Come a long way
When I first got a Facebook account back in 2007, I was blown away.
I was super excited about how much cooler it seemed than MySpace, specifically because I was connecting with friends from near and far away. I uploaded a bunch of photos and I loved reconnecting with friends who I had lost touch with and missed having in my life. I was thirty-five, at the height of my post-grad school dance party days. I was teaching mostly evenings at Sacramento City College and eight hours a week at Choices Charter School. My social life had bloomed, and I was writing most days, still with the idealistic (tempered but still dreamy) mindset that I would finish and publish a book before I turned forty.
While I enjoyed the early days of Facebook, I didn’t have a smart phone and I barely went on to check or post. It never tapped into my dopamine receptors in a way that motivated me to even remember to go on. It was a once in a while thing that felt not only harmless but wonderful, as now I had reconnected with people from San Francisco and Tahoe, and the idea of this online network keeping us tethered worked for me.
Within a year, though, I learned my first Facebook boundaries lesson. I hadn’t been aware that people could see when I was on, and I posted a status update then just a minute later got a phone call. The call came from a casual friend who was going through a horrible domestic situation, on the way to an ugly divorce. Of course, my heart went out to this friend, and I listened and did what I could to console.
The situation with that friend and their partner ramped up and up, to the point where our home became a safe place to come and sleep after an eruption of alcohol fueled violence. Paul and I were happy to help.
However, more and more, any time I went on Facebook, the friend would reach out to me right away. I started to become paranoid when I was on the app. The breakdown of their marriage was filled with drama, lots of ups and downs, and I didn’t have the bandwidth to be the sounding board that our friend needed.
As a teacher and social butterfly, though I thought of myself as an extravert, I still had only a certain amount of energy for people people people. A lot of that was due to my own mental illness, the eating disorder that required too much from me.
Soon after all this Facebook turmoil began, I learned I could turn off the “active status” function. By then, though, Facebook had lost its charm for me. Again, like my gratitude for not having any addiction issues to chemical substances, it’s the same kind of thing with me and social media.
I do not at all, not for one second, see myself as somehow superior to anyone who does love a social media scroll, regardless of whether or not they are in control of how much time they spend connected to their platforms of choice. I don’t like flipping channels, either.
And I have my own media and apps that I am dependent on. I am a massive podcast head, have been ever since transitioning from radio. When I was teaching high school, during my prep period, I would put on my headphones so I could listen to Howard Stern. Back in the day, I listened to NPR non-stop whenever I was driving or at home.
For a minute here, I forgot why I was bringing all this up, but writing! It’s got to be the best memory exercise that exists. So, here we are. TikTok.
It only took a few more years or so for me to start feeling icky when I logged on to Facebook. This was before I even had an Instagram account (which I still barely attend to, either—not a great trait for someone trying to market a book). I would get the same sensations that I felt walking into a Walmart—I just didn’t want to be there. So, I hardly ever logged on. I didn’t have the app on my phone, and, over the years, as my pain condition progressed, the less social I felt in the real world or anywhere.
Then early on in the pandemic, I opened a TikTok account. I had no friends or connections on there, and, due to the app’s design, the algorithm, all the things that make TikTok tick, I started making and posting videos. I didn’t care about how I looked or came off. It was the first time I ever talked about and/or showed my feet online, aside from on the website, Living with Erythromelalgia, where I occasionally posted or commented, as part of my answer seeking. (That site is amazing, not a free for all. It’s highly curated and monitored. Users—almost all being other sufferers—have the best intentions and the best information; I wish doctors would sign up because they could learn so much.)
On TikTok, I posted about my feet, but I also made videos of me with my cats, usually out in our backyard. It was cathartic to make those feet videos (back then, my hands weren’t as much of a problem as they are today).
Then, after Sodi died, I stopped. I didn’t go on Facebook, Instagram, or TikTok for a long time. I didn’t miss it. I worried that I was missing friends, that I was losing even more contact with people who I care about but who I only see online. And, true, yes, I was. In a lot of ways, back then, I didn’t care, though. It was a hard time, and I was working on my book and on getting through it all.
When the time came for me to announce the release of my book, I knew I needed my socials. Getting back on with something to say felt good. And the response felt real good. Once my book launch happened, I went back to checking FB and IG infrequently but not like before, where I couldn’t stomach even opening the apps. Now, it’s fine, it’s useful, and I either go on and get off within a minute because the first post was of a friend’s pet’s death or I stay on for ten minutes, commenting on friends’ adorableness.
A few days ago, I got the motivation—mainly inspired by the Big Horrible Bill—to get back on TikTok. My FYP (For You Page) was gone and my algorithm had disappeared. First to show up were Tarot readers. Why? No idea.
That week, I made a few videos, one to promote my book, and a couple more in my attempt to keep working on getting my videos into other people’s algo’s. Nothing fancy, but I enjoyed the process and results.
Until I didn’t (just one week?!). I logged on and started watching a woman who was so very underweight, so incredibly anorexic: hard to look at/hard to look away. She’s in her thirties and has those silicone pumped up lips. She has two young kids and mostly posts about life as a single mom.
I couldn’t scroll away. I needed to understand what I was seeing. I was fascinated and horrified, but, truly, I was empathetic and compassionate. I never ever feel anything but empathy for anyone who’s suffering from an eating disorder.
So, I watched a few videos, and I soon learned that though this woman is eating and is on a plan to increase the protein in her diet, I also saw—from her “what I eat in a day” videos—that she doesn’t seem to have any grounding in the reality of what’s happening with her body. She’s eating like a person on a keto diet with caloric restriction, which, I learned from her, she views as the way she’s going to fix the way her face looks (which is skeletal), since she’s the same weight she was before having kids but she’s now got sunken cheekbones and hollows beneath her eyes, skin stretched over cheek bones. She expressed all this as her wanting to “gain weight in her face.”
But her arms, her arms were the circumference of like two of my fingers held together. Her clavicles. I used to watch my face and clavicles, as well as my chest bones, to know if I was looking better or worse. My collarbone, like my mom’s, naturally juts out, so when everything surrounding it flattened and dehydrated more, I became this frail looking version of myself. One I didn’t want others to see. The sicker I got—and it was a decades long story of ups and downs—the more embarrassed about my body I became.
I was not at all triggered by this woman, but watching her was mind blowing. There you go AI algorithm, you got me. She’s got a lot of videos, and none that I saw are focused on a recovery journey. She’s a suburban mom, prepping food for her on the go life of driving kids to and fro. She seemed very much like a loving and dedicated mother.
This woman is baffling to me. But I accept other people for where they’re at, as long as they're not trying to destroy democracy or are inflicting harm on other people.
Reflecting on it here, I realize how changed I am. It’s not that I ever would have seen her as a #goal or admire her “discipline.” I was lucky in that, from early on, I was in therapy. Living with Paul, my home was an environment where eating meals, being at a normal weight were intensely promoted as the goal. I didn’t ever feel superior because I was skinny or wasn’t eating what everyone else was enjoying so freely.
However, my brain was warped. The thoughts and voices I heard fought against health and normality. At times, my ED voice told me not to trust Paul or my therapist, that they didn’t really know. As a writer and observer, though, I was aware of these thoughts, often caught in the juxtaposition. Stuck in this limbo for years, in fact. My digestive system was a wreck from not eating “normally.” My stomach ached from hunger and from fullness, stuck in what felt like a brokenness that could never heal.
The worries, oh the worries!
And now, for all that to be done.
I can’t ever know if I would be so changed without having the most unusual, painful, challenge of my combination of conditions: my disease. It’s too much to ask for me to be grateful for them—uh, no.
Today, I’m getting stronger. I can bench press and squat again (don’t worry, I’m not trying to go heavy or max out or any of that; I’m all about no pain, all gain).
Last week I found something that solidified in me, again, that I’m right about eating disorders: they don’t just go away when you get old, and I’m referring to old old. When you are subjected to the kind of messaging for enough of your life, and then when you do get sick or old, you just might decide that because you no longer have the drive to eat as much or at all, then you can just stop. You’ve done it before: skipped meals, gone on a “cleanse”, fasted. You’ll be fine, like before, and now that you are old, you don’t need as much food anyway.
If you have a brain like my old one, like so many people trying to control how much they eat, who think they need to lose weight, who might never have been able to “get back” to their high school weight, you still need to eat. And if your brain, like my old one did, only sees a morphed body image, has repeated only negative self-talk about your size for decades, then it’s just too easy to stop caring about living when not being “fat” anymore feels so freeing.
I returned to resistance training early last fall, after receiving a bone scan that determined I have osteopenia. For several months leading up to that, I had begun adding in more protein to my diet, and in late January this year, I started HRT.
When I started back at the gym, I was significantly weaker than when I had quit ten years ago. After herniating a disc while doing deadlifts (an injury that I was working my way into, ignoring the sciatica and low back pain on my left side that I knew all too well from my years of having the same symptoms on my right). At that point, my feet were making it more and more difficult each month to workout in a gym.
I had found biking and I was in love with it, so it wasn’t long before I was biking almost daily, stretching and doing some yoga/pilates type of physical therapy to keep me going. But I didn’t realize what I was giving up when I gave up lifting weights and being dedicated to any kind of resistance training.
Just this week, I’ve graduated into strength, a new level from what I’ve been working with since January. I took it slow, avoiding free weights for a while, not pushing hard, focusing on my health, ensuring that my workouts were useful, productive, and supportive of the goals to improve my bone density, my strength and balance, and not to go back, not to exacerbate any old injuries and not to create any new ones.
At this point, my ego and sense of self has let go “self consciousness,” embracing all I have, pushing myself forward into self love.
And it’s working. I am making gains, feeling sturdier, shedding off the easily bruised, fearful, frailness that I had fallen into when I fell into that hospital bed in 1995. It’s been thirty years, and it has been a story. Today, I feel like I’m making a great return to a body I remember from the days when I was a fighter, a bruiser not easily bruised, a karate kid turned basketball brute. Who knows what is possible, what is to come. Maybe some day, I will be able to shoot hoops or spar in a dojo.
I don’t get many reviews for my novel. I’m pretty terrible (so far) at marketing it and so getting this message from David, well, you can imagine how it feels.
“Hi Eve,
I just finished your book today, and I needed to reach out to say thank you! I am in awe of your resilience, honesty, and humanity. Thank you for sharing your story so openly. You have opened my heart to so many who are struggling through emotional, psychological, and/or physical challenges. More than anything, your book is an inspiring and beautiful love story.
Take care,
David”
If you’re interested, you can get my book: Body in Script, available at many online retailers. You can find it at my publisher’s bookstore, or other places, like Amazon. (eveimagine.com is a work in progress).
