I stopped blogging because I stopped eating. It was not a choice. Nor an eating disorder. Sometimes life throws so much at us that we bend under pressure.
It’s been nearly two years since I moved into domczyk or a tiny summer house deep in the Polish countryside. It’s been over two years since I realised that I might be autistic. The two-year journey ends soon, as I am saying goodbye to this house. It’s time to sail into the deep, scary waters. But before I do so, there’s a story I’d like to share.
Sat at the old, spent wooden table in my no-kitchen, wondering whether the birds’ songs outside and the sunlight sneaking into the room make me more or less depressed.
Kitty’s sleeping, oblivious to the storm that’s going on in my head and the smudgy black stains on my cheeks from what used to be make-up this morning.
Melted cheese on a piece of a bread roll quietly cools and begins to look more and more disgusting. I’ll still eat it, dipped in, now almost dried up, ketchup puddle.
Yum. Crumbs falling on my lap, cheese still fairly warm, but even more difficult to chew and safely swallow.
„What is life? A madness. What is life? An illusion, a shadow, a story. And the greatest good is little enough: for all life is a dream, and dreams themselves are only dreams.“ – remembered these words, first heard in a Polish class in high school, in the stuffy attic room that was as theatrical as our teacher. When he read this passage from Calderon de la Barca’s ‘La vida es sueño’, it sunk in.
My life crawls. Days take years, hours take months, and minutes – sometimes eternity, weighed down by joint and back pain, head-heavy from not sleeping for years. Outside spring again, but inside – emptiness.
I never asked to be different. I didn’t choose to be fragile in the world made by and for sharks. I didn’t purposefully make anyone’s life difficult by my existence. Why is the world trying to make me into a shark then?
I don’t wanna be a shark. But I’d like to swim, too.
Why did I even start writing today? Coz the daily horoscope told me to ‘tap into my creative side’. Talk about guidance in life.
How about a riddle? Septic tank full/borderline overflowing. Can be taken by a local company that only accepts cash. Closest ATM – approximately 3km. I don’t own a car or drive. No friends to help. Decision?
Use dishes until the last cup standing and not shower for a day. Or two.
A riddle: how can one be so passionate about feeding others but fail to feed oneself? Toastie for lunch day 4.
Oranges peeled: 2. Cuts: 2. Craftsmanship level: efficient.
These crumbs of text were intended to become a Twitter feed about beating depression one lunch at a time. It never happened. Both, the feed and the lunches. Many other things didn’t happen, too. I didn’t know how to write about food anymore. Or how to eat.
At first, I thought I could stall. It’s another bout of depression, I thought. It’ll pass, I thought. This time, however, I couldn’t run, like I always did, immobilised by things that were out of my control. At 31, soon after losing yet another job due to – now I know – poor social skills and sensory overload, I realised I might be autistic. At 33, I was finally diagnosed. Finding out about being autistic felt great, like discovering a map that explains how my brain works. What came after, however, was a lonely and arduous journey, with no clear path or guidance.
Autistic burnout is real. Having crashed head-fast into a wall of yet another misunderstanding one too many times – my body gave up. From a highly functional (although weighted down by anxiety) human being, I turned into a barely-thinking goo. With the help of family and friends, I managed to escape the city and install myself in the countryside. Here, forgotten by the universe, I was trying to navigate the world with this new compass in hand – learning what it means to be autistic.
There are two words that best describe my experience during these past two years: confused and hungry. The circumstances I found myself in helped reveal just how insufficient I was in feeding myself: food became a big problem. And not because I had zero money for it. Or I didn’t know how to cook. The stove was there, and so was the cooking knowledge – but the skills were gone.
I have become a cook who can’t feed herself.
There were many days when I forgot to eat entirely. First meal at 6pm? Sure, let’s have it with the first sip of water this week. Oh, and quickly, because I feel sick from not eating. What’s on the menu? A banana, perhaps, an appetiser before my ham and cheese toast is ready. No bread? Let’s go for instant noodles instead. No noodles? Oh well, how about plain rice crackers that had been sitting at the back of the cupboard for months? They’ll do.
Preparing a meal is a many-step process, and for someone who exists in survival mode – a task often unsurmountable. Say you want to make something to eat. You check the fridge and cupboards first. Then try to come up with something to cook with these. Now, on to washing up the dishes, that had been in the sink since the last time you succeeded in cooking something. Dishes are done, the kitchen is ready for cooking. Missing ingredient? Consider no shop within a 3km radius, no friends to call and ask for a drive, family too far away to request favour and social anxiety so bad that walking there is not an option (25 minutes, if you ask, I did walk a few times). At this stage, I’d often give up and settle for instant noodles (if I had any), as by then my brain would be like a browser with too many tabs open – frozen.
Food shopping? What a joke. I wish I could ask for CCTV footage from any supermarket I visited, just to see the look on my face when my brain goes blank from the sensory overload. My usual visit? I walk in, I am blasted with the lights, attacked by the sounds, I stare at the shelves and think to myself: ‘What do people actually eat?’. I usually leave with random things: some bread, cheese, tomatoes, chocolate – you know, so I buy something. Back at home, I realise I didn’t actually buy anything of substance, and that realisation dawns on me together with another one: it will be a while before my next visit to the shops.
How to explain to people that when I feel okay, I can plan and prepare a three-course dinner followed by an elaborate dessert, but cooking for myself, or even remembering to eat, is beyond me sometimes? Nobody believed me at first: how come a cook can’t cook?! No one around was willing to understand how this food freak they used to know struggles to eat now. It’s not rocket science to make a simple soup, they said. The thing is, when executive dysfunction kicks in, being able to navigate through the day is comparable to climbing a mountain. Try that daily.
It’s bewildering how indifferent people can be when faced with an adult who needs support with such simple daily tasks as washing the dishes or making a meal. Requests for help are often dismissed with ‘Come on, don’t be a princess’ comments, and statements like ‘I haven’t had a warm meal in a week’ swept under an awkward smile. It took a while for my family to realise that I really need help with food: I cannot express enough how life-saving their home-cooked lunches were. And even if they were occasional, I know I am lucky. I survived because of a collective effort of many people, who decided to believe me when I said that feeding myself was beyond me.
I’ve had a lot of hours to think in this house in the middle of nowhere. Stormy weather is best for thinking, and there were many storms during my time there. When the fire was crackling away, basking the room in its flickering light, the wind was ravaging outside, carrying waves of heavy raindrops that attacked the roof like pebbles – I felt like I was on a boat in the middle of the ocean. The loneliness was so real, I could almost touch it – but then came kitty, proud in her fluffiness, and settled on my belly for her evening shower. Life gains meaning when it’s shared, but oftentimes the environment for sharing is not within safe waters.
I wish for the world to be a safe place for everyone, however fragile or strong. Measuring one’s worth through the lens of productivity or creating unspoken rules about things everyone should supposedly just know, are poor standards. I grew up believing that I am worthless when not productive. That I have to be strong and suck it up when necessary. That taking a day off is bad, and going to work when ill is okay. I pushed myself for 30 years, trying to fit into the impossible standards until I finally crashed. Unemployed, ankle-deep in debt, depressed and surrounded by people who didn’t want to open their minds enough to listen – I escaped. I was not fit for the pressures of society. I craved softness. It was the online neurodivergent community that offered a hand – and I liked their corner of the web. It was kind.
To me, kindness means being open to different ways of existing in this world. Cultivating kindness makes us more aware of our surroundings: we might notice that, for many, it is not a given to have something nutritious to eat daily. We might see that some sustain themselves on instant noodles because that’s the only thing they can eat or because they never learned how to cook. We might realise that not everyone has access to the shop to get ingredients. Or means to purchase them.
It is not up to us to judge eating habits, call people lazy or expect them to get it together because everyone else does. But we can invite someone to join the table instead, in whatever way they find comfortable. Cooking together, ordering takeout, sharing a home-cooked meal – are ways in which we can show love to those around us who struggle to navigate the everyday.
Good nutrition is critical for wellbeing: we know it when we buy cat food (oh, the shiny fur after that 100% meat sachet), but in times of crisis – it often comes last, and even more often – not by choice. I’m here to hope that feeding oneself can become a part of life that brings joy, not anxiety. And I’m here to be grateful: for all the food someone cooked for me, for every meal that I am able to cook, and for the meals I can share with others. Food is love, and cooking is a language we can all speak. If we try.
I am so grateful that you shared this with us. I am going through a very similar situation, but I am not able to put it in words yet as you did. The way how you described your struggle touched me to my bones and to each cells of mine. I feel it so deeply. Thank you for speaking up about yourself and your painful experience so honestly. I respect it so much and it gives me a lot of courage, also releasing a lot of shame in me. I wish you (and all of us in the same shoes) to find our waters to be able to swim. Blessings and love, Mariann
What you say here does resonate: having the skills to cook versus actually marshalling strength to do that cooking – they ARE quite the different things aren’t they? Or the ability to write versus finding it in oneself to do so. Some days, even checking mail (physical or otherwise) could be insurmountable. I cannot imagine how hard it must have been, but I hope you find strength in your next move. Your posts are fantastic and insightful as always, and yes, those Nong Shim bowls really do hit the spotI
Reblogged this on Ilios art and commented:
I would love to reblog this post from a lovely food blog I follow. It is however an “irregular” post about food, but talks about it from an incredibly important angle. If you look at meals as a form of care and love and nutrition of body and soul, then you will be able to understand how cooking for ourselves is a form of self-love, self-care, nurturing our own body and soul, maintaining the bond with our Mother nature. Which sometimes is not possible at all – even if some people doubt it. This writing touched me to my bones. I am deeply involved in the struggle described by the writer. I just haven’t found my energy and words yet to talk about it. Until that I let these words to talk instead of me. Read only with an open heart.
I found your site from looking for a poppy seed recipes, but I lingered, intrigued by your writing. I don’t think I am autistic but when my husband left for several months to do some training in another city and I was left living alone, I found that I oscillated between eating elaborate homemade gourmet meals every 4 or 5 days, to barely eating toast on the gap days. I love food, but I don’t always love making the effort. I had never previously realised what a steadying influence it was to have other people around to make cooking feel worthwhile. I think we all regulate each other and that’s okay. You will find your balance and the relationships you need too.