People in other parts of the country say we don’t have seasons in California but I beg to differ. Our seasons just blend into each other with a little less fanfare. I took these photos while out walking this morning and here is my proof that Spring has indeed arrived in Santa Barbara.
Days go by when I don’t stop to remember that my daughter is a cancer survivor. I even forget to be grateful that Isa is still here with us. Sometimes it feels like the whole cancer experience was a just a tragic movie that our family acted in a very long time ago—a movie filled with fear, angst and sadness but ultimately concluded with a triumphant and happy ending.
I’m to the point now where life is so normal that I actually hear myself complaining about the weather—and this is when it’s eighty degrees outside in February. Isa is nine now, completely cured of her leukemia, growing tall and lithe; busy with singing classes, piano lessons and Girl Scouts. She’s a joyful and funny child—at that lovely pre-adolescent age when everything about life is still fun and exciting—where she wakes up overcome with exuberance as she meets each new day. The beauty of her smile is intoxicating.
This is in stark contrast to me at age fifty-one, when I don’t recognize the old woman with wiry hair and bags under her eyes who stares back at me in the mirror each morning. My body aches as I tightly grip the handrails of the menopausal roller coaster as it throws me into loop after loop of hormone diminishing mood swings, memory loss and weight gain. It would be easy to complain about it all, but I won’t. Because compared to that movie I acted in a few years back, a few aches and pains, forgetfulness, and some grumpiness are really nothing at all.
I’m one of the lucky ones. I’ve been granted the luxury of complaining about insignificant things like menopause because I’m no longer stuck in a hospital room with my daughter tethered to an I.V. line as I watch the chemotherapy wreak havoc on her little body.
There are so many families out there right now who don’t have that luxury—families who are going through what ours went through—some who have little or no hope that their child will survive. I read about them on Facebook and my heart breaks with every story because I know their fear. I know their sadness. I want to promise them it will all get better, and for some it will, but for others there will be no happy ending to their movie.
I’ve realized that when I start to complain about the unimportant things and forget that I had my happy ending, it’s time to bring out that movie and watch it over again—to be reminded that there is still so much to be done to raise money and awareness for cancer research so that eventually, every family with a child diagnosed with cancer will have a happy ending.
My husband, Rene is running his eleventh Marathon in a few weeks, and my daughter, Leah has taken it upon herself to help him raise money for the Pablove Foundation for pediatric cancer research. Here’s the link: http://www.stayclassy.org/fundraise?fcid=257002 Check it out. Maybe your small gesture is just what’s needed to help a child have a happy ending like Isa’s. A little goes a long way.
Her favorite colors were orange and yellow. I didn’t know this about her until after she died—when I had to ask her family what color flowers were going to be ordered for her memorial service which I was helping to facilitate. All these years she’s been my friend and I never knew that she loved orange and yellow the best. How did I not know that about her?
For over twenty years, Susan Samuel and I have seen each other at least once a month at our music teacher meetings, recitals and musical events. Although she often talked about her family, I had never once met her two grown sons or said more than a quick “hello” to her husband on the phone. I knew that she was originally from Montana; that she was a micro-biologist before becoming a piano teacher and that she loved music. I knew that she was a brilliant, funny and kind person and that I always felt completely comfortable being around her. I knew that I loved her even though I never once took the time to tell her that. Now I wish that I had told her how much she meant to me.
Two weeks ago, Susan suffered a massive stroke. She was only sixty-seven and in excellent health. She went to her yoga class, came home at noon and was discovered unconscious by her husband later on that afternoon. That night, after emergency brain surgery, she was placed in drug-induced coma until a week later when the difficult decision was made to take her off life support. She died peacefully with her family at her side.
Susan’s memorial was held at the small church where I’m the pianist; Susan also held her piano recitals there, so her husband thought it would be appropriate to honor her in a place where she had a connection. The church was standing room only—people stood against the walls and packed the foyer to listen to the musical offerings and spoken tributes in honor of Susan. It was a meaningful and emotional service.
I had the honor of speaking at Susan’s memorial and this is a part of what I shared:
You may not know this, but we music teachers are a nutty bunch. We’re highly emotional, often insecure and have a habit of taking things personally. We can also get quite hot-headed if things don’t go our way.
It’s not our fault—we can’t help it. After all, we’re artists, and as artists our greatest desire is to bring as much beautiful music into this world as possible. Who has time for organization, protocol and good sense? Who has the skill and ability to handle all those annoying details so that recitals and events run smoothly and easily?
Well, once in a great while, along comes an artist who has all of aforementioned attributes—someone who was passionate about music AND was able to keep a level head and civil tongue, as well as a smile on her face. That artist was Susan Samuel. And to be honest, I don’t know how anything ever got done in our music teachers’ organization before she came along.
When I was nominated as president of our branch, I took Susan aside and told her I didn’t want the job. She looked me right in the eyes and said, “Yes, Jessica—you do want the job,” in that reasonable, no nonsense tone of voice which meant, you’re doing it whether you want to or not. Well, okay then. Then she invited me out to lunch to talk about the job responsibilities, and I thought, “Good. Here’s my chance to pick her brain about how she does everything so effortlessly.”
But that didn’t happen when we went to lunch. In fact, we never even discussed it. Instead, she asked me about my other life—my husband, my children; my gardening and my writing. It was the start of many meaningful conversations over the years where she would tell me about her life—that how before she was a piano teacher, she was a micro-biologist; what Montana was like during the summer; about her two brothers and their struggles; about her father’s antique car collection; about how she loved to play the piano. She especially liked to talk about her husband, Chuck and how proud she was of her two boys, Jon and Dave—and how Jon’s wife, Emilia was a keeper. Oh, yeah—and the grandson on the way. She really liked to talk about that—a lot.
Susan was always our go-to person. At one time or another, most of us in our branch have relied on Susan to give us the correct answer or word the sentence in exactly the right way. I know I’ve never once made an important decision without calling her first to ask her opinion. Last week, when I found out that Susan had suffered a stroke, I wondered when it would be appropriate for me to send out an email to the membership to let them know what happened and my first thought was: I need to call Susan and ask her what I should do.
The fact that none of us call Susan any longer is beyond my comprehension. That we won’t see her smiling face at our monthly meetings and listen to her laugh or watch her roll her eyes over something ridiculous. That she is gone leaves a huge space in our lives and I can say with certainty that our branch will never be the same again.
Susan touched us all with her warmth, her kindness, her graciousness and her humble nature. We will miss her intelligence, her wit, her funny, yet gentle sarcasm, and especially how easy it was to spend time with her. We will miss how she kept us grounded.
Yes, it’s true that we musicians are artists, and we often walk around with our heads in the clouds. Sometimes we ignore the details; sometimes we forget to be diplomatic; and sometimes we fly off the handle. But Susan set the bar for us—she showed us how to do it right; and how to do it well, and for that we will be forever grateful.
We will always love you, Susan. Rest in peace, our dear friend.
Since Susan died I have been walking around with a lump in my throat and a burning sensation behind my eyes. I realize it’s because Susan is the first close friend I’ve lost. I know there are many profound lessons to learn from her death, but as I’m in the midst of grieving it’s difficult to figure out what those lessons are right now. Perhaps it’s that I need to learn to live each day as my last, because it may very well be. Or that I should not be afraid to say aloud to those people I care most about the words I should have expressed to Susan: Thank you for being so wonderful. I love you.
I’ll leave you with two poems—the first on was written in honor of Susan by a member of our music teachers’ group and the second was read at Susan’s memorial by her close friend. I believe that both capture the essence of Susan’s spirit.
What I knew of you
humble rays of winter sun
like the piano’s ivory keys.
Your music is a hand
between our shoulder blades,
your steadfast kindness
humming within our ribs.
Let Evening Come
Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.
Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.
Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.
Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.
To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.
Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.
I would also like to express how thankful I am for your readership; for taking the time to leave a comment to let me know you’ve read my latest blog post; for all of your encouragement with my writing, and for just being a part of my life–cyber or otherwise!
With heartfelt gratitude,
Here are a few photographs of what is special to me about this time of year…
In most areas of my life I don’t take good very care of myself. I don’t exercise enough; I eat too many sweets and not enough green vegetables; I don’t spend money on new clothes for myself because deep down I believe I don’t deserve nice things (that, coupled with the fact that I hate the way my body looks in a dressing room mirror.) I spend a lot of time primarily taking care of the people I love while neglecting my own needs or wants.
Then I go and do something HUGE for myself: I agree to spend a couple of days in a rented beach house with ten of my best girlfriends whom I’ve known since our days together in junior high school. Somehow, against all odds, we’ve managed to remain close friends for almost forty years. Every so often we plan a getaway together without husbands or partners, without children or pets. Just us.
The beach house at Mussel Shoals was stunning—right on the water between Santa Barbara and Ventura with the most spectacular views of the ocean imaginable. Everyone brought a ton of food and we all pitched in together, cooking up gourmet meals and then cleaning up afterward. As the wine flowed and the coconut cake was passed around, we talked for hours and hours about our lives; our families, our joys and sorrows.
We laughed—actually, we hooted, we guffawed—we pretty much shrieked like uninhibited second graders running around on the playground during recess. We were vulgar and crass and stayed up until two a.m. talking trash, (Hey, Girl, Hey!) laughing so hard our stomachs hurt the next morning—or maybe it was just the red wine and chocolate.
After a brunch which included juevos rancheros and mimosas, we took a long walk on the beach and with the cold December wind whipping at our faces we shared our stories with each other. Some of our tales were joyful, filled with newly found love or excitement over a new creative project in the works. Other stories were filled with sorrow and devastation. And then we cried. We cried because we were in a place where we felt safe to open up and reveal our pain to each other without judgment or criticism—a place where love, concern and support for each other decanted faster than the bottles of red wine on the kitchen counter.
After spending only two days with these women, I became funnier, prettier, and more talented than I was when I first arrived. These women, who’ve only become more beautiful as they age, allowed my capacity for love to expand like a hot air balloon—and not just the love I feel for them, but more importantly, the love I feel for myself. They brought out my best—that special part inside of me that sometimes gets lost in the messiness of life.
As I drove toward home, I felt lighter and more emotionally buoyant than I have in a very long time. I was full up again, satiated with the unconditional love and acceptance that these women offered up so freely to me. As I headed back to my ordinary life, I realized that what I had just experienced over the past two days was indeed extraordinary and I felt blessed.
I’m really good at being my own worst enemy. Having just delved into this whole writing thing a little over two years ago, I’ve realized that although I’m relatively new at honing my craft, I do have something to share with others through my words. But I’ve also found that I’m much too eager to rip off all my clothes and dive into that dark pool of you suck way more often than is good for my literary health.
Case in point: I belong to a writers group which meets twice a month where we share our work in a positive and accepting environment. Recently, the group has gone through some changes (several writers have left and quite a few new writers have joined) and at our last meeting, I was impressed as well as a bit intimidated by the high quality of writing that was shared. Some of these folks are real writers—novelists, poets, essayists, even professional editors—who have been at this writing thing for years. Not only do they write well, but they read their work with drama and flair. Also, a number of them are originally from the literary Mecca of New York—another reason for this Santa Barbara native to feel like a West Coast country bumpkin.
When it was my turn to read, I shared a chapter of my novel which, in my opinion fell a bit flat. Perhaps because the new members hadn’t heard the previous chapters, they were a little lost as to what the story is about or maybe they just didn’t like it. Whatever the reason, I didn’t get the Woot-Woot response I was hoping for and that fertile seed of doubt about my ability as a writer began to sprout. By the next morning it had grown into a thorny bush of angst and uncertainty.
Now, I understand that self-doubt is a zealous assassin of motivation and inspiration, and I’m the first one to encourage others to keep at it no matter what. My mantras have always been: Find the lesson and Look for the positive, but this time, I couldn’t seem to get my head above that murky water.
Usually, the morning after my writers group, I’m inspired and excited to write more. I had carved out three hours in my schedule that morning to write, but I just couldn’t get myself to sit down at the computer. Instead, I busied myself with mundane tasks around the house that I’d been putting off because I’d been so busy devoting myself to daily writing. As I folded laundry and scrubbed the bathroom, the words you suck burned through my thoughts like the caustic scent of bleach. I was ready to throw in the towel and soon decided that maybe it was a good time to take a break from writing my novel.
Then after two days, something interesting happened. I began to itch to get back to writing. I missed interacting with my characters and finding out what they were going to do. I realized that the process of daily writing was really something I look forward to—it’s something I love doing for myself and my perception of what others thought of my writing was just that—my perception. I live my life, I experience my reality—so what really matters is what I think.
I said to myself, Boy, Lady—you’ve really got a lot of nerve—acting so critical and damning toward yourself—you would never dream of treating a fellow writer in this way—enough already!
So for today, I’m rescuing myself from that murky pool of despair and I’m choosing to believe that someday, someone out there will enjoy reading what I have to write. And if not, well I’m going to just go ahead and enjoy writing it anyway.
Today is the first day of November: All Saints Day or Dia de los Muertos (Day of the Dead). It’s the perfect opportunity to remember those who have left us and reflect upon how much they meant to us. Just by thinking of them today, we can keep their memories alive in our minds and in our hearts.
It’s very sad, indeed. Isa has never had a grandfather, as René’s father and my father both died before she was born. My father has been gone for almost thirty years now and it seems as if I think of him more often as I grow older myself. It’s become a regular occurrence that his memory comes to me when I’m reading or writing and I don’t know the meaning of a particular word. I think to myself, Oh, if only Dad were here—I could ask him—because when I was a young girl, every single time I needed to know what a word meant, he always knew.
My dad still shows up in my dreams sometimes. I’m the first to admit that because of his alcoholism, I’ve carried the weight of a heavy resentment toward him for many years. But now in my dreams, I’m no longer the victimized and martyred little girl as I used to be. I’m just a daughter who’s over the moon to see her daddy again. And as if I’m still half his height, I stretch my arms up high to hug him, the soft cotton material of his Brooks Brothers button up shirt brushing against my skin. I bury my face into his neck, the scent of nicotine and Old Spice coming off of him like a stale and comforting perfume. I always ask him the same question: “Where have you been all this time?”
Lately, I think of my dad every time I walk through the living room. It’s that time of year again when we set up our altar for Dia de los Muertos—Day of the Dead, and his photograph is the focal point of our altar. He’s surrounded by skulls, candles, marigolds, pan de muerto, and most importantly, by the smiling faces of other relatives and friends who have also left this earth.
I think he would be surprised by the number of faces placed next to his: his two younger brothers; his granddaughter, Gillian; the many faces of Isa’s young friends who’ve all died from cancer. He might be a little bit pleased that on this altar he’s still the patriarch—the grandpa watching over them all—a part of something that we who are still here on this earth have yet to understand.
It feels good to remember that in more ways than not, my dad was a decent man. He was flawed, as I am, but he did the best he knew how to do, just as I’m doing the best I know how to do. And despite his imperfections as a father, he must have done a few things right along the way.
After all, I turned out pretty good.
I never expected to see Alice* again. Our family had met her over five years ago when our daughter Isa was first diagnosed with leukemia at the age of two and a half.
Shortly after Isa’s diagnosis we were invited to attend the American Cancer Society’s Camp Reach for the Stars—a weekend long outdoor camp for families who have a child with cancer or a child who has survived cancer. It’s an opportunity to relax and have fun with other families who have walked in your shoes; who know exactly what you’re going through and because of their experiences, can offer you hope that your child will make it through treatment and be well enough to come back the following year. Camp Reach for the Stars is where we first met Alice over six years ago.
The weekend camp experience is full of fun activities—swimming, hiking, zip-lining, arts and crafts, movie night and a talent show. Every child is assigned their own personal counselor so the parents can relax by themselves, have a massage, or just lounge by the pool. Three times a day when the bell rings, we all hike up the hill to the dining hall and enjoy delicious home-cooked food and great company. Over the years, we’ve all become one big family. Since we began attending camp six years ago, Alice has always been a vital presence at camp—her goofy sense of humor and loving spirit always managed put a smile on our faces no matter how discouraged we felt.
But last year, at the end of camp when everyone gathered around the fire pit for the closing ceremonies, Alice’s mother, choked up from the tears she could no longer hold back, told us that this would most likely be the last time they would be bringing their daughter to camp. A few days earlier they had found out that Alice’s cancer had relapsed for the fourth time since she was first diagnosed at the age of nine. There was little hope that any kind of treatment would get rid of the insidious tumor that had wrapped itself around her heart. Our entire family was devastated by this news. All I could think was that I couldn’t bear the thought of coming back to camp without Alice being there.
The thing is, once your kid gets diagnosed with cancer, whether you want it or not, cancer becomes a huge part of your life. It’s like receiving a lifetime membership to the cancer club. You end up meeting and becoming friends with many families who have had to deal with a child battling cancer. This can be excruciating at times because sometimes these children whom you meet and end up loving die from their cancer. You realize you have to do everything in your power to help find a cure so that more of these children don’t die.
So here I go again. It’s September, which means it is PEDIATRIC CANCER AWARENESS month and it’s time for me to talk about pediatric cancer again. Oh no—not again, you say. Isn’t she tired of writing about cancer yet?
Well to be honest, the answer is YES. Yes, I am tired of writing about cancer. In fact, I’d prefer to not write about it at all. I’d prefer not to hear about children who are newly diagnosed. I’d prefer not to see photographs posted on Facebook memorializing children who are no longer alive because cancer has taken their lives. I’d prefer not to see the agonizing fear in the face of another parent who is terrified about what’s going to happen to their child.
I’d prefer that pediatric cancer be wiped off the face of the earth.
But since that’s not about to happen anytime soon, I figure it’s best to keep talking about it and writing about it as much as possible with the idea in mind that perhaps someone reading this will begin to realize that more and more children are diagnosed with pediatric cancer every day, and that one day it might just be them or someone close to them who is directly affected by this disease. And maybe—just maybe, this awareness will prompt them to act in some small way to make a change—whether it be raising money for research, helping out a family in need, or simply just having a conversation about pediatric cancer from time to time. I truly believe that simply talking about something important can incite change, even in a very small way.
Last weekend, our family attended our sixth Camp Reach for the Stars. Our two oldest daughters, Nora and Leah volunteered as counselors for the camp. We had a marvelous time hanging out with everyone, laughing; eating, joking—especially with Alice. Yes—Alice was there. She was back at camp in all her glory, with no sign of cancer in her body whatsoever. The radiation zapped that tumor into smithereens and now it’s nothing more than a hazy image on an MRI filed away in some doctor’s office.
So let’s keep the conversation going. Let’s work to find a cure. It’s true that children do die from cancer, but this time, whether you believe it a miracle occurred or not, one child did not die.
There is always hope.
See you next year, Alice!
*I’ve changed her name to protect her privacy