my feelings
Memory
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.
Boundaries
Alright, guys. I need to draw some boundaries.
Misfits
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.
Okay or better
A couple of years ago, I found out a piece of really disturbing information that I felt I should share with a good friend of mine. I called him and told him I needed to talk to him. He met up with me right away. I told him and afterward, he said, “All of this is weird, but I’m not gonna lie, I thought you were gonna tell me you were dying.” We laughed about it and I reassured him I wasn’t dying.
Rolling the hard six
The day before I went to Seattle, I saw my mast cell GI specialist. I was drinking coffee when I arrived. No matter what I put into my mouth, I get nauseous. It’s not as severe with liquids, but it still happens. I throw up a lot, and I know that it is due to my mast cell disease because I discovered that if I have taken IV Benadryl in the hour before eating that I don’t get nauseous. But I can’t take IV Benadryl before every meal. It’s not sustainable and I need to reserve this option as a rescue med.
Losing time
Stories about time travel have always fascinated me. I read my first one in grade school and was both intrigued and horrified by the implications. You could go back and fix mistakes, but sometimes those mistakes shape who you are. Everything you do matters. Change one thing and you change everything.
When I interview for jobs, people are always confused. “The dates on your resume are wrong,” is one I get a lot. They’re not. I really did work two full time jobs in grad school at the beginning of my illness. I just needed to do all these things at once so I sacrificed sleep and time off. It has taken its toll, but I don’t regret the decisions I made. I had to get through school and I had to support myself. Necessity is a powerful motivator.
Keep going
In February of 2007, I went to a party my friend was having. While there, I started talking to a woman I didn’t know. She told me about having walked the Breast Cancer 3-Day, in which you fundraise to support breast cancer research, prevention and treatment, and then walk 60 miles over 3 days. I told her I could never do anything like that and ate some cheese and crackers.
Unqualified success
Everyone knows about my very stressful week that resulted in huge doses of extra meds, including steroids, and multiple doses of epi to keep me safe. So by the time Thursday rolled around, I was seriously hurting, and not in a metaphorical way. I was literally hurting and exhausted and my skin hurt and my GI tract was bleeding and being generally obnoxious. I was hoping that I would make it through this wedding but I was really not sure it was going to happen.
Beautiful things I can’t have
I’m a Buffy fan girl. I’m sure this surprises no one. Strong characters, the supernatural and witty banter is basically a recipe to get me as a loyal fan. I know all the words to the sing along episode and have been compared to Willow more times than I can count.