That Takes Ovaries! (22 page)

The next morning we pushed on through Canada, driving only five hours, and afterward I immediately got into bed again. Knowing I would grow more tired as the trip went on, I had planned on less and less travel each day. The last stretch was a two-hour drive to the festival itself.

When we arrived, I was given permission to drive my van into
the center of the festival to unload. Usually one has to transfer to a wheelchair-accessible shuttle bus, but we just had too much stuff. I was met with hugs and kisses from old lesbian friends and exchanged greetings with new ones. “Helping Hands” from the Disabled Area Resource Tent helped us with unloading and dinner while we listened to live music playing in the background. We were tired and hot—but it was so exciting to be there. Women, some topless or comfortably nude in the heat, all bedecked in feathers, big necklaces, scarves, or other outrageously festive attire, stopped to chat as we set up our dome tents. The festival carpenters had built for me a platform bed high enough to transfer from. I put my foam mattresses on top, my plastic tubs and milk crates filled with supplies underneath. I hung bags of clothes and medications on bungee cords and set up my bedside vent.

Extra ventilator batteries were positioned by the bed, in case of a power failure. Never too careful, I had also brought a special cable that could run either vent off of any car battery. The festival provided outlets from which we ran extension cords to my tent. I plugged several power strips into them for the ventilator, battery chargers, nebulizer (for asthma), electric heater, blender, and hot pot. The hot pot was crucial; the equipment needed to be washed in hot water. I tried to keep things as sterile as possible. I had my PCAs use more gloves than usual, since it was difficult for them to wash their hands between procedures. I put my little rainbow flag in front of the path to our tents. This was our home for the next five days.

Using the vent in the tent was not much different than using it in my apartment. While traveling around enjoying crafts, concerts, parades, dances, and seven thousand women—four hundred with disabilities—I made sure I had plastic bags and ponchos to cover myself and the ventilator if it rained. I carried my ambu bag and suction machine with extra suction catheters, medications, inhalers, water, and snacks, in case I could not get back to my tent for several hours. A roll of tape and a small toolbox also lived with me.

The festival was a total success. I saw Edwina Lee Tyler, Holly Near, Rhiannon, Toshi Reagan, and others perform, bought lots of ceramics, and met with many women. I also led a workshop on Ableism, Isolation, and Networking. I ended it with a piñata party, where women had a grand old time knocking down candy with crutches and canes. I got tanned, feeling good about the fact that since we were all women, I could actually go topless. Nobody stared at the two catheters protruding from my stomach. I felt nurtured, exotic with feathers and beads in my hair, and triumphant that even though I was now trached and vent dependent, I could still be here. It was like coming home.

Life was good.

We returned to Boston with less stuff in the van, but lots of memories to carry me through the winter.

In the mid-1980s, I was approaching middle age and had already put up with a lot of B.S. in my eighteen years as a tradeswoman. I was a millwright, a heavy-duty field machinist,
doing ironwork for large-scale projects. To give people a better idea of my skills, I used to say, “If you want a railroad car put up on the roof, I could do that for you,” including reinforcing the building structure to support the weight. At the time, I was in the construction division of a major company, and assigned to help build a new automated warehouse for them. It was to be one of the largest “under one roof” structures in the world. The company was already huge—300 buildings sprawling over eight square miles. They needed company buses to wind about this manufacturing maze: an efficient system for moving around 35,000 employees.

There were other tradeswomen in the construction division besides me. Gloria was an apprentice millwright, Deana a pipefitter, Alice an instrumentation specialist. Prudy, Susan, and Jeannie were electricians. Pat was a sheet metal apprentice. On our project, that made eight women and about four hundred men.

Portable trailers were brought in to serve the crew, including a general tool crib, offices for trade supervisors, a break room, and a restroom facility: a men’s facility, that is. The fact that we women needed a restroom, too, was considered unnecessary. None of us was terribly concerned—at first. When nature called, we simply went to the back of the site, across a lot, and into a side door of an already operational wing of the warehouse. But within a few weeks, warehouse workers started complaining about our muddy-booted presence in their territory. The doors to their quadrant were soon locked.

Our recourse was to go to the corner and wait for the once-every-eleven-minute bus, which we rode for half a mile to the next completed wing. However, within two weeks we were banned from that site, too. It was getting ridiculous. Now a trip to the restroom required waiting for the once-every-fifteen-minute shuttle and a seven-mile round trip, keeping a woman off the job for up to forty minutes. We were there to work, not ride buses.

When I approached my foreman, I wasn’t surprised that he
laughed at me for thinking this could possibly have enough weight to even be considered a problem. But it was, and I wouldn’t leave his office.

“Kathy, I’m too busy to deal with it. Let one of the other trades’ foremen.”

“Nobody’s dealing with it, and we still need a bathroom.”

Finally he said he would bring it up at a meeting that afternoon. I was later told a solution had been found: The men and women would share the washroom facility. When a woman went in, she’d put up a sign, taking it down when she left.

The first day was tough. Men were angry about having to wait for a woman whom they felt didn’t belong in their space anyway. By midafternoon, a guy came along, tore the sign off, threw it in the mud, walked in, and used the urinal while Prudy was in there. She was furious. We rinsed the sign off and tried again.

The next day, one of us, I think it was Jeannie, was in the bathroom, stopping to wash her hands, when a man came in and unzipped his pants. He pulled out his penis, jumped in front of her, and made comments that matched his actions. She ran out in shock and quickly notified the rest of us.

That was it, the last straw.

I went to my toolbox and got my safety lock. No one else except a security guard had the key, and it was considered a serious offense to ever cut a safety lock unless a department head gave his permission, so I knew this would not be treated lightly. Then I changed the sign to read WOMEN’S ROOM ON MONDAY, WEDNESDAY, & FRIDAY. MEN’S ROOM ON TUESDAY & THURSDAY. That seemed fair. I hung the sign and, it being Wednesday, snapped my lock on the door.

A fellow soon came along and demanded I let him in. I told him to wait until tomorrow. In a rage, he stormed off toward the supervisors’ trailer. By the time the foremen arrived, several other men were in line. My legs trembled in front of the gathering, but I refused to remove the lock.

The other managers demanded that my foreman get me
under control. “Kathy,” he fumed, “these men have to use the bathroom.”

“Tell them to take the bus over to Building 165,” I countered.

“You can’t expect hundreds of men to go off the job like that,” he snarled.

“Then tell them to wait until— “I looked over at the sign I’d written, “Thursday.”

He looked at me as if I was crazy, then stormed back to his office.

But he must have done something back at that office, because the very next day a brand-new women’s restroom facility was delivered. We had won.

“How dare they. How
dare
they?!”

I stared in disbelief at the most recent issue of the
British Medical Journal (BMJ).
Not one, but three articles in the prestigious periodical had publicly trashed my research. The entire medical establishment of England seemed ranged against me.

They were attempting to discredit my five-year project. The one that had studied a third of a million school pupils; a properly peer-reviewed study that had been conducted with a
famous microbiologist and published in a reputable U.S. medical journal; research that when I first went public with it, took top spot on the national newspapers and TV news networks.

You don’t believe it? Believe it.

Steeling myself, I sat down to flip through the pages of Britain’s top medical journal. The articles on us included one by a leading pediatrician alleging research bias, and an end-piece questioning
my
personal integrity and motivation.

“Oh yeah? Right, guys. We’ll see about that.”

This had to be put right, and now. Sure, I thought about my reputation, but mostly I thought,
If I don’t fight back, who will take the kids seriously? Who will help them if I don’t?
It’d be a daunting task to take on the medical establishment.
Can I do it?
I wondered. I had to think about it—for all of one minute.

If I could survive the same horrendous illness the children had, including the years of pain and disability, and if I could survive that harrowing two-day media frenzy of last May, when I first released the research results, I sure as hell could sort this.

What was their problem? Didn’t they want to know the truth?

Schools Hit by ME Plague,
ran the front-page headline of Britain’s leading newspaper last spring. With that, the country’s top medics were caught with their pants down. That was what hurt. They should have known. They, themselves, should have done the study and fronted the cameras—not me. They didn’t take it kindly, hearing it from a writer and one-time school principal. Especially when they had been denying there was any problem at all. Now, smarting, they chose to attack instead of acknowledge the truth about this disabling disease.

You’re asking, What is this illness? What was all the fuss about?

I’ll tell you what. We’d discovered that ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS), was much more prevalent than previously known. Our research proved that over half the country’s kids on long-term sick leave had it. And yes, it is a physical illness, not an emotional one. Brain scans and other tests have proven that. Chronic Fatigue
Syndrome? It may have been given a pathetic name, and some outdated doctors may still refuse to recognize it, but ME/CFS is a devastating disease.

I know firsthand.

ME/CFS can be triggered by a number of things. I got it after contracting a viral illness related to polio. Then for twelve years I was in constant pain and bedridden, slowly moving from a wheelchair to a walking aid. I gave up my career as a school principal to concentrate on getting well. As I got stronger, I retrained myself as a journalist and, with a consultant microbiologist, spent half a decade investigating 333,000 schoolchildren. In the end, our study showed ME/CFS was the single biggest cause of long-term sick leave in British schools, bigger than cancer and leukemia combined. No other illness came close. In short, we’d found a cluster pattern, a plague, in our schools. And yes, it exists in the United States, and in South Africa, Europe, Australia, Japan, wherever. Thousands upon thousands of kids have it. Most of them aren’t listened to or believed when they say they are too exhausted to move, too brain fogged to think clearly, or in too much body pain to go to school.