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Not Like The Whiskey

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Netflix and Hill: The True Story Behind “Afflicted”
The Aftermath of Afflicted
My New York Times Essay is on a Podcast
My Modern Love Essay is in The New York Times

Not to brag but I just had my teeth cleaned for the first time in five years and I didn’t have a single cavity. It may not sound fun or exciting but it’s a HUGE relief. ⁣ ⁣ I’ve always taken decent care of my teeth but for most of my life I only brushed once a day and rarely flossed. When I became bedridden I knew I had to do more. The last thing I needed was to have dental problems when I was so sick. My health issues were overwhelming enough, having a cavity would have been too much to handle, especially since I couldn’t see a dentist. ⁣ ⁣ The situation became this paradox of which I’m all-too-familiar with—I needed to do something to keep myself from getting sicker but didn’t have the energy because I was sick in the first place. So, I asked my caregivers to brush my teeth twice a day and floss for me. It was basically like going to the dentist twice a day — someone jamming a toothbrush around your mouth. ⁣ ⁣ I still need help brushing my teeth and I’m still not well enough to see a dentist yet, but thankfully I don’t need to. I’m incredibly grateful that Linda, the nice woman cleaning my teeth in these photos, was able to give my teeth a cleaning at home. If you’re in a similar situation, and you’re well enough to have someone poke around your mouth, I would recommend looking for an in-home dental hygienist. I live in a rural area; if there’s one here I imagine there’s an in-home hygienist just about everywhere. ⁣ ⁣ It has been difficult but I’m glad that I was so fastidious about my dental hygiene. Though I wouldn’t recommend going five years without a cleaning. ⁣ ⁣ #chronicillness #invisibleillness #spoonie #mecfs #disability #lymedisease #illness #chronicpain #chronicfatiguesyndrome #dentalhygienist #dentist #dentistry

This photo was taken last year when my New York Tikes essay was published. I was pretty stoked, probably just as stoked as I was listening to the podcast version, which came out Wednesday and you can find in my bio or on my story highlights. ⁣ ⁣ There's one scene in particular on the podcast that brought up all kinds of emotions for me. It’s the scene at the end, in which I'm trying to speak. In reading my essay I knew Pedro was going to have to imitate my attempts to speak and, to be honest, I wasn't sure how he was going to do with that. It seemed like something that could easily sound inauthentic or fake, the thought of which made me cringe, but in the end he not only did justice to my writing, he managed to accurately convey the struggle of trying to speak. He captured the cruel reality of my illness and, in a world full of skeptics who often jump on any chance to doubt the legitimacy of an illness, that means a lot to me. I guess that's why he's a famous actor -- the guy can emulate even the most unimaginable circumstances. I'll always be grateful for how he portrayed that glimpse at my life.⁣ ⁣ #modernlovepodcast #chronicfatiguesyndrome #dysautonomia #spoonie #invisibleillness #mecfs #chronicillness #lymedisease #chronicpain #spoonie

I have to admit I’m not so good at this Instagram thing. Mostly because it’s all about photos and videos and, as you may notice from my grid, I really only have two options to post: a selfie or this photo — a view from my room, which, admittedly, is pretty sweet. I mean, it’s not the ocean — where I would like to be — but it’s much better than looking at a cement wall or the inside of a cubicle all day. ⁣ ⁣ This is all to say that I wish I had some fun photos to post of me doing exciting things, but the fun things I do would probably seem really boring to most people — audiobooks and podcasts are my Friday nights. Although the other day I did see two deer having sex on my driveway. So I guess that was pretty exciting 🤣 ⁣ ⁣ Anyway, if you’re reading this, thank you for caring about my little world. In doing so, you make me feel not-so-purposeless and that means a lot. ⁣ ⁣ #spoonie #mecfs #invisibleillness #wheelchairlife #lymedisease #chronicillness #chronicpain #chronicfatiguesyndrome

Yesterday I put one foot on the floor and immediately felt sick. I was so frustrated I wanted to punch a wall. I would have had to get both feet on the ground to do that, though, so I settled for a pillow 🤣 The good news is that I got myself horizontal again and recovered quickly. Still, it’s hard not to feel disheartened and defeated by failed attempts at progress. It’s also hard to figure out what the mechanism is that’s making my body feel so horrible when I try to stand. ⁣ ⁣ Most likely it’s #potssyndrome and #dysautonomia, but I’m sure other issues factor into the mix. I think it’s a blood volume and circulation issue. I can lift my feet off the mattress without any noticeable repercussions, I can even touch my feet with my hands, but for whatever reason, I can’t put my feet on the ground without feeling like death. It’s the weirdest thing and makes me feel stuck. ⁣ ⁣ I have to use all my mental strength not to panic at the thought of being so trapped. I do know, however, that I have been more mobile in the not-so-distant past — I’ve stood up without crashing. And I’ll do it again some day. ⁣ ⁣ #invisibleillness #chronicillness #spoonie #mecfs #disability #wheelchairlife #lymedisease

Tweets

I’m so sorry that #MECFS patients and employees at Stanford have endured this crap from Dr. Montoya. It makes me so… twitter.com/i/web/status/1… 1 week ago
I just had my teeth cleaned for the first time in five years. No cavities 🤷🏻‍♂️ it’s a HUGE relief. ⁣If you’re disa… twitter.com/i/web/status/1… 2 weeks ago

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Recent Posts

My New York Times Essay is on a Podcast May 2, 2019
The Privilege of Being Sick April 22, 2019
There Ain’t No Party Like a Pity Party March 17, 2019
My Most Embarrassing Moment February 11, 2019
New Year, Same Cliché January 1, 2019

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