Nikki Frittmann is a notetaker and reader/writer for students with disabilities at AUT University. She has Spina Bifida and lives in Auckland with her husband and two cats. Every second month she shares her musings with DPSN.
Once, when I was younger, I thought my name had been changed. I was always changing it anyway, almost every week I ended up naming myself after the latest music star, radio DJ – even after a member of the royal family, at one stage. But this name was different. It wasn’t even a normal name. The name was “don’t nod”. That was the name I seemed to have been given by my parents, other adults, even sometimes my friends.
So why this weird name? It came from my habit of rolling my head around and around, randomly, as if I wasn’t in control of my neck muscles. “Aren’t you dizzy?” people would ask. Nope. In fact, I found I got dizzy when I didn’t move my head, probably because I was so used to it moving. Most strangely of all, often I would stop when somebody told me off for it, then a few seconds later, start again. Nobody, least of all me, knew why I did it….and I didn’t always know I was doing it either.
My mum, concerned for my health, talked about it with my neurosurgeon. His answer was that it was just a habit. So, being the good mum that she is, she set about trying to help cure me of it. Every time she caught my head starting to move in what, to her, seemed a strange and unusual way, she would immediately say, “don’t nod!”
Because of this, I grew up thinking of this “habit” as a bad thing. I would practice in front of the mirror balancing a book on my head, thinking somehow if I could memorise how it felt to walk with a still head, I’d eventually be able to recreate that feeling without the book balancing there. Eventually, I figured, it would become “normal” for me to feel like that when I walked along, and the “bad habit” would be gone. But it never happened.
Many years later, I saw a question on the Internet from someone with Spina Bifida. Did anyone else roll their head around? This person said they did it when they were tired, or not concentrating on “not” doing it, and that they wanted to know why it happened. Happy that I had at last found someone like me, I answered “yes, I do that”, and to my astonishment, a couple of other people said they did it, too. Which then left a question – how could we all have the same so-called bad habit?
Researching online, I have since found some people think this “nodding” has something to do with having a shunt – a tube that relieves pressure from the condition called “water on the brain” (or hydrocephalus – when fluid builds up in the skull and causes the brain to swell). While I still don’t understand it entirely, I know now that I’m not the only one who does it, and that all of us who do, have that little surgical device in our necks to thank for it.
But I wonder if this habit is really so bad? It doesn’t harm anyone. Certainly I don’t blame my mother for encouraging me to stop. She was doing what she thought was right, trying to protect me from the reactions of other people who might think my head-nodding strange (of course, she was never going to prevent negative reactions to other parts of my disability, but I guess she felt she should do what she could). Likewise, my neurosurgeon – a clever man who I respect hugely – thought he was correct in stating that it was just a habit, with no physical cause. Because in those days, that was the medical opinion on the subject.
But thinking back on this time from many years later, I have been asking myself whether there might be some good things about my head nodding. Here’s what I’ve come up with:
- It helps people to recognise me. Although I’m not a person who normally stands out, I’ve been into shops, workplaces, or just in crowds many times, and had someone come up to me whom I may have only met once before in my life, long before then, and say, “I remember you – the last time we met, we talked about blah, blah…” – and thinking on it, realised they were right, even down to the details of the conversation. Strangely, these meetings always seem to happen when I’m getting a bit tired, and perhaps the old head is doing its thing?
- It lets me get a wider view of the world than most people. Think about your day – when you walk along the street, where do you look? Straight ahead, most probably. I look all around, at the sky, the trees, the birds – even what’s going on in a wide view to either side of me. So it gives me a fuller experience of the surroundings.
- It makes a focus for my sense of humour about my disability. There used to be an old saying, “they’re on a nodding acquaintance with so-and-so”, meaning “they know each other well enough to give a polite ‘nod’ to recognise each other”. I like to joke that I’m on a nodding acquaintance with everybody I meet!
Forty years later, I’m still nodding. My mum and I live in different cities now, and I miss her. Sometimes, I’d give anything to hear her tell me “don’t nod!”. My husband never mentions it. For some strange reason, others people don’t either. Perhaps they’re just being polite. Or perhaps they’ve gotten used to me. Perhaps, with people with disabilities becoming more visible since the 1970’s, people are generally more accepting of all my quirks. I hope so.
Still, I don’t think I’ll ever be able to get away with robbing a bank. I’m far too unique for that.