Page 8
News
New s
J.C.: Exactly. It’s funny because I have been
down that road since then. It took me a while
to go down it, more it was just the thought of
it. I don’t remember it, so it doesn’t bother
me.
Jennifer Chambers, a writer experiencing traumatic brain
injury and a rare genetic disorder, shares stories of Oregon
women who truly live up to the title of remarkable.
BY SUE ZALOKAR
S T A F F W R IT E R
"P art of aty
impetus for
w ritin g 111®
bools were the
pioneer
fonrnals of the
women who
crossed on the
Oregon T ra il.
The things
they went
through are
really unfath
omable - the
kinds o i de
p riva tion and
lo n eline ss/"
JE N N IFE R
CHAMBERS,
AUTHOROF
'•R E M A R K A B L E
OREGON W O M E N :
R E V O LU T IO N A R IE S &
V IS IO N A R IE S ”
S.Z.: Are there genetic markers? Are you able
to tell if your children have a genetic disposition
to this disease?
color) written about in Oregon because
Oregon was founded as such a racist state.
I did want to include women with as diverse
backgrounds as possible. I wanted to dispute
the fact that it was so racist. There were these
amazing women who happen to be of color
that were doing amazing things here.
ennifer Chambers is drawn to remarkable
Oregon women, and so she writes about them.
It’s no coincidence; she is one herself.
Her most recent book, “Remarkable Oregon
Women: Revolutionaries & Visionaries”
(Arcadia Publishing) was pubh'shed in
S.Z.: Do you have a favorite of the women you
November and features extraordinary and
featured in the book?
ordinary women spanning both the geography
and the history of the state.
J.C.: Kind of (laughter). I don’t have just
Chambers began experiencing symptoms of one. Part of what was really fascinating to me
a rare genetic disorder around the age of 12.
and part of my impetus for writing the book
Parts of her body would become inflamed for
were the pioneer journals of the women who
no apparent reason. To date, there is no one
crossed on the Oregon Trail.
else in the U.S. known to have this disease.
The things they went through are really
Chambers said the National Health Institute,
unfathomable - the kinds of deprivation and
who helped diagnose her condition in 2013,
loneliness. Putting yourself in that spot is
might name the disorder after her, as she is
really interesting.
the first person documented to have i t
When she was 15, Chambers sustained a
S.Z.: It struck me as I was reading her story
traumatic brain injury that almost took her
in the book that it was interesting that you chose
life. It was a long road back.
Marie Dorian because really, her contribution
Today, Chambers is a mother of three, a
was specifically to her family. She didn’t do
published author, and a speaker for the Body
something historic for the state of Oregon, but the
Love movement, which celebrates sexual
importance of the work she did for her children,
fluidity and feeling open with oneself at any
that was pretty remarkable. It speaks to the huge
age, size, gender or ability. She’s also a
role, which is often not valued, that mothers play
co-owner and an editor of Groundwaters, a
in society.
Lane County magazine that showcases the
literary voices of rural people.
J.C.: Marie embodied this precisely, with
. Chambers wrote a piece that was selected
very little recognition from her husbands.
for the book “Chicken Soup for the Fat Lady’s
Except for the last one, I think they were all
Soul” and is working on a book about her own
not real fantastic. She really did everything by
experience with traumatic brain injury, called
herself. She kept her family together and she
“Try, Try Again.”
did what she had to do to make things happen
For her latest book on Oregon women,
for her family legacy to continue. Not just the
Chambers said she sought to tell the stories
future of her family, but the future of the
she had missed out on as a student in Oregon.
state.
“I didn’t understand why there were all of
these women, who I should know about,”
S.Z.: In reading your personal bio, you are a
Chambers said. “I grew up here, and I went to
pretty remarkable Oregon woman yourself.
school here, and why wasn’t I taught about
these women? It would have been amazing to
J.C.: I have a genetic disorder. It is so rare
read about these women to me personally as I
that the National Institute of Health might
was recovering from my brain injury. Part of
name it after me.
what really helped me when I was relearning
They have no idea what it is. It took about
things was reading about women who had also 20 years to find any kind of help for it. It’s
accomplished things that were really
super rare. They think that six people in the
insurmountable.
world might have it besides me.
I thought these people should all be
together in one place.
S.Z.: What? Wow. How does it present for
you?
Sue Zalokar: Surely there are many
remarkable Oregon women. What were your
J.C.: It’s similar to a fever disorder. Parts of
criteria for selecting women to feature in the
my body will swell, like my calves or forearms
book?
or face, and then my joints hurt and my
muscles h u rt It’s a lot like rheumatoid
Jennifer Chambers: It was hard for me
arthritis, which is what they thought it was for
that there were many (women) who have been a long time. It’s really debilitating, and it
covered in other places. And some were so big makes it so that I can’t walk (sometimes),
that I couldn’t not cover them.
which is crappy because I also don’t drive
It was as much geography as impact,
because my brain injury happened when I was
because each woman was important in her
15.
own way. I really wanted to show women that
I’m very lucky, but I also use a lot of
were important to each, different part of the
strategies that help me.
state.
I’ve really learned how to schedule stuff. If
I spoke recently at Powell’s, and afterward I everything’s down to the minute detail, I can
was asked if I had purposely chosen people of
get it all done. Mostly.
color. If I were going to do that, it would have
been hard. There aren’t as many (people of
S.Z.: There is a lot of talk about the brain
J.C.: Actually I just went to see NIH. I was
looking on the Internet, and I found that I fit
their study. They did all of my genetic testing,
and they have my DNA all mapped out.
They are still trying to pinpoint which
specific gene has the abnormality. They know
that something does, but they don’t know for
sure because they haven’t matched anyone
else who has i t The hope is they can figure
out exactly what (gene is effected). They’re
keeping (my genome) in their database and if
somebody matches me, hopefully within the
next 10 to 15 years ...
I just asked someone on my team about my
kids. And until they show any symptoms, (they
might have lucked out). They do know that
the two abnormal genes have to mate to make
the bad cocktail of me.
So far, my husband has strong genes.
S.Z.: But your children may be carrying the
recessive gene for this rare disorder, so their
children could be affected.
J.C.: Yeah. Absolutely.
S.Z.: You have written a lot of horror. It seems
like an interesting mesh - historical fiction and
horror?
J.C.: It was an easy place for me to break in
and start writing something that was non
threatening. Genre fiction is fun because
people want it. They kept buying it, so I kept
selling it to them.
I can identify with things that are horrific.
There is nothing really more frightening than
things that I have experienced. After my
accident, my brain was impaired. My body was
better before my brain was, and so I got to
experience some really horrible human
beings.
S.Z.: I ’m so sorry.
J.C.: It happens.
. S.Z.: Tell me about Groundwaters. Why is it
important?
injuries that football players sustain and the
condition of chronic traumatic encephalopathy,
or CTE. It is something you have been living
with for a long time. Can you talk about that?
J.C.: The experience of having this has
given me a lot of gifts. It’s been truly awful at
other times. But I’m really very appreciative
of everything that I have. I don’t know any
other experience. And I don’t remember
anything from before my accident Everything
from before 15 years old is completely a blank.
I had to re-leam everything. I didn’t know
who my parents were. For the longest time, I ,
called my dad by the name of my dog.
I had incredible doctol
I was very lucky in that because of my
weird genetic disease tta [they didn’t know
about, I had an incident here the inside of
my eye hemorrhaged am J went to an
opthalmologist and they bjected steroids into
my eye to stop it. By dffl g that, I found out
that I was allergic to ste feds. This
information came in han fy a few years later
when I experienced my rain injury. At that
time - it was ’92 - they reated brain injuries
with a giant dose of ster ids, which would
have made me blind.
I don’t know that I be eve in things
happening for a reason, |u t I was in a coma
for about 10 days and then I was in in-patient
(care) for about six weeks. I was eventually
able to go back and finish high school and go
to college.
It was very traumatic and dramatic, but the
thing that is germane is that the community
really pulled together. Living in such a small
town, there can always be (downsides), but
part of the reason I’m so lucky is that the
people at the school and all of the neighbors
came together and helped us.
I was very lucky to be in the place where I
was when it happened.
S.Z.: That idea of “it takes a village.”
J.C.: I had just had my second child, and I
was really starting to feel serious and
competent as a writer, having done a few of
those horror stories. I answered an open call
for submissions here in the Willamette Valley,
and it ended up being the magazine was based
here in Veneta. I thought that was a cool
coincidence. I went to the meeting and started
writing for them.
The owner of the magazine started it as a
gift to the community, and her whole thought
was to make it possible for people who lived
in rural areas to be heard.
Because of my brain injury, part of my
whole operating idea was I wanted people to
understand where I was coming from. I felt so
foreign and other and different. It was
awesome to find (an organization) that wanted
to hear what I had to say.
I kept writing for them and I became an
editor, and eventually the owner decided to
Page 9
sell it so three other people and I bought it,
and we kept it going until just this last year.
We decided to stop producing the magazine
because it was becoming too expensive even
with grants. Now we do a yearly anthology,
and we publish other people’s work.
S.Z.: I have a few favorite women you feature
in your book, “Remarkable Oregon Women:
Revolutionaries & Visionaries,” but one that
leaps to mind is Sarah Winnemucca. She was a
Nevada-born Paiute woman. Many members of
her family were killed by U.S: Cavalry in the
Paiute War. She became a Native American
activist and wrote the first
known autobiography by a
Native American woman.
What do you think she would
have to say about the what
took place at the Malheur
National Wildlife Refuge?
J.C.: That’s an interesting
question. My husband’s
family is Paiute. My
husband’s grandmother was
half Paiute, so they are of
that area. For me, I think -
she would be so appalled.
She wouldn’t want those
resources that had been
preserved to be taken away.
The building of roads that
might damage the artifacts
there, that’s the part that is
such a shame - public land
vs. private land aside. It is
just reprehensible.
I personally get the
struggle for land, but I think that is the wrong
place to do i t I understand the struggle for
small ranchers; that’s very real. Small
ranchers need a place to run their cattle; I get
that. They are trying to make a big point, but
they are hurting a lot more than they are
going to gain.
S.Z.: Full circle, where are you on the
spectrum of healing?
J.C.: Sometimes things are easier than
others - just like everybody. I think that I am
very determined and super stubborn, and I
think that has served me well.
I’m interested in everything. That has
served me well, too. I like to learn, and I’ve
learned how to learn. It’s humiliating to have
to ask for help, but I have to ask for help.
Learning to ask for help has been incredibly
useful. I think that being willing to ask has
been my saving grace.
S.Z.: And then being able to receive it.
J.C.: Yeah. There’s the trick. It’s really hard
to admit that you can’t do it or that you don’t
know how. There is an image in our society
that you should know that already. So often, I
don’t already know. I have to figure it out
W IK IM E D IA C O M M O N S
Sarah
Winnemucca, a
Native American
activist, and wrote
the first known
autobiography by a
Native American
woman.