Yesterday I went to an event in support of two incredible parents and their beautiful daughters Jaeli and Dali. The day was to raise awareness for syngap, a very rare genetic condition that both girls have.
I went to school with Danielle, their mother, but in the way that life happens, despite lots of mutual friends, I hadn't really kept up with Danielle's life and had no idea until recently about what she and her husband had been dealing with. Her daughters experience over 50 seizures an hour, hardly sleep and have impaired speech, autism, motor difficulties and behavioural issues. Recently, in Danielle's words, she decided to stop living a "double life" and finally revealed her "secret", being the serious nature of her girls' illness, to her work colleagues. Danielle works 4 days per week on 4 hours sleep per night and yet somehow for a long time kept what was happening at home a secret. Danielle and her husband Danny, with some gorgeous supportive friends, have launched a new campaign #secret4syngap to raise awareness of this rare condition and funding for research (details below). The team is asking people to write a secret on a piece of paper, post it on social media and nominate others to do the same. Their hope is the campaign will offer an emotional challenge, allowing individuals to share something they would otherwise feel uncomfortable sharing with others. In Danielle's words, "Something that no one else knows, except you, and could potentially help someone else if you shared it?" I laughed when I was asked yesterday to reveal a secret as part of the campaign. I joked - "pretty much my whole life is already on Facebook. What's left to tell?" And it's kind of true.... You all know already that I eat peanut butter straight out of the jar with a spoon!! But jokes aside, the afternoon got me to thinking more broadly about secrets.... what we choose to tell and what we choose to hide. And why.... Everyone has secrets. And some days it can be easier I think to live the life that people assume you are living than reveal the truth. I know there has been many a time when I've felt like nodding and smiling and making up something when someone I've just met asks me, for example, about what my husband does. But I don't. I always tell the truth in these private conversations. I write and speak publicly about grief and loss for the same reason: because I believe secrets and silence contribute to social isolation. The less we talk about difficult things, the more people who are dealing with them feel somehow "abnormal". It's as true for physical illness as for mental illness. For grief as for domestic violence. For the sometimes challenging behaviour of our children, as for the financial difficulties we can face. Often when we do talk about these difficult things, we speak in hushed tones. We worry that someone will give away our secret. We worry about our reputation. We worry that people will think less of us if we are seen to be "not coping". We worry so we say nothing.... and even when we choose to reveal our secret we worry that every conversation will somehow then be tainted in the awkward silence of the knowledge itself.... Hide the secret and people won't know what you're going through.... Reveal the secret and worry that people will avoid the elephant in the room - and possibly spending time with you altogether - for fear of putting their foot in their mouths... it can feel like a catch 22. So here's a secret I haven't yet revealed here but which is the basis for so much of my life now.... A long time ago, a girlfriends mother died. She was young and well loved and it was tragic. I went to visit and my friend was distraught. I remember feeling helpless. Not knowing what to do but just wanting to do something, anything, to help. She was crying uncontrollably and I said to her "is there someone I can get for you?" And then I realised.... the one person who could most comfort her was the one who had died. And I felt awful. I meant well of course, but what a dumb thing to say. I beat myself up for it for a long time and actually avoided other conversations with her because I felt like such an idiot. That conversation stayed with me for over 20 years. I remember thinking about it in the week after Matt died. I remember thinking to myself, I've said dumb things to others and people will say dumb things to me. Sometimes they will realize it afterwards and sometimes they won't. But mostly they will mean well when they say it. And I decided then and there to be open with my "secret", to never shy away from talking about the loss and to always speak Matt's name. I decided that having people say dumb and even hurtful things to me unintentionally was better than having them say nothing at all. That if I tried to put people at ease even when they said a dumb comment, perhaps they'd be less awkward when speaking to me or even someone else dealing with something difficult. That if I talked about what I was dealing with it might encourage others to as well. My perspective isn't the same as some people's, of course; there are many for whom speaking about loss or some other difficulty opens the scar anew. And it doesn't mean that some conversations and comments don't hurt me. I'm a natural introvert, and being open about how I feel hasn't always been easy. But I know that for me it's better to deal with a difficult conversation or two, than to live in silence and secrets. Life isn't always shiny/happy. But I think it's a lot easier to look up to the light if you arent hiding in the shadow of a secret. This picture is of Dali.... looking up.
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AuthorFiona is a writer, consultant to government and not for profits and former cynic turned yogi. Archives
June 2017
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