The 38th Day of 2011
Mothers and Memories
The 4th of February was the second anniversary of my mother’s death. It was the fifth anniversary of the death of Betty Friedan, a founding mother of the modern Feminist movement, and author of The Feminine Mystique. Change was in the air as her book was published. Many women like my mother read her words. And new conversations began. My mother and her friends began to talk about and do things not before imagined in my childhood suburban town. Friedan didn’t get it all correct; she didn’t know everything. She wrote what she knew and observed in her peers. She changed the lives of women who then changed the ways in which they talked to their daughters.
I am a daughter of these two women.
In my life, Betty wasn’t the famous or celebrity feminist. She was a dear personal friend — and another mother. Biographies and articles claim Betty thought I was a younger “girlfriend.” She was my friend, and I was much younger, but she did maternal things for me my mother was unable to do.
On the 3rd of February 2006, I was about to board a plane at JFK, on an emergency trip to Southern California to tend to my ill mother. My cell phone rang. I knew how sick Betty was; I was reluctant to leave the East Coast. It was a mutual friend calling to say, “Betty is dying.” I found an airline representative to see if my luggage could be retrieved.
Then, I stopped and was still within myself.
Being at Betty’s funeral or being with my mother was not a choice. I got on the airplane. By the time I landed my mother was much better. The next day Betty was gone. I told Mama she had died on her 85th birthday. My mother (who had me late in life) was thirteen years older than Betty.
“How lovely to die on your birthday. But she had much more to do. I would have given her some of my years.”
My mother and Betty got to know each other after I moved to New York and especially during the years I spent in East Hampton. They liked each other. My mother was grateful to her but not fawning. I have a copy of the Feminine Mystique Betty inscribed for my mother. Betty was proud she had done something for my mother that made me happy.
On the 4th of February 2009 my mother died, peacefully, in my father’s arms. Much was made of the fact that she died a day to the month before her 101st birthday. The moment I got the news my mother died I knew she had done so on Friedan’s Day to make her own statement of solidarity. I was in California when Betty died. And I was in the Infusion Room at the hospital in New York on a chemo protocol when my mother died.
Last Friday, on the anniversary of both their deaths and on what would have been Friedan’s 90th, I was in the Infusion Room at the same hospital having yet another go at a new form of chemo. Friedan was unafraid of my chronic illness because she had her own chronic struggle with asthma and later heart disease. My mother was terrified of my disease because she had lost a son before I was born. But both were brave women in different ways and helped make me part of what I’ve become.
For too brief a time, I had the opportunity to live in a small home on Three Mile Harbor in the Springs of East Hampton. It is probably the only time in my life I was absolutely joyful, most of the time. At a tag sale I found an oil painting by Edwin D. Mott, an unknown painter (as far as I can determine). It is the exact view that I had from the front rooms of this house I called the Harbor Lion. All that was different in the painting’s view and my own were the vintage of the sailboats.
The painting hung over the mantle. Now it hangs in my room. Betty has gone. My mother followed her. And my father left not long after my mother. The house was lost to me. And much else I loved and enjoyed has vanished as well. But that painting endures as a symbol that this time existed and that I have indeed inhabited more hopeful years.
Friday evening I returned home from chemo and lit a candle for both of them. I placed it next to the painting. I was suddenly engulfed in waves of fear and longing. And with the surreal realization that I am now older than Betty was when I met her (and I thought she was old!) A sharp dagger went to my heart reminding me I am alone in my life, yet still stuck with my disease companion.
Then I looked into the painting and was sure Betty and Mama appeared on the canvas.
There they were on the lawn facing Gardiner’s Bay, sitting in the two big White Adirondack chairs.
Of course, I saw them.
Because they are right there – in plain view.
They are not only in the painting, if I look hard enough – they are inside me on each day, not only the 4th of February.
I am hardly alone.
What was I thinking?
©2011 Alida Brill From This Terrace
Monday the 31st day of January 2011
The last day of the first month of the New Year. At midnight newness turns into February. Another year proceeds with or without our permission.
During January’s 31 days we, a people belonging to one country, were wounded by a man’s internal demons that erupted into a public violence. His gun’s bullets brought death and disability, misunderstanding and sorrow. Tucson, Arizona is a place of beauty awash with colors provided by its natural palette. A part of the sheltering Southwest, the landscape and terrain do not suggest the imminent disruption of life. Reality does that — it surprises us individually and communally. Our daily lives are interrupted again and again. We turn around to find dreams transformed into nightmares.
Tucson’s shared healing light helped us reconnect to what matters. But as I write, Egypt is engulfed in turmoil and despair. Hope is attached to a ferocious rage. The televised reports remain in consciousness. The dreams of Egyptians are common to all people; what underlies the confrontation is the basic right to claim and be offered the opportunity for a better life, days that are filled with less suffering. We understand the desire and fundamental need to be free from deprivation and tyranny. Yet we are also frightened and confused; again we can see death, injury, and extreme acts of violence.
Psychics and political pundits predict a variety of events for the coming months of the year. I would not attempt to speculate about what’s next. Nor would I wish to do so, even if I had the visionary powers or the political knowledge.
In my city, winter came upon us harshly and relentlessly in sharp and unforgiving ways. Inside my apartment and safely upstairs, I can envision a different winter. I deceptively imagine the blizzards as soft occurrences; those images compose a private fiction. My view is one of a fresh white blanket spread over the terrace and surrounding the Stone Sage Lion. The Lion looks proudly at the snowdrifts he commands from his urban perch; it’s hardly a suitable location, even for a Stone Lion. It’s fantasy and as mythical as he is, but no less comforting to me. I watch his unchanging gaze, his unwavering attention to his post at the door. His existence makes me smile as I pretend he’s pledged enduring allegiance to the terrace, to Manhattan, to me.
Sharpness and Softness.
These are life’s eternally contradictory and combative partners. Incompatible companions but linked forever. They will never escape each other or our experience of them.
I have been wondering lately how much is left of my Forever?
It has, of course, become shorter with illness and with each birthday. The horizon line is now visible. I no longer possess the youthful illusion of an infinite life yet to be lived, an earthly eternity of time to spend. I’ve lived. I still live. But Forever moves closer to its inevitable and finite conclusion. I am unafraid. I will find ways to embrace the winter’s storms and whatever is waiting beyond them.
The end of Forever may not be terribly long from the present tense of my rhythms. It belongs to the domain of the unknowable, as it should. Because I accept this as something other than a verdict, much about my life is more meaningful. As January ends, Forever has given me its only available gift. I have been shown a timeline. Or, is it that I’ve stopped denying I can see one? The ways I choose to live and to love are easier and sweeter. I am reaching for an understanding of all that comes to and through my awareness–even this sharp-soft winter in the Year 2011.
©2011 Alida Brill From This Terrace
Monday.
This is the 24th day of 2011. This year no longer feels so young to me. Tucson prematurely aged the calendar and many of us along with it. I am determined to stay far from the shadow of fear that leads to emotional and creative paralysis. In Manhattan today it is about 8º — far too frigid to risk an adventure into the urban tundra. The Stone Sage Lion who lives on my terrace has put on his icy thinking cap. He is staring through the glass doors perhaps wishing to come inside. He seems to suggest it’s time to pause from concentrating on coldness and solitude. I am giving a thought then to spring, and the inevitable renewal that accompanies it. For now, the task is to “winter through” individually and together. And here is the first stanza of Rilke’s XIIIth Sonnet To Orpheus. I am taking these words with me this week as an intimate companion.
Keep ahead of all parting, as if it were behind you, like the winter just now passed, for in winter you are so endlessly Winter, that only by Wintering through it will the heart survive.
Rainer Maria Rilke, Number 13, Part Two, Sonnets to Orpheus
A new series of weekly impressions from Alida Brill on This Chronic Life.
January 15, 2011 at 12:29am
On the 15th Day of the New Year. . .
A week ago in Tucson It took about 15 seconds to kill, disable and destroy.Far less time than it takes to remind others of your belief in them, your loyalty, your compassion, friendship, love. I’m going to take time this week — as a part of healing– to see what I can say in 15 seconds.
A new series of weekly impressions from Alida Brill on This Chronic Life.
January 8, 2011 at 12:29am
On the 8th Day of the New Year. . .
Today I have been wondering what would happen if we made a set of communal resolutions: to stop gossiping about others, to stop talking behind the backs of friends or former friends, to stop spreading rumors or telling hurtful things, even if true, to stop being jealous of anything or anyone. And instead gave everyone the benefit of the doubt even if they annoy us or displease us. And if we chose to assume the best not the worst in those we know and those we have only now met. How much energy would be left in our days and in our bodies to do good work? I’m thinking about feeling the empowerment that comes with the task of being the best we can be, instead of feeling the fatigue that results from judging others.
I am winding down from a world that chatters much and listens rarely.
Have grown impatient with the adulation of extreme ideologies.
Protesting the belief everything must be acted upon without pause or reflection.
Discarding calendars Napoleonic armies marched through leaving wounds marked urgent on what was to be savored as a daily life.
Winding down from self-indulgent explorations of mind and spirit.
Refusing to define forgiveness as a finite act parceled out the way a miser grants a beggar a penny.
Letting go of grievances to find acceptance is the infinite rhythm.
Residing inside a space of giving, learning to receive what is offered with respect and gratitude.
Winding down from the pinnacle of that mountain called “I’m sure” because I’m not so sure about much at all.
Eventually arriving at the plateau of an earned peace:
“Don’t just do something. Stand there.”
Katie Bamberger, Gettysburg
©2011 Alida Brill
The events of the total lunar eclipse and the Winter Solstice have made me think about light. So much of what we think and do is influenced by light; our existence is shaped by and depends upon it. The absence of light is forbidding and frightening. Winter’s dark days trigger mood disorders and sadness. We crave the light spiritually and metaphorically. We bring the light to us when sitting around a blazing fire, or simply by lighting a candle. We seek the light — entire civilizations and religions are based on the quest. Light is life and warmth, darkness is cold and symbolizes death. This past summer when light was in abundance I was shuttered inside because of a serious recurrence of inflammatory autoimmune disease.
Having missed the ability to experience those bright days, now I hunt down the light. I’ve found it lurking in one place. It’s only a glinting sliver but it comes regularly in late afternoon, as if by my command. A fleeting and thin strip, it reflects against the many windows on the buildings in my neighborhood. For a few moments the part of the city I see from that window glistens and shimmers. Then too quickly the heavy early winter evening descends. With premature darkness inevitably comes a melancholy that tries to grab my spirit. Still, I sit each day and wait in this one spot for a moment of the winter’s light. I sit quietly, not reading, not writing, not speaking, but drinking a cup of China Rose Petal Tea. I do it with such precision that it has taken on the same ritual and rhythm as a prayer cycle. It’s obscured urban light, not proper light for a painter or a sculptor, or even a writer, but it works particularly well for silent contemplation. Winter light comes quickly and leaves rapidly. But in the space of the few moments when I choose to let my eyes inhabit the dancing reflections it causes, I am renewed.
Many years ago as I was attempting to become a “real” New Yorker, I was told that Ruth Orkin, a distinguished photographer, was fighting cancer. At some point the disease and the treatments and operations made it difficult and then finally impossible for her to continue her career. And so she reshaped her career and took photographs from her apartment windows. This work resulted in two extraordinary books, A World Through My Window and then More Pictures from My Window. It seems to me now that other people my age referred to her as an “old woman” who was very sick and took pictures out of her window. It never occurred to me to figure out her age, and I suppose if I had she would have seemed old to me then as well. Ruth Orkin died in January of 1985 and was quite young, just 63 – an age I am now a few yards away from reaching. For 17 years she challenged the cancer. In the New York Times obituary, the journalist and author Jimmy Breslin said that her determination to continue her photographic career was a “medical wonder” and “She made it on spirit for over a decade. She treated the cancer like an unruly subject for her camera. She just told it to sit still.”
Ruth Orkin remained a true artist. Illness notwithstanding, she did more than merely exist on this island. Although the disease eventually did kill her, she stared it down through an almost unthinkable number of years. With her passing, the world she observed and shared was lost to her and to all who admired her artistry. But I don’t think of her as a prisoner or as a victim, although she died far too young. It’s her bravery that stands the test of time for all who suffer and battle diseases. Orkin’s books are companions; they remind me to keep going as a creative person, whatever it takes, and through it all. Life-roads are sometimes blocked with detour signs marked Danger: Serious Illness and Probable Suffering Ahead. Those internal warnings can stop you in your tracks or can push you forward to experience the last few laps of allotted time. Orkin’s unique perceptions of daily activity outside the window remained with her, even as she went further into the final tunnel. It’s the same one we all will eventually enter and travel until the end of our days are reached.
Undoubtedly I will need to remain inside my rooms much of this frigid season, but I intend to catch the slightest reflection of afternoon light each day. And I’ll be aware of the evening lights as they are turned on and illuminate the windows in the buildings surrounding mine. One thing I never lose is my conviction I belong to this city as much as it belongs to me. I am just a speck on this island of Manhattan with millions of other human specks. Somehow, most of the time, we manage to find our way through the maze and navigate toward one another with civility and compassion. Although I admit there are days the entire island seems to lurch forward like a ship in heavy seas of misunderstandings, large and small. However, we make sense of our lives within this enormous sprawling urban family. We come together to make some happiness, some love and some positive change in each other’s daily lives. We must and do overcome many of the obstacles and the challenges we face as we coexist in such constrained geographic space.
Ruth Orkin’s camera captured a Manhattan that is forever engraved in my mind. Photographs taken from the window of her apartment were composed using the tools of her craft and powered by determination and talent. They represent an immense creative output despite the reality of cancer and its ravages. Her life is a testimony, as well as providing visual documentation, of how we can live fully and observe keenly until the last gulp of possibility is taken from us. Ruth Orkin indeed saw much. Because of her triumphant effort to inhabit each moment so completely, I reside inside the memory of all she embraced and do not dwell on what she missed. I talk and write often about the importance of understanding that our lives offer many “treats along the way” — surely this was a lesson Ruth Orkin learned long before I did.
©Alida Brill 2010
I’ve been called a Romantic and loved with reckless intensity even when fairly certain it would not turn out well. Assuming I would get hurt — knowing the other person couldn’t cope for the long haul with the part of me that is often sick — I still couldn’t stop. The rush of positive emotions and energy was too compelling. A couple of times there were good reasons to believe it could be different. Those times my expectations were high, or just normal — as if I were normal.
I believed love worth the chance and was prepared to suffer the consequences. I was a fool for love because it enabled me to accept the presence of pain without need for denial. I could breathe it and swallow it in one gulp. Love became the conscious awareness of being alive. I suffered the searing loss of love without flinching. I pretended illusion was authentic. I soared and then crashed to earth when reality arrived. I tried to disguise the ending with poetic gestures. It was a vain affectation –but it was my preferred form of pain.
Why? Because it was the pain I chose.
Inside the sadness of chronic illness I created a different kind of pain. I could adjust the intensity at will. It was a diversion from a stalking disease. For periods of time I took up residence inside a broken heart instead of a broken body. I went through romantic dramas wrenching enough to cause a reconsideration of my approach. But I soldiered on for the cause of love. I thought, “How awful this is!” – Then, I calculated: “At least this is not about being sick – it is about living. “ I convinced myself I was brave and wore my love wounds as a medal of personal honor. It wasn’t bravery. It was a protective shield against illness.
That has changed. I am far more cautious and reluctant to place my heart at risk. I have worked to accept disease as part of my life, surely not a desired part, but not as a total enemy. I force myself to admit that chronic illness belongs to me, but to remind myself I am also apart from it. My goal is acceptance but not resignation or hopelessness. Chronic illness invades my self-esteem. I strive to keep it as far from my central identity as I can. Sometimes I feel I’m performing on the high trapeze without benefit of a net below. Finding techniques to acknowledge the presence of chronic disease without letting it overwhelm is a much tougher task than recovering from heartbreak!
Being “in love” was based on a series of reflective assumptions or views of the other person. Too often romance was confused with deceptions or unrealistic expectations that led to disappointment, judgment, and criticisms on both sides. It is ridiculously easy to fall in and out of love. It is extremely difficult and takes discipline to practice unconditional love. This kind of love isn’t that white-hot smack of addictive romantic or obsessive love but it too is real. It is love that does not have expiration marks stamped across it like cartons of milk. There isn’t a calorie counter attached to unconditional loving. I can’t love someone too much — the way one can eat too many rich chocolates.
At long last my tours of duty in the Intensive Care Unit of Romance Rehab are over. The well and unwell parts of me belong in the continuum of life’s experiences. There’s no question I’ll always be in a process of learning how to embrace the physical and emotional pain of disease. However, I have stopped running from the truth of sickness and suffering. As I continue the lessons in love and illness I connect to other persons who are experiencing pain, suffering, illness and even encroaching death.
I understand now to be a fool for love is a cheap trick. It’s temporarily satisfying or fulfilling like unhealthy but tasty junk food. It’s gratifying in the same ways cardboard characters are in the plots of typical romance novels. These are the novels where unrealistic love conquers all. At the end everyone is happy forever — and ever. With a tremendous amount of fear, sometimes mixed with blazing anger, I have walked into the raging fires of disease. It’s also taken a stubborn determination to find ways to accept failure and weakness. I struggle to embrace illness as I embraced the loss of significant relationships. I don’t hold my breath when I sense an outbreak coming my way, a flare surging, a fever lurking, a respiratory crisis, a series of lesions in new places —the assorted atrocities of inflammatory autoimmune disease. I want to be brave enough to face it down with as much hope and raw nerve as I have when a romance began and suffer through it as honestly as I have when one ended.
It’s very hard to accomplish — but I’m emerging and still evolving. It takes time, contemplation and the belief transformative things can happen. Being unwell gives me a different perspective on everything I do and feel. The disease plays an important role in how I shape and define the conversation of relationship and friendship. I don’t think chronic illness is a blessing or a gift. But I understand there is more underneath the reality of being unwell than simply a curse. In illness of any kind there exists the opportunity for expanded knowledge and awareness.
From time to time it is actually the presence of chronic disease that provides a fleeting but glorious glimpse of what it means to be fully alive — within the space of only one moment.
©Alida Brill 2010
I call the hospital “The Slammer” because it is my jail. Occasionally Dr. Michael Lockshin obliges me and calls it that too. He does so when he must make a decision to admit me, or in my terms, incarcerate me. I assume he hopes I’ll be cooperative if we both refer to it as The Slammer.
Many things happen when I am in The Slammer. One of the things I dread is Visiting Hours. It exists in real time and space but what I envision instead is Noah’s Ark docking nearby. Populations of people spill onto the shore and into The Slammer. They move forward in groups to find their lost, hurt, sick or dying loved ones. It’s the time families and couples greedily grab a small slice of happiness away from the sadness or terror of hospitalizations. If Visiting Hours provide nothing else it’s the reassurance we’re not forgotten. It requires bravery of those who visit because they are often frightened too. Visiting Hours stands as the physical embodiment of love in its many forms.
I am smart enough and old enough to know not every room filled with family members visiting patients represents models of love, compassion, and harmony. Most of the time I know that — but there is always that lurking stubborn fantasy. Maybe I will turn over in the hospital bed and find myself ensconced within a big family – embarking on an adventure that doesn’t include danger or running away from the flood of chronic disease.
Noah (and Mrs. Noah!) were lost, indeed they were adrift — for quite a long time in the story we know. Nothing makes me feel as adrift and drowning in uncontrollable rapids of disease then when I am in The Slammer. — A jail afloat? — Well, that’s hardly a felicitous use of language or appropriate imagery. It isn’t merely a mixed metaphor; it’s a severely butchered one — but it is mine. During a particularly difficult hospitalization I had a corner room that looked directly into the Hospital for Special Surgery’s neighboring hospital, New York Hospital, both members of the same medical family. Outside my window I looked into a room filled from day to night with people visiting a patient. There were flowers and balloons and all sorts of other cheerful distractions. I was convinced the patient was a child. Then, late one night, long after Visiting Hours were over – a woman and man came to the window and looked out across the way. He had his arms around her – she was the patient.
Just as I could see them – so they could see me. What they saw was a total stranger — as much to myself as to them. I was simply another patient, an unknown woman hooked up to all sorts of tubes. They both waved at me! I waved back. I was glad that whatever was wrong with her she wasn’t going it alone. Whether it was a husband, a companion, a friend, a lover, a partner or a brother, someone was hanging onto her. A few minutes after they waved, a nurse came to the room and the man left. Before his exit, he embraced this woman with such tenderness that I cried. The way she touched him — the way he moved the hair away from her face– all of it was a glimpse into a world I did not inhabit. But I will bet she too felt adrift. At some point in the experience of illness, we feel adrift– whether alone or with a partner. As the lights in her room went out I thought about this woman in her cell. I wanted her to have that person as a North Star who would guide her back home, back to hope, to remind her she could locate inner strength. I wanted him to love, support and comfort her. I wanted him to stay with her forever.
I suspect the desire for that idealized human North Star is a shared secret among those of us who are unwell. — One person to stay with us — a woman and a man, a woman for a woman, a man for a man – no matter — love is love. We want our North Stars to assure us there will a way out of where we are-– that our arks will not stay adrift — that we will find the way to a safe shore and dock at dry and sweet lands again. I have wanted a North Star. — A companion, a true life’s partner who would point the way, keep me away from the ledge about to plunge into darkness. – And I tried mightily to create North Stars out of most reluctant earth-bound human men.
After the publication of Dancing at the River’s Edge, I began to travel and give talks around the country. I met other people whose stories were similar to my stories. Women introduced me to their daughters, telling their unwell daughters to believe they would rise above their autoimmune diseases and live full lives. These mothers saw me as a role model for their daughters. I became a North Star! Women of all ages, and young girls began to write me about their fears and hopes. Many have expressed concern about me. They are my North Stars. Slowly a realization has saturated my senses, there is an entire sky filled with North Stars. We are not broken and discarded animals left on the shore. We have our own ark and we are on it together, at times we are full throttle ahead, but sometimes we stall and wallow. And sometimes we move around in pointless circles of desperation. But we are not alone. I don’t have one person or one companion to whom I can honestly dedicate a book saying “With love and gratitude to my abiding North Star.” Do I still hope to do that without it being dishonest or a mere literary conceit? Of course I do. Who wouldn’t?
However, the naked revelations I made in Dancing at The River’s Edge led me to a new understanding about love and relationships. Perhaps I have begun to explore the textures of human connection and belonging. In the talks I give and in my writing I am finding I also can be my own North Star. I have received notes, comments, emails and other correspondence and communication that join me to others. At conferences and gatherings men have thanked me for what I have given them in the words I wrote about “love and loss.” Women from all over the world have found me– and these bonds exist because we understand illness and pain and the collateral damage brought into our lives. We are not invisible to ourselves or to one another. We provide illumination along the way. Although some of us voyage alone and some of us reside in pairs we can find our way through the fog.
I have felt my identity eclipsed by disease and failed treatments. I am often infuriated by the relentless and wily ways of my illness, saddened by a variety of losses. And am extremely aggravated when I must say, “Sorry I can’t” — to events and experiences I want. But I have reached a softer context in which to view my life and my disease. I think now about the many North Stars I have had in this life. I try to work toward light instead of being satisfied with staying in darkness. – I try again and yet again to get up from the ditch of despair over relapses, and treatments that worked but made me sicker in the process, and those that didn’t work at all. I look to the sky and keep moving, even if it is as a lurch more than in a smooth straight line. I envision ways of regaining stamina and finding more appropriate coping mechanisms.
— This is what I know: I want to keep going forward –no matter what.
I am reminded of Samuel Beckett’s lines from his play Westward Ho!
“EVER TRIED
EVER FAILED
NO MATTER
TRY AGAIN
FAIL AGAIN
FAIL BETTER.”
©Alida Brill 2010
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