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.

A new place

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 knows 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.

A Voice awakens

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.

Written 2/24/15

February 24, 2015 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.

Change is inevitable

I used to think that I could be in the heads of my loved ones, and tried to help them avoid the pitfalls of life, or at lease find a way to soften the landing when they fell, but now I know that this is not possible. I have tried in my life to anticipate the needs of those I love, and to provide whatever was needed if I was able. But I have come to realize and understand now that everyone has to take their own blows, everyone has to suffer their own crises, and all we can do is stand by and let them know that we will be there with them all the way through, not to suffer in their place, but to lend an ear, a hand, a shoulder, or any other appropriate body part. If we can help them believe that we will not judge, that we will not withdraw in horror, that we will never be ashamed if we know that they have put forth the best effort of which they are capable, then we will have done our best. And since we ourselves are capable of making mistakes, just like everyone else, sometimes, we will let them down despite our best efforts. I have again been de-cluttering today, and have read and discarded many articles that I had saved for a day when I had the time to look at them. A lot of what I came across was about trust, and confidence, and learning to live on in the face of life-changing circumstances. I also had lunch with a wise friend who told me that as she reaches a milestone age, she is realizing that there are things that she is no longer willing to put up with, and told me some instances having to do with her work life and her social life. I hope that she knew that I was applauding her the whole time. Life changing circumstances are happening to us all the time: we reach a new age, our work goes well or not, we become ill, we make a decision to make a change, we loose a love one. We have to adjust to loss, to illness, to changing financial circumstances, and to happy times as well that change our life situations: an adult child finding the love of his life, a wedding, a job change or a move to a new home--all are causes to rejoice, and yet they are stressful and mean a drastic change in the way we see life. Learning that change is inevitable, and learning to flow with it can make all the difference.

Life isn't fair, but it is good

Some time back, Bob forwarded to me a list of life lessons that a columnist, Regina Brett, of the Cleveland Plain Dealer had written. It is a list of the lessons taught her by life. Some are better than others, or more pertinent to one time of life than another, but all are worth being reminded about. I thought I might use some of these life lessons as jumping off places to write about. I almost don’t know where to begin, because the wisdom contained in each short sentence is so important to take in and use. Right now, when I am beginning to be—or at least look like—who I use to be, it is useful to be reminded of the simple truths that make life easier and more worthwhile. We might as well start at the top, so here goes: #1. Life isn’t fair, but it’s still good. Do you find that to be true? I look around myself and see how my life has changed in the last six months and I want to cry out “it isn’t fair”, the phrase I remember hearing so often from the children I had dealings with over the years as a parent, a scout leader, and a teacher. That phrase used to make me grit my teeth. What is fair? The last few years of my life have been extraordinarily difficult and filled with loss. Some days I feel such sadness, but on balance, even if we would not choose precisely the same path, or make exactly the same choices, can you say that life is good? I can. I am sure that in the fairness department, I have ended up on the plus side. I am a great believer in appreciative living, and research has shown that gratitude is vital to well-being. I wish that I could say that I kept up my gratitude journal while I was in the midst of diagnosis and treatment for cancer, that I found the time and the heart to appreciate that something could be and was being done for me, to preserve my health and my life, and to give me years to look forward to. But I am only now coming out of the dark tunnel where I found myself. Making a decision to be positive, to think appreciatively, and to feel gratitude can take you into a new state of being. I am often curious about the people who walk in the park when I do, hurrying through their exercise regimen and never noticing the smell of the newly cut grass. With their headphones fit snugly into their ears, they cannot hear the songs of birds. I suppose that they can appreciate the music they listen to, or the newscast or commentary they are hearing, but I wonder about all they are missing. For me, the things that G-d, or Nature, or the Universe (take your pick) has provided are things for which I am unendingly grateful. And in addition, it is open to all to appreciate and to allow to enhance our lives if only we will take advantage of it. So while life may not be fair, it is good. It helps to remember that.

New experiences

The past two days have provided me with two wonderful experiences that I have enjoyed thoroughly, and have made me thoughtful as well. On Sunday, my daughter invited some of her friends to come and meet us for the first time. Since she lives in the city and we live further away, we do not get the opportunity to meet her friends as readily as we once did. The friends came, bringing good cheer and fun with them, and it was a pleasure to learn what they were doing and thinking. We are less exposed to the opinions of younger people and it is fascinating to see and understand how they think. It is also somewhat disconcerting to see how different things are today than they were when we were their ages. Our generation married younger, we were more on our own, more independent, more grown up. This generation, gen X and Y are extending their youth far longer than we did, and perhaps that makes sense if they are going to live to more advanced ages. The group that I met were interesting, actually fascinating, and interested in their world and creating a better place. Were we more self absorbed, interested in getting ahead, making money rather than making a mark? Comparisons are fruitless, I have decided, since the times were so different then. Each generation has to play the hand they are dealt, and that is just what this one is doing, and what we did as well. To our delightful guests, I thank you for a most pleasurable day. My other new experience came today, when I attended my first ever Qigong class. I had no idea what to expect, and was pleasantly surprised to find that there was a knowledgeable leader, sweet of face and kind of disposition. The guided imagery brought me back to my childhood, a carefree and happy time, and helped me to feel surrounded by love. The tears that came unbidden were necessary parts of the healing process, I think. I will now do some research on the process to find out more about it. I have finally come to the place in the process of my recovery where I feel a need to take better care of myself, and this was the way I began. It was a good beginning.