Both Things Are True

There will soon be Presymptomatic trials for genetic ALS and FTD- C9 specifically. I will test in order to participate if I’m positive. I have always known- if I test positive, I’ll feel like I’m drowning. If I test negative, I’ll feel like I’m drowning. People have been furious with me over my decision to not know until I’m ready. I have withstood that- and more- because I know myself better than anyone on this earth. I am only interested in knowing for a specific actionable reason- to put drugs in my body that could alter disease progression before I experience symptoms.

There will probably be risks. A drug could affect fertility. It could cause gastrointestinal distress.  It could damage the liver or other organs. A drug that slows disease could hasten onset in someone at risk. It’s so scary. But I don’t want to get sick- I will do anything not to get sick. It’s a lot to think about. Especially with how other parts of my body are working- my heart, my autonomic nervous system, my psyche. It may be a sacrifice, and it may be worth it. Or it may not be. 

I had a dream recently where my fingers on one hand got harder and harder to move- like they were tangled up with each other, twisting into spirals until my hand became a snarling creature- then my mom seemed to whisper in my ear “don’t worry- it’s just arthritis.” That’s what the doctor said when her own hand shriveled up and vibrated with fasciculations. But by that point, she couldn’t walk- hadn’t seen the sun for two months. Doing things with my hands- feeling my muscles move, strain, burn- I think- is every move I make a risk? Is my craft a risk? Singing, talking, breathing. How far can I stretch a string before it snaps? 

A Tiktok creator living with Early-Onset Alzheimer’s that I liked died recently with MAID. I think about death every day. Sometimes it’s scary, sometimes it’s profound, sometimes it’s glamorous, hedonistic and very Lana Del Rey. I try to decorate time with some thought, insight, musing, like tinsel or confetti, or authenticity or specificity or whimsy- hoping that that way days feel a little longer. And that I don’t feel as much like I’m trying to pull myself out of suffering like quicksand, like I’m spending my youth yearning and not winning,

My career as an artist has not been what I dreamed it would be yet. I get close- I do. I keep getting close, and then I drop down to earth with a thud, I cry, and then I do it again. And again. How many ,ore times will I be able to do it? I’ve gone a little over four years without being part of a project that’s been fulfilling. All of these opportunities have been entirely out of my control. I have a bad taste in my mouth from some of the extremely dated and shallow feedback about my craft, my appearance and my energy that I’ve recieved from decision makers in places of power. I want to create my own opportunities, but I feel I don’t have the experience, the executive function, the connections, the money- shouldn’t all money go to research funding anyway? 

I am going to try EMDR to address my C-PTSD. From growing up with a mother who always threatened to leave, who seemed like she could just wither away- a childhood fear that sent me into panic, my worst fear that came true. My mistrust of people- people I would have fought for who did not want to fight for me, even when their actions had convinced me we’d be connected all our lives. I’m paranoid that other people I adore will leave me too. I’m reactive. I spiral, but I can see that this is my brain finding patterns, trying to make sense of the world. I can check back in and compare my intense feelings with what is “real”, because as far as I’m aware, my frontal lobe still works. It does, right? Even if I’m positive, and my brain is actually shrinking 1/100th of a centimeter a month, or I’m losing weight and my metabolism is shifting, my body changing insidiously before an onslaught of chaos.

And still, I love life. I feel deeply- I’m glad I do. I’m ecstatic with my gratitude for the depth of experience I get to relish- a rare, precious gift I inherited from my Mom. It is so painful- but it is sublime and profound.

I may not get to go to Amsterdam for the Symposium this year, but I get to go to ISFTD as part of a program I was accepted into. Maybe more exciting- a conference where the concept, the intention to treat FTD medically with urgency- is at the forefront. And to me that is most moving of all- yes, even more than a free ride to the Netherlands. 

This summer, my best friends helped me put some film material on tape. I had a dirty martini at Chateau Marmont. I went to LACMA with my Dad. I took pictures of Juniper trees in Hollywood on film. I reconnected with an old friend over tea in a rose garden. I went to the grove a lot of times. Poppy, my Mom’s sweet beloved rat-dog, sat on my lap every chance she got, staring at me with her huge cloudy eyes and maybe seeing a glimpse of Judy.

There is more life to live!