Trying to Keep Going with CFIDSFor some it may be a choice whether or not to work, but for me there are no choices left.
I am - was? - an associate professor of history at Villanova University. Johns Hopkins Ph.D. 1984. My dissertation won a prize, and was published by Columbia University press. A husband, two kids, two dog--I was already very productive publishing, but I knew that my peak years would be in my late forties and fifties, when my children were on their own. I didn't expect this.
I loved my work. As I loved skiing, and long walks, and dancing. But--my beloved research just sits there, in pretty much the state it was nearly two years ago. I have the memory or comprehension problems others have mentioned. I have real trouble reading anything serious and retaining what was on the previous page. Yes, you can take notes, but that also is exhausting. Writing should require nothing except being here at home with access to the computer. I can pull up the UD library holdings and ask my husband to bring me home anything I need for research. But I can't do it. I want to. I try. Can't do it.
I can't drive. I get too confused. My sense of space and distance are bad, and I can't always recall the right sequence to do something as simple as take the seatbelt off and open the car door before trying to exit!
(Oh, example of bad brainfog day trying to read: I can stare at the comics page for a half hour trying to remember which ones I've read and which ones I haven't!)
I have days when it takes too much effort to focus on the printed page. The newspaper feels too heavy to hold. One warning sign is that my eyeballs start to feel like someone is unscrewing them. On those days, I lie in bed sitting up if I can, but sometimes I can't even do that, and I lie on my side, just watching TV or listening to the radio, and drifting.
I went to a professional history seminar last summer (someone drove me and we were very careful about things like stairs or having to walk any distance). I frightened myself because when I would try to take notes while someone was talking (to make a response later), if the person listed, say, three things, I would be writing the first, and I couldn't retain two and three long enough to get them down! That has never happened to me before. Something as simple as giving an introduction--nothing so easy, right? Get a copy of the person's vita, and just talk around the vita. Maybe even tell a few jokes. I couldn't do it. I couldn't remember how to make a sentence around a person's name. I couldn't remember how you "sign off," how you turn to the presenter and let them speak.
And during the three days at a conference in Chicago, where I was very careful to rest in the hotel room for most of the day (I ordered room service and did not go out with everybody else, and I was careful not to stand when I tried to talk), I did okay, disguising a lot of brain fog--but by the time I left, my knees had quit working: I collapsed getting into the limo back to the airport.
When I come back from one of these conferences (I get to go maybe once every three months), the next day is really hard. It's back to invalid prison. But at least there's Internet.
When did I get sick? Sometimes between fall 1989 and fall 1990, I think. Emergency gallbladder surgey fall 1989, giardia (a parasite) spring 1990, mono fall 1990. And then bronchitis, from 4 to 8 months out of the year, from late 1991 through fall 1994.
I have what is called slow onset, which means that at first I was really sick, then went through periods when I would be well enough to work out aerobically a half hour a day, and do nautilus three times a week. To ski. But then I would get sick, and once I got sick, I would stay sick a long time. But I kept going.
I have had problems with bronchitis all my life, but they usually could be contained within a two-week period. That is, I would start out with the uckey cold feeling (scratchy throat etc.), then in a few days it would progress to the Suzanne Pleshette voice and a barking cough. Oddly, when I got the cough, I usually felt better. But I always knew I would be well by Day 10 or so.
Then, starting in 1991-92, I would get the usual cold/bronchitis, but it would not end! It would go on for weeks, and finally, months. The doctors thought it was sinusitis, and I had a deviated septum fixed (boy, that was no fun), but I still got sick. When I had the last bout, my doctor sent me to a lung specialist who said, "No, it's not in your lungs--it's just draining down from your sinuses. You have an infected sinus." So I went to the ENT doc. And he said,"No, it's not sinusitis. That's bronchitis."
But this last time (beginning Labor Day 1994), I got rid of most of the outward symptoms, but I was exhausted. So we began to think walking pneumonia. That lasted into mid-October. I went to a conference in Cincinnati, convinced I had pneumonia. Then, the next weekend, I went to St. Louis with my husband for a conference for him (and I gave a talk at Wash U), and I felt awful, but I was trying to keep cheerful. We even went to a Billy Joel concert. We got back Monday. Tuesday night my dear mother-in-law had a sudden heart attack and died at home. Her neighbors discovered her at midnight and called us. I didn't sleep that night. Hardly slept until the funeral on Friday. Then the next Monday, I had a ton of grading to do. I drove up to Villanova, sat down in my office with a stack of bluebooks to read, and ... I couldn't do it! I couldn't stay on task. I couldn't focus on the words. And then, for the first time, I had what I call the "Pause."
I wanted to stand up and walk to the restroom, and I couldn't. Just sat there thinking that I wanted to stand up.
Same kind of thing happened the next day, with me arriving late to classes but somehow making it through. And the next day. And the next. One day one of my colleagues found me on the floor of my office, crying because I didn't know how I was going to walk to the classroom building and teach three classes in a row. Somehow I made it. I don't know how.
I live an hour away from Villanova. I don't know how I drove home. I do remember crying on the interstate. I used to love to drive, to play tapes--I had a little Prelude that cornered nicely. But now I was crying because I was afraid to change lanes. I would look to see if someone was there, then I couldn't remember.
When I would get home, I would sit down in a chair, and my husband would say, "Let's go out and get something to eat." And I would say, "I can't." And after maybe fifteen minutes or so in the chair, I would manage to leave my coat behind and make it upstairs to bed. And stay there for the rest of the evening, through the next day, until I had to teach again. Bob would bring me something to eat and drink, and I would stare at it a long time before I could pick it up and take a sip. Sometimes chewing took effort!
There was (is) the pain--the golfballs in your throat, the pain at the base of your neck, the pain in your eyes like they're being unscrewed. All the time, headaches, constant aching everywhere, feeling "malaise," they call it. Uchy I call it. But that I could have lived with. The confusion, the weakness--that was something else again.
I always took pride in my lectures, but I couldn't stay coherent. I kept losing my place. I misspoke. A lot. That's not funny if you're taking notes. I got confused when students tried to talk to me after class. I couldn't grade their papers, but a former student heard about what was happening and came back to help me out. The last half of fall semester, 1994, was living hell. For me and probably for the students.
It just reached a point where ... it stopped. I couldn't walk. I couldn't talk. I could not go on. And we went from doctor to doctor, only to be told that there's nothing wrong with me; the tests were normal.
It was a student who came to me and said, "I know what you have." And she was right. I was formally diagnosed at the end of December, 1994. I'm seeing a good doctor, taking meds, but I'm not much improved since October 1994, if any. The family thinks sometimes I'm worse. It's weird--you look at something across the street, and everybody else can go, but you can't. I'm afraid that I have the bad prognosis-- slow onset, and I went on until I totally collapsed. It will be a while before I improve.
All my life, I had kept going. I had immense willpower. So when the doctors said to keep going through the giardia, through the mono, through the bronchitis, I did.
I wonder, would I be as disabled today if they had let me rest earlier? If they had taken my illnesses earlier? If they knew the other signs of slow-onset? (I was alcohol intolerant, losing my balance, my handrwiting was getting awful, light sensitive, noise sensitive...)
I loved my life. My research was just getting noticed; I was getting asked to speak places; it was exciting. I loved to ski. We would go up to Vermont for a weekend of skiing maybe 6 or 8 times a year. In the summer, went walking on the beach, in the mountains. I used to have what my family jokingly called a "mountaineer's lope"--long strides, fast pace. Loved to go walking in cities, old districts. The life of an academic is great--if I was really into a research project, I burned on that project. But if I wasn't? Heck, you can just take off and go to the beach. Or Vermont. My husband and I used to go to professional conferences with each other. I could give a seminar at a local university and get my air fare paid, and then we would free ride on his hotel room and his air fare would be paid for the conference. Or the other way around. The two years before I got sick we had done this and been to Denver, San Francisco, Tucson, Key West, Hilton Head, New Orleans, Chicago--just lots of fun, and basically for free! Or, for the price of giving a seminar about my own research--heck, I'd probably have paid to get to do that. I loved my work.
I wasn't pressured. I was alive. I would give anything to have any part of that life back. And my job was a part of that life. I carried my enthusiasm for history into the classroom. The students could say really interesting things. I had developed a course in American women's history that was my absolute favorite, and had been given the go-ahead to offer it more than once a year, and develop other courses around it. I was so excited about the prospect. I was teaching a course that I could tell had a profound influence on my students and their lives--what a rush!
So. I wonder: if I had been allowed to rest back when I had giardia or mono ; if I had not pushed through the bronchitis; would I have become this severely ill? If there had been respect for my illnesses before, would it have come to this?
And I am fortunate. (No, the long-term disability insurer is still contesting my claim. They want to say it is depression and anxiety, which would then cut off payments after two years. We have to hire a lawyer.)
But I have a caring family, and they are fun to watch. And my husband does have a decent income. For once I think I'm grateful for the gender gap in wages.
But what if I had to support myself with this? What if I had this, and public health or the HMO doctor didn't "believe in" CFIDS? If I had kids, we would be on welfare. If I had no kids, I would be living with my brother or sister or parents. If I had no relatives to take me in, I would be on a sidewalk or in a mental hospital. Or dead.
If I had a physical job like factory work and tried to keep going, I would have killed myself by now because of my clumsiness, falling, confusion. I can't think of a thing I could be paid to do right now, and do well enough that I wouldn't get fired! As it is, I can't do the things I used to do when I was working that kept the home fires going Last fall, I was getting better, and I was so proud that I could drive a few blocks to the Acme, take the electric scooter around and buy groceries, fix dinner, clean up, and put a couple of loads in the laundry and put them away. During the blizzard first week of January, I even baked bread! But.... I can't do that once again. It all quit the second week of January. I have to get family members to leave stuff around that I can eat without cooking. If they don't, well, I eat saltines.
I remember my Mom telling me about men and women in the old days who worked until their "health was broken," she called it. (She grew up in a coalmining town in Harlan Co., KY.) I wonder if they had what I have.
I haven't even begun to touch on the grief of losing the life you loved to this disease. Truthfully, with the help of Internet, and friends met on Internet, I am coping well with the illness. I know I will never ski again. I know I will never be the hot-shot researcher teaching and publishing and doing it all at the same time. But I will be happy if I can write again. (Serious writing, with research and editing.)
And I want to walk on the beach at sunset. And dance.
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