The Opposite of Judgement: May 12, 2022

I am losing my hair. It started falling out in the shower on Wednesday, and I joked to Larry and some friends that the Cleveland Clinic Wellness Retreat obviously had a spa with free Brazilians as part of the package deal. On Thursday my scalp started burning, and then in the shower, clumps washed out from my head, tenaciously sticking to my skin, slipping into my mouth. Handfuls of inch-long hairs gathering on the shower floor.

I observe this all with a sense of detachment, impressed at the sheer suddenness and volume of the loss. I’ve already shorn my hair in preparation for this day, and fully expected its falling out. I felt no grief then; neither do I feel any now as my buzz cut makes way for Cytoxan-induced alopecia. What I feel is only compassion for all the people like me who are mourning losses right now. Their hair. Their identity. Their sense of security in tomorrow. And instead of the usual judgement, I feel self-compassion as well.

I’ve sought out this transplant, and see it as a choice, a gift, an opportunity to reclaim my future. I see it as my best chance to walk my children down the aisle, to travel with Larry well into retirement, to be an active grandmother in my future grandchildren’s lives. This stem cell transplant is how I get to reclaim the life I want for myself. But I also recognize that the road is paved with grief and losses, and that there are more hard days, uncertainty, slides backward, and maddening, frustratingly hard work ahead.

The experience of chronic illness is full of judgement. First, we are subject to the judgement of others: whether we deserve to park in that accessible parking spot or we really need to work part-time, or to be on medical leave. We are sometimes pitied, thought less of, talked over, passed by for opportunities and promotions; it’s no surprise then that, if our disease is invisible, some of us hold our diagnoses close to our chests. But worse, we judge ourselves. We blame ourselves for disease progression we can’t control, feel guilty about plans we cancel and walks we don’t take on beautiful sunny days.

I do not feel ashamed here in Cleveland. I am not embarrassed to be seen using my rollator, and don’t feel compelled to don a hat in order to avoid being the subject of stares and sympathy. I am actually ok - me, ok - with sitting at home and resting if it’s just too much to step outside my door today.

I am empowered by the hope that this stem cell transplant gives me, and it changes my entire aura. I am fierce, and I feel - for the first time in a year - fiercely optimistic about my future.