The selfishness of grief

Karen Valentine turned to advocacy alongside the unexpected role of medical caregiving when her son Levi was diagnosed with epilepsy. Then, last year, Levi, passed away from SUDEP (sudden unexpected death in epilepsy) when he was only 16 years old. No matter how many families I know grieving at the hands of epilepsy, and at this point I’ve lost count, it never gets easier. Why don’t we know more about this relatively common condition? Why can’t we prevent these deaths? 

So, when Karen asked me to host a virtual book talk with her, I jumped at the opportunity. During a conversation leading up to the event, she mentioned the irony of going from being a selfless caregiver to the necessary selfishness of grief and what a struggle that aspect had been for her. Woah. When I found my words, I asked Karen if she would write a blog for ‘Inchstones’ about just that. I think you will be as pleased as I am that she said yes.

The Selfishness of Grief

When Kelly and I were preparing for her Normal Broken book talk the subject of grief being selfish came up. That especially early on, you really need to focus on yourself before anyone else in order to get a foothold in your grief. But for us caregivers, this can be a foreign task. All the years spent prioritizing another life over ours makes it confusing and unfamiliar territory. How do we even know what WE need?

Back then IF we managed to take any time to ourselves it felt like it was at the expense of our child’s needs. And we felt guilty.

But now it feels that if we don’t take the time THAT is at the expense of our mental & physical health - and in turn our child’s memory.

Is this selfish? 

selfish | ˈselfiSH | adjective (of a person, action, or motive) lacking consideration for others; concerned chiefly with one's own personal profit or pleasure.

Given that definition, I’d say no, it isn’t. It is self-centered, self-focused, self-concerned. Someone just ripped all of the rest of the pages out of the book we were totally absorbed in. We have no idea what happens next, and we are the main character now! We are now tasked with forging yet another new path through dark woods.

When our medically complex child was alive we did EVERYTHING humanly possible to give them what they needed to make those “inchstones” happen. We took physical care of them. We explored all the research on their conditions and treatments. We fought to have them be understood & respected. We canceled plans after seizures. We often didn’t make plans in the first place. We consciously arranged for joy in their lives.

But now. Now we need this attention. 

-We need self-care - deep mental, physical, spiritual care, not simply a mani/pedi

-We need self-exploration - who the heck are we now if not our child’s advocate/expert/parent?

-We need self-understanding - digging down to why are we this way? Where are these feelings coming from? Are they still necessary or remnants of the former life?

-We need to be able to cancel plans, or not make any at all.

-We need to consciously arrange for JOY in our lives. 

We just lived 16 years of training to be selfless, planning around Levi’s capabilities and seizures which was massively purposeful.

Suddenly we find ourselves overwhelmed by a new horribly painful, confusing, all-consuming experience that requires us to rank it number 1 over everything else. Eating, exercising, working, and getting dressed become enormous tasks because of this new ‘guest’.

I often think to myself: The only reason I’m able to care for myself now in this grief journey is because he’s not here. I have the time and bandwidth because he’s not here. That’s a mind f*ck. And every time I try do something for myself, like go see live music, grab a coffee, take a long leisurely hike or go away for the weekend with Mike, I am reminded that the only reason we can do it is because he’s not here. 

HE’S NOT HERE. HE’S NOT HERE. HE’S NOT HERE.

Me, and only me, must dive headfirst into this new experience and sort it out. That requires a tremendous amount of energy and focus on guess who? Myself.

So patience is needed. Just as we learned how to be selfless and center our loved one’s care in our lives, we can learn to do it with ourselves. 

For more from Karen you can follow her at @fourvalentines on Instagram, or @KarenRValentinesPage on Facebook

Photo ID: Karen, a middle-aged woman with light skin, is wearing her long, light, hair in two braids under an olive green trucker-style baseball cap. She is wearing a dark grey v-neck t-shirt and a silver lotus flower necklace. Levi, a teenager with short, dark hair and features against light skin, is wearing a purple, blue, green, and white tie-dyed t-shirt. Levi has his arm around his mother. Both are smiling at the camera against an orange background.