Before CFS, I was a
successful attorney and had a full professional and personal life.
Iíve had CFS for 18 years. Back when I was a real person, I
was a practicing attorney. As Assistant Regional Counsel for the Immigration and
Naturalization Service, I interviewed Alberto Gonzales for a job in our
offices. He decided to stay in
and later went to work for
Governor Bush. Now heís the Attorney General. Too ill to practice law, I now see
him while Iím watching TV in my nightgown. I would be unrecognizable to my
On days like yesterday and today I canít look up and dial a
phone number, much less practice law. Yesterday my 12-year-old daughter was home
with a stomach flu. I spent the day trying to take care of her, while trying not
to catch it and trying to rest at the same time. This means I would bring
her some tea and toast, or some medicine, then have to go lay down. Iíd lay down
for an hour or so. If I couldnít get up, Iíd call her on the phone; we have two
lines we use as an intercom. But like so many times in the past, I couldnít
really take care of my daughter the way I wanted to, and itís so hard to bear.
And each time she gets the flu, sheís worried sheíll come down with the scourge
her mother has been living with since four years before she was born.
My daughter got over the flu quickly, but I was bedridden
today by CFS. And todayóterrible timingómy mother, who is in assisted living,
had a crisis and I couldnít be there. During the past six years my mother has
had two strokes, which she largely recovered from, and a basal cell carcinoma on
her tongue, which she completely recovered from. Now she has developed serious
sleep apnea and has been hospitalized four times this year, mostly because she
refused to use the breathing machine. Iíve been the one who interfaces with
doctors, the one who knows her medical history, the one who tries to be at the
hospital as much as possible to protect her.
Twice, after I have seen her through crises, I have been
hospitalized myself I was so sick. Iíve begged my two brothers to take more
responsibility for my mother. Well, today the issue was finally
forced. My mother has had a cold all week, which was probably turning into
pneumonia. Every time I called she said she was ďfine," but the
wheezing told me she was not fine at all. Today the nurse on duty, after
monitoring her for six days, decided to transfer her by ambulance to the
hospital. Itís the first time my mother has been hospitalized that I was just
too sick to be there and be her advocate.
I had a complete emotional breakdown. I called my brother,
said he had to go to the hospital, and tried to make sure the daily caregiver
had my motherís written medical history. I told them I had to go to bed, that
maybe I would get to the hospital tomorrow if I can stand up. But they don't get
it, even though Iíve been sick with CFS since 1987.
After CFS, my
professional contributions as an attorney ended. Today, I am
in worse health than my 84-year-old
Believe it or not, in spite of the crisis today, my mother is
healthier than I amóand Iím in my early fifties while sheís 84. People ask
about her health, but not mine. I just don't matter. When I have to
go to the hospital, Iím alone unless one of my girlfriends accompanies me.
Since I became too ill to practice law, I have tried numerous
part-time businessesóstocks, organizing, writing. They all end up the
same. The first gig or two I make sure I rest enough, and I manage to do a
good job. But I wear myself out. Then the client wants to hire me again, but Iím
too sick to do the work. I doubt Iíll ever be able to get off disability for the
rest of my life.
During the past 18 years, I have tried almost every treatment,
traditional and holistic, with the exception of Ampligen, to get better or at
least to manage this illness. And there are times when my life is at a nice
plateau, meaning that if I rest up during the day, I can go to dinner, a movie
or a school function for my daughter. But those 18 years are scattered with
missed school events, missed dance and acting performances, missed bar mitzvahs
and missed vacations cancelled at the last minute.
Writing this on a bad day has been an agony, and this will
have to be edited heavily for it to be publishable, but I wanted to tell my
story. Today and yesterdayóthis is the down side of CFS. Clearly there are
times when itís not so bad, times after I have rested for two or three days and
feel energetic and want to conquer the world. But then a relapse creeps up,
and it's hard not to get down emotionally as well as physically.
The pain of CFS is not just physical. Iím used to not
being able to help myself, but itís so much worse when I canít help the people I
love when they need me. CFS takes away so much. It hurts so much.