The update on me and the Stanford trip
A few days ago, my husband Greg and I (that photos is us on a commuter train station bench somewhere in San Jose) went down to Palo Alto, California (a flight from Seattle that took about an hour and a half) for an appointment with a doctor at Stanford’s Infectious Disease Clinic, where they’re currently studying chronic fatigue syndrome. I was diagnosed with Fibromyalgia in 2012. This summer marks ten years of living with symptoms, and five years of living with a diagnosis. I’ve never questioned my diagnosis, but I know that CFS and Fibro are often either mistaken for each other or interlinked (a lot of people seem to have dual diagnosis).
Still, I was surprised to learn that my Stanford doctor believes I’ve been misdiagnosed. I have CFS, not Fibro. The appointment was very thorough, and Greg and I don’t have any doubts about his summary. We got home from our trip last night, and today I spent the day teaching and learning yoga at my yoga teacher training program. I haven’t fully processed the CFS diagnosis, but I have feelings. Lots of feelings. I’m frightened by it, I’ll admit. My doc’s descriptions of mitochondrial dysfunction and his urging that I stop over-exerting myself in any way or risk hurting myself, was scary to hear. Will I be able to teach yoga after I graduate? Will I ever feel strong and healthy again?
Stanford is researching CFS, which is good, and they have a treatment they’re working on, that I get to try: targeted anti-virals. Long story, don’t ask me to explain it all right now, I’m super tired. But, I have a friend who went through this protocol and is feeling so much better. And my Stanford doc says that while some people experience no change from the anti-virals, others have very noticeable improvement, and some even eventually go off them after a year or so because their symptoms are entirely gone. I’ll begin the drug(s) in a couple of weeks. Yeah, I have a lot of feelings. SO MANY FEELINGS.
The update on the recent spoonie post
Over the years, my most enduring personal goal has been, “write something”. Usually, it’s this rosy little dream of standing in Powell’s and seeing my book on a shelf, and having someone else walk up next to me, reach for it, and I say sheepishly, “You know, I wrote that.” And they say, “Really? I love this book!” And then we talk for two hours and maybe get coffee, and become Facebook friends. Every few months, we meet up and get brunch, and talk about our lives.
My dreams, they are so big.
Well, I didn’t write a book (still dreaming! maybe someday!), but I wrote one little blog post, and it’s getting some attention. How you define “attention” is definitely subjective. In terms of something on the internet “going viral”, this is nothing close. I think “viral” means millions of hits.
My stats look like this:
That last bar, the one that is almost to 8k is actually 7,489. Like I said, nothing in terms of internet viral-ness, but compared to the 10-12 hits a day I was getting before, it’s….an interesting blend of terrifying, exciting, and fascinating.
The terrifying part is that no matter how much we wish to be seen, usually what we really mean is that we want just a few people to see us as we really are – and still love us. Seven thousand people looking at “me” as represented by one post on my blog, makes feel both flattered and disjointed. Yay, seemingly mostly nice and appreciative attention! But wait, this isn’t all of me! This isn’t even most of me! The exciting part is just, wow, I wrote something, and people like it! I know, some people don’t, I’ll get to that. But mostly, they seem to agree, and many people are grateful for what I articulated, and I’m grateful for their gratefulness.
Tonight, while soaking in a hot tub full of Epsom salt, I looked up my post on Facebook. I ended up reading all these comments for and against it – that’s the fascinating part, that people can be having all these conversations about something that is about what I wrote, but isn’t directed at me at all.
Welcome to the internet, right? It’s not like this is a revelation. This is basically how the internet works. People write stuff. Other people talk about it.
Still, my personal experience of it is pretty much:
Most of the comments I’ve seen have been positive, and the ones that mean the most to me are the ones from other folks with chronic illness who express something akin to the post making them feel seen and understood. Awww! Hugs, fellow chronic illness sufferers! I see you! If something I wrote did that, I feel immensely gratified.
There’s been disagreement, too, but mostly it seems to be an annoyance at “language policing”, or people arguing that a spoon is a unit of energy and so they should get to use it, too. Maybe I’ll write a response to those specifically, but, meh. The first is just blah blah privilege blah, and the second is not understanding that sometimes a story is more than the sum of its parts. The spoonie story represents a lived experience, one that isn’t seen by most people, one that is often willfully ignored or ridiculed. The solidarity that spoons offer is one where we get to say to each other, I see this invisible shit you’re wading through. I’m here, too. We’re wearing the same boots.
One the one hand, the whole point of writing about it is to try and get others to understand. On the other hand, if they don’t get it, and want to argue, I’m not sure spending the energy on arguing about it, is worth it. Again, welcome to the internet.
For now, this is what I have on my plate that really needs doing:
- Finish yoga teacher training (I’m done at the end of July).
- Work on my final project in June: a series of four yoga classes designed for spoonies.
- Try and transition to my Stanford doc’s advice of eating Mediterranean as a way to cope with the CFS. I ordered a cookbook. I understand this to mean I get to eat a great deal of hummus and olive oil, which I am more than happy to do. Apparently, I also have to eat a lot of vegetables. <shakes fist at sky> <bears solemn witness to my avoidance of rational adulthood>
- Read and learn as much as possible about CFS.
- In September, I go back to Stanford for a follow-up.
Underneath all that we have a thousand other ideas and strivings and flimsy daydreams I may or may not have the energy to finish, like:
- Write a book worthy of a future-brunch-going platonic meet cute connection.
- Get my outboard hooked up. I was almost willing to articulate the irrationality of owning a boat we rarely use while at breakfast in Palo Alto, but then a few hours later said, “I take it back, I will never sell her, nevermind“. Greg was like, “Duh, you will never sell her, I know this.”
- Sail the entirety of Puget Sound. Twice. Write about it.
- Design a series of sequences for yoga and various chronic illnesses.
- Break down all the advice on biomechanics in Move Your DNA, quantify my ideas and experience on applying it to chronic fatigue, and go find Katy Bowman and present my findings and ask her what she thinks.
- Learn Spanish.
- Pitch a children’s book about a harbor seal with chronic fatigue syndrome. Include chapter where the seal visits Stanford.
- Get rid of everything. I have too much stuff. Keep the books and the ukuleles. And the sewing stuff. Oh and the boat. All the rest goes.
- Read the seventeen dozen books sitting on my “to read” pile.
- Clean the entire house from top to bottom. Or make the kids do it. Maybe offer them pizza. OR HUMMUS.
- Sew all the things. All. The. Things.
- Rest a lot more. (Maybe while I’m reading.)
- Start taking the 500-hour yoga teacher training program at a local school that looks really good.
- Buy bolts of linen, create these amazing flowing sundresses, sew them up, and then dye them gorgeous colors using techniques I will pioneer and then write books about. Sell on my forthcoming Etsy shop, make billions of dollars, use the money for the kids’ college, a trip to Spain, and buying local politicians to do my bleeding-heart-liberal social-and-environmental-justice bidding.
It’s going to be a busy summer.
Categories: Chronic Fatigue Syndrome