by Taylor Black
Why?
I never thought of you as religious.
It wasn’t religious, Taylor, it was spiritual.
We don’t get so caught up in semantics here, Pops. Religious, spiritual. God, Allah, Jehovah, a rose by any other name.
Would smell as sweet?
Uh huh. Religious. Spiritual. Here they mean the same thing. I mean “I am who I am,” right?
So are there trellis works there with little angels on the molding?
Huh?
You said you saw heaven when you were seven and there was a trellis with little cherubs atop the thing.
I did, didn’t I?
Yes. So was that correct?
You’ll have to find out for yourself, Pops. I don’t do “trailers” to borrow a movie term.
I think I’ll dream about you tonight, Taylor.
Yes, Pops, I think you will. “We are such stuff as dreams are made on; and our little life is rounded with a sleep.”
Shakespeare?
The Tempest, Pops. But your life doesn’t have to be one.
Taylor’s Diary
July 14, 2001
CANCER!!! They said as it smacked me in the face,
TUMOR IN HER HEAD, THERE IS NOT TIME TO WASTE.
CUT HER OPEN LET’S TAKE A LOOK
LET’S SEE HOW MUCH OF HER BRAIN IT TOOK.
POISON HER BODY, LET’S SEE WHAT THAT DOES.
ERASED ALL THE GIRL THAT SHE ONCE WAS.
MAKE HER SICK EVERY DAY, TIRED EVERY NIGHT,
IF SHE REALLY WANTS HER LIFE, WE GOTTA SEE HER FIGHT.
Bring on the battle, bring on the foe. A gruesome war I shall prevail I know.
Weak and weary, I’ll battle to the death, try though it may it won’t take my breath.
Chapter Thirty-Seven: Hair
The week after the 60 Minutes program aired in April 2002, a few teachers at my high school came up to me and said, in confidence, that they too had lost a child. It was as if I had just been initiated into some very secret society for those parents only seemed to talk about their loss with someone who could understand what it was like.
Reading Taylor’s diary from June 2001, I remembered we still had high hopes as we set off for that last visit with “Nana,” Taylor with her “hair” in hand.
On the way to my mother’s from the airport in a rental car, Taylor took off her “hair,” put a bandana over her baldness and turned on the radio and heard Ace of Bass’s “The Sign” on an oldies station. It was Taylor’s favorite song one year, years before, and it brought back memories to her of when she was little. “I’m amazed I liked that song so much, Dad,” she said. “But I was just a kid.”
“Just a kid.” She had just graduated from high school and here she was talking about when she was “just a kid.”
We drove on U.S. Route 30 through the metropolis of Wayne, passing the hair-dresser where Taylor went with her grandmother when Nana had her hair done on Saturday mornings. Nana loved to show off her granddaughters at the hairdresser, and then spoil them with a Dairy Queen ice-cream cone across the street. We passed the railroad station where the girls and I picked up the train for our Philadelphia excursions to the Art Museum, made famous, ironically, by the movie Rocky and the Franklin Museum, a wonderland of science geared toward children, where Taylor first walked through a larger than life replica of a heart. Those were what the poets call, the halcyon days.
We drove on past the Valley Forge Military Academy and wound ourselves around the tree-lined roads, and turned onto Knox Road and climbed the hill that lead to Valley View Lane.
When my parents bought the house a few years before my father died, a resident of Valley View Lane could actually see the valley below. But in the decades since my parents moved in, the growth of the trees had erected a verdant curtain and the valley was only visible in the winter season when the trees resembled wooden skeletons awaiting the leafy rebirth of spring.
“Dad, can you stop before we get there?” Taylor asked. “I have to put on my hair.”
By “hair” she meant, of course, “wig,” but oddly she seldom used the term “wig,” except in her journal. Indeed, the “wig” was natural hair, a gift of an incredible neighbor, Patricia Jordan, who in many ways had been a surrogate mother to Taylor since she was a three-year-old. Pat was Katie’s mother and Pat had asked me once to take Katie and Jamie for the weekend as their oldest daughter was in the hospital in Miami. Four little girls for a weekend was no big deal. I had slumber parties for Taylor and more kids than that. I don’t know how many single fathers host slumber parties for eight or nine girls, but all the mothers treated me as if I was one of them, and I suppose I was a bit ahead of the curve back then. They nicknamed me “Mr. Mom.”
Taylor, “hair” in place, was ready to meet her grandmother.
Nana knew nothing of Taylor’s brain surgery. My mother was beginning the process of “the long goodbye” as President Reagan once commented about his own condition, and my brothers and I had hired a geriatric specialist who arranged for a woman to stay with my mother 24 hours a day.
Taylor had to make the decision as to whether or not to tell Nana of her condition. It was hard to see my mother in such a state. She had been such an active person. She was involved with the crisis telephone hot-line called “Contact” and she taught English to exchange professors’ wives at the University of Pennsylvania. Much to my father’s surprise when he arrived home from the office, my mother would have a Korean, Japanese or Indian couple sitting at the dinner table and I would learn something about the culture of their country as I ate my supper. But now it was obvious that this articulate woman was no longer “there.”
I retreated to the downstairs family room, which became my nest when I visited my mother. My daughters would commandeer my bedroom which was next to my mother’s. In 1987 when my marriage was going south and I had gone north to my mother’s, I drank quite a bit of the booze she had on hand in my father’s bar which was the prominent feature in the family room, my father being of the double shot of Canadian Club on the rocks type and a borderline alcoholic who hadn’t lost his amateur status. After that little sojourn as a sot, I sought help from a renowned recovery program, but for the next ten years when a sober son visited his mother, alcohol was absent from the bar. My behavior in 1987 reminded her of the nights when she was a girl and had had to put her drunken father to bed. It was truly a surprise when, ten years later, she trusted me enough to return the liquor to my late father’s bar. One visit, in my 7th year of sobriety, my mother asked me to take the garbage out to the cans in the garage, and I popped the lid on the wrong garbage can and, what-do-you-know, there were all the bottles from the bar. I never mentioned to her that I found the bottles by mistake and she went to her reward unaware of that fact, but I have told that story over to other recovering folks and it never fails to get a laugh. I was actually sitting in my father’s old Lazy Boy remembering all of that when, after about thirty minutes with her grandmother, Taylor descended to the family room and announced, “I’ve decided not to tell Nana. It’ll only confuse her.”
It was a sad but practical decision for Taylor to make, I realized, and Taylor would write about it in her journal a day later, as included earlier in this volume.
I write to you from my Nana’s attic, one of the most comforting places in the world for me. I always thought, If there is one thing that is constant in the world it is my Nana’s home in Wayne, P.A. I have come to the conclusion that there is nothing constant in this crazy world. I have not seen my Nana in 3 years, up until now. She has aged a lot in that time. She has a sweet woman that lives with her now and helps her out. She still knows what’s going on but sometimes she is a bit forgetful. Enough so that we have not told her about my disease. It would confuse and frighten her. Hell, it confuses and frightens me! So, needless to say I have spent the majority of my stay peeking around corners to see if I need to put my wig back on before she saw me. But it is a pilgrimage that I needed to take in light
of the past year I’ve had. I needed to find solace and retreat once more to my comfort zone. What I found here was change, which only reiterated the fact that I need to move forward and start anew. Having said that, our trip concludes on Sunday and I leave for Orlando on Monday. And so begins “Chapter 2: The Disney Years.”
I suppose the last trip to her grandmother’s had taught Taylor that the only thing certain in life is change. It was part of the concept of “bittersweet” for that was the “bitter” part of the trip, the recognition of a verity. The sweetness was the amusement that Taylor and I shared in her “hair.”
She and I took turns sitting next to my mother in her den as she sat like a zombie watching cable television. There would be lucid moments, of course, but for Taylor it was difficult because Nana confused her with her other grandchildren. When Taylor’s hair became a bit hot, she would descend to the family room and I would take my post beside my mother in a version of the changing of the guard. That way, Taylor could take off her “hair” and have some peace without having to act for Nana’s sake. One night Nana insisted that Taylor sleep in the second bed in her room, and poor Taylor’s noggin was confined to the wig for the entire night. Even the woman who looked after my mother didn’t catch on to Taylor’s subterfuge with the hair.
The sum total of our visit was only three days, for in the words of Benjamin Franklin,
“Fish and visitors smell in three days” and Taylor and I packed our bags, said our goodbyes, and when we were out of sight of my mother’s house at the end of Valley View Lane, Taylor exhaled and took off her ‘hair’.
“I’m glad we came, Pops,” she said.
“Nana is in bad shape, Taylor.”
“I know. It’s sad. But we were right not to tell her. Promise me you never will.”
I remember answering “of course” but I wonder now what she was really trying to say to me. We would keep that promise to Taylor, and my mother would die about a year after Taylor did, not knowing her granddaughter would be there to meet her. But that’s what Taylor wanted, and we honored her wishes.
Taylor’s Diary
August 7, 2001
I haven’t written in quite some time. I guess it’s just a lack of action in my life. I have been doing the chemo pills & amazing enough it’s true that these ones don’t mess w/hair growth. I have a little bit of hair peeking through. These pills aren’t event close to the IV chemo I was getting. Temodar is a walk in the park next to those. I have gotten sick a couple of times from them but it was nothing that I couldn’t handle. Well, I start UCF in 13 days and I move into the new place on the 16th.
Well, what else is new? In the past month I have been doing a bit of traveling. I went up to see Jeff in N.C. for about 4 days. And then just recently I went to Atlanta. Both trips were wonderful. In the latest on the cancer front I started to see my doctor in Orlando; Dr. Nick (I can’t pronounce his last name, Avergoloporus sp?). He is a very nice man & using my very refined radar I can tell that he is a good doctor.
The American Cancer Society asked me to speak @ a conference they’re having the day after the scholarship luncheon. I’m nervous but sometimes it makes me feel better to express this rollercoaster ride w/a roomful of complete strangers. Lately I have been anxious. I’m not sure why, but it just sits there hanging over me. It’s an accumulation of everything I think. My life has been drastically altered in this past year and it will never again be the same. I’m supposed to be carefree. I’m not supposed to worry about taking pills, eating right and getting enough rest. That’s what you do when you grow up. Not now. I’m not supposed to have a bald head and tubes hanging out of my chest. I’m supposed to have long locks and a good tan. Why didn’t this happen for me? Why do I have to be different? The woman from 60 Minutes called. She says that my story comes across too rosy, not enough pain & suffering and she’d like me to film the harder parts of it. For heaven’s sake does the woman want to film me puking? Or maybe I should just go through another brain surgery so they can film that. FUCK THEM.
When that woman has been through what I’ve been through, then she can tell me what comes across is rosy. Until then, they can take their cameras & shove it where the sun doesn’t shine.
There seems to be some stigma w/cancer. It seems that once you get it the world expects you to lie in bed and wait to die. And that will be just the thing that kills you. To heal, you have to truly believe you will and not let it take over your life. Make it as little a part of your life as you possibly can. I’m not saying ignore it. Just don’t let it consume you. Fight the bastard until the bitter end. Because that’s what it is: a BASTARD. I really don’t believe cancer is the right word for this disease. It doesn’t mean enough. But, I suppose cancer is preferable because the word can is sitting right there & that alone gives you hope or at least it gives me hope.
Taylor’s Diary
August 8 2001
This is not a role I chose for myself,
Bald, sickly and pale.
All the things I was not I have become.
Forced to be the person you see now.
With the wounds of battle still apparent
And some not so.
I forge ahead, taking on this role to the best of my capability.
Thinking all the while: this does not suit me.
This is not what I was made for,
And then the daunting thought: perhaps it is.
Chapter Thirty-Eight: Commencement
Retired former teacher colleague Dick Sievenen and I were sitting together in the upper deck stands at the gym at Martin County High School, “Home of the Fighting Tigers,” while down below our daughters—born three hours apart at Martin Memorial Hospital—were walking in to the packed room to the strains of Pomp and Circumstance.
“Commencement,” the word actually means a beginning, but for the adolescents in caps and gowns marching to their rows of folding chairs for the graduation ceremony, this night meant only an end to high school and each and every one of them felt like Ferris Bueller on his day off.
Dick and I, as fathers, had a bond because of the coincidence of our daughters’ births and so it seemed logical to sit next to him and away from Taylor’s siblings and her mother. When the music stopped, Mikayla, Taylor’s niece, called out “Tay Tay” to Taylor below, and Taylor smiled at her niece and put a finger to her lips in a “shhhh” sign. Meanwhile a cameraman lurked by Taylor, the ever-invasive CBS eye of the program 60 Minutes which had sent a cameraman to capture Taylor’s graduation on film.
“Courtney didn’t go to her graduation,” I said to Dick. “But Taylor wouldn’t miss it for the world.”
Courtney would go on to skip four graduations: high school, junior college, undergraduate and graduate. Taylor only got one chance at a graduation and it was a big deal to her.
“I’m so glad I can walk with my class, Dad,” she said to me a few days before the ceremony.
“I didn’t know it meant that much to you,” I said.
“It’s my friends, Dad, and our last time to be together.”
It was more the party afterward than the ceremony, I realized, the alcohol-free party that the YMCA put on all-night after commencement. Merchants in town donated prizes which were raffled off for the students who attended, and the highlight was a new car provided by a local car dealer. The after graduation party had saved more than a few lives over the years as the students no longer felt the need to have keg parties after commencement.
I had asked Taylor about the all-night party.
“Do you think you can handle the party all-night, Taylor? Won’t you be exhausted?”
“It can’t be as exhausting as chemotherapy, Dad,” she replied.
I could only smile.
After Taylor’s name had been called early in the alphabetical roll call of graduates, a CBS cameraman came up to the upper deck of the gym where we were seated. I noticed the women in the family grabbing their compacts and checking their hair like so many Gloria Swansons at
the end of Sunset Boulevard getting ready for their close-up from Mr. DeMille. I even realized that I had been running a comb through my own hair, not that it did any good. But the cameraman only smiled at us and pointed his camera down at the graduates, zooming in on Taylor, I assumed. Taylor was the star, we were only the extras.
Taylor’s graduation was a hopeful sign for all of us. This was a normal progression. She had graduated from high school and now she was going off to college. In a few weeks she would be moving in with Gia and Karly and going to community college in Orlando. The doctors at Duke had said to “go on and live your life, Taylor,” and at the end of May, 2001, it seemed like maybe, just maybe, she might beat the brain tumor. The new chemo was mild and seemed to be working, and that at least was hopeful as I watched her from the stands. She sat in a folding chair below me, she was all smiles and her “hair” was working perfectly and was securely on her head.
Commencement: it means a beginning, but, in retrospect, for, Taylor, it was the beginning of the end.
Taylor’s Diary
August 10, 2001
As I run my fingers through my hair, the clumps begin to fall,
And as the hair hits the floor I am freed
Though I do not know it yet,
All that I knew of myself has been washed away,
My page is clean to write a new fate,
One of doctors and drugs
Surgeries and sickness.
One of strength.
Chapter Thirty-Nine: Grandchildren
In my dream Taylor and Jeff appear to be about thirty. They are sitting in their Florida room admiring the well-trimmed and decorated Christmas tree, one that Taylor has chosen as she was always the Christmas child. Two little children, a boy about two and a girl of four or five, both dressed in Disney pajamas, are rattling the presents beneath the tree, trying to discover just what is hidden beneath the fancy wrappings. Taylor is smiling at Jeff and then she sees me and says,