Chair By The Window: A Huntington's Disease Story

A Huntington's Disease Story about Ellen, abandoned by everyone she loved.

Episode Transcript

Speaker 1 (00:16):
It's time to speak up. It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, you
are who loved Welcome to We have a Voice Radio.

(00:40):
My name is Kevin Jess and I'll be your host
this evening. Sometimes the hardest stories to tell are the
ones about being left behind. This is the story of Ellen,
a woman whose world was taken from her one piece
at a time, by Huntington's disease, and then by the

(01:00):
people she thought would always be there. When Ellen was diagnosed,
her family promised they would never abandon her. They promised
they would hold her hand no matter what. But as
the disease progressed, when the movements became more visible, when
the words got harder to find, those promises became whispers

(01:25):
and then silence. Her husband left first, said he couldn't
handle it. Her daughter stopped calling, her son changed his number.
The neighbors, once so warm, avoided eye contact, and Ellen,
in her small chair by the window, found herself truly

(01:49):
terrifyingly alone. She told me once, loneliness is heavier than
this disease. My body shakes, but my heart is what
really falls apart. But this is not a story about despair.
Because one morning, when Allan was certain she would never

(02:11):
laugh again, something changed. It was a squirrel, Yes, a squirrel, fat, clumsy,
with a tail that looked like had been through a blender.
It clamored on to her window sill, looked right at
her and sneezed a tiny, ridiculous sneeze, and Ellan laughed, loud, uncontrollable,

(02:37):
teary laughter. For the first time in months, laughter broke
through the cracks of her loneliness. She told me later
that squirrel was funnier than any of my ex husband's jokes,
and cheaper too. From that day, Ellan started naming the
squirrels she had, mister Sneez's, Lady Acrobat, and the thief

(03:03):
who once stole her sandwich right off the sill. These
creatures became her family, her audience, her reason to get
out of bed. And then something unexpected happened. The mail
carrier noticed, the cashier at the corner store noticed, and slowly, slowly,

(03:27):
the people around her began stopping by, just for a chat,
just to see how Ellen was doing. They laughed with
her about her ridiculous squirrel soap opera. They asked questions,
they stayed. Ellen once said, Huntington's took my family away,

(03:49):
but it gave me a new one, not the one
I wanted, but the one I needed. Her story is
not one of perfect healing. She still shakes, she still struggles,
She still faces nights or the silence presses in too heavy.
But she found something that kept her going. Moments of connection,

(04:12):
however small, a laugh through tears, a smile through pain,
and that's the lesson she left for me and maybe
for all of us. No one should have to fight
this alone. But even if the world turns away, hope
has a strange way of sneaking back in, sometimes on

(04:33):
four tiny paws with a crooked tail. This has been
the chair by the window, A story for We have
a voice radio. For anyone listening tonight who feels abandoned, unheard,
or invisible, Please remember there is still laughter left for you.

(04:54):
There is still hope, and there is still a community
here wait to love you, and so remember you are loved.
If you've enjoyed this story this evening, if it made
you feel something, then please share it and you know,

(05:19):
if you haven't already subscribed to we have a voice
radio channel. Thanks a lot, and have a nice evening.