Elizabeth Dekle Does It with Blogging, Baking, and Benevolence
By Olivia Boler
Strong
Ties: Though life has changed dramatically in the
last few years, Elizabeth Dekle still lives in the house
she grew up in on Elizabeth Street.Photo by Pamela Gerard
Imagine you’re walking
down 24th Street and suddenly you are unable to move. You
don’t fall, but your
muscles freeze in place. Later, you’re trying to sign a sales
receipt, but a
tremor in your hand keeps you from writing your name. Then
walking back to your
house, your knee throbs with pain, making you limp. What’s
going on? you ask
yourself as you stare in the mirror, seeing the smooth clear
face of a
21-year-old. Have I aged 50 years?
This is what happened to Noe Valley resident
Elizabeth Dekle. At
21, she began to notice strange symptoms. In fact, it was hard
for her not to
notice. “I would lose my balance and crash into whatever would
hold me,” she
says. “I had a tremor, as well as vertigo, and this stiffness
or rigidity in my
left side. But the most terrifying symptom was the freezing.”
The stall would last anywhere from a few seconds
to an agonizing
three minutes. “It’s like there’s an internal debate between
your feet and your
brain that goes on and on until one wins,” she says.
For five long years, Dekle searched for the cause
of her worsening
symptoms, going from doctor to doctor. Finally, a neurologist
at UCSF gave her
an answer: she had early-onset Parkinson’s disease.
“I was actually a little joyful when I got the
diagnosis,” Dekle
says with a small laugh. “I know that others would have a
different reaction,
but after so many years of not knowing, of being through this
physical and
emotional hell, it was a relief to be able to put a name to it
and go from
there.”
Now 27, Dekle is busy writing a blog about her
illness (and her
culinary dreams), joining fundraisers for disease research,
and organizing a
Parkinson’s support group.
While Parkinson’s disease affects five million
people around the
world, early-onset Parkinson’s is fairly rare. Only about 10
percent of those
who suffer from the disease are diagnosed before the age of
40, according to
the Parkinson’s Disease & Movement Disorder Society. The
most famous person
is actor Michael J. Fox, who was diagnosed at 30.
Named for the doctor who first described it as a
palsy back in
1817, Parkinson’s is a degenerative disease that attacks the
central nervous
system. Symptoms arise from a lack of dopamine, a chemical
messenger in the
brain that coordinates muscle movements.
The disease takes a heavy toll, especially if you
don’t know you
have it. Trained in the baking and pastry arts program at the
California
Culinary Academy, Dekle worked for two years as a private chef
and then at
several restaurants during her early and mid-20s. But as time
wore on, she
found it hard to perform certain tasks. “My hands shook and I
couldn’t stand
up. My schedule would start to be reduced by my bosses.”
Fearful of being fired
and unaware of the source of her problems, Dekle would
eventually quit, one job
after the other.
Today, she is on a standard treatment for
early-onset Parkinson’s,
a drug called Ropinirole, which replenishes dopamine. She will
take the drug,
or another like it, for the rest of her life—or until a cure
for Parkinson’s is
found.
The medication is helping—in July she completed
her first 5K race,
as part of the San Francisco Marathon. “I tweaked my knee in
the first mile. It
was the most intense and grueling thing I’ve ever done.
Finishing it was such a
relief, and I have such a proud feeling of accomplishment.”
She also raised
$800 for Team Parkinson through sponsorships of her race
efforts.
Dekle has a steady job, although it’s not in the
restaurant
business. She still bakes “by request,” but works as an
executive assistant at
a home healthcare office. “The irony is not lost on me,” she
says.
So far, her employer doesn’t know about her
Parkinson’s. “To most
people I am ‘out,’” she says. “But I keep it as anonymous as
possible, although
people notice the tremor. The other day a stranger asked me if
I was drunk
because I was having trouble standing in one spot. I know
people are going to
find out, and I’m fine with it.”
One reason she feels secure is her family and
community. Dekle,
whose friends call her “Liz,” has lived in the same house on
Elizabeth Street
all of her life with her grandmother. She attended St. Philip
School and
Immaculate Conception Academy, and did a 21/2-year
stint at Loras College in Iowa before the Culinary Academy. A
favorite hangout
is Bernie’s coffeehouse on 24th Street, where she meets up
with friends and
family, including her “almost aunt” Bernadette Melvin.
Dekle attends St. Philip’s services every week
and is a lector at
the church. Faith is a huge part of her life, and she often
writes about it in
her blog,http://diningwithdisease.wordpress.com/.
“I started the blog as a way to express what it’s
like to be in
your 20s and have this quote-unquote old person’s disease,”
she says. “I’m
trying to bridge the gap between age and the disease, and I
want my readers to
know that knowledge is power.”
Dekle has her good days and her bad days. On her
good days, she’s
scaling the hills—Billy Goat, Liberty, and Grand View—and
enjoying her newfound
mobility. But at other times, when her tremor becomes more
pronounced or her
balance is off, “my facial expression fades to the point where
people ask me if
I’m upset or angry,” she says.“Overall,
I like to think I’m doing a pretty good job managing. For the
most part, I know
what I can handle. When I’m really not feeling it’s a good day
but I have stuff
to do, I just do it. Some days I force myself to do things I
probably
shouldn’t, but as they say, what doesn’t kill you makes you
stronger, right?”
Dekle attends a support group at the Veterans
Administration, and
says she is the youngest person there by about 30 years. “It’s
difficult but
interesting.” She’s in a different place in her life than most
of her cohorts,
many of whom are much further along in the disease.
In July, Dekle decided to start her own support
group, SF
Parkinson’s Connect (www.sfparkinsonsconnect.wordpress.com).
Members get together online or at local cafes. “I envision it
as a place for
anyone who is affected by Parkinson’s and needs a place to
talk about it,
whether it’s patients, caregivers, loved ones, or those who
want to learn
more,” she says.
More so, it’s a place for those like her who
haven’t lost hope.
“In the support group [at the VA], you talk about everything
going on with you,
and it’s not necessarily beneficial in the sense of fostering
a sense of what
onecan do. So many focus on what they used to be
able to do,
instead of looking forward to what they still can do. There’s
a lack or loss of
joy for some, and if you keep living in the past, nothing will
go forward.
“Really, you have to pick yourself up and say,
‘Okay, here’s where
I will start my life from scratch.’ There is a sense of
reprogramming
yourself.”
To find out more about the support group (or the
baking), email
her at elizabethdekle@yahoo.com.
Elizabeth Dekle often strolls with
her dogs Logan and Mandy near her home on
Elizabeth Street. When she’s feeling adventurous,
she hikes up to Grand View
Avenue. Photo by Pamela
Gerard
Here’s an
excerpt from Elizabeth Dekle’s blog Eating for Life—A Pastry Chef’s Journey with
Early Onset
Parkinson’s (diningwithdisease.wordpress.com).
JIGSAW
The
Beastie Boys say,
“You’ve Gotta Fight for Your Right.” Twisted Sister says,
“We’re Not Gonna Take
It.” AC/DC tells me they’re ”“Spoilin’ for a Fight.” And
Ozzy—well, he’s on a
“Crazy Train.”
The
downward spiral of
depression grasps us all at some point, but for Parkinson’s
patients, it can
happen more often than you might think.
Do
I not belong? Is
everyone staring at me? Am I going to fall? I used to enjoy
doing _______.
Now I can’t find the joy in it.
The
feeling of not “fitting
in” in society can be overwhelming sometimes, which can most
certainly certainly cast me into the throes of a
depressive episode. But
what does it the most is the look I get when I tell people I
have Parkinson’s.
The second it registers, there’s this look in some
people’s eyes. They may
not mean to do it, but it says quite emphatically, “I’m so
sorry!” I don’t want
the pity, I need the support! It seems illogical for someone
to be 27 and have
what is perceived as an “aging” disease. Why is this?
So
yes, neurologically
speaking, I’m sick. Mentally I’m not. Physically…well…50/50.
Remember
the scene in The
Little Mermaid when Ariel is on a
rock singing “Part of Your
World”? That’s what it feels like sometimes. Watching the
“humans” walk and
play with their dogs on the beach, while I’m clinging to some
rock with the
waves trying to pull me back. In fact, the more I think about
this, the better
an analogy it makes…
“Maybe
he’s right.
Maybe there is something the matter with me. I just don’t see
how a world that
makes such wonderful things could be bad.”
Up where they walk, up
where they run
Up where they stay all day
in the sun
Wanderin’ free—wish I could
be
Part of that world...
I
can’t even stay in the
sun too long either! I get a reaction that makes me itchy.
The
jealousy, if you let it
get to you, gnaws away at you, filling you with a resentment
that doesn’t let
up. Which, of course, then brings you back to a depression.
So,
how do we—Parkinson’s
patients—fit into the jigsaw of society? We have to make
ourselves fit. That’s
the answer! And by God, I do. I refuse to let myself be thrown
back into the
sea of depression and pity because my legs don’t work
sometimes, or because of
my tremor, or because of any of the other symptoms I have that
make me stand
out in society.
The
Beastie Boys were
right. “You’ve Gotta Fight for Your Right” to belong (and to
party). Twisted
Sister was right too, because “We’re not gonna take it
anymore.”
AC/DC
was “Spoilin’ for a
Fight” because they must have been waiting in line at Social
Security, or trying
to get an appointment with Disability, or sitting in a psych
evaluation that
wasn’t even addressing the reason you filed for disability.
What
about Ozzy? you may be
thinking. How does he fit in? There’s a line in “Crazy Train”
that stands out,
“I’m living with something that just isn’t fair.”
The
trick to a jigsaw is to
get the outside edge done first, then everything falls into
place more easily,
especially that last piece—you know the one I mean, the one
that has some
funky-shaped bit that never locks in anywhere until the end.
We
are the last piece. We
do belong. We complete the puzzle, because of our uniqueness.
—Elizabeth
Dekle
Cranberry
Walnut Cookies
Pastry chef Elizabeth Dekle was gracious enough
to share one of
her recipes. She writes in her blog, “I created this recipe
while I was
working for a restaurant here in SF. The cookies are
particularly delicious
with a glass of milk, and especially at around 1:30 in the
morning…”
Ingredients
4 oz. unsalted butter, room temp/softened
1/2 cup each, white sugar/packed brown
2 eggs
1 tsp. vanilla
1/2 tsp. orange extract
2-1/4 cups all purpose flour
1/2 tsp. each, baking soda/powder
Pinch of salt
3/4 cup chopped walnuts
3/4 cup chopped
cranberries
Preheat oven to 350 degrees.
Beat butter slightly to break up any lumps of
cool/cold butter.
Turn off mixer and add sugars, mix briefly to incorporate.
Turn off mixer and
add eggs and extracts, mix briefly.
Mix dry ingredients except fruit and nuts, add
and mix until dough
forms. Add cranberries and walnuts and mix to combine.
Scoop out and roll gently between palm ‘heels’ to
form a smooth
round and lightly press top down.
Bake 11 to 13 minutes, until edges begin to turn
golden.
