In my mind, this memory is synonymous with ecstasy. I am weightless. I am in no pain. I am happy. The vision is silent, like I’m watching it through a looking glass. When I think about how I know it will all be fine, this is the memory my brain conjures for me, the one it plays behind my eyes. When I need to feel comforted and find peace, this is what my mind shows me.
This memory is an illusion. I know logically that it’s false. We didn’t know anyone with a trampoline on a beach when I was that young. I can’t remember whose hands I am holding because they aren’t real. There’s no sound because it never happened.
I fell asleep at a decent hour tonight and woke up because my leg hurt. Bone pain. It had been better for months, and now it’s back. It’s not a surprise. We have been screwing with my meds, I knew my pain would be worse for a while. It is prognostically meaningless. It just means I’m still living in this body and it still has mast cell disease.
And I think, well, if that memory can feel so real and never have happened… then maybe this isn’t happening either. Maybe I’ll wake up now to my real life with my functioning body and all the things I have lost.
Your mind has incredible agency when it comes to protecting you. It can shatter, solidify, suppress memories, rework them, whatever you need. It really is a marvel.
I think my mind built this memory from other true, good memories. The trampoline is on Yirrell Beach, near where my cousins lived when I was young. The dress I wear while I’m jumping is the one I wore in my first grade school picture. The sunlight, the salt I breathe in, the clear sky is every beautiful day I was ever grateful for. There’s no sound because there’s no need to talk. I have no worries, there is nothing I could need to know. As for who jumps with me, it could be anybody. It could any of the people I love and it would be an honor to hold their hands and celebrate together.
I think my mind made this after I got sick. I don’t remember when I started seeing it, but I know this last year I have seen it a lot. I think my mind made it so that when things seem very dark, I can remember this and feel better.
I think this is heaven. I think my mind is telling me that in many years, when I go to sleep and wake up healed and pain free, this is where I will be.
When I think too hard about this memory, I get this feeling in my chest that is reminiscent of nostalgia. It feels like I miss something, but how can I miss something that’s not real? And if I went now, I would miss everyone here. I never wanted to go.
I only ever wanted to be here with the people I love. Even if all of this is real. Even if the rhythm is really the throbbing in my bones and not a trampoline.
But I don’t think it is. I think at the end of all of this, I will open my eyes and be weightless under that clear sky. I think for now, I get to stay here with the people I love, and later, I will get to be free.
Alright, guys. I need to draw some boundaries.
I have always been an outsider. As a kid, I was a wicked nerd. I read Star Wars books and was bored in school so I wrote fantasy stories. I got moved to the smart class and people picked on me. I wore weird clothes and mostly ignored people.
Whether or not SM is cancer is, by far, the question I get asked the most. Because I get asked so often, I have done a lot of digging on this topic in the last few months. Here’s what I found.