Mid-May. I am in Washington, DC on the last day of an exhausting east coast road trip. I already know from past experience that once I return home it's going to take at least three days for my brain to reset to normal.
A new email, from a good friend in LA, is in my inbox:
" ... invite you to be a speaker ..."
No way. Last year stretched me beyond my limits. Mind you, by the standards of a Presidential candidate, I had the equivalent of a year off. But I'm a person with a serious mental illness. Ten road trips, adding up to more than two months of not sleeping in my own bed, had taken its toll.
Ironically, my good friend in LA was someone I had recently met on the road, then kept bumping into at conferences. We had actually re-crossed paths in Iowa, of all places. By the time we had a bite to eat together in Phoenix in December, it was as if we had known each other for years.
This year, I cut back my road trips to one. My one public speaking engagement was the result of a long-standing commitment. I would focus on working from home, even at the risk of isolating myself. I needed the time out. I needed to mend.
The day before, I had spoken to a group of clinicians in New Jersey. Hostile disinterest is far too mild a term to describe my reception there. No way I would be getting up in front of a group of people again for a long long time.
"Count me in," I emailed back. The speaking gig was a good excuse for me to take some time off. See my friend again. Visit other friends in LA and kick back. As for the talk, a Q and A session to a NAMI group in San Gabriel in July. Easy peasy
A month later: NAMI San Diego wants me for a quick 30-minute Q and A to open their July monthly meeting. Why not? This will be a good warm-up to the LA-area gig.
Last night: Despite the fact that the Fourth of July weekend has begun, more than 30 patients and family members have turned up. Betty, who heads up NAMI San Diego, introduces me as if I were the Second Coming. Technically, I am - I had spoken here in February the year before. Betty mentions this is the "Ask the Expert" portion of the program.
This is my cue. "I'm an expert in messing up my life," I extemporize. The audience laughs. Very good sign. Then I launch into a quick preamble. I make eye contact. They are listening intently. Oh, what a relief, I am thinking.
Time to take questions. Every hand in the place seems to shoot up at once. People are animated, taking positions, responding to comments from other audience members. This is Q and A at its best, but I'm aware the situation can quickly spiral out of control. I need to step in.
"I love this audience," I enthuse.
Then I briefly recount my dreadful experience talking to clinicians, how my talk went from bad to worse after I just happened to mention that we - patients - don't want to be like them.
I am used to dealing with clinicians on a strictly professional, journalist-to-expert basis. These tend to be the enlightened ones in their field, ones who have dedicated their lives to improving ours, highly passionate about their work. They get paid very well for their efforts, but you get the impression that they would work for nothing.
Giving a talk to clinicians turned the rules of engagement on its head. Suddenly, I was cast in the role of the expert. No one likes to be told how to do their jobs, particularly doctors, especially by a patient.
Moreover, these were your rank-and-file clinicians, people doing their jobs, no different than any other group of people paid to show up for work. Some, no doubt, admirably treat their calling as the highest service to mankind. But many more, I am sure, would gladly retire in a heartbeat if offered the right deal.
This is not an insult. It's just the way things are. There is no incentive - financial or otherwise - for these clinicians to change their ways. They do the best they can, within the confines of a system that seems designed to set us all up for failure.
Within 30 seconds of my talk to these professionals, all had cleared the room. It was as if someone had yelled, "Fire!" Only one person bought my book, no one took the opportunity to engage me one-on-one. No doubt, a number of them thought I was full of crap. Fellow patients tell me I'm full of crap all the time. This crowd? Not a peep. I've encountered rocks with greater emotional range.
Oh, what a difference a month or two makes. Here, I was, among people with feelings, with people who cared. Living with a serious mental illness does that to you. So does being a family member. Our lives are at stake. We don't have the option of forgetting about our illness when five o'clock rolls around. We want change, and we want it now.
Moreover, this is NAMI. People who turn out for NAMI tend to be very passionate about what they believe in. Volunteer power drives the organization. People literally work for nothing.
I love this audience. They react in kind. The room is bursting with a range of different opinions, many in direct opposition, but there is no THEM vs US. Just US. I have now established that rare kind of rapport when speaker and audience at once realize there is no separation. The kind of rapport I have no hope of achieving with clinicians. All too soon, Betty is signaling my 30-minutes is up.
I stick around for the entire meeting. The main portion of the program is devoted to two experts who specialize in helping patients return to work. As soon as Betty closes the meeting, about half the people in the room gravitate to the main speakers and half to me. People buy my book. I am still engaged in one-on-one conversations some 40 minutes later when Betty finally turns out the lights.
I will be looking forward to a lot more people contact, all in good time. Right now is a time to mend, a time to heal. But it's also a time for dipping my toe back into the water. Next week is LA. We'll see what happens.
Published On: July 04, 2008
Living With6 Chronic Condition Guidelines to Live By
Facing the challenges5 Rules for Bipolar Relationships