I think most people can relate to living with a chronic illness or condition. In my life, I know a child with type 1 diabetes, two boys with autism who are at opposite ends of the spectrum, a number of people in recovery, a friend with ADHD, and a childhood friend who is bipolar. Many of us suffer from debilitating conditions that take days or sometimes weeks from our lives. I can relate. I lose days. And my illness is a daily struggle for me. But the big difference I that when I lose a day or two or three, there’s a small light in my heart that reassures me that I’ll have more chances. It’s okay, I tell myself. You’re learning. You’re getting better.
That’s really the key phrase, isn’t it? “You’re getting
better.” People whose illnesses are terminal don’t hear that. Their friends and
family don’t hug them and say, “It’s okay. This will pass.” Because it won’t.
When Jennifer DiMarco asked me to write Roisin Moran, the
Tidewater’s owner, she said, “I want you to give her a terminal illness.”
Wow. I thought. What an incredible challenge for a writer.
What a gift.
I liked this idea because a terminal illness doesn’t mean
that life becomes more precious—because I don’t think that is true for everyone.
A diagnosis of terminal cancer doesn’t automatically turn someone into a saint
or the star of a Lifetime movie. Just like in the healthy population, you’ve
got jerks and angels. And even the angels have bad days.
It took me a while to figure out what Roisin’s diagnosis
would be. I did a lot of research and finally decided on Huntington ’s for a number of reasons. There
are aspects of this disease that I have either experienced or witnessed
including fits of sudden rage, depression, suicidal thoughts, dementia,
frustration with the activities of daily living, and the loss of the person
inside the physical shell.
What makes a person unique? The soul? Memories? Personality?
Intelligence? Humor? Gentleness? Grace? All of this and none. Is it true that as
the brain decays, the person disappears? Sometimes, as with Alzheimer’s, once
that period of frustration passes—when you’re aware that something is wrong and
that you can’t remember how to write a check or get from your home to the
grocery store—there’s a peace that follows. As the mind slides into the past
and remains there, a son or daughter might seem like a stranger to the Alzheimer’s
patient, but there are still stories they both remember, still ways to connect.
Huntington’s is not so kind.
I learned only recently that there is a juvenile form of
Huntington’s as I watched a YouTube video of a child as she grew from three to
eleven, becoming more and more uncoordinated, until she could only stand with
the help of a kind of walker that enclosed her body. A child who cried when her
feeding tube had to come out and who, before her twelfth birthday, was gone. In
her family, all the women have the disease.
Huntington’s is genetic and hereditary. If one parent has
the gene, there is a fifty percent chance that the children will also have it.
It’s Russian roulette. Spin the cylinder and pull the trigger. There’s a
genetic test. Would you want to know?
Six months before Season 1 of Mariel Cove begins, Roisin
finds out that she has Huntington’s. It comes as a shock to her because her parents
never mentioned it. Roisin’s first impulse isn’t to call them, either, as
they’ve been estranged for many years. So she tamps down her fear, uncertainty
and rage. She asks her daughter, Aidan, to come and live in the Cove. She tries
to live life as though the words “Huntington’s disease” had never been uttered.
On average, a person diagnosed with Huntington’s lives for
about sixteen years after the diagnosis. Not all of those years are good. The
disease attacks the brain, destroying specific areas that control
movement—including the ability to swallow without choking—and memory. It starts
with moodiness and clumsiness and culminates in hospice. In between, Roisin
will lose her ability to walk, run, sit still, drive, care for herself, and care
for others. She won’t be able to work, play her guitar or run with her dog.
I read a review of Joan Didion’s A Year of Magical
Thinking which noted that part of the reason Didion spends so much time
setting up her relationship with her husband in the beginning of the memoir is
so that she—and we—can see what she’s lost. That’s what Season 1 is for Mariel
Cove readers. Roisin is largely symptom free, enrolled in drug trials, writing
songs, fully engaged in her life.
But eventually, Roisin’s disease will be terminal. My hope,
of course, is that Mariel Cove will run for twenty seasons and we’ll all get to
grieve Roisin with the biggest Irish wake the Cove has ever known. But there
are no guarantees—about anything.
Roisin has a very special place in my heart. She’s close to
my age, dealing with some of the same issues about the choices she’s made and
where they’ve brought her. She’s joyful to have Aidan back in her life,
grateful for her friends with whom she shares the news of her diagnosis as the
season progresses, and still willing to take chances.
As you are reading Season 1, we are embarking on writing
Season 2 and as I look into Roisin’s future, I know that changes are on the
horizon. It is very important to me that her journey be as realistic as
possible, both physically and emotionally. That she is fully rendered, fully
realized and the disease is depicted as accurately as possible.
I could talk more about Roisin and Huntington’s, but I think
there are some people whose stories are worth sharing and who embody the phrase
“a picture is worth a thousand words.” I’ve selected a few videos out of the
hundreds I’ve watched to give those of you who aren’t familiar with the disease
a sense of what’s it’s like to live with this terminal illness.
Meghan’s Story:
A Family Struggles with Huntington’s Disease:
Living with HD: Pierre ’s
Story Part 1:
There are two additional parts to Pierre ’s story:
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