My morning was a study of my contrasting roles as researcher, app developer, and parent.
I spent an hour participating in a webinar sponsored by SKIP (Solutions for Kids In Pain) discussing 10 priorities for research on chronic pain. I asked questions in my role as Editor in Chief of the Journal of Adolescence about how we could encourage researchers to think more developmentally about chronic pain and other medical conditions. I critiqued research methodology. I was impressed by the group’s commitment to including those in pain and their caregivers in developing research priorities.
I loved the phrase “Nothing about us without us” to describe how critical it is for researchers to welcome those they are studying as collaborators and not just the ‘subjects’ of research.
And then I logged off and got ready to drive my son to class.
Today was a bad pain today. It was noon and already he’d taken all his rescue meds. He’d used all the tricks – double water, salt. He’d done three hours of biofeedback. And there the pain was – a big looming suffocating force drilling into his brain.
But his goal for this semester was to complete at least one college class in person and not online. Today was a classroom day.
So I did the mom thing. He can’t drive on days like this, so I got myself ready to go. He had all his arguments ready – and I told him I knew them and he shouldn’t waste his precious resources repeating them again. Because he knew had to go. And he knew he could hold it together – maybe by a fingernail – for the two hours he needed to. It was just a matter of finding the strategy that was going to work for him today.
So he did. The enveloping hoodie that protects him from sound and touch and too much light. The earplugs that help keep his brain from turning normal classroom buzz into grinding sandpaper of stress and pain. Backpack and coat on. Deep breathing in the car.
Out and to class and NO ONE looking at him could tell how much effort and willpower and grit it took him to stand up and walk into class.
The research priorities identified earlier today were excellent. Effective treatment was one of them. Learning the effects of chronic pain on schooling was another.
But what I want to know is how to best help kids – and every other spoonie – figure out how to find ways to make it through their day. And how to support caregivers who support them do it.
Because it is the hardest thing that either of us have ever had to do. And I know we’re not alone.