Index
Three Short Stories with an important Message
ME: the student's story
To Work or Not to Work
Who Really Cares?

To Work or Not to Work

Some thoughts from Mary Schweitzer

I wanted to comment on this subject, because it is very important to me.

I appreciate the struggles of those still working, but let me make it perfectly clear that there are some of us who CANNOT work, PERIOD. I loved my work. As I loved skiing, and long walks, and dancing. Sigh. But -- my beloved research just sits there, in pretty much the state it was in a year and a half 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 would 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 comix page for a half hour trying to remember which ones I've read and which ones I haven't!)

I have days (very recently) when it takes too much effort to focus on the printed page. 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 seminar (someone drove me and we were VERY careful about things like stairs or having to walk any distance) and 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 coudln't remember how you "sign off" -- how you turn to the presenter and let them speak.

And 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 fell getting into the limo back to the airport. (But it was GREAT meeting Doc and Marty and Mrs. Marty and it was great even if I did spell their name wrong ...)

Okay, so I can't drive. Well, someone could drive me up to 'nova to teach. But I can't walk. Okay, we could rent a wheelchair-scooter. I would STILL have to lecture coherently. I lose my place. I misspeak. a LOT. That's not funny if you're taking notes. I get confused when students talk to me. I can't grade their papers, because I can't understand what's in them half the time. The last time I tried to teach, fall 1994, was living hell. For me AND not particularly pleasant for the students. But I reached a point where -- it stopped. I couldn't walk. I couldn't talk. I could not go on.

I emphasize this for three reasons. First -- those of you who are sick but still able to function in some way in the outside world -- JEEZ! GET REST. As much as you can. I was sick at least since fall 1990 (I have slow onset, apparently), but I kept going anyway, kept pushing through. Through giardia (a parasite); through mono; through bouts of bronchitis that were eevntually lasting four months at a time.

Before I collapsed, I was teaching a nine-hour load (3 preps, 100 students, no grader -- that's considered a heavy load, don't make me have to explain why); I had a full plate of research that was going great guns and very exciting; I had two kids with learning disabilities and only me to be their advocate; I had a dear mother-in-law who I had to take medical responsibility for. She passed away a week before I collapsed; I don't think that's a coincidence.

But I LOVED my LIFE. I also skiied. Went walking in the mountains. 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 -- gee, don't throw me in the briar patch.

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 one course 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. (At my university this was VERY difficult to get; shouldn't have been, but it was.) 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 (I had to keep teaching); if I had not pushed through the bronchitis; would I have become this severely ill?

And -- as for those who might have had this years ago -- if I HAD to support myself with this? 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.

Well, this has gone on long enough. I don't want to scare those of you who are working -- I take that back, maybe I do want to scare you. Be VERY VERY VERY VERY VERY careful. VERY careful.

Mary S.

Who Really Cares
Kay Robinson, PWC

Once upon a time....No, this isn't a fairy story. There was though, a time when I lived my life to the full. I used to be a fanatic about outdoor activities, involved myself deeply in the tough life of climbing, of caving, of 'bog-trotting', all both in summer and winter. Besides all of these I also involved myself in local and national charity issues, held down a full-time job, was respected in both my work and leisure activities and had more friends than I could possibly count.

All this ended one day in 1991, November the 5th to be exact. Who would have thought, certainly not me, that my life would change so drastically, that virtually in a matters of days I could be turned into an almost 'cabbage-like' state, my life in ruins, my dream of an ideal future shattered.

That was a time when every day brought new adventure, new challenges to overcome, new discoveries that lay in wait around every corner. Oh life was so good then. I lived for the feel of rough gritstone beneath my fingers, for the crisp crunching sound as my crampons it through ice or hard packed snow, the wind in my hair and the wet rain on my face.

Now I can only see these sights from afar, through the windows of a car on those rare treats when my friends may take me for a drive. I can only recall with sadness the days when I'd don boots and grab my rucksac and leave the world behind for a while. Those memories all still live with me but now clouded by the sure knowledge that they are gone forever, never to return.

Now the very effort of getting myself up and dressed leaves me more exhausted than a twenty mile hike. The effort of making my bed leaves my body feeling as if I've climbed the hardest of rock climbs as my muscles scream out in agony at the punishment inflicted upon them. A slow walk of fifty yards will leave my legs believing that I've just completed the London Marathon without a break and take me hours of bed-rest to recover from.

But for me these are not the worst aspects of this dreadful illness. Far far worse are the effects the illness has made on the way my brain now functions. Oratory has always been a strong point with me. I've given lectures which sparkled and kept my listeners spell-bound for hours. Now, five minutes of the simplest conversation leaves me so mentally exhausted I can no longer remember what I'm saying, to whom or what I've already said.

Reading used to be one of my great pleasures. Not just reading fiction (which I did for relaxation) but reading history, philosophy, theology, science, biography and indeed anything II could lay my hands on. Now reading has become almost impossible. By the time I reach the second page of any book I've forgotten what I've read on the first page. In computing I could in the past, famililarise myself with any application in a matter of an hour or two, now I struggle to master the basics I already know.

Never would I have believed that I could be in such a situation. Since the onset of this illness I've met many people who also suffer with ME, both in the flesh and on the 'net'. I'm constantly saddened by the loss to society of so many bright and active minds and bodies, and constantly angered by the rejection of those who should know better to all of them.

It's no wonder that so many sufferers of ME become depressed when each day that passes they see friends drop away and out-of-sight, when doctors, unable to cope with an illness they cannot cure and cannot alleviate, brush us aside. When, worse still, those with little or no knowledge of this illness treat us as malingerers, as hypochrondiacs and either infer or out-rightly say we've just got psychological problems. I wouldn't wish this illness on my worst enemy, but sometimes...........

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