Throughout my mom’s illness and during the aftermath, a number of people stopped short with me.  They sucked in their breath when starting to complain about a problem they had, or minimized their pain regarding a certain issue. ”You know, this is nothing compared to what you are going through” or “I shouldn’t even be telling you this.”  If I were more of an orator and less of a writer, maybe I would have told them this:

No.

No.

No.

Buddha had it right. We are human so we suffer. We suffer and we suffer and we suffer. Your pain is real, as though it was wound up in the helix of your DNA.  Maybe you still have a healthy mother.  But you have walked through other challenges that I have not experienced. My pain doesn’t separate us, in fact it brings us closer.  We are united in the experience of loss. 

To say that all human suffering is equal is both true and not true.  There are tragedies which chill us to the core, which break a human being, which cause entire communities to light candles and whisper and shed tears.  War crimes. Torture. Abuse. I’m not speaking of these horrors, which seem so senseless and wrong but do teach us that there is no limit to human suffering.  I am speaking of more of our everyday tragedies.  Illness, heartbreak, disappointment, death.  Even the wealthiest and the most blessed walk beside us with these.

Suffering is something that cannot be escaped, so don’t deny your feelings.  They are real, they make you human. At the same time, listen to others.  I take care of cancer patients, but I have never had cancer.  I hear their stories 5 days a week, and while I have never had a somber doctor stand over me and tell me its growing, its spreading, I need chemo or surgery or radiation, tell me I may lose my hair, my fertility, my limb, or my life, I understand a little bit (not entirely, but a little bit) of what they go through.  Their stories help me find gratitude, help me appreciate the transient gift of health.  Maybe my story helps you find gratitude for the mother that you have, whether she is your best friend or someone you barely know.

In losing what we love the most, we are shown the one thing we can hang on to: a spirit which is beautiful and buoyant and resilient, more than we ever imagined it to be.  In our pain and suffering, we can become teachers, we can inspire.  Our tears, our long nights on hard floors, our deep hunger has brought us to where we are today.  The darkness has taught us to appreciate the light.

See, your story is important– as important as you are.  I want to hear it from your lips, your pen or your flying fingers.

 

let flowers bloom. my birthday Adenium

Today is my birthday.  I’m 32.

In general, the years are speeding up as I age, yet this one has felt long.  I can’t remember my birthday from last year very well, other than I spent it away from my mother who was in Houston, and was feeling the special flavor of unease you feel when separated from a sick loved-one. So very much has changed since then.

I have struggled with grief and despair this week, but this birthday seems particularly blessed.  I have been touched by unusually thoughtful gifts and expressions of love.

• my coworkers pulled together money to purchase a piece of art that was for sale at the Cancer Center, simply because they noticed I would look at it every day and smile
• a woman I deeply enjoy but have never had the opportunity to know well gave me an exotic plant crowned with beautiful pink flowers. Her husband nurtured this plant from seed for years in his greenhouse.
• a woman I discharged to hospice months ago, fully expecting her to pass away soon, walked into the Cancer Center and gave me a huge hug, some small gifts, and a card covered with butterflies.
• and more…

I have often felt awkward on my birthday- uncomfortable with the attention and the unilateral gift-giving.  This year I feel profound loss, yet an even greater gratitude for what I do have. Every card, gift, text message and embrace has been meaningful and beautiful.  I am part of a huge network of love, with lacy fingers that envelop the globe.  No, I don’t deserve it, but in life we get both less and more than we deserve. I’m 32, and way overdue to learn to accept a love that makes me shudder with its magnitude.

My friend told me “Its your butterfly birthday!” And she is right.  Grief is transformative. Our losses can bring us to the brink of madness, and at the same time blast apart our shell, open our hearts, let the light in.  Grief rolls in like a 10 armed Hindu goddess that can destroy the universe with a flick of a wrist and maniacal smile, yet if you don’t go down in the fiery blaze she’ll also take away that which limits you.

I wish we could keep our loved ones by our side forever, but the universe is built on death and destruction.  Still, flowers bloom in the ashes, babies are birthed in pain and blood, the worm is torn apart to become a winged thing of beauty.  This is the mysterious, wonderful, terrible, and awesome way of the world.

mom and her mild mimosa

 

I was in Houston yesterday for about an hour, on a layover from Tucson to Miami for a research protocol meeting.  I was in Houston this time a year ago, following my mother’s first cycle of salvage chemo, for Mother’s Day.  Time in an airport hardly counts, but it felt familiar; out my little airplane window was the same flat expanse of land, the strangely even tree line (as if the trees got together and reached consensus to which height they would collectively reach), and the billowing cloud cover. 

Mother’s Day 2012 is looming, and my ability to deny the existence of this holiday is waning.  I wish I could embrace memories of years past, but I seem to remember nothing before Mother’s Day 2011.  I have fuzzy recollections of Sunday brunches, of rushing to find a card or order flowers.   Most are lost to me now.  I think it always seemed like a “Hallmark Holiday.”

Last year was the first time I saw her really sick.  B-Cell Lymphoma patients often get blasted with a five-drug combination regimen, and Mom sailed through that regimen with very minimal side effects. Naturally beautiful, she looked positively radiant when it was confirmed that her lymphoma was still growing, that she had not achieved a remission with the very aggressive initial therapy.  “I just feel so good!” was her mantra, all the way to MD Anderson Cancer Center where she participated in a clinical trial.

It was at the end of this first cycle of second-line treatment when I rushed into her hospital room in Houston Texas in May, 2011.  Who I saw there didn’t look like my mother.  She looked like the hundreds of cancer patients I had taken care of in the hospital, swollen, slumped over in bed, attached to an IV pole loaded with bags and tubes.  She was wearing oxygen. 

“Mom!”

She woke from her doze, flashed the lovely smile that would stay with her right until then end.  “Hi sweetie.”

She was nauseated and had diarrhea.  Always the optimist, she would squeal “I think I’m shitting out my lymphoma!” Still, she perked up and she was discharged on time from the hospital a few days later, in plenty of time to celebrate Mother’s Day.

We filled the Houston apartment with flowers, and I bought her bright pink loungewear that somehow made her look young, almost like a teenager.  I gave her a journal I had started with some of my favorite memories we had shared, what I loved the most about her.

“Please write to me too!”  I entreated. I knew the odds were against that we’d share many more Mother’s Days, although I also didn’t anticipate she’d be headed to hospice a mere 6 months down the road. Whether or not she was cured, I wanted to hang on to everything. I wanted to be able to run my fingers over the paper she touched, see her handwriting, memorialize what we shared, fill in the blanks of any forgotten detail.

“Of course!” She was always polite and agreeable.  But she never wrote a single word in that journal.

We made plans to go out to lunch at a café near the Woodlands, a rather-contrived shopping and residential development north of Houston.   It was busy there.  My mom was tired after the car ride, and Grandma was cranky.  There was a loud, bustling energy in the place which didn’t quite fit with our weary and stressed out group, but we did find a table and sat down. 

“You should have a mimosa!” I encouraged. This was a special day, her special day.  Nevermind she had just been blasted with 4 days of chemo and had constant low grade nausea.  That should step aside for what was suddenly an important holiday, right?

I ordered her one, and to her it tasted awful.  I made the bartender re-mix the drink (“you need to make it very mild” I ordered with a snotty tone). Still, things were different now, and she couldn’t enjoy what she used to, even if it was very mild. She was tired, she was diminished.  Between the toxicities of treatment and the fact that her cancer incessantly marched forward after only a brief stumble from the onslaught of chemo, lymphoma was starting to get the best of her.  Mother’s Day was before the series of terrible setbacks that defined the summer, before we knew just how resistant her cancer was, how hopeless the search for a cure would be.  But it was when I perceived the slow fade that I hoped was simply chemo side effects (“she’ll bounce back for sure, right?”). It actually was the quiet, whispery beginning of the end.

I’m in Miami, at a meeting related to a new research protocol.  I took a walk around prior to the start of the program, and when I was approaching my hotel after strolling by the water I found a lovely, red-cheeked cockatiel, squawking on the ground. Perhaps escaped from the confines of domestic life, or perhaps abandoned by those who could no longer care for him, he appeared ill-equipped for life on the streets of Miami.  There are strong weather currents about, and his yellow plume was ruffled in the wind.

“Here, birdy!” I crouched next to him. 

He appraised me with distain.  Squawk!

“C’mere sweetie!”  He started to waddle away from me.   I’m not sure he could fly.  Squawk!

He awkwardly moved towards a concrete wall and sat there.

I wanted to pick him up or pet him, but wasn’t sure that would make him feel any better.  I had no vehicle, no way to take a bird in my hotel room, and a meeting to attend in less than an hour.  There were only a few hotel staff around, running too quickly to acknowledge me, let alone stop to help a distressed cockatiel.

So I left him sitting, facing the wall, this vibrant, lovely creature.  And I wept for my helplessness, my weakness, my limitations.  I cried for the beings of the world that can do nothing but face the insurmountable barriers before them and shriek, and I shed hot tears that beautiful, living things are often discarded like trash. 

I wish things were different.

I just smeared on the last of a bottle of lotion my mom gave me.  It was from the Body Shop,  “Dreams Unlimited.” We were shopping the weekend before they left for Houston, seeking a cure at MD Anderson. Grandma wanted lotion, and it was the only scent she liked.  I liked it too, so along with the bottle for Grandma Mom bought me one as well.  Its hard to believe I won’t get more gifts from her, and when things that remind me of her wear or run out I feel the loss all over again.

Its just lotion, and too perfume-ey at that.  It seems silly to cry about the end of a bottle of lotion.  But I can’t help myself.

I tried to save it.  I didn’t use it that often, but it started to evaporate in the bottle. Some things just slip through your fingers, no matter how much you try to hang on.

I wish dreams really were unlimited.  But sometimes they run out of gas, hit a wall, die on the vine, go up in flames.  Sometimes new dreams grow from the ashes of those that burned to dust, and sometimes not.  But there are dreams that just aren’t meant to be.  Heartbreaking, isn’t it?

Sly. December 2011.

My mother’s cat Sly passed away this week. He started to decline during her final months. When he began biting my stepfather without provocation, it was clear the time had come for him to be euthanized.

My heart is heavy. This cat appeared in our home the day of my high school prom. My mother was desperately trying to finish the hem on my best friends prom dress when the doorbell rang. I went to the front door and my mother’s friend handed me a tiny orange kitten, which she had admired in a pet shop window. “Give this to your mother!” She flashed a mischievous grin.

I went upstairs with the squirming kitten. “Mom, Marilyn brought us a cat!”

My mother was hurriedly pressing out the prom dress, with the help of my friend who was wearing only her hose and heels, hair perfectly coiffed in a late-90′s updo. My mother, always cool under pressure, stared at me with a mix of disgust and amazement and responded with a tense “oh-kay.”

In this chaotic scene, I placed the kitten down at my feet. He strolled across the smooth hardwood floors, ate from our elderly cat’s food dish and promptly used the litter box. He had arrived. Even though as my friend and I were departing for prom (fully dressed), my mom muttered “we will deal with the kitten later!”, there was no doubt he was home.

He arrived during the last gasp of my childhood, a few days before my 18th birthday. I remember my exasperation as he’d run across my keyboard as I typed out my college papers. I would dance with him in my arms, spinning across those smooth hardwood floors to the music of the Gypsy Kings. Despite all of the comings and goings of young adulthood, when I would arrive at my Mom’s house after an absence he would always let me scoop him up and he’d delicately touch his nose to my lips.

He was definitely Mom’s cat. He slept curled up on her pillow every night.

He gradually became less active through the years, but seemed well at the time Mom left him in the care if a friend while she sought treatment at MD Anderson. When she returned, having lost the functioning of a kidney and her dream of a cure, Sly started behaving strangely. He would howl at random times throughout the day and night, a bone-chilling, painful moan. The vet found nothing wrong except for arthritis, but pain medicine was not effective.

In sharing our lives with these creatures, we form deep bonds which stretch throughout the years, a universal, archetypal connection. Mom and Sly had such a bond that he followed her to the other side.

He lived a good life, but died of a broken heart.

I think we all face little fears on a daily basis: Will that oncoming car stop or not?  Will my boss think my idea is stupid?

And then there is a different sort of fear.  The blood chilling, nauseating, night sweat-inducing fear for the life of those you love the most.  If the last five years offered me anything, it was familiarity with this fear, which might be the greatest of them all. I have spent many early morning hours wide-eyed, staring into the darkness, consumed with dread. Never a religious person, I learned how to pray; fear brought me to my knees.

My first experience with profound fear was in the context of a relationship with someone who suffered from addiction. With time and help from others, I learned to let go of my fear related this person’s safety and well-being.  I didn’t do so well with the fear of my mother dying.  At times, I did transcend the fear but more often just couldn’t quite shake it. Fear of her death haunted me right through those final hours, my near-constant companion until the end of her life.

My worrying didn’t change the outcome. All my sleepless nights couldn’t save my mother, but they did make me tired, and some of our time together less enjoyable. In the face of her relentless, insatiable cancer, my prayers and all that modern oncology has to offer were helpless. A cure wasn’t to be found.

My fears never saved anyone, but my smaller worries have diminished in comparison.  I struggled with anxiety prior to my harp performance at my friend’s wedding, and afterward could appreciate how it wasn’t such a big deal.  I am now seeking other performance opportunities with both my harp and with my career. I have been better at speaking my truth at work and at home.

In my inability to let go of fear, I learned to live with my suffering.  And now, the red thread has been cut, and I am emerging from the shroud greater courage than I have ever known.

I’ve started to say that Mom passed away last year.  As opposed to “December,” “[X] months ago” or “recently.” Maybe because it does feel like a new year.  The garden is bursting forth with life.  We are already sweating during hot afternoons.  Tucson has been sweltering the last few days- an early summer, it seems. Already, we have broken 100 degrees, and my shoulders are burned from long, slogging jogs with Bruno. The cold rains and short daylight hours that colored my Mom’s last days seem like a long time ago, seasonally speaking.

I’m playing harp more than I have in years.  My dear friend Kathy is getting married on Saturday, and I am providing the music during the ceremony. These days, I’m practicing furiously to try to rework rusty pieces and learn a few new ones too.  My sheet music is totally disorganized, and in between the loose papers I have old recital programs, notes from my harp instructors… even an old bus schedule, circa 1999, which would bring me from South Minneapolis to St. Paul, where I studied in college.

Music speaks to the core of all of us, provides a soundtrack to our life.  This is especially so if you are a musician. I work through this repertoire from 10+ years ago, and I feel the heat from the stage lights shining down on me, blinding me to the audience present.  I feel the anguish of my failures– for some reason, those are more vivid in my mind than my successes. When I play these old pieces, I also remember my mom sticking her head into my room when I was practicing. She’d beam an encouraging smile and exclaim ”I just love that song!” or “Sounding really good!”  I feel her hugs after my recitals, hear her voice on the end of the line asking “how did it go!?!” when I’d call her after completing my juried performances.

The notes, the rhythms connect me to the past in a palpable way.  I play these songs and again am transported back to an earlier time.  Maybe jr high, high school, or college. A time when I was focused on music, and I had a living, breathing mother.

 

On Sunday mornings, I miss Breakfast Club.  This gathering of my mother, stepfather, and their best friends occurred at a greasy-spoon breakfast joint every Sunday morning. While Mom loved going out for breakfast her entire life, the regularity of this ritual started around the time I was finishing up high school.   While the core group consisted of the three middle-aged couples, I often attended, as did my best friend, our significant others, and any other random smattering of friends who happened to be around on a Sunday morning and were interested in breakfast.

As options for smoking indoors were dwindling by the late 1990′s and smokers were an essential minority in our group, Breakfast Club could occur in only several locations around Minneapolis.  The type of place where tattooed waiters hustled coffee and bacon, you had to talk over the crowd, and there weren’t such things as reservations, or many tables that could seat 8+. So, we needed to meet at a time that could seem painfully early to me - 8:30. This was before my status as a morning-person was fully established. But even if I was out cavorting till the early morning hours, I still tried to drag my ass to breakfast, because it was that fun.  I’m sure I had more than one boyfriend think I was nuts for pulling myself out of bed and inviting him to come along to breakfast with family and friends at the ridiculous hour of 8:00AM.  But I often did.

It was particularly hard to get up during the wintertime.  My body felt heavy, and I longed to singer in sleep a little while longer, but the promise of great food and even better company called to me, and I pushed myself from the cocoon of my comforter.  I remember driving down icy streets, which were Sunday-quiet.  The sun was up, but shined a dim, bluish light on everything.

But I’d soon arrive at breakfast.  I would walk through the door and be assaulted with the smell of eggs and bacon, the sound of silverware clanking.  A brave heater vigorously pumped out the heat, further warmed by numerous bodies.   I chased down some coffee and felt the fatigue melt away, and happiness set in.  We would sit around a table, laugh about our week, complain about politicians or our jobs.  Mom and her girlfriends would tease me about my longing for a particular waiter, a rather-Emo man named James who would patiently flirt with me.  It provided such entertainment my parents would request that he be our server every Sunday.

Breakfast with those you love is always enjoyable, but my mom provided the glue to this gathering.  I think it was her joyful spirit that laid the foundation for such a diverse, dynamic group.  She somehow made it all possible, for years.

Of course, nothing lasts forever.  Friends quit smoking, and much to my chagrin Breakfast Club started often meeting in more-refined, non-smoking suburban locations.  What had been once a week became once a month or so. I became a nurse and suddenly lost half of my Sunday mornings to working at Hennepin County Medical Center.  My best friend moved to DC.  I moved to Tucson. My parents and one of the core couples of breakfast club needed to step away from their friendship.  All things go.

It was wonderful to have the space of Breakfast Club for 5+ years.  It provided community and connection for all of us.  I’d like to recreate it somehow.

A more modern version of Breakfast Club. Sedona, May 2008

I’m back in the home that used to be my mother’s.  My stepfather, who is the full-time caregiver for my grandmother, is in the hospital.  He has a skin infection that will be easily treated, however without his care there is no one else for my grandmother.  We are working on options so I can return to work soon, but for now I am on grandma-duty.

Fortunately my mother married a man who was willing and able to care for her mother after she passed.  I don’t take this for granted; he certainly could have declined this role. Yet even with his devotion I feel an added responsibility I never felt when Mom was alive. I am Grandma’s closest living relative, and there is only me. She has outlived both a husband and a longstanding romantic partner, as well as her only child. She is not able to care for herself independently, and I have a responsibility to ensure that her needs are met.

This is the source of some anxiety.  I haven’t yet recharged my batteries from Mom’s long illness and I worry about meeting Grandma’s needs if and when my stepfather is unable to do so. I also feel the burden of a small family.  I have no sibilings with which to share caregiving; my stepsister lives in another country. At many junctures during my mother’s illness I felt alone. Not to minimize the losses of my stepfather or Grandma, who arguably have had their daily lives more disrupted than I by her death. However,  nobody else was losing my mother in the same way I was.  No one else was watching this mother die of cancer.

Maybe grief is always lonely.  Maybe a brother or sister would have been disruptive, angry, drunk, high, unavailable, busy doing other things or otherwise a total pain in the ass. Any wishes I may have for more help in caregiving aging relatives is not only pointless, it illustrates the impossibility that I wish for: that my mother wasn’t dead.

Her passing has made me grow up.  I don’t have children, so with this loss I entered a new realm of responsibility for another human being. It also has provided a taste of getting older. I now understand the sting of watching the generations before me die, removing the meaningless yet symbolic distance between myself and the end. And I understand how difficult it is to say goodbye, to let go.  And what is getting older, if not a process of letting go?