Those Who Have Gone Before

Today we will attend a funeral.

The 22-year-old whose life we will celebrate had the same rare, genetic, lifespan-shortening illness as my husband Sean.

This funeral will not be our first. In the years since Sean’s diagnosis, we have mourned for more members of the small, tightly knit Fanconi Anemia community than I can count, flying across the country for funerals when we’re able, grieving from home when we were not. Each loss feels deeply personal, stealing bits of solid ground from beneath our already unsteady feet.

Being the types of people who make friends wherever we go, we have also built relationships with non-FA patients through the bone marrow transplant process, hospital stays, clinic visits, and chronic illness groups online. Doing so has given us incredible friendships and camaraderie, a network of patients and caregivers who get it only as people who are deeply in it truly can. But those friendships come with a high cost too, as we mourn loss after loss, the list of connections shrinking faster than it grows.

At times it feels as if Sean is the last one standing. The sole remaining member of each group to which he has belonged. While that could be seen as something to celebrate, and certainly some days it is, it also means that we are left behind to watch life after life come to an end. Final attempts at treatment. Decisions to move to hospice. Funerals and memorials planned and attended.

Most of the people we have lost shared one or more diagnoses with Sean. Many were seen by the same specialists, supported by the same groups, treated in the same facilities. Knowing that we have walked the same literal and proverbial halls, I can’t take my eyes or my mind off of the caregivers in each of these situations, as time and again we witness these moments of final days and funeral services.

The path which these caregivers and I had shared until now has forked, them going off in a new direction while I continue on. As soon as they are gone, I miss their presence as they blaze the trail ahead of me. I’m glad to not be with them, but can’t help but strain to see what their road is like, knowing that someday my feet will join theirs on its surface. I push away the images my brain creates of myself in their shoes and focus instead on the steps I need to take right now, on the path I am still fortunate to be on. I move forward knowing full well that when my time comes, they will be there to show me the way.

Click to share on:

2 Responses

  1. Oh how your heart, your words and honesty touch so many. You express your space with such raw clarity and honesty. And in the process, as you teach each of us….we lift you.

Leave a Reply

Your email address will not be published. Required fields are marked *