Me, FD and The Baby-Sitters Club
Tully Zygier works in Communications at VALID, one of the peak advocacy organisations for people with intellectual disabilities in Victoria. Tully was part of our International Day of Disability celebrations in 2020, with this story reflecting on her tween years coming to terms with Familial Dysautonomia published by Writers Victoria and Brotherhood of Saint Laurence on our websites. You can find more of Tully’s writing in Black Inc’s recently released anthology, ‘Growing up Disabled in Australia’.
When I turned eleven, I started attending counselling sessions. Once a fortnight, I sat in a musky, windowless room of wall-to-wall child psychology books and medical journals. This was my sanctuary. For fifty minutes, everything stopped. I didn’t worry about my peers staring and commenting on my appearance. I stopped feeling like my teachers were hounding me for not completing assignments. My mind stopped dwelling on my disability. And freedom of all freedoms – my mother stopped worrying about me. I was finally content and comfortable in my own skin.
Every two weeks, my therapist sat in his well-worn, mustard-coloured armchair and observed as I sat cross-legged at his wooden coffee table writing my stories into an A4 notepad. We established early in my therapy that talking about my issues wasn’t going to be the best option for either of us. At eleven, it was hard for me to find the words and concepts to articulate my frustrations about living with a disability. It was hard enough being on the cusp of my teens without being dragged down by a chronic illness like Familial Dysautonomia. That’s how I started to write my stories for the very first time. This little room was my safe space. Here I lived out my fantasies with paper and pencils. No censoring. For fifty minutes, I was a writer creating a world in which I was the lead rather than one of the extras.
Halfway through my stories, my therapist would always ask me a question: ‘Where is your story heading?’
Back then, I said, ‘I’m hanging out with the cool kids’. Am I still trying to head in that direction today, as I continue to write my story?
Back then, I was obsessed with the Baby-Sitters Club. Reading those books, and writing my stories, I became one of the girls getting together after school and gossiping about their day. I went on adventures with them. We talked through problems and supported each other. When one of us met a boy we liked, we dissected every little detail about him, and came up with schemes to run into him accidentally, and make him finally notice her (in my mind, me).
Once those precious minutes came to an end and I had to exit from the storytelling to the reality of my mother’s car parked out the front waiting for me, an old familiar feeling came to hang out uninvited – nausea.
As I stood at the curb waiting for the traffic to clear so I could cross the road to where my mum was parked, I once caught a glimpse of her wiping a tear from her eye. I wondered if it was over the book that she was reading – ‘The Joy Luck Club’ – or if it was for me. The fortnightly drive to my therapy session, the fifty-minute wait and the unnatural solitude for this gregarious woman surely percolated her worry about me. I know it wasn’t my fault, but I couldn’t help feeling guilty as I watched her.
She never drove me straight back to school, post-therapy I was vulnerable and she knew it was too soon for the schoolground looks and stares and whispers. What I needed was cheering up. For her, the most effective therapy for cheering up a sad soul was food, glorious food, and what better place to lift my spirits than University Cafe in Carlton, where the spaghetti bolognese was to die for. Without a word, she turned on the ignition, hit the accelerator and we headed to our fortnightly haven where the spaghetti bolognese would, without failure, make me swoon with a red-hot flush of delightful joy. Mum, on the other hand, would always choose soup of the day to keep the calories away, but she’d inevitably sneak a slice of bread (or two) and a lashing of butter – that’s when her joy and delight would kick in and align with mine.
But I knew The Question was coming. Mum would finish her soup, put her spoon down, and her eyes would rise to meet mine. ‘So, Tully, what did you talk about in therapy today?’
Glum twirling of my fork in my spaghetti quickly replaced happiness.
Keep it together. Don’t lose it here in front of a room full of strangers. Don’t lose it in front of Mum. Talking about it just brings me down.
Mum gently coerced me on. ‘I know it’s hard to talk about it but it’s better out than bottled in.’
I don’t want to talk. I want to be part of Baby-Sitters Club. I want a group of friends to spend my afternoons with instead of sitting in my bedroom binge reading and living life through other people’s stories.
Mum leaned over to caress my cheek. ‘Hey darling, what’s going on in your head?’
‘Just my obsession with the Baby-Sitters Club.’
‘Why are you obsessed with those books?’
‘You know, the antics they get up to seems like so much fun.’
‘What kind of antics?’
Chasing boys. Oh, how I wish that boys looked at me the way the boys look at Stacey and Claudia. If only they could look past my frizzy hair, my freckles, my scrawny legs.
‘Tully? What kind of antics?’
‘Just kids being kids. Having fights and going to slumber parties and…’
If only I was invited to slumber parties. If only the kids in my class thought of me as their equal.
‘And nothing, Mum. I just think it’d be cool to be part of a club like that.’
As if that is ever going to happen.
Mum fell silent. She’d always been one of the girls in the popular clique. What could she possibly say to show she understood me?
‘Oh Tully, I wish I understood what you’re going through. I wish I could help you. I wish the kids at school could see you the way I see you. I wish I didn’t carry FD. I wish that I didn’t give it to you. I wish you didn’t have to go through this.’
I kept my eyes on my spaghetti, knowing I was going to cry. I don’t cry tears like everybody else. That’s how it is with FD. Instead of tears, I get hot flushes of emotion; and at that moment of recognition, it was sorrow.
Mum took my hand and brought us both back to reality: ‘Eat up Tully, you need the energy to go back to school and face the day.’
What I really need is a new, functional body to help me face every day. Spaghetti energy isn’t going to make that happen.
‘It’s fine, Mum. I’ll be okay,’ I reassured her, my eyes still focused on the spaghetti.
‘We need to go shopping this week, Tully. We need to buy bathers and clothes for Byron Bay. Maybe some shorts and a cute little dress for dinner? Or how about the pink and red striped dress we saw last week at Myer? It would look lovely with your white sandals and white headband.’
As if a pink and red striped dress is going to cover my small breasts and my back-brace. People will still see me.
‘I have enough clothes Mum.’
‘Which reminds me…’
Mum kept talking. It happened whenever we got to the moment of truth in our conversations – the moment she faced the fact that she couldn’t change things, and I needed to handle it myself, in my own way.
‘You need a haircut before we go. Do you want a coffee? Why not get a danish? Maybe a chocolate brownie? Nothing too big, just a trim to get rid of the dead ends. It will frame your face and give your curls more definition. It will draw attention to your beautiful hazel eyes.’
‘My hair is fine mum. I don’t need a trim…’
Mum kept talking. ‘You really do need to eat more, sweetheart. If you ate more you would have lots of energy and wouldn’t get so tired by the end of the day. Let’s grab the waiter’s attention so you can order something else.’
‘No mum, I’ve had enough…’
‘But we need you to keep your energy up and your fluid intake. You’re not drinking enough water. Here, have a glass now and I’ll order some dessert.’
Poor mum, your job is to support me but no matter how much you try you are always going to fail because I’m on my own in this.
‘I’ve had enough to eat. You don’t have to keep pushing me. I’m okay, Mum.’
This time she listened. She took a breath and waited for me to finish the last strands.
As I lifted another forkful of spaghetti I couldn’t avoid looking up at my mother, and I saw something about her that I never noticed before. She looked helpless. All she could do was offer me a chocolate brownie.
‘You don’t have to eat the brownie now but we’ll have it later.’
‘Yes, let’s, Mum. That’d be great.’
I couldn’t help but smile at her foodie-therapy. For all the sorrow within, I was always comforted by her presence across the table.
Food was her way of saying, ‘everything will be alright’.