Then, just as quickly as I had been cradled in love, been nothing more than a galaxy of stars, experienced the very breath of the Universe, I was back in a hospital bed surrounded by more nurses and doctors than I could possibly count.
The discord of the cacophony in that room at that moment of re-entry was so overwhelming that I just grabbed my head, covered my ears and started to scream. In that moment, that moment of realization, that second of awakening, I truly was not certain that I really wanted to still be alive?
The whys of my life, like they do for all of us, often haunt me. I will not even begin to pretend that I have found the answer to that question. It still puzzles me. I just know, with certainty, that like every single one of us, I am here for a purpose. I also know that it is not for anyone else to determine that purpose. That choice is mine. It is the knowing that makes it a powerful choice and it is the knowing that has informed the living that I have since done.
Once the doctors and nurses were assured that I was stabilized more tests were ordered. I was back on my merry-go-around of wheel chairs through the maze of hospital corridors. Hooked up to machines. Pricked with needles in nearly every vein. Attached to electrodes.
What was most curious to the doctors was that though they had me on a course of medications that would have normally caused a cancerous tumor to react and behave in a very pre-determined sort of way, the mass in my head was not responding at all. In fact, it was behaving quite the opposite. Instead of shrinking, it continued to grow. At a rather alarming rate.
With the growth came continued and more dramatic hallucinations. Now I was conversing with the dead. My dead grandparents were frequent visitors to my bedside and I was recounting long and very intimate conversations with them to the doctors. I was also telling them about the parades of dead people that were marching up and down the hallways. They were really noisy and could they possibly ask them to hold their festivities only during the daytime instead of all night long when I was trying to also sleep?
We were now in the third week of May. As a surprise, my gaggle of hippies had flown in from San Francisco and honestly my hospital room often looked more like a sit-in than a place of healing. At any point in the day, you’d find them reclining on the floor, curled in bed with me, strumming on their guitars and singing me songs. I was so grateful for their love, for their presence. Somehow, having them there instead of 3500 miles away, made even the hallucinations seem like part of the party.
That weekend, I had tickets for the Grateful Dead’s special AIDS benefit concert in San Francisco. I told my swarm of doctors that it would be terrific if they could please have me fixed up in time to be back there to dance in front of Jerry, but as time wore on and the Baby Jesus continued to grow instead of shrink, it became rather obvious that I wasn’t leaving Hopkins any time soon.
So I called the Grateful Dead ticket office from my hospital room. In 1989, if you were a deadhead worth your patchouli, you purchased all your tickets directly from the Grateful Dead ticket office. Long before we had the Internets, we had the Grateful Dead hotline and ticket sales that involved quite an elaborate process of knowing just how to order with a properly filled out 3 x 5 card request, two envelopes and a U.S. Postal Money Order for the exact ticket price amount. It was all rather complex, but brilliant on the Dead’s part. It cut down on counterfeit ticket sales and it also allowed their most dedicated fans access to tickets at all venues before they went on sale to the general public. This, my friends, is how someone who lived in Washington, D.C. was able to tour and see the band all over the country.
I spoke to BamBam. I actually had quite a long love affair with BamBam. We had never actually met one another, but he knew me from my very elaborately decorated envelopes (another trick to getting noticed in the stacks that arrived eager for tickets!) and because I had been such a consistent customer.
I shared with him that I wasn’t going to be able to use my tickets for the concert that weekend because of a certain Baby Jesus in my head and currently being a few thousand miles away from the venue. I also asked him if he would please “miracle” my tickets to an AIDS patient in San Francisco who perhaps might enjoy the show? Surely because they were doing this concert in conjunction with the SF AIDS organization they could find an AIDS patient who wanted to go? Could he please give my tickets to that patient?
BamBam assured me he’d miracle my tickets to a deserving AIDS patient. Then he looked at my outstanding ticket orders. The summer tour was kicking off June 18 at Shoreline. He had my tickets for the entire summer tour right there. Would I be going on tour? What should he do with my order?
I asked him if he could wait a few days to fulfill it? I explained that the doctors were still trying to solve the case, still trying to figure out what course of action to take, still attempting to shrink my tumor. I told him I was determined to be there, to go on tour just like always, but I couldn’t be sure right now. I would have to call him back.
The gaggle of hippies sitting in my room immediately offered to take my tour tickets. Of course they did. That’s the thing about deadheads. Yes, we’ve got your back, but when the chips are down if there are tickets floating about, we’ll we’re ready to take those off your hands. Especially if we didn’t get our own mail order in on time.
I told the gaggle of hippies that if I didn’t make it, the tickets were all theirs. I even promised to call BamBam back and to personally transfer ownership from me to them.
I had two brain surgeons who were both focused on unraveling the mystery of the Baby Jesus in my cranium. Despite the fact that I was at Johns Hopkins as a case study and as a charity case, both surgeons presented their findings and their hypotheses to me.
Allowing the patient to ultimately manage her own care certainly makes perfect sense to me. It is what we all want and hope for in every situation. We do not want our doctors to play God. I fully admit that after that long and arduous journey to arrive at that moment, I wanted to be as involved as possible in making every decision about my health care.
The problem was that my brain was not exactly equipped to be making big decisions. There were the continued hallucinations. All those dead people crowding the room and constantly parading about with their big bass drums! The phone kept ringing with phone calls as more and more friends and family learned that I was really sick. Then there were the drugs themselves. I was foggy at best in my thinking with days and nights getting mixed up and very uncertain on some days of exactly who I really was.
This was the patient they wanted to make a concrete decision about her own brain surgery! It would have been easier for me just to pin a tail on one of the imaginary donkeys marching by in the parade.
