I wrote this on November nineteenth but, I didn’t feel safe putting it online until I ‘got better.’ I’ve since taken a semester off school, begun to chart a new course, and have begun to take much better care of myself. I wish I didn’t worry quite so much about what others think about the symptoms of my illness but I do. More than anything it’s the fear that I might get passed over for a writing or performance gig if folks knew how sick I get sometimes. Fortunately it looks like I’m all better for now, so here you go.
A friend of mine posted this in an online support group for queer people of color with psychiatric disabilities:
What do you do when you can’t get out of bed? How do you feed yourself? I’m so sick I can’t get out of bed and I don’t have any friends who can bring me food.
I know just how she feels. Sometimes I’m so checked out that I don’t even know I’m hungry until I notice that my brain is unable to think clearly or that I’m in some kind of physical pain that I’m unaccustomed to. Lately, I’ve been feeling so dissociative that I have a hard time calling it ‘my body,’ and more frequently find myself thinking of it as ‘the body.’ It’s difficult to even conceptualize my brain and body are a single entity and not two things at odds with one another. My first response to Andrea’s post was:
Peanut butter. Keep a jar of peanut butter by the bed. And a bag of apples.
She replied almost immediately:
Yeah, I have done that before but I just didn’t want to acknowledge that this is the direction that things are moving in.
I could imagine her chain smoking and hunched over her laptop in her sweaty little apartment in Buenos Aires, little bird like heart racing as she frantically she clicked and clacked at the keyboard. I didn’t remind her that I had gotten the idea from her the winter she was so sick she’d holed up in a mutual friend’s spare bedroom. It was then that she’d commandeered a family size jar of peanut butter which she ate directly from the jar. Two years ago, just after my husband and I had separated, I found myself occupying the same bed in the same spare bedroom where she’d been lying a year before. I was despondent and unable to even perform the most basic tasks. I can remember staring up at the gnome shaped pattern on the ceiling when that mutual friend of ours, the fellow with the habit of taking in wounded birds, recalled with affection the weeks Andrea had stayed with him. He reminded me of the peanut butter and I told myself that I would remember this little trick to add to my metaphorical Psychiatric Disaster Relief toolkit.
So I started thinking about the things that I do to prepare when I know things are going to get bad. Typically the first thing I do is stock up on drinking water. Last week I asked my girlfriend (not without some shame) if she could take me to the grocery store. She agreed without hesitation but still it felt critical that she knew that I wasn’t just asking but that I really needed her to take me. I didn’t want to be able to back out or play it off later as though my request were some inconsequential whim.
“I need your help and so I’m asking for your help. I’m out of food. And I don’t think I’ll be able to make myself go to the store alone.”
I wrote a big note and stuck it on the bedroom door where both of us would see it.
Ask K To Drive You To Store: Important
This Fall I’d driven to the grocery store several times only to sit in my car overwhelmed by anxiety until I was so hot and filled with shame that I drove away feeling as though I had just failed at life. I needed to ask someone for help.
We walked through the aisles and I heaved a crate of shelf-stable soy milk into the cart. I felt certain she was judging me for buying food with excess packaging,
“These are for when I run out of milk and I am too depressed to take myself to the store,” I laughed even though it didn’t feel funny.
There was a yuppie lady pushing a cart past ours staring absently at the cereal. I wondered if she’d heard me. I wondered if she thought I was lazy and incompetent. If she did hear me she certainly didn’t seem to care but when I get in that place I feel certain that everyone must despise me as much as I despise myself. There is actually a note by my bed that says “Not everyone hates you. In fact, most people don’t.” If you sometimes think this way, you should also consider writing yourself a note.
When I am feeling well (as I am in this moment) and I read that last line out loud, that sometimes I despise myself, it seems somewhat melodramatic. But the fact of that matter is that the world and even your own reflection are often frightfully distorted when you’re in the thick of a storm.
I felt ashamed for buying all that food wrapped in plastic and felt obligated to justify my frivolous behavior to my girlfriend as she watched me pretend to examine overpriced fruit.
“I know how to shop and get good deals and be healthy but I really can’t do anything better than this right now,”
I gestured to the cart filled with things wrapped in plastic. She wrinkled her brow and stopped in the store to squeeze me.
“I know,” she said,” You’re doing the best you can.”
Before bed I poked back into Andrea’s thread to offer one more solution to the hunger problem:
When you’re doing really good you can buy a lot of one or two things and eat them every day. For example, for the past few months I have mostly been eating yogurt, cottage cheese, apples, and hummus and arugula on lavash bread.
There is no response and I realize that my suggestions are of little use from the perspective of someone who is having difficulty managing daily self-care tasks that most people take for granted like eating and drinking.
I was lying in my bed stroking and patting at the dip just above my girlfriend’s clavicle when she asked me tenderly,
“Why do you think you have a hard time doing things for yourself?”
“I don’t need you to solve my problems!” I responded, feeling indignant.
I was immediately embarrassed by my inappropriate response. I expected her girlfriend’s body to grow rigid in my arms, but she remained soft, unflinching.
“I wasn’t trying to solve your problems,” she said. Her brown eyes brimmed with empathy.
I took a deep breath.
“I know you weren’t. I was feeling defensive because I feel ashamed.”
I took another breath.
“I feel shame when others know how little I care for myself.”
One of the exciting things about entering my thirties is that I feel so much less judgmental than I was when I was younger. Until very recently I would have judged people who buy all their food at Trader Joe’s. I would have gushed and gloated about the ten pound sheets of tofu I scored from the Hari Krishna’s at the free market or my $20 South Central Farmers produce box. But right now the best I can do is ask someone to take me to the store and lay a bag of apples next to my bed.
I wish I could apologize to everyone I have shamed because they were too sick or too tired to shuck their own corn and soak their beans overnight.
While my current economic success often leads me to believe like I’m doing better than I have in my entire life, this may not be the case. I am certainly ‘doing more’ than I ever have but my capacity has diminished and now it would seem I am simply doing a poor job at many things simultaneously. I say this with the knowledge that we measure success in terms of goals accomplished, money made, and how many roles we can fill at once. In other words, things that are not easily attained or sometimes even possible when you are struggling with chronic illness.
I feel ashamed for people to know that I think of the functions and needs of my bodies are problems that need fixing.
I want everyone to believe that I am happy and confident all the time and that I have a great relationship my body and the natural whole foods I fill it with but that’s not the case right now. And the only way I know to move through shame is to open up the wound and rinse it out.
When I woke up it occurred to me that me that Andrea does not wish to believe that she will ever be that sick again. For me the past two years have been filled with lessons to teach me to know both my capabilities and capacities and just as importantly, to accept them.
I ducked into the Disabled Queers of Color group again to read everyone’s responses and to leave one last comment:
If you live in a place that frequently experiences hurricanes than, when you have the resources, you should stock up on hurricane supplies. At the very least you’ll need clean drinking water and shelf stable food that requires little to no effort to prepare.
But I’m not really talking to her because that last note, that last note is really for me. I know I live in a body and a brain where disasters are a frequent occurrence. I want to work on my relationship to food and my body but right now the best thing I know to do is be prepared to hunker down and wait until the storm subsides.