Pretty much speaks for itself.
Pretty much speaks for itself.
For some reason I decided to log in to Elizabeth’s email account a few weeks ago, just to see if there was anything important there. I discovered she had folders that I’d not noticed before, and in one called “treasures” I found this beautiful birthday email she’d sent me, on my birthday, when she was 15. I had saved it, and was surprised to see she had too, among correspondence with special aunties, her sister and a couple others.
This is helpful for me to read when I occasionally let myself remember the very challenging times we had; the times when Elizabeth felt I’d betrayed her; the times she wanted more than I could give; the times she was hostile and rude to me and my partner, the times I was not the mother I’d hoped to be, wanted to be…
I hope it may be helpful for those of you who have teenagers, or who have lost your beloved child without the chance to hear or read these words, as I believe all our children feel this about their mothers, at some moments in time. I’m grateful she had the chance to put this into words at such a young age.
I hope you are having a wonderful birthday. I have
arrived in San Diego but so far have no luck reaching
you by phone, so I am trying email.
Thank you for being born, for your soul coming in and
giving birth to my body, I think you are such a
wonderful Mother and such a wonderful human being.
Even if you weren’t my own personal Mom I would be so
lucky to be on this Earth at the same time as you!
You have taught me so much about being a woman, being
feminine and holding such great love for that. You
have expressed so wonderfully to me deep mothering
beauty from the time you sang me songs as you held me,
to your belief that any kindergarden who didn’t take
me was suffering a loss, to standing with me and
trying to hold me as I yelled how I hated you and what
you were doing, to forcing me to go to public school
because you were following your intution, to saying
prayers to keep Brieana and me safe as we lived our
daring little lives, to saying yes to (visiting) Palenque and
allowing me to go and have one of the most decadently
amazing times of my life, to holding my hand as I
cried for a home I had left behind, to trusting my
judgement now and loving me. I feel like from the
time you sang me songs, gave me life and breathed into
me your love, to all the journeys we have walked
together on this path we call life,
you have been my
constant source, an inspiration and probably the
greatest love of a daughter’s life.
Thank you for being, thank you for loving, thank you
for being born and thank you for my birth.
I love you
The photos I intended did not make it the first time, so I’m doing this again!
I’m not inspired to write much today, but want to share a beautiful day of remembering, celebrating and loving Elizabeth. My mom, sister, dear friend Victoria (Elizabeth’s godmother) and I gathered with food and drink and created altars and played on the beach.
Here is some of what the day held…
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.
it’s your 24th birthday, and you’re not here, and you’re very much here. I didn’t know exactly how I wanted to spend the day, but I knew I wanted to do some ritual to honor you, and also something to nurture myself, some way of tending to my body – my “flesh and blood holder of humanity” as you wrote so eloquently.
Then a couple of days ago I saw someone announce on Facebook that she had an opening for an ayurvedic massage today, and that seemed perfect – it showed up and presented itself, so I said yes. Next I realized this was the day to take some of your ashes up to Mount Lemmon. I know you loved it there and it was the other place I knew I needed to leave some of your ashes before leaving Tucson.
First thing though, I shared one of my favorite poems of yours on FB, A Lifetime. It feels to me that it says so beautifully what you wanted to do, and what you did in this lifetime. It makes me happy to know you even thought about all of those things, and then that you got to experience it all…it’s quite extraordinary.
After my relaxing massage, I was ready to drive up the mountain. I packed up your bundle of hair, carefully wrapped in one of your scarves, and a shovel. I still had the hair you’d saved from when going through chemo the first time, and I know you’d intended to do some kind of burial ritual, so I wanted to complete that for you as well. I took some flowers, and then filled a small glass bottle with some of your ashes to offer to Mt Lemmon.
I drove up with Tilly beside me, wondering all the way where the hell we were going, and both of us were relieved when I found the right spot to bury your hair. Tilly was happy to walk around under the pine and oak trees, and I easily dug a spot for your hair in the soft ground, covered it with dirt and pine needles and put the flowers on top. It felt like there were bears nearby, maybe watching me, and I am certain they’ll come and sniff around at some point. I could feel their presence in the trees…
I got back in my car and drove further up, looking for a place with the really incredible stacks of rocks. I asked you (and I’d been feeling your presence all day of course), where you wanted me to place the rest of the ashes – did you also love those rocks, or was I just imagining that, since I love them…? I heard you say that you do love them, and, to remember that where the ashes go is about what I want, that it no longer matters to you, you’re not in those ashes. You said that you love that I’m taking the time to do this ritual, but it’s for me, not for who you are now…I could also feel the ways that we were, and are, so merged. That there are times that I can’t tell whether it is I who likes or experiences something, or you.
I trusted that I’d just know, and sure enough, I saw those rocks, with a parking area, and with Tilly leading the way on her leash, I realized there’s a beautiful area to walk down and among the rocks. I’d been there before but somehow never saw that, even though there were many others walking down that way! I meandered down a path, down to where there was just the view of Tucson desert I’d been envisioning, and placed your ashes in the corner of some huge rocks. It was out of the wind, though I know not for long. And slightly off the main path, but there will be plenty of people coming through. Along with the immense natural beauty, there was also graffiti and cigarette butts, and it seemed the right place for some of your ashes to rest.
You were such a combination of the ethereal and very much of this world. When you were little, making up words and dances (like the “hatdeck” when you were 3, and fufia and kufia – were they unseen friends?), seeing spirits, writing poetry and loving the Spice Girls and Destiny’s Child. Now you seem to be truly at peace, in the angelic world of the ancestors, and yet, you come down and play Angel from Montgomery today on your birthday, which I haven’t heard in months! “To believe in this living, is just a hard way to go…” yes, sometimes it is.
So, my sweet girl, though I miss you deeply, and can still hardly believe you’re gone, I am mostly feeling at peace these days. I hear that you want me to be happy, and mostly I am, though I know it’s fine to be sad too, and that crying actually makes me happy at times. I was afraid that this second year, and now your second birthday after you died, would be harder, as some experience that. I’ve found thankfully, that it’s easier with time. I can feel your presence ever closer – almost merging, and yet further away, as you’re more diffuse, more spread out, though still very available when I need to connect.
I know that you know all of this, but I wanted to put it into words, to help me remember this day, and share it with others. You make my life so beautiful, along with your sister, and I’m so grateful!
Notice the orbs and the lights (including purple ones) that showed up in these photos.
I heard an excellent story on NPR the other day, about How Doctors Die, and how even though the majority of people in the U.S. say they want to die at home, surrounded by loved ones, less than half do and most die in the Intensive Care Unit (ICU). In Tucson, where I’ve lived the past 8 years, only 10% die at home. This is partly because when we are very sick, doctors are not likely to tell us the whole story, and we are not willing to ask the important questions – what are the implications of this treatment, what will be the quality of my life, how much time might this treatment add to my life, what are the risks and benefits…?
it reminded me of how difficult it was for the doctors to tell us what was really happening when Elizabeth was in the ICU. She’d had 2 chemo treatments when the lymphoma had spread to her brain, that had not shrunk the tumor. She’d had brain surgery to “debulk” the tumor, which had reduced the size of one tumor, though now we learned there were two in her brain, and probably more in her spine. The surgery had increased the swelling in her brain, necessitating a 2nd surgery to remove part of her skull, and then a stroke left her paralyzed except for her right arm and head. She was intubated, meaning she couldn’t speak, and it was so painful that she tried to pull the breathing tube out if her hands were free.
Elizabeth had told me clearly when going through her first chemo treatments: “Mom, I don’t want to go through years of treatment for cancer only to die of it. I don’t want to live like that.” I looked at her and I said “you won’t”, knowing somehow, that it was true, she would not.
But the doctors were still coming to the ICU each day and telling us she could go to rehab, learn to walk again, she’d need radiation to her brain, a different chemo drug…and I was a believer still, not yet seeing what was in front of me. Powerless, and still hopeful. Around the 6th night she was in the ICU, in the hallway, our favorite nurse said to me “I heard from your friend that you’re starting to talk about hospice.” I was shocked. That was the first time I’d heard the word used in relation to Elizabeth, and we had NOT started to talk about hospice! I was angry at her, felt violated and that she’d crossed some line. Only later was I incredibly grateful for the one brave woman who would dare speak the truth.
The next morning, after some time had allowed this idea to sink in, I asked the oncology team to tell us what was realistic. Did hospice make more sense than planning to continue treatment? Only then, when confronted, did they say yes, hospice was probably the way to go, that the treatments being discussed weren’t likely to be successful. They also passed it off to Elizabeth’s specialist, who had never come to the hospital, saying he’d have to talk to us for the final word. He came that day I think, and sat with me and Greg, and told us that she could try more chemo, or radiation, but it would likely only add days or weeks to her life and he didn’t recommend further treatment. There was no question in my mind that Elizabeth wouldn’t want that, and I didn’t want that for her either. All I wanted then was for her to come home, be out of the ICU, in a beautiful, peaceful place where we could care for her ourselves. Dr Miller also told us that if he let himself, he’d be sobbing along with us, but he couldn’t. That he wanted to be the hero who saved her, and he hated that this wasn’t the way the story was going to end. I know he didn’t want to be there either, having this conversation. No one wants to be the one to tell the parents of a 22 year old young woman that she will die soon.
We still had to fight hard to get her breathing tube removed, as she had a hard time passing their breathing test, though she was breathing on her own. The ICU doctor was afraid they’d have to intubate her again, if she didn’t have the strength to continue on her own. I knew she’d be fine, that she needed to get the breathing tube out, so we could take her home.
Finally, after days of promises and disappointments, they removed the tubes (partially because her dad had a rare, but necessary, blowup at the ICU doctor). She breathed fine, and she could speak again! I then told Elizabeth what Dr Miller had said, that there were no more treatments to try and she could come home. She looked at me and said, “I’m relieved.” I looked in her eyes and said, “I understand.” Elizabeth said, “I’m so glad you understand! I was afraid you wouldn’t.” I told her of course I understood, that she had done everything she could possibly do, and I just wanted her to come home where I could take care of her, and she wanted that too.
She’d had a feeding tube in, and as soon as her hands were free, she tried to pull it out. I explained that she might not be able to eat, as we didn’t know if she could swallow still, and asked if she understood what that meant. The doctors advised against it. She said yes, she wanted it out, and got it most of the way before a nurse could help her. Once that was done, and she wasn’t attached to the machines, we arranged quickly with hospice for a bed to be delivered to our home, and she came home the next day, after 10 days in the ICU.
If that nurse hadn’t spoken up, if we had been compliant and unquestioning, if we didn’t have great family support, a friend who is a doctor…Elizabeth might well have lived her last weeks in the ICU, hooked up to LOUD, painful, machines, with ICU psychosis (an actual condition they acknowledge there) from bright lights 24 hours a day, nurses waking her up every few hours, not able to speak, eat, laugh or just be.
As it happened, she came home and lived two more extraordinary months. The most beautiful, grace-full, love-filled times I’ve known. There was healing and completion in many relationships. Time with her sister. Visits and laughter with family and friends. Singing bowls played. Silence. Books read. Poetry listened to. Soft sheets. Daily massage. Cuddling. Favorite foods. Music of all sorts – from Graceful Passages, Beyonce, Ashanna and Wu-Tang Clan. Fresh roses and altars with sacred objects. Soft light, birds, flowering plants and trees outside the windows. We had time to talk of fear, of death, of love, of acceptance, of regret and loss, and joy and peace…It was so beautiful. And I am so blessed to have shared that time with her, and so immensely grateful it happened the way it did.
If I’m very lucky, I will die as she did (except for the Wu-Tang Clan), surrounded by love, being loved, and being Love.
I recommend filling out 5 Wishes, a living will written in plain language, that gives great options for how you might want to be treated if you can’t speak for yourself. Take some time to think about how you want to live and how you want to die…
When Elizabeth died, I was as well prepared as I could be. She had been at home, my home, in hospice care for almost two months, and I was able to be with her that entire time, letting go of almost everything else for that time. It was heartbreakingly sad and breathtakingly beautiful – the grace and love of Elizabeth’s Presence was immense. She was in a state of egolessness. She no longer cared how she looked, she had no anger, almost no fear or sadness – none by the end, and she was radiant in love.
We knew she was dying, and we had time to prepare ourselves emotionally, and also in practical ways. We are blessed that our close friend Victoria, Elizabeth’s godmother, had recently taken a training in home funerals, and found an amazing woman here who also supports families in taking care of the bodies of their loved ones. I hadn’t known this was an option before, and am so grateful that we didn’t have to send her body off to be tended to by strangers. Kristine Bentz, of Sweetgrass Ceremonies met with us – Elizabeth, me, and our close family, a few times, to let us know what our options were and listen to our hearts.
Elizabeth left her body around 4:30 on a Sunday morning, September 23, 2012. My sister had had the amazing foresight to arrive the night before (though scheduled to arrive several days later), so she was there, and after some time of sitting with Elizabeth, I must have woken her up, and began calling and texting family to let them know. I wanted our family to have that day to be with her body. The next day was for others who wanted to come and visit. Tashe and I did a ritual bathing of her body: cleaning her, touching her skin one last time, anointing her with precious essential oils, then dressing her in a brand new, simple white long dress that was the last piece of clothing Elizabeth had bought herself, not consciously knowing she’d wear it to be cremated in. We then placed beautiful flowing sheer fabrics under, around and over her. We placed her body on a massage table that Kristine had brought us, and used dry ice under her torso to keep her cool, so she could be at home for a couple of days. Finally, we showered her in rose petals…
I almost forgot to include some of the practical details, as I was spared from dealing with the outside world right away. Kristine helped to guide Elizabeth’s father through the process of becoming the “funeral director” which involved filing some paperwork at City Hall, which allowed us to then transport her body ourselves for cremation. We could have had them come to transport her body, but it just felt right to us to do the whole process ourselves.
The funeral parlor (if that is what they’re still called) provided a simple cardboard casket which Kristine brought us, that we asked friends to decorate with messages and artwork, and we placed some of Elizabeth’s belongings in with her, along with many rose petals. The day of the cremation, our family said our last goodbyes to her at home. It was so hard to know that I’d never touch her skin again, very hard to let go…And then we brought her to the crematorium, where we were able to gather and watch as they placed her body inside the crematory. I didn’t think I’d want to do that when she was still alive, but when it came time, it felt better to be there . I knew then that it was not Elizabeth going into that fire, but an empty vessel – as she said, her “flesh and blood holder of humanity” had ceased to exist…
Here is the email I sent after the home funeral, about the cremation and as we began to prepare for a larger, public memorial and celebration of life:
September 26, 2012
Yesterday was very difficult, and beautiful. We gathered with close family and said our last goodbyes to Elizabeth’s body at home, placing her body into the casket, which had been decorated by friends and family, and putting her baby blanket (Silky) and some flowers in with her, to help her make the transition. We transported her body and were able to support each other and witness the box being placed in the crematory. I didn’t know if I’d want or be able to witness this, but I am grateful that I could be present, in the way that seeing a burial might also bring some sense of completion.
We had a lovely open house the day before, with many friends coming by with flowers, love, tears, laughter and stories. It was good to be with others who love Elizabeth. Thank you so much to those of you who were able to be here.
We have confirmed the date and location for Elizabeth’s Celebration of Life/Memorial Service. It will not be a religious ceremony, but one that represents Elizabeth’s diverse and deep spiritual beliefs and an opportunity to gather, celebrate her life, tell stories, share images, music, ritual, and more.
with much love,
(One of Elizabeth’s essays when she was almost done with her first (and we thought only) round of chemo, followed by her musings on titles and structure for the book she planned to write about this experience. God I love her mind and and am so grateful to have these writings…)
March 5, 2012
I feel like I’m only now beginning to walk out of that hospital.
UMC, the day after they diagnosed me. The day after they told me it was cancer.
I was lying in the hospital bed drugged up on morphine right after surgery (my first surgery) and my biopsy. I looked at my mom all swollen with makeup running down my face and said to her (smiling) “If it is cancer its going to be ok.” And she said “Yes.” And then a few hours later they/the surgeon came to tell me it was indeed cancer.
I feel like only now, approaching treatment six, (the last one please god). Chemo round one, round two, round three, round four and round five are done. Whew. I still feel like I’m in the hospital.
The shock: the utter senselessness and cruelty of being beautiful and twenty-two and having cancer is just starting to wear off and the feeling has begun. The feeling of having had cancer. I feel like the shock and senseless and sudden, unprovoked tragedy of it all kept me mentally in the same room it all happened in until now. Now, six months later, my mind is beginning to catch up with the body that gathered her things from that room, left the hospital, went to school and told her family and teachers she had cancer. And got on with it. Took the treatment like a grinding kick in the face and a wet cold punch in the stomach, week after week and sat there quietly and didn’t say anything. And didn’t yell at god or the world or the doctors for A: letting this shit happen and B: letting the treatment, the cure be so goddamned miserable that it destroyed her feeling and her heart and her youth and made her lose her hair and the oh dear god, fucking pic line.
They called the thing they put in me a Pick Line. THEY CALLED IT A PICK LINE, WHAT DOES THAT MEAN TO YOU? They put this tube into my veins and all the way down into my heart and I didn’t want it and I didn’t understand what they were going to do until they already were doing it. They exposed me to way too much radioactivity in the process and sewed it up into my skin like it was no big deal and it hurt, it fucking hurt.
Then there was this big gaping wound and a tube sewn into my body permanently and they forced a long tube into my heart and I didn’t want it and it wasn’t necessary and that was the worst rape I’ve ever experienced. And I never cried. I sat there and was good and quiet and cooperative because I trusted that they knew what they were doing and that they could save my life.
And they did.
But me, the real me who talks and has feelings and still can’t comprehend the fact, that cancer was inside of me, that it even could be. The me that still can’t wrap my head around something so unfair and unpleasant could happen to the blessed child who led a charmed life. She (that me) is still in the hospital. Because the shock, the pure and blessed numbing shock of the news that cancer was in me froze her in time. It froze her so the me who is numb and unfeeling and quiet and detached and removed could take over. Take the chemo, take the treatment, take the tragedy. And hold space for the sadness of others. The me who I generally associate with is just beginning to de-thaw in that hospital room, shake her head and wonder how the fuck did I get here and where do I go now? I’m hoping, I mean I think, she can come join me now.
(Musings on her future writing…)
Why this title is important:
Dr. Miller told me on our last meeting that all this would just be a story I would tell someday (an unpleasant one)
The realization that I want children came with having chemo and being told I couldn’t.
My children will exist because I had cancer not the opposite (strange)
This is my history
Buildings, ie hospitals and doctor offices are going to be the transitional and pivotal star points for this experience. THIS IS THE STRUCTURE FOR YOUR STORY ELIZABETH. IT HAS ALREADY BEEN GIVEN. THIS IS LUCKY. BUILD THE STRUCTURE/SECTIONS/CHAPTERS OF THE BOOK AROUND CHEMO ROUNDS AND HOSPITAL VISIT AND DR. VISITS.
Interview Mom, perhaps others as an example of how narratives vary
talk about trauma theory and troubles with perception
there is a lot here.
Now, should it be a biography or just this story?
Other ideas include:
“High Tales and Desert Winds”
“For My Mother”
Mama: How having cancer brought me back to my mother (The journey of a twenty two year old cancer survivor.)
©Elizabeth Blue, 2012