m not part of a larger community that understands me and I’m always a permanent fixture in a moving time line. I am fixed, solid, stationary, alone.
There are no fairies or pirates, no Tinkerbell, just a bit of love, fertilizing the connective tissue that ties us to each other.
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