Wednesday, November 10, 2010

Crossing it off my Bucket List

Ms. Johnson works for the ABC affiliate Channel 13 WHAM in Rochester N.Y.

Crossing It Off My Bucket List

Reported by: Jennifer Johnson
Published: 11/08 12:55 pm
Updated: 11/08 3:28 pm

Have you had that amazing moment when you thought, "My whole life has
led up to this.  This is why I'm here ".
I had it four years ago.  It was November 8th, 2006.

The story begins long before that however.  It's the story of who I
am.  It's the story of why I became a journalist.
Growing up outside of Boston I was a jock.  I loved sports, especially
soccer.  I worked hard in school but when I thought of college I
thought of where I wanted to play, not what I wanted to study.  That
changed a little in 10th grade when I took a journalism class and
liked it.  That inspiration came at the perfect time - I just didn't
know it then.
10th grade started great.  My varsity soccer team was going to the
playoffs.  I already had a spot on the varsity basketball team and was
planning to return as pitcher for the varsity softball team.  I
squeezed in a part time job as I studied for honors classes.

Then I got mononucleosis and was sick for about two months.  No
biggie.  I was good again by New Years.  But a week later, on my 16th
birthday, I felt sick again.  I would feel sick for the next 5 years.
Forget playing on the sports teams I mentioned.  I could hardly shower
and get dressed.  My mom would often cut up my food for me.  I
couldn't go to school.  Tutors came to my house.
I don't say this as woe-is-me.  I say it so you'll know this illness
is no joke.  That's important because people often laugh when I say
the name of the illness: Chronic Fatigue Syndrome (CFS or sometimes
called CFIDS which stands for Chronic Fatigue and Immune Dysfunction

They wonder if I sleep all the time.  Answer: no (see
for a list of symptoms).  They say they're tired too and think they
must also have CFS.  Answer: probably not and comparing your afternoon
yawn to an illness that robbed me of my life for five years is
insulting.  But I can't blame people for being accidentally insulting.
Chronic Fatigue Syndrome was/is an illness with a public relations
That's why an article in the Boston Globe in 1994 meant so much.

I met the writer Jackie MacMullan when a friend put us in touch .
Jackie covered the Celtics for the Boston Globe.  I wanted some career
advice because I really liked that 10th grade journalism class and
thought if I couldn't play sports anymore I could report on them.  At
the end of my conversation with Jackie I mentioned I had Chronic
Fatigue Syndrome.   She called me the next day and said she wanted to
write a story about CFS.  A few weeks later my story was on the front
cover of the sports section of the Sunday Boston Globe.

It was one of the first mainstream articles about CFS.  Up until then
patients were often dismissed as lazy or crazy because doctors had a
hard time figuring out why we felt so awful.  So without the support
of the medical community and with a name that sounded benign, CFS
patients lacked support from the public.

Once the Boston Globe article came out I got letters from all over the
country from CFS patients who said none of their friends, family or
co-workers realized how serious their situations were until they read
it in black and white.  I was impressed how knowledge led to
understanding and compassion.  I was impressed how a journalist could
make such a positive impact.  It's what I wanted to do with my life…
if I ever got better.
I met with my school tutors year round and graduated from high school
on time.  I talked my way in Syracuse University's Newhouse School of
Public Communications by telling the story of my illness.  I was still
sick through most of college but was improving and felt good enough
after graduation to enter the working world.

A lot of people ask how I got better.  I have no idea.  There was no
miracle drug or treatment.  My body just seemed to improve over 5
years.  I feel lucky because many CFS patients are sick for decades
and never get better.  They never reach their goals.  They never live
their dreams.  I never forgot these people.

Fast forward to 2006.  The medical community was finally paying
attention!  The CDC was teaming up with the CFIDS Association for an
awareness campaign.  The launch was in Washington DC.  I had to be
there.  I asked my bosses at the time to send me to cover the story.
It was a big request but they said yes.  I will be forever grateful.

I had no idea it would be so emotional standing there at the news
conference.  I heard stories like mine and much worse.  I heard the
head of the CDC say we had been ignored for too long.  It was time we
received respect from researchers and from the public and the CDC
would invest time and money to make sure those things happened.  It
brought me to tears.  I had wanted to hear those words for more than a
I put the story together with the stipulation from my bosses that I
tell my story.  I agreed to use the embarrassing teenage photos if
that's what it took.  You can see the story on YouTube.

It ran on November 8th, 2006.  I remember feeling like I was naked
while it was airing because everyone was seeing something so personal.
By the time I walked out of work that night I felt 10 feet tall and I
was bursting with pride.  Through struggle I had reached my goal of
becoming a journalist and I was telling the story I got into the
business to tell.  I was helping all the CFS patients who were not
getting respect.  I received thank you notes from hundreds of them and
helped many of them find support groups and find one another.

I'm not sure how much has changed since 2006.  There have been small
breakthroughs but there is no cure.  However, the CFIDS Association
has a friend in the CDC.
I hope CFS patients know they have a friend in me.

Please visit to learn more and or go to YouTube to watch
the story I was meant to tell.

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