Be More Kind

This year, I:

  • Survived my 10th year with ME/CFS
  • Raised $2000 for homeless ME patients
  • Wrote 50000 words on my memoir
  • Created the Severe ME Bedbound Activity Masterlist
  • Saw my disability writing reach further than ever before
  • Did more advocacy work than ever before
  • Looked after myself as well as I could
  • Looked after other people as much as I could.

And the decade was pretty memorable too, even if most of the memorable bits happened when I wasn’t so sick. I lived in three countries; I got a degree in Chinese; I had poetry, short stories and translations published; I performed my work on stage. I sang in choirs and celebrated festivals. I reclaimed my autism and came out as bi. I got married. And on and on under the glitzy bits, the fight. I got twelve of my fifteen diagnoses in the last 10 years. I saw more doctors than I could possibly remember. I got sicker and sicker, chasing answers wherever I could find them. And eventually, I retreated to my bed, and adapted to an entirely new life.

I’m writing all this out because when your existence is a well-worn groove between the bed and the toilet, it’s important to remind yourself that accomplishments do happen. Last year I made three New Year’s resolutions: to spend a week or two in bed, to start doing image descriptions, and to teach my carer how to recycle. I rather overshot the first one, as I relapsed and spent an entire year in bed, and we ended up getting a new carer who knew how to recycle by herself. But I did do the image descriptions. Despite being stuck in bed, despite feeling powerless to effect the world, this year I moved the dial just a tiny bit towards change.

My New Year’s Resolution for 2020–for the whole decade to come–is simple. It’s “be more kind”. 2019 was the year I realised the key to overcoming most things is compassion. It was the year I starting trying to be there for the girl inside who was hurting. And that self-love, that commitment to be kind to myself, gave me the strength to go out and help others. I’ve come to believe that being kind is one of the most important things we can do. And kind doesn’t mean passive and it doesn’t mean fluffy. Kind means fighting for what is right. It means being an ally when allies are needed. Worn correctly, kindness is a shield.

In the decade to come I’m going to be kind to everyone who needs it, including myself. I have lots of other goals, of course, but it seems to me just about all of them have the same first step: being kind. Being kind is how I’ll combat my mental illnesses. Being kind is how I’ll cope with being stuck in bed. It’s how I’ll write my book and do my advocacy work and look after the people I love. It’s how I’ll help turn the world towards change.

Happy New Year, everyone. And a happy new decade. May it treat you with the kindness you deserve.

❤️
Sarah

(Image description: Drawing of a rough square that turns into two hands holding each other. Beneath them are the words “Be More Kind”.)

Seeing Carrie

Three years ago, Carrie Fisher passed away. The force of nature that taught me to embrace my crazy was gone. I had always loved Leia, as a princess and a general, but the person behind the buns meant so much more. It was Carrie who showed me I was bipolar, and it was Carrie who showed me that that was okay. I never met her, but I mourned for her like a dear friend.

Three days ago, I left my bed to go see Star Wars. I wasn’t well enough, but I didn’t care. It was Carrie’s last movie. I took the Princess Leia plush my Mum gave me, so she could see what a good job she did in the film. I was falling apart with exhaustion, but I was spellbound. I teared up every time Carrie came on screen.

I am so grateful for the legacy Space Mom gave us. So grateful for her books, and her films, and the gift of her personality. So grateful for everything she taught me about being gracefully crazy. And so glad she got a last showing as General Leia Organa, the role model I never knew I needed. Wherever she is now, I hope it’s a party and someone just gave her glitter. I hope she does what she did in life. I hope she gets it on everyone.

Photo of a white woman with brown hair wearing orange ear defenders and a black coat sitting in a wheelchair. She is holding a small Princess Leia plush. Behind her are two illuminated posters for Star Wars: The Rise of Skywalker.
Stuck in the middle with Carrie.

Christmas By Light

If I could be any house
I’d be the Christmas house
on my corner, a beacon
that comes out once a year
to show people the way home.
I’d cover myself in fairy lights.
I’d wrap my feet in shiny paper.
I’d pinch my nose till it was glowing.
I’d dream of summer snow.
And I’d be Christmas for all of you,
I’d be Christmas right up to the moon.
And the blush of light would hold us
like a snowglobe in somebody’s palm
and all around our huddled forms
would be a trembling, sparkling calm.
And when the decorations were packed away
I would keep shining in the dark.
Lighting up the hopes of those who pass,
showing those hopes for what they are:
the fairy lights of the heart.

–Sarah Stanton

An Edwardian townhouse lit up with fairy lights. The shape and windows of the house are bordered in lights, two large wreaths are illuminated below the windows, the trees surrounding the house are also lit up in lights, a large ballerina is lit up with blue lights in the first floor window, and the garage door is wrapped with shiny red wrapping paper.

Why OCD Makes Social Media Hard

(Image description available on original tweet.)

In case you’re wondering,

That cute little post about my Christmas decorations took me three days to make. One to take an obsessive amount of photos (and you know when I use that term I mean it), one to agonise over which photos to post, and one to actually edit and post them. I spent around 5 hours editing yesterday, OCD building in me with every breath. Yes, it takes me 5 hours to edit 3 photos in Instagram. I had to make sure the photos were symmetrical, that they were “perfectly” edited (including photoshopping out a barely-visible cup stain), that I really had chosen the right combination of photos–in short, that there was nothing “wrong” with them, no tiny mistakes that might make people hate me, which is what my OCD thinks will happen if I am less than perfect. I am already going through a major C-PTSD flashback, and with the OCD on top (fun fact: OCD is actually a survival mechanism my brain developed to cope with C-PTSD) I can easily get stuck in a loop.

It’s hard to describe OCD, but I say it feels like a tooth loose in the world. You know when you have a loose baby tooth, and your whole mouth feels kind of wrong because of it, but you just can’t leave it alone? And even though you know it’s bad for you, you’re compelled to wiggle it until it comes free? OCD is like that. It’s severe distress because a photo is a few pixels off symmetrical. It’s hours revising a single tweet because the words just don’t feel “right”. It’s days spent editing a Facebook post because an imperfection would mean the end of the world. Even this post has taken most of a day to write; has been agonised over, perfectionised, extruded out of me painfully and slowly to comply with all the irrational demands my brain forces me into. Writing is a torturous process for everyone, but OCD kicks that into high gear.

It’s important to me that people know this isn’t easy. Social media is like permanent exposure therapy for me. I know nobody will REALLY hate me because I make a typo or a photo is a tiny bit off centre. But my brain is very good at convincing me they will. I love sharing the way I do–as a bedbound person, it makes me feel like part of the world–but after that day, when I screamed and sobbed for hours over three small pictures, I want to be honest about how much it takes out of me. Anything you have ever seen me post has been dragged out of me like it was my guts. It actively hurts me to do it. But I’m compelled to do it, again and again, because this is how I feel seen. I could have just not posted those photos. I could have given myself a break. But I don’t want OCD to make me more invisible than I am.

Roasted Red Pepper Sauce

This recipe draws heavily from Em Schwartz’s Low Fodmap Red Pepper Pasta, to whom I am exceedingly grateful. Desperate for a replacement for tomato sauces, I’ve been trying to find a good red pepper sauce recipe since I started eating low histamine in early 2018. Just roasting and blending red peppers leads to a sauce without any real depth; in this recipe, the pumpkin and milk add body and richness. I also add roasted carrot and celery to round out the flavour. They are my standard substitutions for onion.

Ingredients:

2 carrots
2 sticks of celery
4 red bell peppers
2 tbsp olive oil
1/3 cup canned pumpkin puree
1 cup milk of choice
1 tbsp tapioca starch or corn starch
1/4 cup of fresh basil leaves, chopped
Salt

Method:

1. Preheat oven to 425 degrees.

2. Cut the red bell peppers in half and place on a roasting tray. Peel the carrots, then chop carrot and celery into 1 inch pieces and place on a roasting tray. Salt and drizzle all vegetables with olive oil.

3. Roast the red bell peppers, carrot and celery for 20-25 minutes or until pepper skins are wrinkled and carrot and celery are soft.

4. Finely chop basil leaves.

5. Place red peppers, carrot, celery, pumpkin puree, milk, tapioca starch and basil leaves into a blender. Blend until smooth.

6. Pour sauce into a large skillet and heat over medium-high heat, stirring occasionally. Once sauce reaches a simmer, reduce heat and continue to stir until it just slightly thickens.  Salt to taste.

This sauce can be used over pasta (I use Tinkyada brown rice pasta), as a component in Chicken Parmigiana, or as a great side sauce for meat.

Bedbound Meditation #1

Grow flowers in the garden of your bed with your mind. I know you’re not really in a garden. I know you sweated through your sheets yesterday and you spilt soup on your pillow last week and you’re still too exhausted to clean it. But today we’re going to make it a garden, because you are beautiful, and you deserve gardens.

Close your eyes. They were probably already closed, but–close them. Feel yourself from the tip of your scalp to your toes. Give those toes a wiggle, if you can. If you can’t, imagine giving them a wiggle. Feel them dig down into the squirmy earth and come up gloriously dirty. Not the dirt of a month without showering, but the dirt of living in the world. Build the loam up in your mind; it’s good earth, and you get out of it what you put in. So make it rich, caked with nutrients, aching for seed. Make it ready for the world you are about to summon out of it.

Now for the flowers. I like sunflowers, geraniums and star lilies, but you do you. Lift your hand, or imagine lifting your hand, and let the seeds spill down onto the earth of your bed. I like chaos, a riot of colour blooming around me like it were growing out of my grave, but your garden should always, always be what you like best. You can add a little fertilizer, a little rain. I’m sure you know deep down inside what will make your flowers bloom.

And now lie back. Or, you know. Stay lying back. But either way, relax. And listen to them grow.

Because this is the secret of your body. It doesn’t have to be up and doing. Even the deep ache of a sick life can make a garden grow. Those flowers are called Hope. Self-compassion. Resilience. Significance. Worth. And you have been growing them every day since you took to your bed. All we are doing now is putting faces to them.

I’m picturing you now. Arms outstretched like a queen. Hair splayed out at wild angles. Sick. Hurting. You haven’t sat up in a week. But your bed, ah, your bed. You are sailing on a sea of flowers. You grew them. You built this garden up out of the hardest soil. And even in the smallest, most hopeless hours, they will never, ever leave you.

Low-Histamine Chunky Pumpkin Soup

Earlier this year I got a new carer, and one of her first tasks as an enthusiastic cook was to come up with meals I could eat without provoking an MCAS flare. Since my MCAS reasserted itself in 2017, I’d been down to a safe list of around 10 foods. (These days I can eat around 20.) Anything else caused hives, itching, stomach problems, and psychiatric symptoms. I’d been eating the same thing for every meal for months, and the thought of it was starting to make me gag. I had to get more creative. On my first session with my new carer, I wrote out a list of ingredients I knew were safe for me and we pored over it together like pirates with a treasure map. I suggested some kind of vegetable soup, and this is what she came up with. It’s delicious, it’s healthy, and it doesn’t build up histamines so rapidly, because it’s vegan. I’m even able to eat leftovers of this one.

Ingredients:

4 carrots
1 parsnip
Half a bunch of celery
3 potatoes
Half a butternut squash or kabocha
1 sprig rosemary
2 sprigs thyme
3 leaves sage
1 29oz can pumpkin puree
1 tbsp olive oil
10-12 cups water
Salt

Method:

1. Slice the carrots and parsnip lengthways and chop into 1/4 inch pieces. Slice the celery into 1/4 inch pieces. Peel butternut squash if using (it is optional to peel the kabocha.) and cut into cubes.

2. Heat olive oil in a large saucepan over medium heat.

3. Add the carrots, celery and parsnip and sautée for 5 min.

4. Add 10-12 cups water, depending on desired thickness of soup.

5. Finely chop rosemary, sage, and thyme, and add to the pot.

6. Let the soup cook on medium heat for 10 minutes.

7. Add the cubed squash, and cook for a further 30 minutes.

8. Add the potatoes and salt to taste. Cook for a further 10 minutes.

9. Add the tin of pumpkin puree to the stock and turn the heat down to low.

10. Cook on low for 5 more minutes, adjusting salt levels as needed.

11. Serve.

Makes 6 serves, which can be frozen. Mine go into the fridge to be the next week’s meals.

A bowl with a white and orange pattern, full of chunky orange soup, surrounded by five tupperware containers of the same soup.

Leaves And Bees And Hope

Four walls deep in the world I lie
A wildling from a wilder time,
The thought of it is how I cope:
All covered in leaves and bees and hope.

Four miles deep in the woods I walked
And listened to all the birdlings talk,
A sparrow telling its friends a joke
All covered in leaves and bees and hope.

And when I came out of the woods,
I did not think of cans or shoulds,
I thought of how the froglings croak
All covered in leaves and bees and hope.

And when I had to go to bed
I kept the woods inside my head,
A seedling–no, an envelope–
All covered in leaves and bees and hope.

Now four walls deep in the world I cease
A wildling wrestled down to peace,
I think of lovely things to cope:
All covered in leaves and bees and hope.

–Sarah Stanton

(This piece plopped out of me after I described a dress I own as “covered in leaves and bees and hope.” I thought about all the time I spent out in nature as a kid, and how much I miss being part of that world now I’m bedbound. But it’s not like it’s gone–it’s still there, in my head. And even though I miss the experience, it’s the memories that keep me going.)