I was twenty-eight years old when I was diagnosed with Relapse Remitting Multiple Sclerosis. When our daughter was born I was thirty-two and thirty-five when I started using a walking stick.
Her earliest drawings of ‘My Family’ include a stick figure mummy with a cane. She once picked up a big branch in the park and used it walk alongside me, because then we were the same.
When she went to preschool, and wanted to run off along the road, I let her go leaving her with important words.
“If you run into the road, I won’t be able to chase after you. Have fun, but take care.”
The result, I have a child who is an adventurer, a risk-taker, who wants everyone to follow the rules and is very vigilant at crossing roads.
My parents used to live in the Middle East, and I quickly learned how to say in Arabic “my legs don’t work very well”, in answer to the frequent questions about my stick from kids there. Until my daughter was five, we didn’t really need to give it a name – it was just how things were.
When she started school, and became more aware of the differences between parents, the questions started in earnest. One lovely evening that will be forever fixed in my memory, we were in her pink bedroom surrounded by teddies and she asked me:
“Why don’t your legs work, mummy?”
“I have MS.”
“In your legs?”
“That’s where I feel it, yes.”
“I’m going to squeeze that lemon juice right out of your legs.” Then she began massaging my legs, smiling up at me.
Since then, we’ve had more conversations, often touched by her own sense of grief and anxiety. When she was nine, she had deeper worry about MS and her own future, so we connected to the family team of neuro-psychologists at the Oxford Centre for Enablement.
With the support of her school, my daughter and her beloved doctor worked on understanding MS, handling her worries, and why it’s great to be a kid and not be responsible for everything. Together they gave a presentation to her class about multiple sclerosis – an especially courageous thing for her to do after some kids had teased her about having a mum who walked like a zombie.
Since then, we tell the truth, the right way for her age. We share a faith perspective that gives hope in suffering, while being realistic about the present. We don’t talk about potential signs of progression, or future-proofing the home.
That’s because we make sure she’s the kid, with us adults being responsible for decisions. My husband and I share our own grief and worries with each other. Some of my abilities will change gradually and without fanfare.
However, we communicate with school. She carries MS in her heart as an ongoing trickle of grief that sometimes wells up in her. She’s known as a loving, emotionally intelligent kid, who sometimes needs an extra hug or reassurance. When we started talking to school more openly about this, it got better for her.
But just for us, no matter how sophisticated our understanding grows to be, Lemon Juice will be forever our family nickname for multiple sclerosis.
Do you have a nickname for MS? Have you told your children’s school that you have multiple sclerosis?
You may also enjoy reading: My Mommy, MS and Me: A Book to explain MS to Children
Rachel Lane lives in Oxford, UK, and runs her own business coaching leaders in non-profit organizations. She is learning to live well with multiple sclerosis, and is the home-loving creative one in a family of thrill-seeking activists.