Thread by @keikoinboston

🧵 A few folks have noticed that I haven’t been tweeting much and asked me how I was doing.

I’ve been dealing with some odd symptoms and didn’t want to talk about it publicly until I had answers. 😔

There’s still a bunch of things up in the air but in March I found out on routine surveillance MRIs for multiple sclerosis (MS) that I have new lesions on my brain. 🧠😕 I appeared to be asymptomatic on the MS front at the time.

After that, I developed some odd symptoms that didn’t seem to be linked. They were most likely injuries I caused myself by pushing myself too much when I tried a breathwork program to improve my shortness of breath, a symptom caused by ME/CFS. 🌬

Overlapping with that I started having even more odd symptoms and my neurologist eventually ordered more MRIs which confirmed at least one new lesion on my thoracic spinal cord where previously there were none. ☹️

My diagnosis is unchanged — it’s still mild relapsing-remitting MS (RRMS).

nationalmssociety.org/What-is-MS/Typ…

I rarely talk about it because the MS has been the least of my health problems for years. I was in remission for ~18 years before my second relapse in 2019, which involved some temporarily vision loss.

For the past 10+ years my undiagnosed (until last October) ME/CFS has been my biggest health challenge and I spent years chasing down other diagnoses in the process of trying to get to the bottom of my ME/CFS symptoms.

https://twitter.com/keikoinboston/status/1323045738918588416

But this thread isn’t about the details of my relapse which I haven’t decided if I’ll write more about.

As I’ve had to sit here pondering for the past month and a half what exactly was going on and how bad it was going to get, it’s really brought into perspective how much people spend their time on things that don’t matter at all. 🤔

When you’re at the end of your life are you going to be saying to yourself:

“I wish I had spent more hours watching that YouTuber I hated so much.”

“I didn’t spend enough time arguing with that anonymous account with 21 followers.”

“I ought to have spent hundreds more hours researching that culture war topic that didn’t directly affect my life.”

No, of course not.

en.wikipedia.org/wiki/The_Top_F…

People often have fairly cliché things they wish they had done more or less of but sometimes the regrets are unique.

theguardian.com/lifeandstyle/2…

Was there an obscure skill you always wanted to learn but never made the time to master?

Maybe somewhere you wanted to visit again that wasn’t a tourist hot spot but a place that held special meaning for you?

Some random item you wanted to cross off your bucket list that you never made it to?

One of the things I had to learn when my health started to tank around 10 years ago due to ME/CFS was that I really had to think hard about how I wanted to use my limited energy.

In the early days I was still trying to behave like an able-bodied person my age and being disappointed and frustrated when I couldn’t do all the things I used to be able to do without feeling completely wiped out or having to bail on friends. 🤤

But eventually I realized that whatever was going on wasn’t likely to be something that I was going to spontaneously recover from nor was it likely that all the well-meaning healthcare providers promising to get me better would be able to do that.

Which meant that I had to accept that I couldn’t do everything I wanted to. In some cases I couldn’t do the things I wanted to do at all. 🤷🏻‍♀️

But it did free up time to do other things and I’ve just learned to live within the limitations set by my illnesses and conditions.

Am I still frustrated?

Frequently.

With my body, with the medical system that hasn’t really done a great job, with the lack of research funding and the slow pace of research, …

... with some of the people close to me who don't get it, with total strangers, Twitter acquaintances, & hospital staff who have dumped their shit on me when I’ve been in the midst of various medical crises… the list is long.

But as we say in Japanese, “shikata ga nai” (仕方がない).

“It can’t be helped.”

en.wikipedia.org/wiki/Shikata_g…

It’s a phrase that drives some younger Japanese Americans crazy. This is stuff we heard from our parents and grandparents about the Japanese American internment, about the bombings of Hiroshima and Nagasaki, about racism.

In these contexts “shikata ga nai” is viewed by some as a defeatist attitude, caving to injustice instead of fighting it.

And yet the longer I have to live with these incurable diseases the more I find “shikata ga nai” something I say to myself because I find it more useful than “Ganbatte!” (がんばって - “Do your best!”) or…

… English affirmations or unhelpful high conflict things that activists say about how everything would only be better if able-bodied people weren’t so ableist and we had better insurance and we had more research $$, and the medical industrial complex didn’t hate us so much. 🙄

I don’t see it as defeatist but as accepting a reality that you can’t change.

The only way out is through.

I was surprised to learn about the Stockdale Paradox last year about a Vietnam POW who said that it was the optimists who didn’t survive.

en.wikipedia.org/wiki/James_Sto…

Who survived?

(This isn’t a direct quote from Stockdale but a summary by Malcolm Jarod.)

https://twitter.com/keikoinboston/status/1345891527487320066

As we transition in the United States and some other countries to whatever post-pandemic life will bring, I’d urge folks to ask yourselves if you’re spending your time in meaningful ways and doing things that you want to be doing.

If the answer to that is “no”, then it’s time to make changes.

Also, it’s okay to ask for help if you find yourself really struggling with this transition.

https://twitter.com/keikoinboston/status/1389740052666896388

Social media can make people feel that every daily outrage is a dire emergency and it’s just not.

A conflict entrepreneur’s lying tweet isn’t an emergency.

Someone’s drama-filled livestream is not an emergency.

An op-ed that says things you find horrendous is not an emergency.

DMs from your high conflict Twitter acquaintance are not an emergency.

Unfortunately, some people have lost all sense of proportion and they sit around on social media all day trying to tell anyone who will listen that EVERYTHING IS AN EMERGENCY!!!!! 🚨🔥💥⚔️💣

This is not true.

In some cases these emergencies are manufactured with false or misleading information.

In other cases the information is real, but people are trying to manipulate others to dial up the outrage.

It’s okay to unfollow, mute, block these folks.

https://twitter.com/keikoinboston/status/1088967472257085441

It’s okay to only follow animal accounts.

It’s okay to spend less time on social media.

For those of us who have to spend a lot of time self-isolating for our health or bedbound, social media can at times be a lifeline.

But sometimes it can make things worse because there are people here looking to take out their anger and frustration about their empty lives on others.

Things I’ve been doing while spending less time browsing Twitter:

- More healthcare appointments 😕

- Listening to thoughtful or familiar podcasts (familiar voices are easier to process when brain fog is high and can also be comforting during stressful times)

- Talking to friends & family on the phone

- DMing with friends who aren’t high conflict people

- Online shopping (not really recommended but I had some gift cards to spend and had a run of bad luck buying defective items so it’s been a lot of buying and returning and buying 🙄)

- Watching crafty videos on YouTube

- Papercrafts (I discovered that fussy cutting is oddly meditative)

- Spirographing!

https://twitter.com/keikoinboston/status/1394051185049587717

No matter what someone is posting (or not posting) on social media, you never really know what’s going on in their life.

However bad a day you’re having, their day/week/month/year may be far worse. Choose kindness. 🥰🤗 It’s contagious!

And if you can’t do that, consider silence.

https://twitter.com/keikoinboston/status/1345175245418852352

Check in on the people in your life and those you've lost touch with. An old friend emailed me out of the blue the other day after walking past a yarn shop and thinking of me. 🧶

https://twitter.com/keikoinboston/status/1298397299450744837

We always think there will be time later, but sometimes that’s not the case. 😢

https://twitter.com/keikoinboston/status/1303810393790447616

Anyway, there’s nothing original in what I’m saying but I thought that I’d put it out there in case it’s something someone needs to hear right now. 🌷