Why medicating with busy was cowardice.
I medicate my anxiety and my uncomfortable feelings (anything I want to avoid really) with busy-ness.
If I keep busy, then I don’t have to make eye contact with the trickery of my more difficult emotions. Now I know there are more damaging ways to medicate, but my body has begun keeping score. I am tired, my muscles hurt, my gut is in the type of shape no one wants to read about here. My body is screaming at me to stop it.
Sometimes in life there are some people you meet and feel an instant connection with. In children’s oncology it can happen a little more often than in real life. It’s a deep shared experience that bonds us.
I met Missy’s Mum, Anj, after Missy had won her battle with ALL and then been diagnosed with a secondary cancer. I feel a kindred spirit with Anj. We both refuse to accept our lot lying down, we work hard to make the kids oncology world a little lighter for ourselves and those around us. We both launched charities during our daughter’s treatment for cancer. I founded Bravery Box and Anj founded This Strong Mum and champions blood donation through Missy’s Donors.
Anj and I both live our own, unique story and don’t buy into the (sometimes) tempting day-time movie drama of it all.
Back into the trenches of childhood cancer
Talking to Anj about taking her family back to the front line, back into the trenches, she was so optimistic about their ability to do this. There was no talk about winning the cancer battle. There was talk about building safe spaces, about knowing how to manage their time and their feelings, how to manage the pain and illness. There was talk about being far more emotionally equipped this time around.
Missy died. The whole family put in a massive battle and if love and optimism and joy and gratitude and community could cure, Missy would still be an angel on earth. Instead, the heavens won themselves a magnificent angel and the world has dimmed. Missy is 13 forever.
This may appear to be a story about Missy and Anj, but quite selfishly, it’s a story about me.
I’m on my knees with the news of Missy’s passing. I’ve spent the last 8 weeks working on diligent self-care so I can continue to serve my children’s oncology community without burning out. I was burning out and I needed to either hand the baton on or find ways to look after myself better.
The news of Missy’s angel wings caught me unprepared. But being unprepared for this sadness has forced a self-care plan I’ve been violently resisting for some time.
Accept my feelings, let them in, spend some time with them and don’t force them away.
Before diligent self-care, the passing of a child in my community would send me doubling down on my efforts to make change. I’d announce new and ambitious directions for Bravery Box. Problem is I’ve doubled down and quadrupled down and there’s only so many times you can do that without coming a cropper.
So, in honour of my kindred spirit Anj and in honour of Missy I have begun spending time with my feelings. Quite surprisingly to me, it’s a different kind of medication. A more authentic and honest medication. A more soothing option than busy-ness.
For the first time in a really long time I’ve spent time crying. My sister often says she doesn’t see me cry, which is a puzzle to her when she thinks about the pain I work with and my personal pain.
I fight crying because I feel like if I start, I may never stop.
To my surprise I’ve begun crying and I don’t instantly fall into a hot, messy puddle. I feel my heart hurt and I let the tears come and the tears feel healing. I’d like to think it’s a dignified tear, gracefully sliding down my cheek, but it’s not that. There are tears and there’s snot, but it feels so close to my real self that I embrace it.
What I’d mistaken for strength – powering through and doubling down when things got tough – was actually a coping strategy at best, and cowardice at worst.
I’d power through because I am afraid of the depths of my feelings.
I’m learning that going with it, leaning into my feelings, making space for every one of them takes strength and courage.
I will no longer put a premium on the emotion happiness. I am trying to lean into every feeling. As I make space for them and try to welcome them, I am finding they all have jobs.
Sadness slows me down,
Sadness gives me a chance to feel closer to my friends and my family. The slowness gives me a chance to breathe deeply and spend some downtime finding gratitude and love. Slowing down also gives my panic hormones, cortisol and adrenaline, a chance to kindly turn themselves off.
Fear when your child is a cancer survivor is a daily staple.
Every swollen lymph node, every unexplained bruise, can be a battle to keep my calm and to not worry about relapse.
I’m taking this idea for a spin instead – I’m actually taking myself to the fearful place. If Lara did relapse, I’d want to be like Anj. Optimistic, full of love and determined to create safe spaces of care and community for my family.
Leaning into my fear helps me make imaginary future plans for a Tanya who can cope with that. Making those plans are actually going a long way to removing the terror from my fearful thoughts.
Angry and I go way back.
If you’re the parent of a medically complicated child and anger isn’t part of your emotional repertoire, you’re a bigger person than I am. Angry for me is often about loss of control and a lack of acceptance. I confessed to a friend recently that when Lara is general kid unwell, I actually feel angry. Not AT Lara, but at the sickness, how DARE it. Doesn’t it know what she’s been through? Doesn’t it know how many nursing hours I’ve clocked already?
When anger comes knocking, she’s got her reasons too. Anger is often a secondary emotion so when anger arrives, I look to what I might not be seeing clearly. Is it a lack of control? Is it a lack of acceptance? Anger for me often happens when there’s too big of a gap between who I really am, and who I am being in public. Anger is often here to remind me to close that gap.
So, in honour and Anj and Missy I am changing my ways.
I am leaning into my feelings.
I am exploring them and seeing what gifts they have in store for me. I still do often catch myself falling back into my busy-ness habits but I’m trying to be kind to myself when I notice that. I schedule some time to have a good soak in my emotions.
The moral of my story? You can run from your feelings all you want. You might be like me and run from them with busy or you might run with booze or sugar (guilty!) or in a million other ways. I’m finding that welcoming each feeling as genuine and legitimate is actually so much more useful to me than trying to power through on relentless optimism. When my feelings are shown an open door, they don’t tend to overstay their welcome. They come in, do their job and leave.
I plan to stick at it, in Missy’s name. Fly high, you beautiful angel and give all of our other angel babies hugs and kisses from us.