Talking the Talk

They said year two is worse. Sad that anyone would know that. Sadder that it’s true. I heard it from someone at a group I attended, a group attended by the saddest people in the world; parents whose children have died. The concentration of grief there was palpable, you could reach out and stroke it like the room’s pet. And for some it was a pet, a replacement for the child they’d lost and they nurtured it, fed it their tears and held it close. One parent stated that the only thing worse than feeling the grief of losing a child was to stop feeling that way, to stop missing them. I lost some of my fear when I heard that.

Talking about it. Tuesday evenings from 7-9. Homemade cookies and coffee in a real mug in a warm room with comfy couches. Even with the couch and good coffee it was a lot more difficult than I would have thought especially as I rarely shy away from sharing my opinion on anything and everything. Those that know me know I talk a lot and I talk fast but always about the light and easy. Talking about your pain takes courage, particularly for a guy.

Guys seek an ego of capability and strength - probably why we won’t ask for directions. Boys ridicule those who cry and victimize those that seem weak and that social conditioning carries through to adulthood. Which leaves us invisibly disabled, wary of showing weakness and incapable of sharing pain. “Suck it up!” the coach yells. We did and we do. And for the most part it’s good advice. Life’s tough and whining about everything that doesn’t go your way is the best way to get left behind. But then something really bad happens and there’s no ability to share, no ability to ask for help. So you carry it around because it won't let go, you try and ignore it so eats you from the inside out.

A few years before Rachel died the pain I carried in my belly began to erupt at inconvenient times. The anticipatory grief and her declining health were piling up and the internal pressure forced its way out through tears. The tear locks were opened by triggers that were initially unconscious but eventually I began to recognize. I was walking through the PNE and some young teens were doing a dance routine on a stage. Lost in the anonymity of the crowd and hidden behind my sunglasses the tears ran. Rachel had briefly, following her double lung transplant, been able to join a dance class. She loved it. I guess I saw her on the stage, knew she’d love to dance, knew she never would again. There was no conscious thought process, I just cried. I was surprised, glad I was alone in the crowd and scared. Was this the new me? I went to see a therapist.

The first guy I saw wasn’t very good, he looked at his phone a lot. I got a referral from my weekend employer, the Salvation Army, who had a family assistance program that included a few counselling sessions. It’s a well-intended program but its primary focus is on helping individuals address drug abuse issues so I shouldn’t have been surprised when the counsellor spent most of the time asking about my drug and alcohol use. When he finally decided I wasn’t abusing substances we (I) talked about Rachel’s poor health and my pending loss. I don’t know what I expected him to say, I just wanted him to fix me.

He didn’t. He did prescribe a book, “Tuesdays With Morrie”, which could have come with doctor-like instructions “Read one chapter before sleep”. It essentially encouraged the reader to make the most of your time with the dying person which, in retrospect, was excellent advice. But the talking seemed useless and he seemed unused to working with someone who was grieving over something that had yet to happen. I stopped going.

I did, however, start spending a lot more one-on-one time with Rae and together we created some of my most valued memories. We went on several road trips together, went on a trip to Paris (she wanted to see EuroDisney) and began doing speaking engagements to help fundraising for Cystic Fibrosis. We even starred in a documentary about dying children that was aired on national TV.

But as she got sicker I got sadder. The grief was getting harder to contain so that any time I was alone I was crying. I needed to talk but to who? We all know someone who’s constantly complaining of their ill health or how rough life is treating them. At first we accommodate but after a while we avoid. My biggest fear was becoming one of them, a social pariah whose sole identity was the guy whose daughter is dying. I needed someone outside my social/work circle. I needed another therapist.

This guy was a little better. He too had lots of experience in working with people who had suffered a significant loss but very little with people who were waiting for it to happen. But he did offer the most helpful bit of advice I received; talk to Rachel about it. Seems a slam dunk. The one thing we had in common beyond the shared gene pool was the knowledge of her pending death. But how do you talk to your child about their death? We spend all our time as parents kissing a booboo and telling them everything’s going to be alright. We nurture them, we toughen them and we send them out into the world with all the skills they need to survive and embrace the future. We want them to be happy. How could talking about her death make her happy?

And that was the other good thing he said. “She knows she’s dying” he said, “and doesn’t want to upset you so she doesn’t talk about it either but probably wants to..." So I did. It was hard. We talked about how I felt (scared and sad) and how she felt ( sad for the people she was leaving behind). She was amazingly brave though she denied it and I drew some strength from her courage. She was miles ahead of me down the acceptance road. We talked about her funeral, she even chose some music. It was the most helpful talking I’d ever done.

And that was the key. Talking. Not asking questions and getting answers but to tell someone how I felt. The challenges were overcoming my conditioned reluctance to share my feelings and finding the right someone to talk to. Someone who could appreciate what I was feeling. I thought it would be a therapist but it was my dying daughter that saved me. Thanks, Rae.

The other people who were able to appreciate the experience were other people who'd had the experience. Other parents. They had the context so that when I spoke, they nodded. We knew. They spoke and I heard echoes of my own thoughts in other words and I knew I wasn't alone. They shared some of their strategies and that helped as well, and while there wasn't a support group for people waiting for that awful phone call, I am so glad they were there after. Thank you, one and all. In talking with you, I learned to accept the unhappy truth that dreams can and do come true... but so do nightmares.