Serving with joy feels good. Serving with resentment, fatigue, frustration, irritation, wondering if it will ever be over, trying hard but still making folks you care about feel bad, and other not so nice feelings, none of that feels good at all.
This is the territory I’m in. It’s the territory I’m in by choice. So, as I write these words, I have left my Bayside home and am now back in Colorado to be the primary care-giver for my father in his final journey. Since March of this year I’ve flown back and forth to Colorado more times than I can count. I’m done with the back and forth; I’ve finally surrendered.
I just need to be there, give up my life here, for a time, and serve the man who has served me, my brother, my children, his students and his wives so deeply. It’s his turn to just be the recipient. He’s asked for me, which is fairly radical, in the story of our family. He’s also surrendered and recognized that my care makes a difference and he wants what I have to offer.
If my life was about achieving success, having a career or being perfectly sculpted, what would I have to bring to my father or anyone in their time of need? This is not a judgement of folks who strive for those things. I am commenting on our society’s over-valuing of these kinds of achievements. I don’t want or need accolades of any kind. That may seem specious, given that I’m writing about my process, my “selfless” process.
Perhaps, it will be seen that way. I share here, and wherever I find an audience, what is true for me. I know I am not alone in these feelings or experiences and that folks feel isolated way too often when they are care-giving. I choose to be present for my parents, my mother-in-law, my children, my friends, my community and those who I have made covenants with. My spiritual and personal commitments are as real and binding to me as the ones that are linked to my biology, my blood, my ancestry.
This is lifetime work. It is not something I will ever complete or finish. Perhaps it will be lifetimes of work. I hope not. I’m tired. I am looking forward to the promise of singing with the Angels and not having to serve in a body ever again. When I cross over, if I get a choice, that’s the one I want. I have no desire to come back and do any more living over. I may feel differently when I’m 90, if I’m around then, you can be sure I’ll let you all know if this has changed.
My life has been so full and joyful. It’s also included extremely hard times and situations. I’m just like every other human, on our spinning planet, in this way.
The difficulties in my life aren’t comparable to the hardships of most folks’ lives. I live a life of privilege in many regards. Difficulty, is a relative thing though. If you string the events in my life up by the tragedies and failures or by the joys and wonders, you get different pictures. It’s often felt like a pendulum swinging wildly between the two poles.
I do not believe that you can create the life you want and that if you just attune and align with the perfect philosophy or diet or get things right personally all your problems, fears, complications and debts will go away, or the president you want will be in power, or folks will do what you want, and all will be perfect and polished. I am not interested in my life being polished or shiny or perfect. I’m not interested in weighing the right amount or looking the right way or doing things according to someone’s current ideal of what is fashionable or healthy.
I am interested in mastering, to whatever extent I can, what the Holy One sets before me, not what I set before me.
And, I fail every day, over and over. I fall down all the time and sometimes, even with all my personal padding, I am bruised all over. The reality of suffering is so damn intense, it’s not mild, it’s not pleasant, it’s not calm, quiet or easy. It’s a full-on completely body-slamming story.
I live it in my body. My empathic nature is not something I am dimming or turning the volume down on. I’ve already done a volume shift to walk around and look semi-normal my entire life. I’ve learned to have a boundary between myself and others. Sometimes, though, I will still be brought up short, if another person is having trouble breathing, I also will start choking. I’ve said this all before, and I’m restating it for the following reason. Being empathic and devoted to easing the suffering of others is a full-time experience.
It is not a seamless process. Sometimes what I experience is a tsunami, sometimes it’s a slow flow of energy, like air leaking from a balloon, and other times it’s just in the background. Sometimes, I feel as if the life is being sucked out of me, Other times I feel as if I am being gifted with tremendous energy and all the gears are working properly; I’m loving, I’m being loved and I’m serving with joy.
These are the moments I live for, when it all aligns and the warm honey liquid healing/Tikkununfolds like a lotus opening. That’s what I want and it’s a palpable real experience that I have had and hopefully will have again.
It’s the true goal of my soul. S.O.S traditionally stands for Save Our Souls, and indeed, that’s what we are called upon to do, when we care for children, elderly parents, otherwise-abled children, family, friends or spouses. We are being asked to surrender our own time-frames, needs, and lives over to the care of another.
This is not something we do as a sacrifice. The word sacrifice is one I do not resonate with. In Hebrew, we make offerings. They are called Korbanot/Offerings. You can make a korban that is for wrongs you have done, or in gratitude or in praise, or for a holiday or special life event. A korban is brought forth willingly and given with intention.
If you have never surrendered yourself over to another person, then this will seem completely foreign to you. In our society, there are more opportunities to give than you can possibly imagine. And, when the world feels insane, there is no better feeling than knowing you have made a difference in the suffering quotient of another human being or the planet. When we offer willingly of our time, our hearts, our bodies, there is a return offering that comes our way and it is one that cannot be measured or calculated. It can feel like a river of life-blood, a continuous flow of manna, heavenly nourishment and goodness.
It may take some time to recognize this, due to the stress of continuously extending for another, but when you do feel the flow, it is a game-changer. Simply Offering Simply that’s my goal.
I’m not going to list the mistakes, the all too common ones, most folks and I have made when offering self. I do want to share four basic keys that make a difference for me and enable me to give myself over and over in this and other situations.
Shabbatover Serving: Make sure you take one or two days off a week, figure it out, find friends or others to give you a break. If you cannot manage a day, manage for as long as you can. Make your time off regular, same day, same times. This will mean your body and heart and mind will adjust and know they are getting a break and it will train the person you are caring for to not expect your presence at that time.
Self-Care on Start: Don’t try to take care of someone else if you aren’t attending to the care of yourself as well. Get regular massages, work-outs, walks, acupuncture or whatever it is that nourishes you. It is not optional or secondary, it needs to happen before you help others, if you can, and consistently.
Start out Slow: Take your time getting to know the rhythms of the person and place where you are. Folks who are sick or elderly are moving at a very different pace from the one that you are. It is more of a service to them for less to happen, than for everything to get done, and it’s impossible to get everything done, so give up on that.
Stay Engaged over Signing Out or Off: When things get edgy, with other family members or there is a problem or grumpiness from a care-giver or the person you are caring for, or anyone in the situation, don’t give up or resign. Just give it some space, take a break, a day or a few hours, and come back to the situation. It’s a given that there will be rough patches. Expect these moments and work to prevent them, but remember that if you stay centered and apply the other three suggestions here, a solution will be found.
On that note, of solutions to be found, I’ll close.
Nicole Barchilon Frank writes to you, from her home in California, and in the future or the past, she writes to you from the home her heart calls her to—wherever that might be…
Originally published in the Mad River Union on December 13th, 2017. Changes have been made in this online version.
This post was written over the course of several weeks. I am now home in California:
Wednesday June 21st, 2017~ I’m relaxed at this exact moment. I just had a two hour Tok Sen Thai Massage at Siam Sensation. This is my first break in six days since flying to Denver on June 14th to take care of my father post his wife’s death on June 7th. My brother and his partner are spelling me for a few hours. It’s been hellish and hard and I’ve had no time to cry, really. Tears leak out in moments, but the work-load is pretty constant. Caring for a 94-year-old beloved who is in fairly constant emotional and physical pain is a full-time, many person endeavor. My father’s just six weeks from having fallen and broken his hip, then gotten hip replacement surgery, followed by a minor heart attack two days later and being intubated despite his DNR (Do Not Resuscitate) order and then having to be in a rehabilitation facility for a month and watch his beloved wife, of the last 18 years, Judy wither away and die. This is the territory I entered when I came to Denver for the second month in the last three. I spent all of April and one week of May here helping with the hospital stay and the transition to the rehabilitation facility.
It’s a week later, once again, getting a respite at the home of my brother, his partner and my daughter. Sitting in the back yard of my childhood home. My father gave my brother and his partner this home when he moved to Denver to be with Judy. This was where I spent half of every week as a child. It’s more lovely than it ever was when I was growing up. My daughter has filled the downstairs with the art of my grandmother, her great-grandmother Perla Barchilon, her grandmother/my mother Helen Redman, and her other grandmothers’ (Maren Frank and Rachel Heller’s) art is also all over, as is my brother Paul Barchilon’s and also my daughter’s own art. The place is clean and colorful and not-cluttered. It feels like home in a completely different way than it did as a child. My brother and his partner also live upstairs in the home they designed and it is completely fantastic as well and full of art, beauty and calm.
Is this where we should move my father? Should he go into an Assisted Living/Nursing home, a thought that initially made him cringe (since starting this article my brother and his partner looked at many homes and found two that are within budget, barely and that my father also didn’t hate). We cannot afford full-time care-giving for him at his place through an agency. We cannot afford over-night care for him either through the agencies that provide that. With his funds, possibly a few hours a day could be managed, but that’s not going to cut it, in my opinion. Furthermore, he hasn’t been alone since March 30th when he fell and broke his hip. We are most likely, at this point, hiring someone to care-give outside of an agency, which is half the cost, which is pricey, but within his budget and allows him to live at home, which is what he wants. My brother will have to manage all of this and we will vet the person and make sure their police-records are checked, but it’s not the same as a family member.
My tears are still intermittent. The reality is that my father cannot live on his own, not yet, perhaps not ever. Despite two months of my time and life and the practically constant care and presence of my brother over the last six months, my father is not healed enough to live on his own. Both my sons have flown out to help for a week each and my daughter is also a regular presence in his life and home now. My Papa thinks he wants to be independent and on his own in his own home, but he’s had the loving and devoted presence of his wife in that apartment and since her death, he has had a steady stream of loving family. This will no longer be the case. There are kind and devoted folks in his building that care about him, but they cannot care-give him or be there in any kind of medically responsible way. He doesn’t want to live with my daughter in her study, which we would convert to a bedroom. He doesn’t want to live anywhere but his own home, who can blame him for that?
I haven’t had the energy to see any of my friends while I’ve been here. I cannot even make phone calls or emails much. The schedule at night has been my father needing help every two hours or so, with blankets, incontinence issues, pain management, difficulty breathing, thirst, etc… So, I’ve been in a pretty constant state of sleep deprivation, with nights off once a week or so on Shabbat if we pay the $300 it costs for one night’s care for him or when it has worked for my brother or my daughter to spend the night. Obviously not a sustainable situation.
And I’m not even touching the sadness here, the pain of my father’s loneliness sitting at the table while I do the dishes or the cooking and he looks out the window missing his wife with every fiber of his frail body and incredibly clear and cogent mind. He told my son Issac and I, while explaining that he was going to speak to us as if we weren’t in the room so he could say what was on his mind, “I pretend she is on a trip or out doing errands and this lasts for a few hours and then I remember that she’s never coming home.” There were tears streaming down his face while he shared this.
This situation is so damn hard.
And, my daughter said the other night, it’s not even bad really, because we are all loving with him and each other and he isn’t destitute (he taught French at CU Boulder for 45 years and has a good pension). He has options and we will figure out how to navigate all of this, with the capable minds and bodies of my daughter, my brother and his partner here in Boulder and myself and my family here in California. In the long-run, this story is a love-story, a family caring for each other and the person most in need with kindness, effort, intelligence and profound love. Whatever difficulties have been in my past with my father or in my brother’s past; my papa had a temper and he has never approved of my spiritual calling or my emotional nature (he thinks I should have been a lawyer!). Still, he has always loved us, gifted us with his time and caring, and been there for us in BIG ways. It’s our turn now.
This is where I spent the first night of Pesach up Sugarloaf road in Boulder, Colorado. I had planned to be with my dear friends in Oregon, but life intervened. My 94-year-old father fell and broke his hip and then two days after his hip-replacement surgery had a minor heart-attack. I flew out here to help my brother and family navigate all of this.
My father, never at ease, with care or emotions, was very upset to see me when I first got here. He requested that I not come into his room alone. He said that I was “too emotional” and my presence distressed him. I was actually expecting this, because this is his default around me and emotions. I refrain from all emotional expressions around him and have for years. But, he was so uncomfortable and unhappy already, my presence served as a reminder that things were dire or difficult.
I am the person folks usually want around them when they are sick, 99% of the time. Folks love when I bring food to them, help them navigate tests, hospital staff, doctors, end of life care issues and everything in between. I am regularly consulted, and in the company of folks who are not well in hospital and home situations. It’s something I do from my heart with confidence and skill. The fact that my father denies me the opportunity to give to him, in the ways I am most able to, is one more opportunity for me to grow.
My Mussar/Jewish Ethical practices and teachings ask us to look at whatever is present in our world as our “spiritual homework.” This idea works for me because I am someone who tries to address whatever is difficult as an opportunity. I am not always successful in this, but I do use this concept as a framework for my life.
So, my brother, his partner, my daughter, various other family members and I have been trying to do a very complex dance. There are lots of steps behind the scenes and various curtains opening and closing, in sync hopefully, and lots of improvisation. I have respected my father’s wishes, for the most part. I found that he was open to good soups and foods, which I could make for him and send with my brother. This worked for a little while and then it was “too much fuss” and “too much foods,” even though it was a small box in the hospital patient refrigerator with some cheese, yogurt, olives and soup.
My father asked where I was several times when my brother came to spend time with him and my brother reminded him that he had told me not to come. I spent my pre-Passover time cleaning my brother and my daughter’s homes and kitchens and cooking for them and my father to support all of them, behind the scenes. I drive my brother into Denver frequently, and stay in the waiting area, and try to make it easier for my brother to handle all he is handling. It’s a family affair with one person on center stage looking like he is doing it all, my brother, but there are lots of things going on in the background.
This element of caring for folks, whether they are old, or not, is critical to understand. It is often the case that only one member of a family or friend grouping will be the one the person who is not well feels the most comfortable with. It’s important to not take it personally when you aren’t the person wanted. I know this intellectually, emotionally it’s another story.
So, I have cried, done a phone session with my therapist, gone to multiple services at Bonai Shalom and been on the phone with my husband and sisters and others and processed. I’ve gotten massaged at Siam Sensation, my favorite place in town and gone swimming and taken walks in the woods. I don’t swallow poison or hurt, when I am awake and aware. I take my pain to the Holy One, to my support crew of friends and family and to my sister’s grave as well. I lay it all out and down and work on trusting that my love and care will be of help and that someday it will all make sense or improve.
Everyone is unique in how they navigate illness and stress and difficulty. There is no cookie-cutter form that works every time. Patience and calm and trust are always great tools to have if you can figure out how to have them in a crisis, no small task. Even though my father was reticent initially to my arriving and my involvement, he has warmed up to me and to my help. My presence makes a difference for the other folks in this situation. It’s not what I thought I’d be doing, on the other hand, this is what is.
How this relates to Pesach and Passover is also relevant. We look at all the ways we enslave others and are enslaved at this time of year. We look at all the things that are leaven in our lives, all that puffs us up and that is not necessary. Our pride, our lack of awareness about the suffering of others, our over-consumption, our fear and our lack of faith are all examples of things we need to look at deeply. We always tell the story in the present tense and we are not only reminded once, but repeatedly, over and over and over, that the Exodus is not something that happened once. Our story is something that is currently happening and that is happening for us and for refugees and folks in bondage everywhere right now.
We live the story in this moment.
So, in my now, having to traverse the territory of my pride around my ability to care for folks in need, I can see it as one more form of leaven in my life. Ceding the care-giving to my brother and taking a back-seat, that’s not my normal setting, nor is it easy for me, but I can and am doing it. Letting go of my childhood pain and sense of rejection around my Papa is also a way to liberate myself further from things that I no longer need to be tied up in knots about.
My father loves me, he has never, and will never understand me. Big deal, what’s new? This is the story for so many people. While it is painful, I am not alone, I am not three or twelve. I’m fifty-two years old. I have a plethora of folks who do understand me and don’t reject me. My father is actually not rejecting me, he’s rejecting having to feel things that he doesn’t have the energy or ability to handle. I represent emotions and feelings to him, I hold that space in his mind and in his experience. Just being around me stimulates him in ways that are not comfortable for him. He still thinks I should be a lawyer, which is just beyond laughable.
Soup, I can send him, through another person, that works. Yesterday, I felt a strong call, on the second day of Pesach, about ten days into my visit here, to go see him. So, I called him, he is now at a rehabilitation facility. I asked him if I could come for a brief visit and bring him some maztoh ball soup that my friend, a former student of his, had made. He said, come visit, but no soup, and only if I was already in Denver. I lied and said I was, but that it would be a few hours before I arrived. I drove in, during rush hour to see him. It took an hour and a half to get there and an hour to get home. When I got to his room he said: “I’m going to make you very happy and let you rub my feet.” This is something I’ve offered before, when visiting with him, but that he’d always refused.
So, I washed and massaged Papa’s feet, which felt good for both of us. While I was there, the Executive Director came in and asked how things were going. My father said “fine,” but then started to complain about the food. He then he raved about the tomato basil soup he’d had at the hospital and said they should hire away the cook at the hospital. This was funny to me, since he’d complained about the food there to my brother. I told the director to just have the kitchen always put some lemon on my father’s tray and that would help him enjoy whatever he was eating.
A little later, dinner was served and the cook came up. My father apologized profusely for complaining to the director and the cook assured my father, that he wanted to provide the best meal possible for him and that it was his job to do so. He asked my father where he was from originally and my father said: “France, we are French, from Morocco originally.” The cook said: “I’m from Palestine, I’m Palestinian.”
I immediately said “Salaam Aleicum,” and he shook my hand and said Aleicum Salaam and smiled. Jews and Muslims share this form of greeting. We say Shalom Aleichem, they say Salaam Aleicum, both of these things mean the same thing, Peace To You, and the response is Alecheim Shalom or Aleicum Salaam, which means To You Peace.
My father then said it was a “bloody ridiculous mess” in Israel and Palestine and that all the bloodshed and arguing was wrong. The cook didn’t say anything more to this. I shook his hand again and thanked him in Arabic, “shukran, shukran.” He smiled and departed. There was lemon on the tray they brought my Papa for dinner. And, of course, he would have preferred the soup my friend had made, but he’d told me not to bring it, so I hadn’t, trés typique, as we say en français.
We attend to the details of Passover more intensely than any other holiday. It is considered of benefit to go longer, go deeper, do more, make things sparkle or have more meaning, discuss it differently, cook more dishes, clean more, and in general go a little crazy in your preparations and expressions for this holiday. So, likewise, with my father in his situation, the details are maddening, complex and continuously shifting and challenging. It requires great attention to detail and flexibility.
I’m blessed to have a family that has consummate skills in this area. So, as we wander in this new wilderness, this place that is wholly different from what we are comfortable and familiar with, we look around us and see we are not alone. We are helping each other along, we are laughing, we are crying and we are falling down and picking each other up. We are finding ways to do what needs doing in the face of complex emotions and situations.
Let me be very clear as well, it’s horrifying to me, when I think about how hard and how much work we are doing for my father, who has health-insurance, who is in clean and calm facilities, who has children who can afford to drive or fly in to help. What is horrifying about this, is that so many folks don’t have this kind of support or care. The vast majority of people in the world, who are suffering all over this world, don’t have the resources or the facilities that my father does. My father is an American but he wasn’t born here. He emigrated here after World War II. He got his college education here in the 1950s and became a French professor at CU Boulder. He worked for over thirty years there and planned intelligently for his retirement. He found his truest love at the age of 75 and has been happily married to her for almost twenty years now.
How can my situation, which is challenging, but not horrific help me to be a better person?
What can I do differently so that the suffering of others is lessened?
Where are there places in my life that I can explore further that will enable me to be freer to give with my whole heart and serve the Divine more fully?
How can I release what constricts and binds me so that I am truly free to show up for exactly what needs showing up for?
These are my four questions for this holiday, not the typical ones, but they are the ones I’m wrestling with. May your forays into this Holy Spring Time, whether you are Jewish, Christian, Pagan, Hindu, Muslim, Buddhist or any other stripe or way of connecting to this Wholly and Holy Amazing world, be full of joy and thoughtful contemplation. May you find your way out of whatever binds you, into full-on service to what needs doing and what is for the good.
There is no way to tell this story without lots of tears, mine, yours and the world’s. It’s an old story and one that repeats all the time and is going on now. It’s my story and it, unfortunately, may be yours as well. I begin to unfold it, here and now, breaking years of silence, on my part. I do this for my healing and hopefully for the healing of someone I love, in the spirit of Elul, and because it is time. There will be much more about this in the future….this is just a beginning.
I failed my prime directive as a mother. I did not keep my children safe from harm.
I was young, single, on welfare and living with charlatans, who I trusted. I cannot justify my failure and indeed it is against Jewish understanding to ask forgiveness or try to explain or justify a wrong action when asking for forgiveness. I’m not asking for forgiveness here. Forgiveness, if it is granted, is a private personal process between my children and myself.
Nevertheless, Here, I am/ Hi Ney Ni, turning in the harsh and cold wind of my pain and regret. One of my beloved sisters, by Love, Terret, recently gave me a piece that has helped me understand this territory more. She has been part of this particular story from its beginning, in terms of being present for my children, and being with me since we met when I was eighteen. I became pregnant with my first child when I was nineteen. Terret reminded me that I would willingly have cut off both my arms, if it had meant I could stop the suffering of my child. Cutting off my arms will not stop the suffering, nor will wishingI had been smarter, wiser, seen what was happening or prevented harm from happening.
If there was a sacrifice, of any kind, that I could make so that the pain in my child’s life would lessen, I would have made it a thousand times over. We cannot go back in time and erase what was done to us or those we love. Hindsight is always 20/20. I can and will continue to support healing and hope for there to be a Refuah Shelemah (Complete Healing of Body, Mind, Heart and Soul). I will do whatever I can to make amends, but I cannot change the past.
Just a few days ago, I met with my child’s therapist, with permission. My children are all adults now, but I am wanting to respect their privacy, so I’m not naming them. This man told me to “take heart.” He said that the fact that I was allowed to speak to him meant that there was an inclination, on the part of my child, for reconciliation.
Taking Heart, for anyone who knows me, seems like a no brainer. I’m all about that, I’m all over it, I’m a poster child for it. Nevertheless, it’s not something I have done or can easily do in this situation. So, it was nice to hear those words.
In two weeks I will stand before the Holy One, with my congregation, with my friends and with my teachers. I will hope for renewal and to be granted a new vessel to hold my soul in. I’m definitely due for some renewal!
Rabbi Tirzah Firestone of Boulder, Colorado, passed on this image in a teaching she gave. I don’t remember who gave it to her, but it’s an ancient idea about the vessel our souls inhabit. On Rosh Hashanah, the Holy One grants us a new vessel, clean and vibrant to hold our self in and to pour ourselves out of. If, we have worked on our stuff, looked at our faults and made an effort to turn back to who we truly are in our hearts than we will not only notice this new vessel, but be enlivened by it. Every mistake we make during the year creates a crack in this vessel, big errors, like hurting other people makes for big holes. This means that by the time Rosh Hashanah rolls around, all that might be left of our vessels could be a shard or two; nothing that can hold water or light or love or laughter. In my tradition, if I do the work between myself and others, on Yom Kippur, the Holy One forgives me for the mistakes I’ve made between myself and myself, between myself and the Divine. Only those I wrong can forgive me for the wrongs I’ve done them.
Tikkun Olam/Mending the World, and Refuah/Healing are continual processes. Every year of my life, until I leave this world, I will have to look at myself, my mistakes, my leaks and holes. There is no free ride or free lunch when it comes to personal spiritual growth or practice. If you want to serve the Divine and to serve Goodness, you do not ever rest on your laurels. When all people on earth are fed, when all children are safe from harm, when all those whose lives have been broken by hurt are healed, when the planet is free from wanton and grievous pillaging and rape, when we honor and treasure each other in our differences of shape, size, religious inclination, age, gender identity, sexual preference, pigmentation of our skin, income bracket or whether we are human, animal, plant or river, THEN and ONLY THEN can we rest.
This doesn’t mean you can’t take a break. I take a break every Shabbat, and on every Holy Day. We have days for mourning and feeling all the hurt in my tradition. Those are important for me. Most of the time, I live in a state of constant gratitude to the Divine. I am lucky enough to be able to hear the song of the flowers and the planet. I have tremendous support from family and friends. I have a phenomenal husband who has my back in every way imaginable and who has been with me on this journey for a long time.
I will never regret having my children young and alone. This was how they came to me and I chose to keep them and have them, even without support. I wouldn’t trade them for anything in the world. Their unique genetic blends, their deliciousness and magnificence is something I will forever delight in. Being their mother has been and is the greatest gift the Holy One has ever given me. And then, I was blessed, to have a third child, finally, with a man who loved me. A man who, not only has stayed the course through very difficult territory, but who has held, supported and nurtured all of us.
I am profoundly and painfully remorseful and sorry that I did not protect my children. I am working all the time to make amends for that harm. My husband was our rescuer, the person who brought us all into his heart and under the protecting shelter of his arms. He came into our lives when my children were three and one. Because of him, healing for all of us is possible.
Since starting this post, I’ve broken down and cried several times. This territory is so terribly hard and I feel such shame, pain and grief. I’m listening to Berel Alexander’s music right now, it’s helping me. He’s singing a gorgeous song called “Giving Thanks,” from his album Hooked, and because of him, his mother Rabbi Naomi Steinberg, my family, my friends, my community, my prayer practice, and my teachers, I am able to hold this much pain and grief. Because I am not alone, I can and will keep trying to make Tikkun in the world and in my family.
I cannot know if there will be a Refuah Shelemah in our lives, but I won’t stop working for it and praying for it. A wound cannot heal if it is kept in the dark and never tended to. Wounds need to be seen and to have the pus drained out. There is no way to do that without pain and without addressing the root causes of the wound.
The great South African Archbishop, Desmond Mpilo Tutu, gave us the Truth and Reconciliation process/model. With that in mind, I am hopeful. How can anyone think that it isn’t possible to “take heart,” when we have this amazing example of South Africa and their courageous efforts towards healing from the most heinous crimes?
So, I will Take Heart. I hope you will as well, and together, with our very broken hearts, we can come together, each of us, being honest, taking chances, crossing hard territory and trusting that the only way to be whole is if we all are holding hands and working hard to speak truth, being kind, endeavoring to forgive those who have hurt us (if they are genuine in their efforts towards reparations), and even if they aren’t. Forgiveness is healing for us as well as for those we forgive. We still and always must take responsibility for the wrongs we have done and hope and pray to be forgiven.
May you find yourself held and supported as you navigate your own hard territory. You are not Alone!
I do not have breast cancer. I did find a lump in my right breast about six weeks ago. This is the story of my adventure with mammograms, ultrasounds, doctors, clinics and biopsies in a foreign country, which I navigated mostly by myself. Something which would never have been the case if I were at home. Strap on your seat-belts, here we go, this is a long ride…..
I had an appointment with my phenomenal local doctor, Sorcha Dunne, who works at the nearby clinic. The clinic is just a mile from my cabin. I needed to go over blood work related to my thyroid condition. I had her check out the lump I found under my right underarm. Because the lump was painful and mushy, she was reassuring and said: “I’d like to put you on a high dose of anti-inflammatory medication for a week and then check this lump out again, in ten days. If it’s still there, then we’ll go nuclear.” So, I got on Ibuprofen 400 mcg three times a day.
I then had a freak-out, crying in the car, praying and I think I went swimming at the pool I just recently joined. I was torn about telling my husband, because I didn’t want to worry him unnecessarily. This lasted for one day. I realized that if he had something like this, even if it turned out to not be serious, I would want to be told. This is a complex issue in most families. Who do you tell, when do you tell, how do you tell? It’s more complicated for me right now because I’m on a retreat NOT talking to all my people and family as I normally would. It’s also expensive to communicate with folks in the states from here and there’s the time difference as well.
So, I called my most magnificent husband. I cried and he agreed that it was right of me to call him. He then said he would do anything I needed and over the week I was on the Ibuprofen I talked to him at all hours of his day and mine. We strategized, he listened to me and supported me in all the ways I needed. We agreed that we would tell family after I had my follow-up visit, in case there was no more to the story, I didn’t feel like causing an uproar of fear in those I love.
I have escorted two dear friends across death’s door from breast cancer. I have two friends who are in remission/recovering from breast cancer, minus their breasts and after intense medical engagements. I have one friend still in a very long battle with lymphatic cancer. I have lost two other friends in the last year from cancer as well, not breast cancer though. In my community I am often the person you call when you are sick or dying because I was the Chair of our Hevra Kadisha (Sacred Society/Burial Society). You can read all about that here: Life and Death Matters
Death, medical challenges, and family complexity around all of this are all very familiar to me. I am often the person who is the medical advocate for my friends or others when they are navigating illness. I know this landscape from the helper side, not from the patient side. Ummmm, they’re really different! It’s a whole other world when you are the one in the scary seat.
A moment to talk about being an ALPHA female. In almost every situation I will be the alpha, I will take charge if taking charge needs to happen. This is a huge asset for the folks I help. It’s not always an asset though and I have to work very hard to not be the loudest, biggest, most intense person in any room. I pretty much have to crank the volume down on who I am all the time. The volume knob on the Nicole Being is permanently worn on the turn down side. Most folks experience me as taking up a lot of space, physically, verbally, and spiritually. This is me with my volume turned DOWN really hard.
It’s actually exhausting to always have to crank myself down, down, down. Part of why I am here away from most human contact is because the trees and the river and the birds and the angels have NO problem with my volume and I feel so safe and free with them. If you could see my energetic being it would be the size of a small sea. I’m not kidding. And everyone wants a wild body of water in their living room taking up space, on the sofa, right?
So, what happens for me when I have to divert my attention from keeping my volume turned down to be in HYPER-FUNCTION mode is that I get less good at being smaller, and I also forget things and make mistakes.
Well, I still had a lump on Monday, February 29th, Leap not for Joy!
So, then Sorcha referred me to the Mater Private Hospital in Dublin for a triple assessment; Mammograms, Ultasounds and Biopsies. This is “going nuclear,” which I thought was a metaphor, but actually it is called nuclear medicine. I’m not sure if she meant it metaphorically or not, but that’s how I heard it and that’s how I experienced it is as well.
Remember I’m in Ireland. I was told it would be two or three weeks before I could be seen for this consultation. Well, that didn’t work for me or my husband. I’d already been in a state of limbo and who knew how long that lump had been in my boob before I noticed it. One of my friends had such a fast growing breast cancer that a few weeks made a difference and because she was extremely on top of her situation, with two small children, she immediately had surgery and is alive and well today. Three weeks felt like an eternity to me. My husband asked me to talk with one of my sisters by love (name will not be given), who is also one of my doctors back in the states.
I’d been hesitant to do so because she’s a busy single-mom who just brought her mother home with metastasized pancreatic cancer and is taking care of her and her step father in her tiny home following her own painful divorce. But, Kevin insisted that she needed to be brought into the loop, so I called her and woke her up at 11 pm her time, 6 am my time. We talked for an hour and she said she wanted me to at least see if I could get an ultrasound sooner. She urged me to be pushy and she reassured me that based on my description it was probably not breast cancer, but let’s not wait to find that out.
So, as soon as the local clinic opened I called and said I couldn’t wait three weeks to get this consultation and asked if I could get part of it done sooner locally. Dublin is three hours and a whole world away from me here. Within an hour or so, Mary, the receptionist, called me back and said she had secured the appointment for me for the following day at 2:30 pm. PERFECT! I felt a little bit like an “ugly American” but Mary and Sorcha both reassured me. If I did have cancer, I’d have to be packing up and heading home for surgery, my situation was just not simple. Somehow between the angels, the extraordinary efforts of these magnificent local folks, some serious Mazel/Luck and the fact that I would be paying privately, I got into the special hospital in Dublin very quickly.
So, I threw some clothes into a bag, got all my paperwork together and asked one of the nuns to give me a ride to the train station in two hours. I got on the 1:00 pm train to Dublin. While on the platform waiting, I spoke with the Mater Private and asked for the nearest hotel. The receptionist said to try the Maldron Parnell Square and to mention I should get the special rate for their patients. I called them and asked to book a room for two nights. They only had one room available for that night, but I figured I might get lucky once I got there and anyway, I could always switch hotels if I had to.
So, on the train I went. I brought my knitting and my iPad with several novels on it. I spent time on my phone with my travel insurance AIG, and they were pretty wonderful. They assigned me a real person who called me every day and helped me get things figured out. I definitely was in hyper-function mode, which is what had to be done. No room for feelings.
I do need to share that when I first found the lump I did share that information with my Carmelite sisters and brothers here at my Hermitage. They were AMAZING. One of the nuns had a breast cancer scare which turned out to not be cancer. She came over and reassured me. The others also all put me in their prayers and were completely caring and present for me. Lots of hugs and kindness. So, even though I wasn’t with my normal crew of folks I was surrounded by their love. Additionally, my foot reflexologist neighbor, Rachel Dooney, and my chiropractor Sheila O’Brien were very available. Sheila, had also gone through this breast lump territory and procedures and not had breast cancer. So, all of these folks were there for me and praying for me and sending me love and support.
Once I got to Dublin, I took a taxi to the hotel. The staff was completely multicultural, Indian, Brazilian, Spanish, Moldovan, Basque to name just a few. I loved all the accents and languages and every person there was generous, kind and solicitous of me. They printed out my medical documents, release forms for me and even faxed them for me, free of cost. They just went out of their way to be helpful.
I got to speak Spanish and my tiny drop of Russian also, which was fun and distracting, two things that are helpful when you are freaking out about possibly having cancer. I ate at the hotel for dinner and went to see Big Maggie (a play I’d been hearing about on the radio and which has been sold out for months). I figured I’m in the country of the Bards and I am going to try to distract myself and have some fun. I booked my ticket while on the train into Dublin and got a pretty good seat about five rows from the stage a little to the left of center. The show was very intense and powerful and I am sooooooo glad I saw it. The theater, the Gaiety, is very old and beautiful with red velvet everywhere and sculpted ivory-colored angels and flowers all over the place as well as having a huge crystal chandelier. the acting was stunning and excellent and inspiring.
After the show I returned to the hotel and attempted to sleep. Guess how that went? So, reading, phone calls to my husband, solitaire and several episodes of 3rd Rock from the Sun were watched instead. I had two hot, hot baths as well. Perhaps I got three hours of sleep (which is my average on a bad night). Around five a.m. I got up and prayed the morning service. This takes me between two to three hours. I read, chant or sing the prayers in Hebrew, then in English. I cry through most of them, so that means it just takes me a while. My tears were not just unique to this intense and fraught time.
I cannot get through three or more words of any prayers without tears of joy, gratitude, and awe. Sometimes sadness too, but that’s not really what the tears are about, they still slow me down time-wise. Perhaps, they swim their way to heaven along the river of the water falling from my eyes. I have stopped judging this. This phenomenon has been constant for me since I came to Ireland. It was pretty frequent before I came on retreat, but there is no one to judge me, wonder if I am okay, or otherwise interrupt my process here, so I have gotten to deepen in all my spiritual practices, which is exactly why I am here!
I am reminded of the story my Rabbi Naomi Steinberg tells about Reb Zusya. Reb Zusya is a simple poor fellow. There are many stories about him and I may not have this one exactly right. The one I am thinking about is a story where someone is commenting to the Rabbi about how Reb Zusya can never get more than two or three words into a prayer before he faints or, the less kind, assume he has fallen asleep. When asked about this Reb Zusya tries to explain that just saying “Baruch Ha-Shem” Blessed is the Name, makes him see the throne of Glory and it causes him to start contemplating the fountain of blessings flowing from the Divine. This throws him into a profound state of awe and trembling and he is overcome. Since almost all of the prayers start this way he can never get past those first few words, and in fact he faints trying to explain this. I think it is the Rabbi in the story who chastises and informs the others about the holiness of Reb Zusya and his devotion and engagement with Holiness.
I’m no Reb Zusya, but I do experience tremendous energy, angels and wonder. This happens for me whenever I pray in Hebrew or chant or am engaged in Holy prayer or meditation with others in any language or religion. If the heart is present, then I feel that in all my cells.
It was good to pray, in my hotel room in Dublin, it’s always good for me to pray. It just takes me a long time and I get wet.
So, after praying I went downstairs for breakfast and headed into town to get my underarms and legs sugar-waxed. I had asked the nurse about if I should shave and she said yes, so I treated myself to that. You may not think a sugar wax hair removal is a treat, but it doesn’t involve me taking a razor to my skin and lasts longer and reminds me of the Hammam Pacha (something I hope to write about soon). I had time for lunch and found a delicious Nepalese restaurant called Diwali. It was so quiet, with a large screen full of images of nature playing, soft raga music, quiet diners and large fish tanks full of beautiful fish; it was a sanctuary in the midst of busy loud, thronging Dublin. The food was EXCELLENT!
The woman Lindsay, who did my waxing, was great. Her business is called The Sugarist. She is from Seattle and we had a great set of conversations full of feminism, food, politics and lots of other great chatter. She was excellent. Alas, finally it was time to head to the hospital, so I hailed a taxi and dropped my big bog boots and large jacket off at the reception desk and got back in my taxi. Once at the Mater Private Hospital I was treated with tremendous kindness and graciousness. There were about seven other women,with their friends or spouses in the breast treatment area. I was the only person by herself, but I know lots of folks were praying for me and thinking about me.
I didn’t have to wait too long before I was called in for the first set of Mammograms. I’m not going to describe those. If you’re a woman over 40 you should know what I’m talking about. If you’re not a woman, this is one of the things you can be very grateful you do not have to go through. So, they took lots and lots of shots of my right breast and several of my left. The technicians were funny, kind and gentle–even if the machines are the exact opposite of that.
Then I went back out into the small waiting area and after another not too long wait I was ushered into the ultrasound room. The doctor Michelle McNicholas was a redhead and I love redheads! She and I also share a name, since Nicole is in her last name. She gooped up my breasts and started looking around. She didn’t seem too concerned and said so, she found a second large lump on my left breast which I was unaware of. This is when you start to really get afraid, if you’re me, even if the doctor is saying reassuring things. She said she wanted another set of mammograms for the left side, since we hadn’t done as many on that side and she wanted to see a certain view. So, back to the Mammogram Monster Machines I went. More mushing and smashing and then back into the ultrasound room. Michelle was very reassuring and said she really didn’t think I had anything to worry about. The tissue looked like and was behaving like “fat necrotic” tissue.
She and I agreed that we still should do a biopsy. I was there, I was lumpy, I wanted to be certain that I didn’t have breast cancer. So, I was then numbed up on my left breast and she did two fine-needle biopsies. I didn’t feel these, at the time, but they have scary noisy loud clicks which the doctor warned me about. Then I got dressed and went back to the waiting area. There was one more doctor to see.
I really loved the process of this place. It was multi-pronged with procedures and tests but also with a follow-up conversation and final exam with a second doctor. I just felt completely covered, seen and cared for and all of it was going on in one small area of a larger hospital. So, the nurse for Professor Gory (the name of my last doctor, really!), came searching for me. She tried to pronounce my last name, and I told her, never mind, just say Frank and don’t bother with the Barchilon. She said Dr. Gorey, when looking at my chart, commented that I must be French. So, as I walked into his room, I greeted him in French.
The whole exam went on in French, much to my delight, and his. There was a little English for his nurse too. It was somehow so comforting and friendly to be laughing and chatting in French. His French was excellent. So, he did a final exam on my breasts with his hands and then sat me down and said. “I’m almost certain you have absolutely nothing to worry about.” We will get back to you on Monday with the Biopsy results, but my advice is that you have a mammogram in two years and that you ONLY examine your breasts once a month. I know you’ll probably want to do it more frequently, but don’t make yourself crazy.” We shook hands and I went to pay the bill, feeling fairly relieved in general.
So, for all of this care, which I cannot even imagine the cost of in the U.S. I paid 1,100 Euros total for Mammograms, Ultrasound, Biopsies, Doctors, technicians, local anesthetic, etc….I think the cost for all of that would be ten times or more for the procedures and consultations. I wasn’t happy to shell out that money, but it will hopefully be reimbursed to me by my travel insurance. I’m sure that reimbursement and paperwork process will be much longer than the medical one!
I walked back to my hotel, which was about ten blocks from the hospital. I took 1000 mg of Paracetamol (like Tylenol) and went for a nap in my room, or an attempt at a nap. I spoke with my brother and his partner and also with my husband and then went out for a really fancy dinner at a place recommended to me by the front desk staff. It was called Chameleon. I asked the Brazilian at the front desk where I could find good spicy food within walking distance. This place was an Indonesian fusion type place that they had heard was very good. I checked it out on my iPhone and walked to it, it was about a twenty-minute walk. I had a phenomenal meal there and will definitely eat there when I’m in Dublin again.
Now it’s all about the waiting for the test results and the anxiety around that. I’ll keep this part fairly brief, although my wait for the results was not brief. On the Monday, five days after my biopsies, I got a call saying they wouldn’t have my results until Wednesday. I was reassured this did not mean anything bad, but there was no way for me to not feel anxious. More crying, phone calls with my husband, strategizing about leaving my retreat early if I needed to and walks and prayers. On the said Wednesday, I got a call saying they needed to do a second stain and that the results of that wouldn’t be in until the following Monday.
I sort of blanked out, at this point, on the phone with the nurse, panic on my part. My husband stayed calm when I told him and said perhaps they’d made a mistake or ??? I asked the insurance medical helper person to tell me what getting a second stain meant and they gave me a very cogent response that was reassuring and said that double-checking by doing a second stain of my tissues was a very good protocol. I still felt totally freaked-out, but was trying to stay positive.
Come Monday, a full twelve hellish days, after the biopsies, I called the hospital first thing in the morning. I was told they couldn’t tell me the results and that the report was forwarded always to my general/referring doctor. This was different from previously, since Louise, the nurse at Mater Private, had called me with information all the other times. Fear set in. I called my doctor’s office and Mary said they didn’t have anything yet. A few hours later I got a call from Louise telling me that there was NO CANCER! She said they’d just gone over the results and had a meeting, their protocol, and she called me as soon as it was finished. I must have gotten someone on the phone the first time who was either new or not aware of the situation. You can imagine my joy and relief.
So, that’s the end of this saga! My youngest son is here visiting right now. We’re enjoying the most beautiful sunny weather, walks, my cooking, and we’ll head to Dublin for a show and dinner at Chameleon before he flies home. I’m a very lucky and grateful woman!!!!
Ethan laying in the non-cancerous lumpy, soft, mushy grassy knolls on the walk to one of the Holy Wells near my cabin. Sun, Son and Supreme Joy and Beauty!