Imagine doing your job lying on a black leather couch in a plush office big enough to have the expected large desk, executive chair and two business chairs at one end, that couch and an entertainment center in the center and a nicely sized meeting table with four equally comfortable chairs at the far end.The glass-walled office is enclosed by thick curtains to shield it from the day-to-day actions of the rest of the world.Now, while you’re imagining lying on that couch on a cold November Sunday, put a walkie-talkie in your right hand. On the other end of it is an arena full of stagehands and roadies, custodial staff and caterers getting ready for The Police’s “Synchronicity” tour, and you’re directing all their activities from your prone position on that couch, which is the Public Events Director’s office.Yeah, that was me. The director knew how sick I was and trusted me enough to loan me his office for the day. I have had some truly great jobs. Most of the time I could do those jobs with few people knowing I was dealing with chronic diseases. I can throw back pills with such finesse most people never know what I’ve just done.I worked at a convention center and arena in the 1980s. We hosted everything from high school proms to major concerts to national events, and I handled every aspect of those events, working all hours, nights, weekends and holidays.About a month before that November day, I developed pericarditis (The sac-like covering around your heart gets inflamed and causes severe chest pain) and spent three weeks in bed. I came back to work on the day of the Police concert because I have a massive crush on Sting and wanted to see the show. So, I put in my eight hours by being on hand as the semi-trucks full of staging and sound equipment rolled in and the “load in” began.I had to lay down most of the time to keep the pain in my chest at a reasonable level. I’d make the occasional stroll through the arena to prove to everyone I was really there, but the rest of the day I was lying on that couch in the director’s office coordinating everything by radio. For the record, the concert promoter let me use his hotel suite to change clothes so I could return that night and watch the show, letting my fellow event coordinators work the concert and settle accounts at the end of the evening.Ninety-nine percent of the people working there had no idea I was sick, because I didn’t talk much about it.My years at the newspaper though, contained the best and worst of dealing with my diseases. Again, it was a job where it was possible to be at work any hour of the day or night, any day of the year. Some of those times I was on the road on one coast or the other, or the best thing, visiting really great places to write travel stories for other people to read so they would visit those places too.I finally had to tell the editors about my disease in detail because some of my treatments required me to be gone hours at a time for IVs and I came back with the bandages and bruises to prove it. I thought the editors believed me until one travel trip.In 1994, I took a cruise line up on an invitation to take a week-long cruise of the Hawaiian Islands, and in exchange, write a travel story about it for my newspaper.
I used frequent flyer miles to get to Hawaii, and we landed there at night. I spent the next day resting at a local hotel until it was time to board the ship.I had been looking forward to this trip for months, and of course, without my knowledge, my diseases had gotten together and decided to show up for the trip too.There we all were, on a newly refurbished cruise ship in unusually high seas travelling around one of the most beautiful places on earth — me, arthritis, chronic fatigue, GERD, lupus, sleep disturbances, you name it, it came with me on the trip.
As the days went by, I got sicker and sicker.I knew several other travel writers and we had trips planned on every island we visited. I tried to tell them how badly I felt, but I could not convince them I felt as bad as I did, because to them I didn’t look like it.I have vague memories of the islands and the ocean, but it was one wasted trip.
The worst day was on the island of Kauai. Our group rented a convertible and planned to drive around and take photos of the scenery and I did my best to convince them I was too sick to drive. They didn’t buy it.I drove. I drove with tears running down my face because I was in so much pain. I was tired. I was nauseous. Not a single one of them noticed. I truly was invisible that day.I’d love to say I had a great trip, that the meds I took on the sly finally worked and I was able to pull myself together and have an amazing time but it didn’t happen, except late one night.We were leaving Maui and there was a full moon. I couldn’t sleep, so I got up and walked on deck to a sight that almost made the trip worth it.I have no photos of it, but burned into my brain is the sight of a full moon reflected on the Pacific Ocean. It is the sole good thing I remember about that trip.I slept the entire flight home. I didn’t care the airline lost my luggage. I went home and went to bed, ready to get some real rest.I awakened the next day with a temperature and in a massive flare. I called in sick at work, explaining the flare and how much I needed rest and to see my doctor. The next day my editor called me and told me I’d better be in my office unless I was dead. She was serious. So, I went to work, flare and all, because after all, I’d been to Hawaii, so how could I be really sick?