As death doulas, we learn that it is normal for people and families to enter a phase of anticipatory grief on learning that their loved one has a terminal illness.
I think I might have been dealing with this my whole life, at least in my head. As my mother will tell you, I was always a “worrier” (In Scotland we call it “worry”, in Canada, we call it “anxiety”). I worried about all the bad things that could possibly happen to the people I loved. I worried about my kids’ first day at school. I worried about them becoming terrible teenagers. I worried about them leaving home. I worried about them getting driving licenses and into car crashes….And that was before I even had kids!
(Please understand, well-meaning friends, that telling someone not to worry about something because “you can’t change it” does not help.)
Anyway, in 2006 my husband suddenly began feeling unwell and was diagnosed with an acute form of leukemia. I remember thinking, “This is what I’ve been training for!”. But it wasn’t that simple. The feelings were complicated. When I discovered we were on a rollercoaster with no driver, my gut instinct was to jump off. Or at least make it stop somehow. We had a 2 and a 4 year old at home, and my family support system was in Scotland. Our lives had been turned upside down, and I felt frighteningly out of my depth.
On one of many my drives down the DVP to Princess Margaret Hospital, I decided to channel my anxious energy into something positive. In that moment, the Mad Hatter’s Walk for Leukemia Research was born. It was important for me not to be consumed by my husband’s illness, and this provided a much-needed outlet for both of us. It became an annual walk at Fairy Lake in Newmarket, and over 3 years we raised over $120,000 for leukemia research.
Of course the Mad Hatter’s Walk was really just a diversion. I discovered along the way that I could not fix or stop my husband’s illness from progressing, and that he would be journeying on alone. There were many ups and downs, but he eventually died in July 2011 at the age of 50.
Through the pain and disbelief, there was one thing, one analogy, that stuck in my mind. My twin sister Sarah described it to me. She said something like, “Imagine you have a huge rock inside your heart. The pain is unbearable but you have to carry it everywhere you go. Every waking moment you can feel it, and it hurts. Over time (and it may take a long time) the rock starts to shrink, little by little. As time passes, the rock continues to shrink, until sometimes you almost forget it is there. Eventually, you will become so used to it that you just accept it as part of who you are. You will understand that it is there so that you never completely forget. It will never disappear completely, but you will be able to find peace in just knowing that it’s there”
Sarah was right. My rock is still there, but it is tucked away safely.
If you need grief support, please reach out to me.