“No one can tell you what grief is until you have to say goodbye for the final time”

Stacey+and+Burt+Newman.

Stacey and Burt Newman.

By Stacey Newman

Grief.  A concept one can’t fully know until it snakes around and pierces your heart like a rabid animal.

I thought I was prepared for the inevitability of grief as I cared for my husband, Burt, with frontal temporal dementia (FTD) these past several years. But no one can tell you what grief is until you have to say goodbye for the final time. It’s like childbirth or wedlock. You can’t know its mystery or power until it comes to you.

Here’s the thing with a rarer form of dementia. Few understand it besides medical professionals who specialize in FTD and memory care. Most people have never heard of FTD, which tends to hit people even in their fifties, takes several years to diagnose and centers on poor judgment and behaviors as the frontal lobe of the brain atrophies.

Loving a spouse with FTD means grief appears in stages. Burt No. 1 disappeared a few years ago as his personality and outbursts altered the man I married nearly 34 years ago. He still knew me and was angry, but my caretaker role was confusing to him, as he could not understand his own brain disease.

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Losing Burt No. 2, the man the disease ravaged, was more devastating because it meant the entire bundle of memories we had collected, the good and not so good, were finally just that, memories. Surprisingly, Burt No. 1 reappeared in his last days, allowing us to enjoy him with the assurance he loved us as we loved on him back.

As someone who aims to be prepared for everything, no one had told me what grieving a life partner would look like.  It is overwhelming, disabling and more painful than I had imagined.

Why wasn’t I told that the planet would continue spinning, as my own world crashed? Not yet a month later, I’m hanging onto every kind word and every warm hug. I’m replaying every word and embrace from his funeral, graveside and shiva in my head, in order to navigate this new life without the man I fell in love with, when grief seemed eons away.

Grief reared its head as soon as I saw Burt take his last breath, feeling that I would dissolve and disappear. I embraced him and then touched everyone too uncomfortably long, as if human touch would compensate for me letting go of my husband’s hand for the final time. Human touch grounded me, made me exist in the moment. In the first days, I desperately longed for it when I had to walk alone, like how could I possibly walk by myself?

Now I understand. The power of human touch keeps grief from its painful stranglehold, even for just a moment.

Grief means being alone, left behind. Not in the same way of living by myself this past year and a half, knowing Burt was close by and cared for. Grief highlights the finality of being alone, as grief does its best to shrink me, make me feel less of value to the planet.

In her soon-to-be published (posthumously) collection of essays, “Your Hearts, Your Scars,” Adina Talve-Goodman wrote, “We live in the crawl space between grief and gratitude.” Her mother, Rabbi Susan Talve, repeated her words at Burt’s burial, reminding us to fill that space with memories to share for generations to come. Hearing friends tell stories of Burt, many escapades I did not know, pushes back against my grief, begging for a chuckle or a smile.

Cousin Rabbi Mark Shook whispered to me, “there are no rules,” amidst my gallons of tears as grief screamed while watching mourners cover his casket with dirt. I carried Mark’s words through the next days, particularly when I lost my torn black ribbon of mourning from my sweater. Grief tormented me as I frantically searched for the ribbon, because I had broken the traditional seven days of keriah. I punched back at grief and repeated Mark’s words over and over until they soaked in.

Now that I know what grief looks like, I want to attend every funeral, every shiva, of every friend, every acquaintance.  I want to shout about grief from the mountaintops and mitigate its pain for others, to provide the same touch which saved me in all the minutes when I couldn’t breathe.

My rational mind understands that grief is part of the life cycle, that it is sure to show up in our lifetimes. But why so incredibly painful?

As the moon rises, the sun reappears and new life is promised on the horizon, I understand now.

That to know grief is to have danced with love.

Stacey Newman, a former Missouri state representative, is the executive director of ProgressWomen, a statewide social justice group focused on justice and equality issues.