A Kick-Ass Fairy: A Memoir (31 page)

As usual at the end of the hour, the telephone rang.

“Hold on, please.”

I gave him my check, agreed to meet the same time next week, and stumbled out of there like I’d been binge drinking. I made it to my car and just sat there, so sad, tears streaming down my face along with my makeup.

Eventually, I made it home. And then it hit me. I thought, wasn’t it ironic that the mole removal was ostensibly done to prevent me from getting cancer, but each time I really did get cancer the aftermath was always the same—not getting the love I needed, not feeling special, feeling pathetic, really. On top of that, each time the likelihood of surviving the disease was decreasing but the outcome was exactly the same. This was the pattern. Whoa! This getting sick has got to stop now! I thought.

It scared me a bit to think of the possibility that I had created all of this on some level, a subconscious level, looking to resolve some old shit. I felt like I had struck gold. At least now I might be able to understand how to fix the pattern. If I could fix the pattern, getting the love I needed from myself, feeling special just because I am, then—abracadabra—I’d stop getting tumors! My god, I was mighty and powerful in a very self-destructive way.

At the next visit with Bill, who was late again, I shared this revelation. He seemed dismissive of my theory. He wanted to get back to the memory of the car ride to the doctor and being ignored.

This time he wanted me to imagine being the mother to myself. I couldn’t do it. He then asked me to imagine that it was one of my children. Would I have been able to comfort my child?

“Of, course,” I said.

Then, using EMDR, we went back to the car, where I had Uncle Joey drive and I sat in the back with my child, holding her the whole way, offering words of comfort. I didn’t know why I couldn’t do this for “little Linda.” I was blocked.

For the next several weeks, we revisited the appointment with the doctor who removed the stitches. I don’t know if it was stubbornness on my part, but I just could not get off eight to ten on the scale of rage with my mother. Bill postulated that I turned this rage inward and somehow embodied that I was bad. He referred to my feelings as a “toxic cesspool.”

Soon I began to have physical manifestations with the memory of rage at my mother during the EMDR—a sudden intense headache, eyeball pain, neck pain, loss of power directly affecting my solar plexus with a sensation of a ball in the gut. In my mind’s eye, my rage focused my power—I imagined sending out a ball of death to my mother but it was never released. As instructed, I went through the exercise of biting her, chewing her up, and spitting her out. Then I felt sad, especially that I had disappointed my father. Bill told me I had internalized a pattern of being angry rather than hurt. I learned that rage didn’t help. Killing my mother didn’t make me feel better. But I sure did have passion.

In between visits with Bill, I decided to give my mother a call and ask her in an as matter-of-fact a way as possible to tell me what she remembered about this surgery. As I expected, she immediately got defensive. She said she did it “because the doctor said I should have it done.”

“Why did you decide to do this when I was 4 years old?”

“I think it was because we were living with Grandma but were about to move. I thought this would be a good time, since Grandma could watch your sisters.”

She was 26 at the time and the mother of 4-, 3- and 1-year-olds. She wasn’t thinking about any untoward outcomes. It was interesting to observe that for the rest of my childhood, she didn’t bring me or my siblings to the doctor for anything unless it was close to a life-threatening emergency—hence the rest of the trauma and corresponding anger. To this day she goes to the doctor only kicking and screaming, to the detriment of her own health.

At the next session with Bill, I told him about barricading the bedroom door as child.

“Are you sure you weren’t sexually molested?”

“I locked the door because you never knew when Mom would burst in yelling, screaming, hitting or pulling your hair.”

He told me my mother was mentally ill. From all that I had told him thus far, my childhood was far from normal. He thought that I was emotionally and physically abused. He told me my diagnosis was complex post-traumatic stress disorder.

One day I noticed a large budding amaryllis bulb in Bill’s office, replacing a dead sprig of something. That was the day he fell asleep while I was talking. I felt offended, hurt, betrayed. He didn’t seem too upset and was very matter-of-fact about the whole thing. I rationalized that the room was hot, as usual. I thought maybe he was sick, on some medication, didn’t sleep well the night before. I called him during the week. I thought he owed me an apology and some explanation for his lapse. Reluctantly, he finally apologized, but offered no explanation. It didn’t help me feel any better.

I overlooked all of this behavior though. I supposed my reaction was another by-product of my childhood. We continued working together, doing EMDR for other incidents of trauma, learning how much junk I was holding inside. We were still trying to work through the stitch removal incident, slowly making progress on mothering my inner child, when at the end of our session he told me to visualize putting my feelings toward my mother in a box on the shelf. Instead, I visualized throwing her into a putrid New York City dumpster and then frantically winding a cable around it multiple times. Then, heroically maneuvering the dumpster using a crane, I hurled it into the Hudson River. While this was going on, I was giggling, ecstatic in fact—never in my life had I had such an extreme feeling of joy. It was a bit frightening. I felt a little crazy. I felt such relief. I felt free for the first time. Maybe I finally tipped over.

We never really had an opportunity to find out what that was all about since Bill fell asleep again at the next meeting. I was stunned.

“We are done here.”

He wanted to continue our sessions, but I didn’t think I could trust him anymore. I asked myself, How is this therapeutic?

Someday I will know whether I am the one who creates the pattern by choosing to see only proof that nobody really cares. But I learned from seeing Bill that I care about me. Maybe I don’t need to self-destruct anymore. I’m learning to hurl the dumpster again and again until it’s gone forever. I want to feel the glee, giggling and free.

I definitely hurled the videos of our sessions in the dumpster.

Chapter 29

May 2007–October 2008

May 16, 2007

I had an appointment with the head of genetic counseling at UCSF. It seemed to me she was curious about how I am dealing with all of this. The bottom line is I am still here. However, I feel like a POW, on a constant state of alert, overly vigilant, looking to make sense of insanity, trying to hold on to hope.

She seems to think I have a genetic syndrome (of course). She wants to do BRCA analysis rearrangement testing (BART, for short), an updated and expanded test for BRCA 1 and 2, for $995. My thoughts are that they should pay for this test for their possible research article if the results are positive. I would rather spend my money on a trip.

Having a genetic syndrome creates a feeling of doom for me. It doesn’t make sense. Why haven’t I had more tumors if I have an inherited mutation in my DNA? Nothing seems to have changed much since my last visit in 2001.

Nixon launched the “war on cancer” when I was a child. This country can rally around terrorist bombings. What about the terrorism of cancer, the internal bombs, the WMD of the disease that affects millions of people? So many people are living with suicide bombers lurking around every corner. As this population of baby boomers ages, will anyone correlate this disease to an avian flu pandemic or anything else? We can spend billions of dollars to fund killing one another. Why isn’t there more funding when the war is inside the bodies of so many of us?

I get so enraged, I need to scream. When is this to be considered an epidemic, possibly a pandemic? It won’t be, due to apathy, indifference—too painful to think about, we all die from something. Someday the light will go on—it will be simple. No more mutilation, poison, frying. DO IT NOW! In 20 years it will be too late for the majority of this population.

June 7

The genetic counselor called. She said their genetic group met and now they think I might have a p53 germline mutation. She would like me to reconsider the BART. Come on. I don’t believe any of it.

I turned 50 in July. I was excited to still be alive and grateful for an incredible life. There were many birthday celebrations. Doug and I were planning a trip to Japan as my gift in November. I was finally getting over the last cancer diagnosis.

July 28

Wouldn’t it be funny after 50 years of living to finally begin to learn to live, to no longer be an extreme tide of reactions, rising up to a tsunami or being flat and splattered. Oh, to be an oak tree, strong, rooted, grounded to the earth, rustling with the winds but not toppled. I’d lose my leaves in the fall and rest in the winter, leaf out in the spring, be energized in the summer. I’d be a place of rest and refuge for the birds, home to the squirrels, nourishment for the planet, filtering the air, providing shade, warmth and beauty. My soul would be at peace knowing who I am.

Be the tree, unwavering, knowing the cycles, accepting all as it is.

August 13

I finished reading Man’s Search for Ultimate Meaning by Viktor E. Frankl. I want to quote what I found to be the profound passage:

The fact remains that not everything can be explained in meaningful terms. But what now can be explained is at least the reason why this is necessarily impossible. At least it is impossible on merely intellectual grounds. An irrational rest is left. But what is “unknowable” need not be unbelievable. In fact, where knowledge gives up, the torch is passed on to faith. True, it is not possible to find out intellectually whether everything is ultimately meaningless or whether there is ultimately meaning behind everything. But if we cannot answer the question intellectually we may well do so existentially. Where an intellectual cognition fails an existential decision is due. Vis-à-vis the fact that it is equally conceivable that everything is absolutely meaningful and that everything is absolutely meaningless, in other words, that the scales are equally high. We must throw the weight of our own being into one of the scales.

And there is the answer. We need to have blind faith to believe that everything is meaningful—not just some things, like we get to choose what is or isn’t meaningful. Everything is meaningful if you have faith. Nothing is meaningful if you don’t. And if you don’t, how do you survive? You believe in luck or science with no God.

If I didn’t believe in God or in something greater than myself and the ultimate meaningfulness of every person, instant, place, event, good and bad, that drives my sense of purpose when having to face life-changing events, life-threatening illness, living with a chronic disease, losing body parts, putting faith in health care to allow 17 surgeries, knowing I will be OK no matter what, I would have died a long time ago.

My faith in something more gives me the courage, fortitude, a fighting spirit and hope to look forward to what comes next. I wouldn’t be able to take my next breath. I think this and this alone—faith, grace and grit—is the only reason why I’m still here and have not broken and gone completely insane.

In the spirit of continually learning to improve our relationship, in the heat of late August Doug and I headed out for another weekend retreat. This time it was at the Tassajara Zen Center for a course called Taming the Jackal: A Retreat for Nurturing Relationships, a “nonviolent communication” workshop that taught the tools pioneered by Marshall Rosenberg.

For hours we drove in the truck to the Zen Center, famous for its curative hot sulfur springs in the Los Padres National Forest, two hours southeast of Carmel. After passing the turnoff several times, we finally found the dirt road that, according to the printout of the driving instructions, was sixteen miles long with no signs indicating whether we were getting anywhere.

Doug drove like he was breaking a horse while I was bounced around, almost cracking a molar, and hanging on to the handle above the door like a monkey as we left a large, brown cloud of dust in our wake. Driving over large rocks while skirting the edge of a cliff, I bit my tongue, refusing to yell or scream. I confirmed my determination to keep silent when I squinted at the odometer and saw we were going only fifteen miles per hour. Finally, we arrived at the bottom of the gulch and opened the doors. Once the cloud of dust settled, we were hit with the eau-de-stink from the sulfur springs. As I was adjusting to the aroma, I spent about ten minutes unclenching all my muscles. I had to use my left hand to straighten out my right fingers from their hook shape.

It was a good thing Doug was enthusiastic about going on this retreat, I thought, as I struggled to wheel my luggage from the parking lot to registration and past the Buddhist temple to our rustic room with no electricity and rationed cold water. I was sweating buckets, wiping the layer of grime from my face, when I looked over at Doug, who was already flopped on the mattress grinning from ear to ear.

For three and a half days, we braved the heat, the mosquitoes, and the fart-like stink that faded and wafted. The food was gourmet vegan and was actually very good, though I was constipated even on that diet.

The workshop was held in a yurt—no air conditioning, of course. It was about learning a communication technique that uses empathy and connects with the heart and what is alive in the other person. I learned from the lectures that my language was considered judgmental due to my habit of using qualifiers and adjectives to describe anything that was subjective. The step-by-step process forced me to get in touch with my feelings. I learned that my feelings were a limitless ocean of hurt and sadness.

Doug seemed to have a very hard time connecting to his feelings. He stated in a very goal-oriented way, “I really want to learn how to do this!”

Before the end of the weekend, I could hear an argument erupting from the other side of the yurt. Doug’s group was chastising him for talking about how he felt when his “wife yells from across the house” (calling the family for dinner, to answer the telephone, things of that sort). The more vocal people in his group, which included a couple of therapists, told him to “get over it.” The teacher had to get involved and use Doug’s “feelings” around this topic as an instructional tool for the group.

Doug seemed hurt when he told me about the incident later. “This is something I need to work on,” he said.

I didn’t tell him that I didn’t need fifty-nine bloody mosquito bites and bad body odor to figure that one out. I did, however, feel empathy for him instead of the usual anger. I gave him a hug.

I learned more about my need for safety. I learned that beating myself up, “self-jackaling” in the workshop’s parlance, is about expecting too much of myself and feeling bad for even having any feelings or needs. I also learned that the way I communicated brought me exactly what I didn’t want. I decided that in the future I was going to plan on doing many more activities around self-discovery and healing.

We ascended and then descended the mountains to return home, back through the dust cloud and rocks, seemingly a little closer. We tried for about a week to implement the techniques of mirroring back what each of us was saying, going through the checklist until we each felt heard.

Then Doug said, “This way of talking doesn’t seem natural to me.”

I knew that I could continue only to work on changing myself. I signed up to attend another workshop in the fall on “self-jackaling,” or self-nurturing, but a week before the retreat I got a call saying that the workshop was cancelled since I was the only person who had enrolled.

Brad started his senior year of high school, and in November Doug and I went to Japan for two weeks for my 50th birthday gift. The focus of the trip was on the landscape, particularly all the different species of maple trees dressed out in all the fall colors.

We also spent considerable time investigating some of the artisanal crafts of Japan, from sake to Japanese woodblock prints. We met with the artist who made the prints and learned how they were made. We went to learn about the artistry in making rice paper. We went to botanical gardens where everything was art, the art of perfection, even in the way the gravel was raked. Everything was so clean and there was such order to even the tiniest detail.

We toured Buddhist monasteries, and attended a tea ceremony with an abbot at one of them. One of my favorite experiences was our visit to the Japanese watercolor shop, which sold not art prints but paint and brushes. The woman who ran the shop didn’t speak English, but somehow we managed to learn all about the full array and nuanced spectrum of the powdered pigments she sold, the different animal hairs used for the brushes, and the varieties of scroll papers.

We walked out of there with watercolor pots of paint in every available color, a selection of brushes rolled in a bamboo mat, and a neat stack of rice paper. Everything was carefully wrapped in tissue, then in brown paper, tied with twine, and then stamped with the shop information. Both of us were delighted—we practically skipped down the street. I was excited about my new artist “toys”; Doug was happy to see me happy. The woman waved until we were out of sight, also delighted by our large purchase. The entire country was an oasis from a life of chaos. Everything made sense, despite our inability to read signs or understand the language!

January 21, 2008

I am the luckiest woman in the world to have been born in 1957. Yesterday I had my car serviced and was given a loaner with XM Satellite Radio, a commercial-free subscription radio service that has been around for a few years. It has channels for just the 1940s, the ’50s, ’60s, ’70s, ’80s and ’90s, and many other specialty channels.

I had so much fun listening to all these types of music. If I was born at any other time, I don’t think I would have so thoroughly enjoyed all these different decades. I was so happy driving around doing errands and I purposefully took the long way around just to listen to the music. I spent $10 on gas before returning the car. I love music and singing; they are like a happy drug. In the afternoon, I put on some CDs at home and just danced for an hour. What a high—better than any drug I can imagine.

Music helps me to feel mentally better. I see my life as a soundtrack, so varied and complex. Music is like the recording of life, ongoing no matter what happens. The overriding current of music depicts all of the human emotions—joy, love, love lost, blues, fun, sadness. It is the poetry of the human experience, touching each of us in such a special way. Thank God for these artists, their gifts and talents, and the technology and ears to enjoy it.

I finally decided that I was going to realize the fantasy and build my own karaoke system. Using the Internet, searching night after night, I decided which equipment to buy. I shopped for the best prices and bid for equipment on eBay and then paced day after day with the anxiety of waiting for someone to give birth. I was crushed when I lost the bid and jumped for joy when I won. As the boxes of speakers, amplifier, microphones, cables, and assorted items I required began arriving, I started bidding on libraries of used karaoke CDGs that contained the music and graphic words for the screen. It didn’t take long for Doug to notice that something was going on.

“What are you doing?”

“I’m building my own karaoke system!”

“Why?”

“Because I want to,” I answered, sounding more like a defiant child than an adult. “And because singing makes me feel better.”

“Seems like you are spending a lot of money.”

“Would you rather we spend it on hospital bills or more therapy?”

I abandoned painting, the picture project, and everything else for a while, and worked day and night until I had installed and created a music book by title and by artist for more than four thousand songs, using special software. Then I started singing. Doug and Brad thought I was crazy. And I was—crazy about having fun.

At the end of April I went to the Chopra Center for a workshop called Emotional Healing. It was near the ocean, in Carlsbad, California, where the sky was turquoise blue. The air was clean, sparkling with the good ions. In a candlelit room, a beautiful woman named Amanda sang a chant in Sanskrit looking right into my eyes. She had a lovely voice, and I could sense her outpouring of love.