Slavery or freedom . . . We have a choice.

Emancipate yourselves from mental slavery;

None but ourselves can free our minds.

- Bob Marley -

Almost one year ago, our daughter was diagnosed with a rare genetic disease called Familial Dysautonomia (FD). Miriam was 18 months at the time and although she had curious health issues from birth, no one put the pieces together. Some symptoms of FP include: insensitivity to pain, inability to produce tears, poor growth, and labile blood pressure; vomiting crises, pneumonia, problems with speech and movement, difficulty swallowing, inappropriate perception of heat, pain, and taste, as well as unstable blood pressure and gastrointestinal dysmotility. She's had quite a few of these symptoms and, all in all, it's been a very all-encompassing condition, both for our child – and for us. FD is a syndrome that is specific to people of Ashkenazi (Eastern European) Jewish descent. It is also a complex neurological disease that is both progressive and chronic. Oh yeah, there is no cure.

Ironically, Miriam’s diagnosis was made right before Passover, a Jewish holiday that recounts the story of the Jews being slaves in Egypt and their subsequent emancipation. Why ironic? In many ways I felt that with the diagnosis, my freedom was taken away. The Miriam-Webster dictionary defines slavery as:

“1: drudgery, toil
 2: submission to a dominating influence”

Drudgery? Check. Toil? Check. Submission to a dominating influence? Check, check, check.

Part 1 of the story was being paralleled in my life and, as a result, the life of my family. We felt trapped, overwhelmed and, with our heads down, we submitted to a life of slavery, to being dominated by a disease that is beyond our control.

So what of Part 2? What of emancipation? I looked again to the story of Passover. Who gave Moses the strength to stand up to Pharaoh and say “let my people go!” It was his sister, Miriam, (ok, and God) who stood behind and beside her brother. It was Miriam who saw adversity as a stepping-stone to freedom, not a barrier. She was said to be an amazing woman, a prophetess and a midwife.

We weren’t thinking of the biblical figure when we named our Miriam, but it somehow fits. In order for her to be free, to face her challenges head-on and with courage, we have to emancipate ourselves, hence the lyrics from Bob Marley’s song.

This is a process that we are still working through and we can definitely use some coaching on how to do this. Still, there are few things that we did that have made a huge difference:

1. Accept help. I had to accept that I am super but not a superwoman.

2. Get help. We are fortunate to be able to hire a shadow/babysitter/nanny to help take care of our kids, the house and us. It’s clearly not possible for everyone but there is respite care available through various organizations, the CLSC, family and friends.

3. Take space with your partner or confidante. It took us months to make decisions. It was when we had a few hours to ourselves that we were able to share our feelings, articulate our needs and make decisions.

4. Take some time away alone. I think this is the hardest one for me. I always feel like I should be doing something. Back to superwoman? Perhaps. Just do it. Clear the brain.

Slavery or freedom? We do have a choice. And, do I feel like I am a slave in Egypt some of the time? Absolutely. Do I cry and rail at the unfairness of it all? Absolutely.

Then I choose.


Julie Kristof grew up in Montreal, lived in Toronto and Halifax. Now back in Montreal, Julie's husband Murray is doing his medical residency in anaesthesia and Julie is working in market research and communications. Murray and Julie have 2 children, Alex is 5 years old and Miriam is 2.5.