Thoughts and reflections on life

Compartments? Not for me

At my advanced age, I have learned that there are people who compartmentalize their friendships, and those who don’t. I am one of the don’ts. If I like you enough to have you as a friend, then I like you enough to have you as a member of my family circle, because a friend is as sacred to me as anything can be. I learned a lesson not so long ago that I have to admit kind of threw me. I learned that my friend, who had died, had not shared the fact that we were close enough to keep in touch by phone almost every day of our lives with her close family members. When I appeared at her funeral, there were those who had no idea who I was, like her sister. We had spoken to each other almost every night for 54 years, since we were kids. Sure our friendship had some ins and outs, times when we were distant, but for the most part, I would have done anything for her. We were as  different as night and day in politics, in religious observance, in how we viewed the importance of the outer accoutrements of style. But inside, I think that she loved me as I did her, but I was only in one compartment of her life, and since I have no compartments, she was in all of mine. When I met people at the funeral, I felt as if I were seeing people I had known for years, because my friend had shared their stories with me, had speculated about their behavior or their plans, only to find that she had never shared my story or the fact that we were friends with others, so I was a total stranger. It was a strange place for me to be.

I have wondered if I am out of sync with the world as it is, because as I look around, I realize that many people I know compartmentalize. It makes sense that the people we know at work kind of stay at work, and the people we play with or worship with also maintain a place in our constellation. But I followed in the footsteps of my mom, for whom a dear friend was the same as family, and family was truly sacred to her. If you were important to her, you were included in all the important times of her life. If you had a place  in her heart or her esteem, she wanted you there at parties, she wanted to share her life and thoughts with you, and she wanted to be there for you when you needed her.

Yesterday, I invited a new friend into my family. I was comfortable enough to tell her that that’s how I am. If I like you, then you become a member of my chosen family, and so does your family. We share an illness, and we both have all the fear and the uncertainty that go with never knowing what comes next, or what we should be feeling or doing to make things better. We have the worry that in addition to ourselves, how are our families coping with all of this? Will our children be OK? So I don’t know if I scared her away, or if I will have a new family in my circle. But I accept that that’s how I am and that’s how I want to have my life. For me, to be surrounded by family is a gift of unimaginable value. So in every part of my life, I have a little family to bring me pleasure, to share the good times and the bad, to help and to listen to, to spread and enlarge and enjoy the good times. It works for me. I have family in the park– some of them are dogs– I run into family at the grocery store, I have family at the center where I do sewing for charity, and I am always delighted to enlarge my family circle. There is warmth there, there is sharing there,  there is a kind voice, a smile, a shoulder when you need one–what could be more rewarding?

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Hope

“At the bottom of the heart of every human being, from earliest infancy until the tomb, there is something that goes on indomitably expecting…that good and not evil will be done to him. It is this above all that is sacred in every human being.” Simone Weil (from a 1943 essay)

When I read this, I realized that Weil has put into a succinct phrase that it is this spark that we call hope that makes us human. We are not the only noble animals on the planet. The elephant is more loyal, the wolf more beautiful, the lemur more agile, and so on, but it is for us humans alone to hope. We are the planners of the animal kingdom. We are the animals who can design, and who can imagine that which has not yet happened. We can hope that life will deal well with us, even when we have proof of the opposite. Each time our child leaves our sight, we hope that she will return to us well and whole. And when our bodies develop a disease process, or break down in some way, while hope may take flight for a while, it resurfaces in the consultation with doctors or healers, in the participation in clinical trials, in the ability to forbear the losses that sometimes cannot be avoided.

Humans are certainly not the only animals that grieve. A swan grieving the loss of its lifelong mate is noisy enough to call up all the demons of hell, but as I think of it, humans are probably the only animals that grieve the loss of hope, because we are the only ones able to project into a future in a way that gives us reason to hope.

Today, I am a flurry of mixed emotions. My daughter has been away, and I have a premonition that this is the time when she is getting ready to launch herself into the greater world in a way she has not done before. No matter what I projected out there into the future as her mother, that little girl, of whom I was only the steward for a while, was going to make her own way into the world, design her own sacred life in her own sacred time and I think that she is going to tell me about it in the next few days. Is it the future I would have designed? Probably not, because we are separate people, with different expectations based on different life experiences and a very different knowledge base. But I am lucky enough to be able to depend on her good sense, her good values, and her goodness to hope that she will make good choices that will carry her through. She is the child who remained close to home, who never tested her wings in small ways as some children do before they take an initial test flight. Those wings remained folded until I worried that their suppleness would be lost and flight would not be possible. But her I sit, awaiting her return from a flight I had no idea was coming (but which I endorsed), waiting to see what the landing will bring. She is not rushing back to the nest, she is taking her time to acclimate to the sea change she has undergone. I eagerly await becoming acquainted with the person my previously familiar child has become.

So if this, hope, above all is sacred in every human being, then for the next several days, I will respect the sacred thoughts that pass through my mind, the sacred wishes that my heart and soul make for the future happiness of my beloved child, and treat myself like the blessed parent I have been. It is said that it is a parents’ duty to give their children roots and wings. Until now, I have been quite sure of the roots, and only hoped that they weren’t so deep that the wings could not develop, or not be strong enough to allow her to take flight. Seeing wings emerge on one’s beloved child is the proof that I have been an adequate parent.

A voice awakens 4/15/15

It was Jan 28, 2014, that was the beginning of losing my voice. My voice, which had not failed me previously, ever, was about to be put on hold for more than a year. My words, which had always rescued me in the worst of times, were very shortly to be silenced, and I didn’t even know it. I didn’t feel it coming. How is that possible? And then, in the last few days, slowly, my voice began to reassert itself, whispering to me, letting me know that it was waking up out of a deep sleep. Stretching, it began to know that silence was not a good thing, and that it needed to reassess, reassert, and reestablish itself.

This morning, all of the pieces fell into place, or should I say that my mind has been at work all night, creating the pictures and the words that I was so used to depending upon. While I am tired, because I have been at work all night, it is a satisfying exhaustion because now I know that my Voice is back. This is how it all happened:

Having missed the usual December date for my annual mammogram due to an acute bronchitis, I rescheduled for January 28, and in the midst of my busy life, made sure to work in that appointment. Bidding the tech a “Goodbye until next year”, the busyness took over again. Within three days, I would pass through a door that slammed shut behind me, with no handles on my side of the door. I came in, but would never return through that door again to my life as it had been. The details are unimportant, but suffice it to say that tests, further tests, scans, MRIs, ultrasounds and a biopsy later, a diagnosis was made. All the other functions of life stopped. No shopping, no cooking, no details, just submitting to the hurried need for decisions and action and scheduling. In shock, and without the medical opinion that I had always depended on, I let the tide sweep me away. There were referrals, but how did I not take the time for second opinions? The days and weeks passed in a blur of surgeries, pain, shock, mishandling, infection, and trying to get what I needed for my mental as well as physical survival, because in truth, a diagnosis of breast cancer attacks the heart and the mind, just as the cancer cells attack the body. While it seems as if there are always choices, there is no choice. One goes along, or at least, with no solid rock to hold onto, one is swept away.

After electing a double mastectomy, some sense returned, but still there were endless doctor appointments, some mishandling, and finally a conviction that I had to seek other opinions. The City of Hope and UCLA agreed that the chemotherapy that was making me so sick as to need hospitalization was not the ideal treatment for my particular kind of cancer, lobular rather than ductal. Another decision to make. A change in care, needing to inform the oncologist who had be in charge of my care that I would no longer be using his services, transferring records, wondering if the outcome would have been any different if I had gone to UCLA to begin with, all leading to a sudden about face in treatment. No chemotherapy, hurrah! No sickness, no being certain that death was preferable. Freedom from endless appointments, exhaustion yes, fatigue, yes, but a glimpse at what could look more like a normal life. Still, thinking that if I were a good girl, and did all the right things, followed instructions, I would get a pass back through that door. Things would go back to being as they had been. OK, sure, I have a port in my chest, and while my temporary tattoos delight me because they soften the disfiguring scars where there had once been breasts, but I could go back through the door, right?

Last night I had dreams of a journey. Parts of the dream were me on vacation, but instead of seeing museums and fountains, and lovely vistas, I was walking around city streets with nothing particular to recommend them. Just ordinary shops and people, no glorious weather or sights or sounds or treats. And I kept feeling as if I had made different plans, but this is what I got. Waking and dozing, the journey metaphor remained, and I saw myself on a train. It wasn’t a high speed train, but one that moved sedately along, traveling through the landscape, ever forward, not a round trip, but one with a destination. While the ordinary city dream was definitely a vacation, even in my dozing state, I was aware that the train was my life. A few weeks ago I realized that Cancer had taken me through a door through which I would never return and resigned myself to the fact that no matter how good I was or how strictly I followed instructions, I would not get back through that door through which I had arrived here. Now, my train journey made me realize that this is what happens in life all around us. Even babies, after they learn to walk, don’t really go back to crawling, it is so much less efficient, and we learn to see things from the height of a head’s eye view, instead of from the floor. We do not mourn the loss of crawling as a means of locomotion. We do not look back when we leave elementary school for the mad excitement of junior high and high school, and neither do we really long for those carefree days of high school as we are negotiating college. When we marry, we don’t think of it as closing the door on single, and when we have kids, we don’t long for childlessness. I could go on but you get the picture. Life is like a train trip, or a house arranged with its rooms lined up one after the other. As we pass from one to the other the door closes behind us and we proceed to the next new state of being. Even deaths we accept as somewhat normal if they fit and are not untimely. So I ask myself why did I expect to return to that room, the one just before the one with Breast Cancer? Because it contains so much that is unknown and unfamiliar. We usually take along some of what we had or experienced in the last room, but this time, even our bodies are not our own, and we drag along fear.

But this mornings’ dreams had a message as well as a journey. As I awakened, I remembered reading a story, quite some time ago, by a woman who, like all of us expected to give birth to a pink and perfect baby, but instead gave birth to a child with Down Syndrome. Can you hear the door slamming? Her story described in a metaphor that it was like expecting to be going to Paris, and arriving in Holland instead. But she went on to say that she had discovered many delightful things about Holland that she had never expected to find, and how she had discovered that Dutch was a wonderfully descriptive language and how she had even begun to understand it and found it to be surprisingly melodious and descriptive. While she was sorry to have missed out on seeing Paris, she was not at all sorry that she had come to Holland after all.

What I am saying here, or rather what my dream state was trying to tell me was that although I find myself in a new and unfamiliar place, where there are probably some scary dark corners that I would like to avoid, there are also some new and interesting experiences to be found. Already, one of the benefits has been profound. I agitated for a support group that would meet my needs and I have been so fortunate to have been heard. Our lovely little coterie of women has been growing since we first met in October, and with each addition, there is a new friend, another person who shares information and heart, a woman who know what I feel and who buoys my spirit with her courage. We share far more than a disease in common, because, with eight or nine women in the room, there are eight or nine forms and stages and experiences of cancer, but there is one generosity of spirit. There is one willingness to share whatever can and needs to be shared with an open heart and a sweet and understanding smile.

So for those of us on the far side of the closed door, hello and welcome. I hope that this part of the journey will be as broadening as the other side was. I hope that we are able to learn its lessons and to share them with the people we love, and even with those we don’t. I mostly hope that we can be comfortable here.

I knew something was brewing yesterday. I did most of the usual things I do on a Monday, but not all. I did not realize then that I was on the final step of a journey from which I would not return. And now it is 4am on Tuesday, and finally, after not being able to use my words, my beloved words, to which I have always retreated, on which I have always depended, to build a wall between the part of me that was suffering, and reality, my old friends—words—which have waited for me at the doorway through which I passed overnight, words and I are reuniting. I think that now they will be what they have always been for me, but better, because the way I used them in the past will not come between us. No more walls, no more bricks, no more mortar to separate me from others, or from myself. No more standing off to one side to watch myself go through some unpleasantness that I would rather not claim as my own, no more watching others through a window, because “I do not really belong in that room.”

During the night I crossed over the threshold into that room, and now I have reunited with the parts of myself that I have been disavowing for the last year. Today is the first anniversary of my bilateral radical mastectomy. Yesterday, I wept, and today I actually joined a League of women and some men who have not chosen this path, but who nevertheless will walk it as long as we are able.

The words that keep running through my mind are “………and some have greatness thrust upon them…..” We, The League of People With Breast Cancer, have had Cancer, not greatness, thrust upon us. It is not something anyone chooses or would choose, but all the same, we are bound together. Some of us hide, as I have been doing for the past year, behind the wall of the ‘good patient’, doing all the ‘right’ things, and yet taking no active part in who I have become. As if being a “good girl” would make it all go away. As if, if I only tried harder, I would be like I used to be. Yes, I have been doing the support group thing, but until yesterday, I was not really a member—I was playing my usual role—participant, but not. Did they see me standing there in the doorway? Could they have known–I sure didn’t–that I had not been there all the months I had been attending? Could I really have been so arrogant to not want to embrace this clutch of courageous women, dealing with the fear and loathing of having Stage IV cancer?

Because after all, I have read all the books, I have shown up at every appointment, on time and in good spirits, I have been the “good patient”, not bothering anyone with my terror, my aloneness, my isolation from myself. I do the exercises, I even embraced my baldness and wore hats rather than a wig. I have not gone back to my pre-chemo hair. I must be one of the realists, right? I am courageous, right? Not the sniveling coward I really am, unable to face reality. I found my lovely temporary tattoos, so I wouldn’t have to look at my scars—more pretending. I even sewed the pockets in my old bras, so that I would not have to wear those “orthopedic” bras that the shop lady got for my prostheses. The rub was, that I didn’t wear them. I convinced myself that I made a courageous choice when I walked around with my caved-in chest. At first I sewed blouses that were not as ‘revealing’ as t-shirts, but one would have to be blind to miss the fact that there was nothing under the place where boobs were supposed to be. So I went back to t-shirts and said to myself “damn the public, let them think what they may” but I never meant it. I was ‘The Me’ that I have always been, right? Slightly rebellious, always realistic, facing whatever needed to be faced, head on?

No, not right. Very, very wrong. It is never right to be closed off from yourself, from your pain, from your fear. It is very, very wrong to close off the parts of yourself that want to cry and scream and curse the fates. Why be so civilized? So that I don’t disturb the status quo? So that I don’t bother anyone with how and what I’m feeling? So that I don’t scare the family? So that every little twinge and pain does not make me explode into a million shards of dread? And so that I can divorce myself from living in a constant state of abject terror which threatens to make me a drooling lunatic, and I can still go to the grocery store and the foot doctor without becoming a raving maniac?

So happy anniversary, breast cancer. Today I become one again with ME. Today, I commit to all the things that come with being Me-With-Breast-Cancer. I have spent the last year despising myself, hating what I have become, refusing to acknowledge that I am a member of the League, like it or not. I worried that I was going to become one of those ‘professional cancer sufferers’, the pink ribbon ladies, the walkers in the “walk for the cure”. I dreaded becoming one of those people whose lives revolves around cancer. But my life does revolve around cancer and now always will.

Today I stop worrying and start just living the best I can. The only thing that I can commit to today, is that I will embrace all the parts of me that need a hug. I will allow others to do things for me that are hard to do for myself, I will let myself be tired sometimes, and I will approach my coming PET scan with fear and loathing like any normal person would do, rather than hide behind the brave ‘oh this is nothing’ face. Today, I will commit to welcoming home all the parts of me that have been floating out there because I would not give them a place to land. Today, I will reunite as Jackie, warts and all, like it or not. Today I will not hold myself back from learning all that there is to learn from others I have met who have traveled and are traveling this road. I will embrace their knowledge and let it guide me through the roadblocks that are sure to be ahead. I will bask in their kindness and the love and respect they have shown me by sharing their most intimate experience with this sniveling bastard of a disease. I will let them be my guides and my most trusted friends in this battle against evil. I will treasure the hours we spend together helping each other, teaching each other and learn to have fun wherever it presents itself. This is my pledge on this anniversary that I never wanted. But here it is so I might as well embrace it and learn what there is to be learned, and just look at what is in front of me, rather than try to anticipate how I can put on a good face and whatever smile I can muster for the studio audience out there.

I will be whole. I will be real. I will be me.

 

I’m back

I’m back—7.15.14

 

I am learning what it is like to have ADD! Lately, my mind darts around, landing on one thing and then another, knowing that I need to catch up on all the things that have gone by the wayside since the end of January, when I was diagnosed with breast cancer, and all hell broke loose.

The first thing I want to express is how grateful I am to the people who have helped me through the fear and terror of diagnosis, surgery, complications, and finally encouraging me when I sought second opinions and decided to make drastic changes in my care. My family, both immediate and extended, provided me with the bedrock of love and support on which I was totally dependent. They made me feel that I was never alone in decision making, in difficult choices, and even in finding something funny in all the bad stuff to laugh about. My dear friends remained close and caring, helping me to know that I was loved and never forgotten. My children helped me to know that there was a future to aspire to, to see them settled and happy and successful, and my husband helped me with his understanding of the things that were not necessarily rational, but important to me nevertheless, and was often able to put aside his own needs in order to meet mine. For now he has put aside his dreams of traveling, because I need to feel safe and secure here at home. I need the loved and familiar around me, and I need to slowly find the parts of my “old” self that are to be found, and to learn to let go of the parts that cannot be regained. My community, which honored me with their Los Merecidos (meaning “the deserving ones) Award, helped me to remember that I am part of something much greater than just myself, and that the tradition of service that was handed down to me from my parents and grandparents makes me part of a chain that deserves to be extended, so knowing that there is still work ahead to be done, I can concentrate on others rather than just myself. And to the medical community that has cared for me, done their best to provide good and appropriate care, I am also grateful.

So to all the people in my life who have helped me back to life, back to laughter, back to thinking of others, back to the mundane things in all are lives that are so precious only when the threat of loss is imminent, I offer you the gratefulness of a very full heart. I hope that I will not leave you for a long time, and that I will become the productive member of society that I have always meant to be.

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