Do I risk eating fish? 6.5.19

My dad walking with a friend in the hospital. He’s on oxygen 24/7 and has to use the walker at home too.

My dad walking with a friend in the hospital. He’s on oxygen 24/7 and has to use the walker at home too.

I’ve been spending all day wondering if I should try to eat fish tonight.

I’m never sure how to convey what it’s like to spend SO much of my mental bandwidth thinking about something like that. Should I do two IV bags today instead of one? Should I try that new protein drink? Or is it too risky since I started that other one and still assessing?

The list goes on and on.

It’s hard to believe my athletic dad is using a walker, isn’t it?

So many able-bodied people just don’t understand how it works for medically fragile people.

You can be fine one minute and hospitalized at the brink of death the next.

It’s simply our reality. And yet, so seemingly hard for so many able-bodied to wrap their heads around.

I think a lot of people are still in shock - wait, WHAT Marv NEGRIN is so sick? But he’s so healllllthy!

No, people. Our outsides are strong, because we have some control over that.

Our insides are not necessarily the same.

But in our culture, the OUTSIDES are revered to such a ridiculous and warped level, that if they look ok - or even “good” - then everything else in life must be FINE!

It’s so weird to me when people are SO surprised when famous people commit suicide.

As if the trappings of their life somehow make their mental health all better. If anything, those things can make it worse.

I feel bad for the young influencers that grow big and then have nervous breakdowns. They can’t keep up this sliver of a persona on the Internet in actual real life. It’s impossible.

It’s impossible to live as the persona we present. That’s why I think so many people are having a hard time right now. I mean, there are a lot of factors, obviously.

But when we live our lives thinking that our outsides matter more than our insides and use social media as a lens through which to view ourselves, it can create significant cognitive dissonance.

This is what I’m most worried about for me.

The trick is to find that balance between leveraging social media and the Internet for optimal benefit, without letting it drag you into the murky depths of digital discomfort.

Both the regular world and the digital sphere are dangerous places for me these days. I’ve made myself more vulnerable through my activist work, the haircut, being disabled!

It’s either hide or lean in.

I don’t want to hide anymore.

I wasn’t sure I’d be up for doing a podcast this week. But I had some ideas on what I could riff about - I’m in no shape right now to outline and curate content - so I went for it last night.

I felt so much better afterwards! Imagine that, simply recording myself felt like I had an hour of therapy! Almost better than therapy.

My mom just came downstairs with my little nephew who wanted to see my kitties (though I did score a hug from him so that was fun). She was so happy that she finally made it to Target to get a few things.

Some of these tasks feel impossible when dealing with one medical crisis after another!


I started this earlier in the day, and then surprise! The day went off the rails. I REALLY need to walk earlier tonight than I have the last few. I’ve been going to bed at 3am. That’s the thing - between the walking for 3 eggs, each night, I have some sort of task on top of of my stomach routine. Last night, it was laundry, sheets and clothes, folding and putting away. Another night, it’s shaving/cutting my hair (I do all of it, bleaching, dying, cutting the top and shaving and yes, I love it! Going to the hair salon takes even more time. I can shave and cut it in under a half hour in my own house for free). Another night, I’ll organize paperwork. Another night, I’ll have to unpack all my medical supplies which is a royal pain. Another night, I have to do a deep long stretching session and another night, I MUST do a little dancing and this kind of hula hoop motion over and over throughout the evening.

I know these things may sound normal to an able-bodied person! But I’m doing it all in the minimal hours I have energy to be up and about, on about 800-1000 calories per day.

There’s always stuff to do. So much to do all of the time. It’s different than when I was able-bodied. There is fear underlying everything I do now. And urgency. I still haven’t written a Will!! I heard they are expensive - my friend referred me to a lawyer who does it, but can’t I just write this shit up and have it notarized? My friend said hers cost $1200!!! So I get to die and pay four figures to write an official document?

I guess I feel like if I write the Will, then something bad won’t happen.

My head is so fucked up right now.

When able-bodied people with money complain about being too busy, I’m like. Dude. First of all, most of these people chose to be parents so I find it strange when people think that being a busy, overworked parent is anywhere near the same lifestyle as being a poor, disabled person. I’m not saying their lives aren’t sucky, stressful or feel impossible and super frustrating.

I’m just saying that able-bodied shouldn’t respond to me with: I feel you. Or I understand. I know how it goes. I can relate.

Don’t say those things to a disabled person. Or a really poor person. Definitely not a poor, disabled person. Please. Do not. (And I’m not close to a “poor” person at all - however, in the world I walk in, I am. Compared to the rest of the country? No.)

There’s a difference between working three jobs at minimum wage, and being in a more affluent lifestyle and having a school fundraiser, dinner with friends, children’s birthday party, soccer games, more sports, in-laws in town, then leaving for a trip with the kids so must pack for that, and on and on.

Think about it. Not one of those things is necessary for actual survival!

I remember when I hosted kids cooking parties at my job at the JCC. I charged BELOW market rate - I think it was $800 for a group of 10 kids, including cooking instruction, homemade pizza for each child, homemade cupcakes and frosting - I made in advance so the kids could decorate them while the pizza was cooking. Some parents were aghast at the cost and I said: I know! I totally get it! We grew up with a Betty Crocker cake in the backyard! But I have to at least be somewhere in the market rate department and it’s a ton of prep work to make the 1) homemade pizza sauce 2) homemade dough that’s rising as kids arrive 3) homemade cupcakes 4) homemade frosting plus organize class, hire instructor if not me, and clean up. OMG CLEAN UP SUCKED SO BAD AFTER THOSE PARTIES.

A lot of parents would say: I would pay that just to not have a party in my apartment or on my own.

I can’t remember what my point was here. Oh, that parents often feel like they have to return favors if someone else throws nice parties, or signs their kids up for x, y, z. There is SO much pressure.

I totally understand that if you live in that world, there’s a ridiculous amount of pressure to keep up, and do all the activities and show up to events.

All I am trying to say is: most of it isn’t rooted in survival. It’s rooted in social acceptance.

Two very different things that the people at the top of the food chain often don’t understand if they’ve never experienced poverty or tragedy or anything else that throws your whole entire world down a horrible, terrifying water slide into the unknown.

But I get it. I see how when you’re in that other world, it can feel so stressful.

From my new perch, I’m pointing out that most people could cut at least 30-50% of the crap from their calendar, still have good stuff going on and not feel as stressed. (I’m not saying they wouldn’t feel stressed, but just that it’s possible to lighten the obligations a bit).

That’s a choice.

When living disabled in America, choices start to fall away.

I live at the mercy of people who have so much more, a little puppet dangling. This is why I holler. I’m a puppet attached to a lot of people that could pull different strings.

Or, not.

We shall see.

My little kitty Lucy has been so sweet lately. It’s so weird how animals know when you’re going through a tough time. I’ve been having a particularly hard time the last few days (if that hasn’t been apparent!!! Haha!) and she curls up next tom every chance she gets. Ok, I’m going for a walk outside because my mind and body need fresh air. I had a weird therapy appointment today and I’m not sure how I feel about it.

I hate not being believed. I happened to record an entire podcast about it last night!

It’s really a big source of emotional pain when I’m not believed.

I have to accept that there are lot of people that benefit under the Patriarchy. That don’t want to hear things that make them uncomfortable. That don’t to take responsibility for their actions or cut back on consumerism or vacations. That don’t want to face the fact that their lifestyle might be adversely impacting people lower on the food chain.

All of those things mean that I make people uncomfortable when I speak the Truth.

I can’t help it.

I decided to talk about truth and lying on my podcast that’s coming out in the next couple of days. I think the title will be “Why I Don’t Lie” - or “Truth and Lies,” I can’t decide. The first one will intrigue people more.

Ok, off to walk at 8:48 and my IV bag is already prepped (that takes time! Everything about this body takes time!!!).

To anyone that’s actually reading all of this pour out of my brain, thanks! Thanks for witnessing. Thanks for making me feel like I still exist in the world!!!

Much love,