A Glimpse Into Wilson’s Disease

The Assumption

My husband Harly thought he had the flu,
felt lethargic and never wanted to eat.
I just thought he was lazy. After hauling
bags of grass seed all day at the local plant,
he’d flop down on our couch, slather Vicks
on his chest, cuddle with our baby girl
and watch Barney. He stayed up late into
the night playing TechnoBowl, chest pains,
tingling in his joints, then fell asleep, TV
blaring, lamps aglow. He never left the house
except to work, and when he pressed his calves,
he left fingerprints. After his stools lost color,
we saw doctors who dosed him, told him eat less,
walk more. It was a nurse who noticed
the golden hue of his eyes and skin, insisted
on a blood test that showed a liver gone bad.

I drove us back to our modest home in our town
of a thousand. Harly sat in the passenger seat,
sniffing—a twenty-seven-year-old man
who would need a specialist, tests, a transplant.
But right then, all he needed was to hear
the radio play Tom Petty, to rest his head
on my chest. He smelled of sweat and soap.
I’d never seen him cry in the time we’d been
together, but over the next six months,
as he watched his baby girl scream through
her own blood tests, his brother lose his life
to the same disease, his own body wither
from broad-chested and strong to brittle
and thin, I’d wipe them away, one by one,
as they blended into his yellowed cheeks.


What Not to Say After a Funeral

Brother and sister

When I was a senior in high school, I took a class called On Death and Dying. During one particular class period, the teacher, Mr. Jones, asked, “Who in here has had someone close to them die?” A few people raised their hands. I was
not one of them. At 17, I still had both parents, grandparents, siblings, and had never lost anyone. Within a year, all that would change.

In May 1987, my 21 year old brother Tony was killed in a motorcycle accident. I was 18. Suddenly, all that abstract information about Elisabeth Kubler-Ross and the Five Stages of Grief came flooding back. Mr. Jones showed up at Tony’s funeral, and I remember thanking him for the class. I told him I would be a wreck (as if I weren’t) without having all that knowledge.

The aftermath of Tony’s death was far more painful. My father leaned on his wife for strength, and my younger brother was 11. So, I felt as though I had no one to turn to who understood the depth of my pain at losing my beloved brother. Tony would have been the person I leaned on had our father or grandfather or younger brother passed. I’d heard the word “Sorry” from hundreds of people, hundreds of times, so it became empty. And I became angry that everyone else was able to return to their everyday lives.

Over the next several years, when I talked about Tony’s death to people who had never experienced the loss of a loved one, I was stunned by some of the responses I heard. “You must be strong. If my sibling died, I’d kill myself,” or “Everyone dies. You need to get over it,” or “I know just how you feel. I once lost a cat.” I listened to these comments in silence, judging these ninnies in my head.

Exactly ten years after my brother was killed, I lost my young husband to a genetic liver disorder. I wrote “Harly’s” eulogy, and invited two of his cousins and one of his best friends to speak at the funeral. I played a couple of his favorite songs from the 80s. During the eulogy, I tried hard to keep from crying as I relayed the last six months of his life in his struggle against Wilson’s Disease. I did the best send off I could to honor my 27 year old husband. Tony’s death a decade earlier probably helped me emotionally when dealing with Harly’s death and the grieving that followed.

Once again, however, I was ill-prepared for the comments that would come after the funeral. “Wow. My husband and I have had our problems. But I’m so lucky to have him,” and “Your eulogy sure was negative,” and “Why did you have an open casket. We didn’t need to see him,” and “You must be strong. If I lost my husband, I would kill myself.”

Now, in the defense of these folks, no one knows what to say if they’ve never been through this, right? So, looking back, and it’s been 27 and 17 years, respectively, I can say, no one meant to come right out and pour Tabasco sauce into my open sore. At the same, I like to hold on to a statement said to me as I stood outside the funeral home talking to friends. Reed Herres, a long time friend of Harly’s, walked over to me, and said, “I don’t know what to say. So I’m not going to say anything.” And then he hugged me.

You might think because I’ve been through the death of a sibling, and a husband, and now my father, that when I attend a funeral I know just what to say to the grieving. Nope. I find myself at a loss for words just like so many others. Every person grieves differently, and every loss is a new experience. Depending on how well I know the person, I tend to follow Reed’s example and offer a hug. Then I lean forward and ask, “Is there anything I can do for you?”