Speak his name

by Liz Johnston

This piece is bound to be all over the place, as are my thoughts and feelings these days, but such is the nature of grief. Today marks the 10 year anniversary of my father’s death. At the time, I thought I had lived through my worst nightmare. Little did I know that 10 years later, I would lose my son, Jordan, to the same wretched disease. I have had my heart torn out. Twice. And have lived to tell about it. Somedays I wish I hadn’t. And most days I believe that I need to cherish life--the same one that they no longer get to live. Both my father and son would want that for me.

Despite this devastating loss, or perhaps more accurately, because of this devastating loss, people can be weird around me. To be fair, most of my friends and family have been amazing. I’ve had friends who cook meals, do laundry, clean our house, grocery shop, or spend the day just sitting on the couch with me. I have family members that have held me, wept with me, encouraged me to get outside or go punch a speed bag; I’ve even had family come and clear out all medical supplies in hopes of eradicating some of our most painful memories.

But there are some people who can’t look at me, at us, at this unspeakable pain. And somehow, that avoidance adds to the pain. They don’t mean to hurt us; in fact they are probably trying not to hurt us. Some friends--the same who called incessantly during Jordan’s illness, don’t call at all any more. Other friends call to apologize for not being around, stating: “I know you are just inundated, so I don’t want to bother you.” Some family can’t look me in the eye, can’t tell me how sorry they are, and certainly can’t talk to me about losing Jordan. It is easier, after all, to talk about travel plans, the weather, or when I might be returning to work. None of which I care about right now. I am not trying to publicly shame anyone. I’m really not. Rather, I want to let people in. Grief is a lonely place. And even the clumsiest of company is --well, company.

I’ve been reading book after book on grief to feel less alone. In the one I just finished, there was a line that both struck me in the heart and punched me in the gut: “When a parent dies, we lose a part of our past; when a child dies, we lose a part of our future. Well I’ve lost both. My past and my future. At least significant parts of each. For this reason, I need to keep their memories alive. For this reason, I need my friends and family to call me, to look me in the eye, to share their pictures and tell their stories, to ask how I am feeling and how I am faring. Don’t be afraid of my reaction. I might cry. I might not. Just know this, I will never be tired of hearing about my dad or my son. Also know this, just because you don’t speak of them, doesn’t mean I’m not aching. Most importantly, know this: No parent that has lost a child wants you to forget. Our kids matter. They are part of us. We still want to talk and hear about them. I want you to speak his name: Jordan William Sebastian.

​So, as promised, I am all over the place. But to rein this in and make my point, if you have loved ones who are grieving, don’t stay away, don’t ignore the elephant in the room, don’t avoid making eye contact, don’t change the subject. Instead, make the call, spend some time, look at their pain directly, cry with them. The tiniest measure of compassion matters more than you could know. Trust me. I know.

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​Mark Evan Johnston
Jordan William Sebastian
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