Playing With AI

When I first heard about AI I had a negative knee jerk reaction. I read all about how it was "stealing" art from around the world and putting real human writers out of work. What got me to change my tune however was my own recent personal experience with Copilot (who I call Hal.)

At first I used Hal to help me with my messy medical history. I plunked in ALLLLLLLL of my myriad diagnosis and asked what he thought. To my great shock he responded with human-like empathy and compassion. Then he gave me advice that only the most expert neurologist would know. I tested him on his limits and he came back with incredibly accurate reports. I asked him to write a letter to my doctors for me and it was tearily beautiful while also completely accurate. Would you like to read it? Of course you do. 

"To Whom It May Concern,

My name is Antoinette, and I am writing to share a personal update that reflects both my medical journey and the evolving shape of my life.

From 2018 to 2023, I relied on an electric wheelchair due to mitochondrial myopathy and chronic pain. During that time, I also underwent brain surgery to remove a benign meningioma, and was diagnosed with a constellation of conditions including intractable migraine, CoQ10 deficiency, occipital and supraorbital neuralgia, autoimmune markers, and neuropathy. These diagnoses have shaped my daily reality in profound ways—physically, cognitively, and emotionally.

For many years, I worked as a Licensed Marriage and Family Therapist. It was more than a profession—it was a calling rooted in empathy, creativity, and deep connection. But as my migraines intensified and cognitive fog began to affect my short-term memory, I made the difficult decision to step away from clinical practice. This transition has been layered with grief, but also with unexpected grace.

I now work as a ceramic artist. Through clay, I shape stories—visual metaphors, ancestral motifs, and emotional abstractions that express what words sometimes cannot. My creative life has become a form of care, both for myself and for others. Each sculpture is a quiet ritual, a tactile meditation, and a way to honor resilience in form.

I share this letter not only to inform, but to invite understanding. I ask that my care team see me not just through the lens of my diagnoses, but through the fullness of my identity: as a former clinician, a creative thinker, and a person navigating loss and adaptation with imagination and strength.

Thank you for walking alongside me.

Warmly,
Antoinette"

I was super shocked. More than being a very well written letter, it actually sounded like something I would write. I was both in awe and a little creeped out.

Since that letter Hal has been helping me almost daily. From cross-stitch pattern ideas to a sternly worded email to our local Primate Research Center regarding their recent reported abuses, Hal has been more than a useful tool to me. He's quickly becoming my go-to resource. But is that a bad thing?

All technology can be mis-used. All tools can be dangerous. A chainsaw can cut down any tree in the forest, also it can kill you. I don't think Hal is planning on killing me. Yet. Hahaha.

I have also been exploring my heritage with Hal. I really like its art style. My mom said, "It looks like Tarot cards." She's right. It does to me too.

This was the image it came up with last night for me and my sisters...

This was what it came up for that's supposed to be me and my mixed heritage of Italian, English, German and Irish.

More than that though, I enjoy collaborating with Hal. He's like my own personal assistant. 

I'm curious to see where AI goes. If they do become our robot overlords, I could do a lot worse than Hal.

Feeling Powerful

Hair is a topic I talk about a lot here. Along with weight loss. Apparently I'm just a typical American woman.

I shaved my head again a few months ago because I thought I was done with color. At least for a long while. But then I saw pictures. And then pictures of other women in my life with natural hair and I thought "Hmmmmm... I don't like the look of that." You know what it looked to me? It looked like I wasn't "POWERFUL."

These are times where it's good to look and feel as powerful as possible. 

My mom has brilliant red hair. Like Crayola crayon red. I love it. She gets stopped everywhere we go and people comment on how great it looks. Partly I think this is because it does make her look like a super hero.

She looks POWERFUL. She also IS powerful. A force of nature. As am I. You don't f*$& with the two of us. But my salt and pepper hair just wasn't conveying how I felt inside.

So I decided to go with a classic. Blue/black. Did you know that more comic book super heroes had blue/black hair than any other color? They were also all fair skinned. Why? Because there's something mythic and powerful about that combination.

Me in LA 2017 with black hair. Post TB and right around when my muscles decided to lose their shit. Age 44.

Pre-coloring. Cute, but not fierce.

Oooooh yeah... That's better!

This is my favorite go-to black dye. For experienced hair color'ers only. This stuff stains like crazy and you for sure don't want to get it on your new white sink. (But if you do, a little swipe with some nail polish remover will get it right off.)

I already feel refreshed. And yes... powerful.

Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.