Before CFIDS, I was a successful attorney and had a full professional and personal life.

I’ve had CFIDS 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 Texas and later went to work for Governor Bush. Now he’s the Attorney General. Too ill to practice law, I now see him while I’m watching TV in my nightgown. I would be unrecognizable to my former colleagues.

On days like yesterday and today I can’t 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. I’d lay down for an hour or so. If I couldn’t get up, I’d call her on the phone; we have two lines we use as an intercom. But like so many times in the past, I couldn’t really take care of my daughter the way I wanted to, and it’s so hard to bear. And each time she gets the flu, she’s worried she’ll 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 CFIDS. And today—terrible timing—my mother, who is in assisted living, had a crisis and I couldn’t 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. I’ve 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. I’ve 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 “fine," 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. It’s 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 mother’s 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 I’ve been sick with CFIDS since 1987.

After CFIDS, my professional contributions as an attorney ended. Today, I am in worse health than my 84-year-old mother. Believe it or not, in spite of the crisis today, my mother is healthier than I am—and I’m in my early fifties while she’s 84. People ask about her health, but not mine. I just don't matter.  When I have to go to the hospital, I’m alone unless one of my girlfriends accompanies me. Since I became too ill to practice law, I have tried numerous part-time businesses—stocks, 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 I’m too sick to do the work. I doubt I’ll 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 yesterday—this is the down side of CFIDS. Clearly there are times when it’s 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 CFIDS is not just physical. I’m used to not being able to help myself, but it’s so much worse when I can’t help the people I love when they need me. CFIDS takes away so much. It hurts so much. EDITOR’S NOTE: This story was edited for publication.