I have a Google Doc Spreadsheet called Pack List. Whenever I have to pack for an out-of-town excursion, I create a new tab and take notes for the week prior to departure. Then, anytime I think, “Oh, I need to remember to bring a water bottle / a gift for a distant friend / a gorilla suit,” it all gets jotted down.
In preparation for this week’s trip to Austin, I copied my tab from last year’s Fantastic Fest trip. My first thought was to list ice packs and leg braces for my recent ankle injury… and then I saw they were already on the list. With bemusement, I realized that I’d also sprained the same ankle just prior to the same trip last year.
Then I noticed the other things I’d noted for last year’s trip. Notebooks and copies of forms and a long, detailed meal plan that I’d put together with the help of a nutritionist and a counselor, so I could enjoy the eight-day film festival without having a full-blown freak-out about what I was or wasn’t eating.
It has been a little over one year since I first went into treatment for an eating disorder and, by extension, the underlying obsessive compulsive disorder. Last year’s list was an artifact from a woman who had just started down the path of naming the monster.
A quick note before we proceed: many of the thoughts contained in this post are progressions from two previous posts. The first was written when I decided to get treatment. The second is kind of the mid-point between that post and this one. You might find them useful.
I’ve had a weird body quirk all my life. If I crane my neck back in a certain way, or if I hyper-extend my lower back in a certain way, I faint. I mean, I pass right the fuck out, like someone flipped an off switch. I can feel it coming on, so I usually have a second or two of warning. I’ve learned to just sit on the ground immediately, before the switch flips and I keel over, breaking furniture and scaring bystanders.
Changing overhead lightbulbs is something I can’t really do.
Anyway, it’s a body quirk that I just live with. It’s been like that all my life. I just automatically avoid those motions, so it doesn’t come up very often.
That isn’t the weird part. The weird part is that I was about 32 years old when I realized that not everybody was like that. I had no fucking clue that normal people didn’t faint when they looked up.
I remember that day clearly. I’d posted about a recent fainting incident on Livejournal (heh), and a dozen friends replied, “Whaaaaaaat?” And then I had the biggest goddamn epiphany that I’ve ever had in my life.
I’ve had some pretty big epiphanies in my life, and this one, about something so ridiculous and so basic (to me), shifted my entire worldview.
As they say, fish don’t know that they’re wet.
Binge Eating Disorder was something I slowly recognized as being unusual, because it’s something that slowly started manifesting, and eventually, one day, I said, “Well, that’s not normal.” That’s what I went into treatment for. Yet it was only a symptom of Obsessive Compulsive Disorder, which was so ingrained in every day of my life that I had no idea I was living with something unusual. OCD is the air I breathe every hour of my life.
The Binge Eating Disorder stopped dead in its tracks after it finally clicked in my brain that it was a symptom of something else. Over the last six months, I’ve had one or two incidents. I do notice every day that it lurks there in my brain, but the unstoppable train of unthought that just made me eat and eat and eat just doesn’t happen anymore. The broken record in my head sometimes happens with other things, but I can now keep food in my refrigerator without being terrified that it will just wind up damaging me later that day.
I actually keep food in my kitchen. And it can stay there for days. Holy crap, guys.
Prior to treatment, all of this was the weight I didn’t realized I carried. When I started treatment, I knew it was there, but I didn’t know what it was. There is amazing power to just be able to point your finger at something and give it an identity.
I find myself saying that I have Obsessive Compulsive Disorder frequently. Like, so frequently that I’m sure my friends are sick of it. I’m reminded of alcoholics who have finally gotten treatment and who are high on life and can’t stop talking about it.
Every time I clean something or do something repetitive or count something that I don’t need to count, I now wonder, “Hey, is this OCD?” Of course, right now, EVERYTHING is OCD, because I have OCD and I like making lists, and therefore I must have a list of everything that is OCD.
I’ve had some really great conversations with Molly Glover about the difference between OC and OCD. (One of them happened during this podcast.) A lot of people casually call themselves OCD, because they sort or clean a little bit more than the average person. As Molly put it to me, that’s almost always OC without the D. Lots and lots of people have OC behaviors. However, there’s a big difference between sorting M&Ms before you eat them and biting your fingernails past the point of bleeding but you can’t stop because the nail is still crooked and then you have to bite down all the rest of them because now they don’t match and then you start biting off the skin of your fingers because there are no more nails left and now you can’t pick anything up because your fingertips are in so much pain. The D in OCD is when the OC begins to damage.
OC is a quirk, like my stretch syncope issue. (That’s what the spine/fainting thing is called. Stretch syncope.) OC with the D is mangling and painful.
That fingernail example is real, by the way. That was me until about age 20.
I mentioned in one of the previous posts about my eating disorder that if an eating disorder is treated without treating the underlying OCD/anxiety issues, patients sometimes start exhibiting other flavors of OCD. Compulsive washing, skin picking, hoarding… they’re all flavors of the same thing.
Sure enough, a couple months after I stopped my therapy appointments, I started absent-mindedly pulling hair out of my face. It started when I was just sitting in the car or watching a movie, but soon I was sitting on my hands in meetings so I wouldn’t pick at myself. Then I’d walk out of the meeting realizing that I had heard nothing because I spent all my time concentrating on not picking hair out of my face.
I spent about ten minutes every morning with a pair of tweezers, trying to get every hair out of my chin, so I could at least get through my workday without embarrassing myself. Unfortunately, I’m fairly hirsute, so that only got me so far. By afternoon, there was something to pick at.
(Aside: when I had 23andme genotype me last year, I almost expected to find out that I was part werewolf. It’s a mixed blessing, really, as my chin was relentlessly hairy enough that my hair-picking tendencies have not migrated northward to my eyelashes or eyebrows.)
The good news is that Naming the Monster has helped. Almost as soon as it started cropping up, I knew what was going on. When I start picking at my face, I ask what is actually bothering me. I ask myself what I really need to do to improve my life in that moment. Sometimes, I even just let the behavior go, and I let the energy out by letting the wave pass. Sometimes, it helps just to accept that this is just the sort of thing that will happen every so often; freaking out about it just fuels the fire.
A couple weeks ago, I started visiting a cosmetic treatment clinic, to remove the chin hair once and for all. I know it won’t help my OCD at all to remove the manifestation of the disorder. However, perhaps the OCD is partly caused by anxiety about my appearance and the facial hair that I really dislike. If removing the hair reduces my anxiety about myself, even a little… it might help.
I stopped hair picking after that first treatment. It was maddening for a while to not touch my face constantly, but I think I’m slowly getting used to it.
It’s an experiment. If you see me without eyebrows next year, you’ll know how it went.
I’ve spent a lot of time this last year isolating myself from people a little more.
I know that’s a weird thing for me to say. I have this reputation for knowing everyone and being the person who is always interacting with other people. I’ve always loved being surrounded by the amazing people I meet everywhere. When folks see me out and about, I’m always plunging into a crowd or wrangling an event or otherwise accumulating people around me.
But this last year, I see that I spent a lot of time wrapping myself in projects and rest. A lot of people who I saw regularly back then are now people I haven’t seen in a year. I didn’t cut people out of my life so much as let the relationships fizzle as I occupied myself with figuring out what the fuck was going on. I knew I needed to fix my shit before moving in with Fes Works, because I desperately did not want to inflict my brokenness on another human being.
I find myself looking at unanswered e-mails in my inbox sometimes, and sighing because I know I won’t answer because I am sheltering myself. I am sheltering my time and my energy, saving myself like a marathon runner. I’m getting better because of the shelter. I am improving. But I don’t know if I need to stay in shelter forever. I don’t like being guarded. I want to burst out and rampage around and meet a million people, but maybe that’s part of how I got this way in the first place.
I occasionally see online that a friend is having success with dieting and/or losing weight. They are rightfully proud and happy.
I’d love to be happy for them, but right now, I see their posts and I see myself ten or even twenty years ago. I remember the hope and the ambition, and then I see where the long slide into madness got me. I see the word “diet” and I want to leap up and rescue my friend. I want to tell them that diets are lies. I don’t want to see them on that never-ending cycle that never makes them happy.
This is, of course, ridiculous. Just because someone goes on a diet does not automatically mean that they’ll wind up in therapy later.
I have to keep reminding myself that we’re all like pavement blocks. Most people can weather the seasons just fine. My pavement block had a crack in it. The water seeped in, and then the cold of winter caused it to freeze and expand. The crack widened, and cycle continued.
So I bite my tongue, reminding myself that they will probably be fine. They are not me.
I never did group therapy for my eating disorder. Treatment for me was a relatively solitary experience. It involved myself, my therapist, and a nutritionist. Thankfully, this seemed to work pretty well.
However, since speaking up about what was going on, I’ve been constantly surprised by the number of people who have come forward to talk to me about my experiences. A lot of my friends have gone through a variant of my own experiences. Many others suspect they are following my path.
Many of those revelations were surprising to me. Eating disorders know no age boundaries, race lines, or economic status. And while eating disorders are generally seen as a women’s issue, I’m pretty sure the majority of the people who came forward to me were men.
I was also surprised that I suddenly became a nexus point of questions, like a first responder for eating disorders. I’m not a counselor, and I feel like I’m abundantly clear about being a bit out of my depth about figuring out what’s going on in my own brain. But then I realized that people started asking me for help because I have no qualms about talking about this stuff in a public space. I think most people feel a mental disorder like mine in an embarrassment, when to me, it’s just another thing I adjust to, like my stretch syncope thing.
So I’ll keep talking about it.
This is me, leaving footprints so maybe someone else can find their way home.