Youth Comment on Attending the
Youth Allied By CFIDS, Spring 1996
To Speak, Therefore to
By Heather Frese
The air was cool on my flushed
face as I was pushed in my wheelchair to the microphone. With clammy hands I
passed out copies of my speech to the people surrounding me at the huge square
of tables; from the friendly face of Kim Kenney to the intimidating doctors and
government officials I had previously only read about or seen on television.
With a telltale beating heart and a mouth that felt like all moisture had been
forcibly sucked out, I began to speak.
What happened next was a blur. Literally.
had forgotten that my contact lenses go out of focus when I look down for too
long, like to read a speech. Luckily, although I had only practiced in front of
my computer clock, I knew my speech by heart, which is from where the words
seemed to flow. I knew that I was not alone up there - Sharon and Allie were
with me, not only in their stories which I presented, but in spirit. We spoke
for all children with CFIDS, and it was an honor for me to deliver their words.
I will always remember
the effect those words had, not only on the committee members but on the entire
audience. The feeling of support was tangible. I carry with me now the knowledge
that words are powerful, and the hope that perhaps something I said will inspire
just one doctor to treat children with respect, or one researcher to continue
the search for a cure. The adrenaline rush lasted for days but my
self-confidence will last a lifetime. Anytime I am afraid now I say, "If you can
speak in front of 100 people and a government committee, then you can do
anything." And that is how it should be.
I Am Not
Alone in My
By Catherine Matheny
Having the opportunity to speak at
ICC meeting was incredible. I had a chance to make a difference, and I feel so
charged-up to keep on fighting the powers that be. I met so many wonderful
people from all over the country who are really involved and concerned with
fighting CFS, and who care about us "kids."
The people were what made the experience
for me. It was so neat to be able to meet people in person who I had only known
through e-mail or through hearing about their CFS work and involvement. It
really made it all real for me. I'm quite worn out now, but am full of a lot of
great memories and emotions. I feel that I am not alone in my struggle, but that
we are all fighting and working together.
The feedback I have gotten from people
since making my speech has been so incredible. So many people have thanked me
for speaking and said that they felt as though I was telling their story when I
spoke. It brings tears to my eyes when I think about how many I was speaking for
when I made my speech. I feel even more empowered to keeping fighting on behalf
of all of the YPWCs. I know that our good efforts will all pay off at some
point, and I have hope for us all!