I was interviewed for a story on home funerals in Upworthy by Evan Porter, and he wrote a beautiful piece. Very grateful to be sharing it here:
I’ve been feeling exceedingly sad today, and the last couple of days, and I had a few ideas of what might be contributing, including one of my dearest, most beloved friends about to have surgery for cancer for the third time. It’s also coming up on the anniversary of my father’s death, which continues to bring grief to the surface, even after 48 years.
Then I remembered that it was three years ago yesterday that Elizabeth was in the ICU, and had her second, emergency brain surgery. The day before that was her initial one, which we learned was largely unsuccessfully at removing the large tumor that had not responded to chemo. Three years ago today was the day she had a stroke, and could no longer move her legs or her left arm.
And now, it’s making more sense…why I’m feeling like once again, it’s the end of the world as I know it. (Which always reminds me of this great song, which I start hearing whenever I think that phrase: https://youtu.be/Z0GFRcFm-aY)
It’s amazing how the unconscious and the body remember these anniversaries, even when the mind doesn’t.
Starting in January of this year, these months have been both amazingly wonderful, and extremely challenging, which are both reasons why I haven’t been writing much here. Two close family members have had worrisome diagnoses and unresolved health issues. A friend’s husband was diagnosed with lymphoma. By the time it was diagnosed, it had already spread throughout his body, and he died within weeks. Another friend’s niece, about Elizabeth’s age, had been diagnosed with a form of leukemia in the fall. I watched intently, from a distance, as she progressed through brutal treatment, to an amazing remission, only to be followed immediately by her heart failing from the chemo. She died about three months ago, at the age of 18.
As I mentioned, I’ve also been watching from afar as one of my best friends is dealing with cancer, doing amazingly well through over 18 months of chemo, radiation, surgeries…showing resilience and strength that is so like him, and with his wisdom, compassion and loving presence completely intact.
Each of these experiences has impacted me deeply, bringing emotions and memories to the surface that I sometimes have the luxury of allowing to remain below. Not forgotten, but not front and center either. I no longer can distance myself. I no longer have illusions that everyone will be fine; that people don’t die because they are young, or seemed healthy just last week. Of course I knew this before, intellectually, and somewhat internally as well, since my father had died when he was 30, my uncle at age 21. But I was very young then, and losing one’s child to cancer is like nothing else, not even the loss of a parent.
Almost 3 years…
Almost 3 years since Elizabeth died and I don’t cry every day. I think of her more often as she is now, appreciating her presence in my life. I spend less time now thinking of her as she was in her last couple of years of life, at age 21 and 22, less time longing for another phone call or meeting for a latte and a scone… I have more random memories of both her and J, from all different ages, some joyful, some regretful, some proud, some guilty – more what feel like “regular” mother memories.
A week ago though, a friend had gifted me with a trip to a spa. As I was relaxing in the soaking pool, a mother about my age entered with her daughter, who looked to be in her early twenties. Their easy communication and manner reminded me a great deal of me and Elizabeth, and it took all I had to keep from sobbing right there, the loss so fresh and great. It also reminded me that it is in those quiet, reflective times that the emotions have more space to come to the surface. Much of my life is occupied by working with clients, listening to stories about their lives, reading about other’s lives on Facebook, blogs and books, and on and on.
It’s easy to fill up all the minutes of the day, and why I treasure my times of reflection and meditation. When alone in the mornings on Maui, I play Pandora on shuffle while I make my breakfast smoothie, present with my thoughts, with the other worlds and connection and messages that come through the music. It gives me a few minutes of this time for reflection and connection. When here on Molokai, I spend time in the ocean, watching the clouds and feeling Elizabeth, feeling her presence in nature, talking to her and feeling her response. It’s not enough, but I’m so grateful for these precious moments.
This week, I am crying at every little thing. Even sitting down to write a blog post makes me teary, and there’s nothing I’m particularly sad about in this moment.
This week I am staying up late watching full seasons of shows I like, family dramas especially, and sobbing through them. So much emotion – from marriages, to deaths, to new babies…and of course the scenes with the mother and her 20-something daughter having her first baby just put me right over the top…
This week I just want to stay in bed all morning reading Facebook updates on my phone, laughing and crying at silly videos and other people’s lives.
This week I want to eat chocolate for breakfast. And lunch and dinner. (Though I did make a great lentil soup last night to supplement the chocolate.)
This week I am angry at Elizabeth for dying. I am still stunned. Shocked that she left. Shocked that this fierce, stubborn hard-headed young woman, stronger-willed than I her whole life, could be gone. Taken down by something that wasn’t supposed to kill her. All kinds of people survive cancer. How did she not?
This week I rediscover Elizabeth’s Tumbler “Freshly Shaved Legs”, and smile at her posts the last months of her life – about fashion, music, deep thoughts, love, worries about her phone not working and being out of communication (little did we know she’d be communicating in a whole new way so soon…). I forget how funny she was, in her sly, kittenish way. I admire her writing style, wish I could emulate her, and know that she is unique.
This week I reread some of Rachel Remen’s book “Kitchen Table Wisdom”, which I loved when I read it years ago. One story is of a man who had survived cancer, and reading it this time, it seems she believes he survived only because he was able to move through and heal some deep emotional woundings. As Elizabeth’s mother, I feel responsible for ALL her emotional woundings (which I know intellectually isn’t true), and feel myself sink into self-blame.
This week I delight in the yard being cleaned and feeling brighter, more spacious, open; in adding a pump to my little pond so I hear running water from my bed when I wake up in the morning; in a basket full of oranges I picked from our backyard.
This week I cry tears of love and my heart opens as Zelie listens to her inner calling and attends a voice workshop for 10 days, being challenged and loved and supported in her soul’s work.
This week I listen to Julianna with pride and deep love as she prepares to graduate college and move out into the world at large, making her way with such grace, determination, focus and wisdom.
This week I despair at how little I’ve been writing, and feel my heart crack open when I discuss taking a writing workshop, and how I feel called to write a book about Elizabeth’s life and death and our journey together.
This week I feel the full-body Yes to this call, and know it’s not in my timing, any more than the timing of this post today, this week.
I have been remarkably quiet here for some time. Not that I don’t have anything to say, but I’ve felt somehow paralyzed. There are some days filled with joy and gratitude – full and hopeful, and I don’t have much to say about them. There are days filled with deep sorrow, my eyes filling with unspilled tears with nearly every breath, as the past two weeks have been, and I don’t quite know how to express in words what is in my heart…I am grateful for these anniversaries and birthdays as it gives me an absolute knowing that I will sit down here and write, and there is much that wants to be written.
Today, January 12, 2015, Elizabeth would have turned 25. She would have been here in Hawaii these last couple of weeks with me, with her sister and my partner, with her aunts and her cousins, her grandmother…we would have all celebrated her birthday together, at least in my imagination. And she’s not. And we’re not celebrating with her. I know she’s here in spirit, I’m feeling her laughing at me, and I don’t care, I just wish she were here. Her bossy, sweet, appreciative, wise and beautiful embodied self.
I know I’m not alone in missing her. It’s possible I’m not even missing her and hurting the most (though it’s hard to imagine that). I know the rest of our family and her close friends, maybe even people I never knew, are missing her terribly, their hearts hurting and throats filled with tears. And yet, even when I’m with others, I feel alone in this. Ironically, I’ve barely been alone these past 3 weeks, and perhaps that’s part of why I feel so separate from Elizabeth. It’s when I have more time alone that I can most easily feel her presence and connect with her spirit, and then I feel more connected with everything.
I do sense she’s farther away these days though – tending to bigger things than just me and my grief. She feels more diffuse nowadays, more everywhere and less anywhere. So I will celebrate her birthday without her, with family, and mostly within myself.
Her birthday is deeply important to me. I gave birth to her 25 years ago on this day. I knew her intimately from the time she was conceived. I fed her from my own body for over two years. I watched her joys and her sorrows and her loves and her fears. I watched her take her first step, discover her love for avocado, dress up in clothes with delight, eat her first and her last, bite of food. I watched her take her last breath. Today, she will be honored and loved, celebrated and cried for. I carry her with me and all who are reading this carry her as well. Thank you.
Happy birthday my sweet first born. Happy birthday Elizabeth Blue.
These photos are from 2009, on a family vacation when Elizabeth and I celebrated our birthdays together. Mine is December 24, and hers January 12, and we were all together sometime in between.
A Cancer Poem
written by Elizabeth Blue during her treatment for non-Hodgkins lymphoma, 2012
As I pray to the goddesses of white blood cells
to increase my cell counts
so I won’t get sick.
Won’t get a fever and go to the hospital.
It becomes more apparent
that gentle hand of grace
we call god
my own body.
As I pray to the goddesses of white blood cells
to increase their numbers
I won’t get sick.
I won’t get a fever
and go to the hospital.
And I imagine my fate
hinged on their fingernail
I know more than ever
that twisting fate
we call god
is part of
my own self body.
Victoria told me
a shaman told her
so many ask
to meet God.
And then they say:
keep my children safe.”
“Keep me healthy.”
“Don’t send me to war.”
“Let me be prosperous.”
“Let me be in love.”
“Keep divorce away.”
“Let me be beautiful.”
And Victoria told me
she thought it was interesting
the unwillingness to surrender
yet want to meet God.
We were talking about cancer I think
When she told me all this.
“Yes it is interesting.”
Elizabeth Blue©, 2012
I’m sharing some of Elizabeth’s poetry as I am able, selecting ones that I love, and that offer some deep wisdom, beauty and teachings for us all.
I am over the Pacific Ocean as I write, traveling from my home on Maui to Berkeley, California. My mother, in her wisdom, proposed the lovely idea of gathering in the Bay Area, inviting me to join her there, along with my sister who lives close by. My oldest friend and Elizabeth’s godmother lives nearby and will be joining us for some time as well . It was my longtime home, one of my favorite places, that now holds many memories, joyful, bittersweet, some sad. It is where both my daughters were born and where I transformed from a young 19 year old at UC Berkeley to a slightly wiser and more experienced 41 year old mother of two, when I was told by the Universe that it was time to move on.
This Tuesday, September 23, 2014 marks two years since my daughter Elizabeth died. It is still hard to fathom that this has even happened, let alone that it has been two years since I heard her voice or touched her hand. It has now been longer than two years since I listened to her laugh, argued with her, met her for our weekly coffee dates to hear what was going on in her classes, with her friends, the guy she was dating or maybe someone new she had her eye on. She would always ask about me too, whether from being taught that it’s the right thing to do, or from genuine interest, I don’t know, but I was always touched and happy to share my life with her as well.
What do I miss the most? I miss sharing a goat cheese and sun-dried tomato scone at Raging Sage with her, both of us wanting the other to eat more than half, and giving the crumbs to the little brave birds that would gather round our sunny table. I miss her texting me to let me know her weekly schedule, making sure we found a time to get together every week.
I miss Mother’s Day when she would always give me a card and a thoughtful gift, and write a beautiful message of how much she loved me and how grateful she was that I was her mom. I miss her so much that just writing of these memories makes me cry on the plane, and yet I’m so happy that I have them. I see some photos of her and for a moment see myself, knowing simultaneously that it’s her. I am starting to understand how merged we were, and perhaps still are.
We are meeting for this anniversary with no plans except to be together. I hope to do some things that Elizabeth would have loved. I realized this morning that shopping for second-hand clothes in some of her favorite stores would delight her, and buying some makeup (which I barely wear) would make her happy too. I’d like to get another tattoo, but think this next one will take some planning… Probably we’ll create an altar. Perhaps we’ll have a picnic on the beach, eating delicious foods, taking full advantage of our embodiment, enjoying the sensations that she no longer gets to experience and sharing with her our pleasure and our longing.
I look back at these two years since she died, and the year before that when she was dealing with cancer, and in some ways it’s a blur. I find myself having moved to Maui, in a most amazing and beautiful new home, being supported with such grace, and some challenges. I find that I’ve been supported financially throughout all this, somewhat miraculously. I see that my work continues in the ways that I love, supporting others through healing work, teaching, facilitating and writing…and I see that it is shifting in ways I cannot yet know or envision. Another metamorphosis is at hand, being guided and supported, with massive faith and trust, and I can’t explain how or why.
I frequently talk with other mothers who’ve lost a child, or a beloved spouse, who ask me why God would do this? How can they have faith in a divine source who would cause such pain? It is hard for me to answer, because it is simply a feeling I have, a deep belief that I don’t remember being taught, but which has emerged in me through necessity – that there is a purpose to each tiny (and huge) event in life, that each moment is truly as it is meant to be, and there are no mistakes. I know that can sound like superficial cliches, but to me it is not. A quote from our dear teacher Maria Elena Cairo (Zelie’s, Elizabeth’s and mine), that I found in large print in one of Elizabeth’s journals from age 14: “The soul does not fuck up.” That’s one wonderfully succinct way of saying it.
And this just floated across my screen, as photos from my computer ‘randomly’ do: “There is no coming to consciousness without pain…” from Carl Jung. Juxtaposed with that is one of my favorite teachings of the Buddha: that pain is inevitable in life, but suffering is optional, and that has stayed with me since I first read it many years ago. It is what I choose to do with that pain that matters to me. I can feel it fully, allow the rage to move through, so immense that I want to pull up huge trees and destroy forests with my hands… I can allow the grief to pull me to the floor, sobbing, and then sometimes merging into laughter as another wave comes in, seeing the humor in the self-pity or tragic beliefs I was just holding…Sometimes now it lasts for moments, sometimes I move into days of sadness, but I don’t feel that I am suffering and I am certain that Elizabeth is not suffering. I still feel her sense of humor, her playfulness, and her love when I tune in to her presence.
I am blessed.
I have been blessed.
I will be blessed.
I know grace.
I have felt the touch of grace.
I have seen it encircle and emanate from my daughter while she was dying.
I have experienced unconditional love.
I am moved to tears by what a rich life I have lived these fifty years.
And I will be blessed with each day I am given.
Here’s the background: for the past three years I’ve had a bony bump on my forehead. It didn’t hurt or grow much, changed little, and mostly I ignored it. It started to bother me when I saw it in photographs, and to assuage my vanity, I looked into having it removed. I was pretty sure it was a cyst or other benign growth. A plastic surgeon was about to do it, but decided I really needed a CT scan first, to be sure what was under there…
Now we jump ahead to my move to Maui in March of this year. I finally had health insurance and on my first visit to meet my doctor, I mentioned the bump. So I had an xray of my head that day, and she called me later, sounding worried. She said they needed to do a CT scan and that it was a “lytic lesion”, which could have many causes, but it means something is “eating away” at the bone. So, I have a CT of my head, and now she mentions she’s consulted an oncologist.
For someone whose daughter died from cancer less than two years ago, that is about the last thing I wanted to hear.
He or she (the unseen oncologist) recommends a CT of my chest, abdomen and pelvis, and what I understand, while I’m completely freaking out, is they think I’ve had cancer somewhere in my body (for over 3 years) that has spread to the bone in my skull. The doctor was obviously scared on the phone, and this is what worried me the most. She wasn’t reassuring. She didn’t say this is just a rare possibility. When I asked “but wouldn’t I have some symptoms if I’d had cancer for over 3 years that had spread to my skull??”, she said “Not necessarily.” I told her my doctor friend had said there are many benign possibilities, and her response was “well, did you tell her it’s a lytic lesion?”
The BIG CAT Scan
I went for the big CT scan. It took 2 intense days of waiting, with little sleep, terrifying unbidden images filling my head, of what my life would be like if I was told I had cancer somewhere that had spread to my bone. Imagining what treatments I might have to go through, what would be the chances I’d be cured, what quality of life I would have, on and on. I do have a good imagination, though I was focusing on imagining my body whole, healthy, vibrant and living to be an old woman…
Finally the doctor called and told me there was nothing of concern in these full-body scans. But now they needed to do an MRI of my head, to get a more detailed image. I had an MRI done of my head, again waiting on pins and needles for a call with the results, and she tells me they still can’t tell what it is, but the possible diagnoses on the radiologist report include cancer, and also benign possibilities. Each test they think will give more information and rule out cancer, but each test shows a mystery. All this time, I can hear the fear in my doctor’s voice, talking about what next test the oncologist recommends.
Gratitude for my inner and outer resources
I am incredibly grateful for all the tools that I have: over 15 years of practicing Reiki and giving myself Reiki constantly during this time; years of practice remaining in the heart-center in the midst of chaos and fear; the aromatherapy, herbal, nutritional and homeopathic remedies I knew to use for calming my nervous system and clearing the radioactive dyes they injected into my veins; doing prayer and ho’oponopono constantly. I am grateful for knowing to get help and support from others too – receiving acupuncture and craniosacral work, hypnotherapy and energy healing from my gifted and wise friend Kathleen, talking with family and a few close friends. I’m incredibly grateful for my partner, Zelie, who was with me every step of the way, offering to be with me for each appointment, listening to all my stories and holding me while I cried.
Fear of Not Living
I am grateful, because even with all these tools, I cried. A lot. Even with my own and others’ intuitive read that I did not have cancer and wasn’t dying, I was terrified. I was more frightened than I’ve ever been in my life. More off-center and filled with anxiety than I’d been during the ten and a half months that Elizabeth had cancer, or even when she died. I kept working with this fear, asking what was it I was so frightened of? It wasn’t fear of death. I know deeply that when it’s time to die, death itself is welcome. It was fear of not living. What terrified me most was the idea that I have so much left to do, that I haven’t yet fulfilled my purpose here, and I need many years still to do that. I feel I’ve been preparing my whole fifty years of life (maybe even lifetimes) for what lies ahead, and I was afraid I wasn’t going to have that chance.
Of course, I did not want to have cancer either. Watching my grandfather, then my daughter, and now one of my closest friends go through treatment for cancer, I knew I could do it if I had to, but really. I was asking the Divine “Really? Can I please have a break?” I lost my daughter less than two years ago, I was still exhausted from my move to Hawaii, and I am entering what feels like the best, prime years of my life for my work serving others: writing, teaching, facilitating, doing healing work and bringing through the gifts that Elizabeth shares through me. I could not believe that the Divine plan was for me to go so soon, and yet, I didn’t believe that was the plan for Elizabeth, and she was just 22 when she died of cancer. I knew that it was not up to me and my preferences. I kept doing The Work, inquiring within my heart about the truth of what I was believing, and on some deep level, I had to surrender to the mystery and the suchness (as my teacher Brugh Joy used to say).
I felt Elizabeth especially close throughout these many months, from April til early August. The synchronicity of this was not lost. She had lymphoma, initially in her chest, which recurred in her brain. This recurrence was essentially untreatable, and my mystery bump was on my head, in a very similar place to where her tumor was, on the opposite side. (Interestingly, my bump had appeared some time in the months before Elizabeth was diagnosed with cancer.) I sat with her as she had brain MRIs done, CT scans of her body, countless blood draws, meetings with worried doctors, and I could only experience that through my own eyes and heart, as her mother. This time, it was my body we were talking about, my life, and it was a completely different experience. I feel that a large part of why I was going through all these tests and the emotions that accompanied them, was so that I could have a better understanding of what Elizabeth (and others facing a terminal illness) may have gone through. Another part is to take me deeper on my own healing path, feeling and expressing layers of emotions and writing about some difficult aspects of my relationship with Elizabeth.
Direct Evidence of The Mind/Body Connection
I’ve long had an immense respect for, and direct experience of the mind-body connection. What happened during this time of such stress served to more deeply embed this in my being. I hadn’t had any pain from this bump, other than an occasional tenderness over the years. However, after I heard the possibility that it could be cancer, and I was so overwhelmed with fear, with my stress levels high, I started having pain in the area of the bump! I could feel the pain increase after I had a conversation with my doctor, and I could feel the pain decrease when I placed a tachyon directly over it. The tachyon is a small disk that helps to direct healing energy to what it’s placed on. It also had an immediate effect of visibly shrinking the bump! I could feel my body relax as soon as I placed the tachyon, and seeing the bump shrink by the week also helped me to relax, so it worked in several ways.
Lab Tests to Rule Out Myeloma
Finally I had a new doctor who agreed that blood tests might give some information towards a diagnosis. Kaiser sent me an email with each test result, and with each one my heart would be racing as I clicked on the link to see the results. Almost all came back quickly and normal, (and I’ve never been so happy to be normal in my life!), until we were down to the one test for myeloma (bone cancer), which seemed to be the doctor’s biggest concern. This one, of course, took many days, and the first of two parts came back normal, which had me sobbing in relief. However it was on a Friday afternoon that the last of the tests came in. I was so nervous – it felt like I was going to open an envelope that would determine the course of the rest of my life. The result showed something that I did not understand and didn’t know how to interpret! I could not believe it. I had to wait til Monday to receive an email response from my doctor that it was normal! Finally, something in me shifted and I trusted what I’d been feeling, that I do not have cancer and my body is healthy.
There was one piece to complete however, which involved surgery (albeit minor), to my head. You may know that Elizabeth had brain surgery in July of 2012, to try to remove the tumor which wasn’t responding to chemo, and the surgery did not go as planned. Her brain swelled, necessitating a second surgery to remove part of her skull, and she then had a stroke. After a week in ICU following the surgeries, she came home to hospice. So having a bone biopsy of my skull was rather unnerving, but this was the way to get clarity about what is causing this bony growth. (I’d been asking for this since the beginning of the tests and mystery, but that is another story.)
A Bone Biopsy and Flashbacks
The biopsy itself was fairly uneventful, with Zelie flying with me from Maui over to Oahu as that’s where they can do a CT-guided biopsy. They told me I wouldn’t have much pain afterward, even though the radiologist had to essentially drill a small hole into my forehead bone. The next day at home, as the local and sedative medications wore off, I started to have intense pain. Fear combined with pain makes it much worse, and because I’d been told not to expect pain, I was worried that something was wrong. We were also preparing for a hurricane that night, which only added to the stress…
Sitting with a frozen pack on my head and crying in pain brought me right back to when Elizabeth was having horrible pain in her head, when the cancer had come back in her brain, but before we knew that’s what was going on. I finally took something stronger than a tylenol, along with many remedies to help reduce swelling and bruising, and to facilitate healing, including arnica, dandelion root tea, and turmeric, and was able to get some restless sleep that night.
I received an email the next day, saying there was no cancer found! All they could say was that it was “reactive bone”, usually caused by trauma. So on one hand I’m back to where I started, with a bump on my forehead, no real idea what it is, and knowing that it is nothing to worry about, which had been true these past three years. On the other hand, I’m in a very different place than where I started: I have a new perspective on mortality and what it can feel like when you, or your doctors, believe you may have a terminal illness. I have a different appreciation for the amount of time we have here, and how precious each day is. I wish I could say that every day is beautiful and the whole world looks fabulous all the time, but that’s not quite it. I’ve always been grateful to be alive. I lost my father at age 3, and had a usually fatal illness myself when I was 4, so I’ve been blessed with a profound appreciation for the gift of life as long as I can remember. What has changed is subtle. It is slowing down, eating more croissants (cause we never know…), loving more, with greater compassion, and I hope, greater presence.
Almost two weeks later, I still have a bruise/abrasion (mysterious how it got there – it covers the bump, but it’s not where they placed the needle) in the shape of a heart on my forehead. It may go away eventually, but I feel like I now have a heart tattooed on my third eye, a daily reminder to see everything through the heart. And another reminder that my heart will continue to heal.