CFIDS Profile: Connie
Thy Silence Shall Be No More
By Connie H.
Originally published in Youth Allied By
CFIDS, Winter 1997
how I remember it so clearly… I had been sick with the flu and bronchitis for
three weeks, but this day was different. It was the evening of Thanksgiving
1993, when "it" hit. We had just finished Thanksgiving dinner as I was settling
down onto the couch to watch the network television premiere of Home
Alone. My throat was so sore that I was barely able to swallow and I was
starting to feel feverish.
My temperature reached more than 102°
my parents took me to the hospital. I was so weak that I just wanted to be left
alone. It made no sense at the time to go to the emergency room because the day
before the doctor said it was just the flu. It turned out to be infectious
To make a long story short, I went
suffering from what we thought was still mono. After being told it could not
still be the effect of mono, we were sent to many doctors, had all the tests in
the book, and still had no identity for my mysterious illness.
Finally CFIDS was suggested by my
pediatrician. I struggled with school for the rest of the year and eventually
ended up on homebound teaching.
By the summer of 1994 I was feeling
well, and signed up for a full ninth grade schedule at school. By the second day
of school I was sick again. I was put back on homebound teaching but was too ill
for my teacher to come. We tried correspondence courses in English, Spanish and
biology. Unfortunately the English and Spanish courses did not work out for me
and I ended up falling a year behind in school.
The next fall I made the transition
junior high to high school, which made all the difference in the world. The high
school staff was so understanding. We decided on three afternoon classes, along
with a "transitional homebound program" two mornings a week.
It worked well
until about October
1995, when I relapsed and had to go back to total homebound teaching. Thankfully
it all seemed to work out that year - with the exception of being a few months
behind in 10th grade and an entire year behind
in English. I was granted the right to "test out of 10th grade English" so that I would be caught up. I am still on
homebound schooling (I did not even try to go back to school this year) and
working on that biology correspondence course.
Recently, I realized just because I
stuck at home does not mean I do not have any rights. This year the school has
had to provide me with: a computer to take a keyboarding/computer applications
class and piano, art, chemistry and Latin teachers.
Other than the people at school, I
CFIDS from the world and my friends for more than two years. Then I realized
that people should be able to accept me for who I am, and not what I have. It
was time to finally open up to people, to let them understand why I cannot do
the things they all take for granted.
So there I was, sitting in front of
people - staring at me - waiting for me to start my church youth group's
devotion. Then it happened… Words started pouring from my mouth.
I recall talking about my emergency
visit and all the doctors, specialists, blood work and EKGs. I handed out
brochures and articles, and played The CFIDS Association of America's videotape
"CFIDS: Society's Hidden Epidemic" in the youth lounge of my church.
After it was over, I was shocked at
responses I received from my peers. They actually thanked me for telling them
about CFIDS. They seem to understand now, yet not fully (like you and me) but it
is comforting to me. It is such a great feeling to have someone come up to you a
week later and say "I really enjoyed your devotion."
It means so much to think that it stuck
with them throughout the week. It is a relief to know that my peers know about
this now and that I do not have to keep acting as if nothing is wrong with me.
It is like an anchor has been unhitched from my soul and I can now float freely
in the waters of my life.
I had never thought of the people in
church's youth group as "friends" before. But you know what… they are, and I am
It is a nice feeling to have friends
there who care so much for you. Even if it is just a pen-pal you have never met.
It is worth everything to have a least one friend.
I know this because for a while, my
pen-pals were all I had. My "school friends" slowly drifted away and I was left
alone, like a puppy shivering in the cold. If it were not for my CFIDS pen
friends, I honestly do not know where I would be today. They provided me with a
lifeline to the world we are faced with now, "The world of CFIDS."
Although I do not recall much about
last three years of my life, I do know that I have overcome many boundaries to
be where I am today. Within the last six months, I have become CYA's pen-pal
coordinator, joined my church's choir and youth group, taken on babysitting jobs
and even received my drivers' license.
I cannot wait until next year when
to graduate on time with an "academic honors diploma" and prove to the school
system what I am really made of. I have even begun to plan out my future. I have
decided to go into the medical field. You know… give a little something back.
For "The end of something is better than its beginning. Patience is better than
pride." (Ecclesiates 7:9)
So as we enter
this New Year, more
challenges lie ahead. My New Year's Resolution is to finish 11th grade on
time. This is going to
be a tough goal to meet, but I know I can do it. As long as my family and
friends stand by my side and share this heavy burden in my life.