I promised the link to my interview on NPR, and here it is: Voices for the Cure on Arizona Public Media. Mark McLemore was a wonderful, thoughtful and sensitive interviewer, and I’m so honored to have the opportunity to share more of Elizabeth’s and my journey with more people.
Dear Elizabeth,
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!
love,Mom
Notice the orbs and the lights (including purple ones) that showed up in these photos.
A quick note: I was interviewed for our local NPR station about losing Elizabeth, and our journey with cancer and death. It airs today, January 10 at 6pm, Arizona time, and tomorrow, January 11 at 5pm. If you’re in Tucson, Arizona, you can listen live at 89.1, or stream it here wherever you are: https://radio.azpm.org/kuaz/
Elizabeth would have been turning 24 this Sunday – it feels like an appropriate honoring of her to be able to share this now…
If you can’t tune in live, it will be posted on their website, and I”ll share that later.
I had a wonderful end of 2013, with my 50th birthday spent with my closest family and a good friend, with delicious food, the people I love the most (most of them anyway), and even time on the beach in California! It was a perfect day. Except, of course, that Elizabeth wasn’t there, though I certainly felt her presence.
For months I’d been wondering how I could gather my family and friends to celebrate my 50th birthday, which is on Christmas eve, but it felt too overwhelming and stressful to orchestrate. Somehow, (and I believe Elizabeth helped out here), the only time we could all meet up for our annual family vacation was my birthday week! We’ve never done our trip Christmas week, but it worked perfectly, and I didn’t need to do anything other than say yes and show up. Family flew in from Hawaii, the East Coast, and drove from Tucson and northern California, and we had a beautiful week together in Santa Barbara…
When we arrived at the restaurant for my birthday dinner, the hostess showed us to our table, strewn with rose petals, and said, “Someone named Elizabeth was here earlier and left the roses for you.” We all stared at her, asking her to repeat herself, until we realized it must have been my friend Victoria, who was staying nearby. She had brought the roses and said to tell us they were a gift from Elizabeth, but the way that was communicated was a bit startling to us all!
My year has started off wonderfully too. Since coming home, I’ve had the pleasure of my partner Zelie being home for a few days, and now my daughter Julianna being here with me for her winter break, likely our last time together in Tucson. I have put my house for sale and am preparing for my move to Hawaii, where I’ll be based on Maui and continue to spend part of my time on Molokai, offering retreats with my partner. I move at the end of February, and it’s been a very busy few months of clearing, packing, and organizing!
Julianna has been amazing, helping me with not only the practical aspects of preparing for a huge yard sale (I’m not taking much with me to Maui), but also the more emotionally charged ones of going through Elizabeth’s boxes of belongings. Yesterday we sorted through 3 boxes of her journals, jewelry, photographs and clothing, and it somehow felt relatively easy, making decisions about what to save (journals, of course) and what to let go of. It was wonderful to have Julianna with me while I made decisions, taking what she wants to have, knowing that we are both clear on what feels right to save, and what to let go.
Today I still needed to get through Elizabeth’s file folders, and that was unexpectedly much harder. Perhaps it was reading many of her papers from high school, or seeing her handwritten notes and to-do lists. Perhaps it was tossing piles of teacher’s evaluations of her, and feeling like none of that mattered, as she’s not here anymore. What difference does it make what her 9th grade English teacher thought of her work? Perhaps it was seeing again her funny labels on her folders that I threw away, but couldn’t help photographing first, as they are so endearing:
It feels good to be letting go of so many things, feeling like the things are not very important anymore, and traveling lighter feels right. The move to Hawaii also feels very right, after years of feeling it coming, knowing it is now time, and that moving away from this home and this town where Elizabeth was last, mostly feels healing. It feels expansive and like my work and my life can open in new ways, hopefully to be in service in larger ways, and in a place that will be healing for me as well.
And so I will continue to write, write; talk, talk. Edit away. And pack, and store, and recycle, and sell, and cry, and laugh, and love.
Last, I want to express so much gratitude to all of you who’ve found this blog and surrounded me with so much support, friendship, and love. 55,000 of you visited last year, from 136 countries! That may be small in the blogging world, but it’s huge to me, and I can’t say how much I value each of you who read this blog, and who share yourselves with me.
Click on any image to see them larger.
These are just a few of the photos taken by the amazing artist Jade Beall, of the Beautiful Bodies Project, in April of 2012, when Elizabeth was in remission from cancer. She had finished 6 chemo treatments, and we were celebrating that she had no sign of cancer in her body. I was delighted that she’d agreed to be photographed, wanting to document this time, this transition time in her life, showing all aspects of herself, with hair and without, with clothes and completely naked. We did not know that just 2 months later she’d find that the cancer had recurred, spreading to her brain, and that she would die 3 months after that, on September 23, 2012.
I am incredibly grateful that we have these beautiful, revealing images of Elizabeth Blue – a beauty inside and out.
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…
Elizabeth loved clothes. From before she could speak (which was early!), she was in charge of what she wore, and as soon as she could dress herself, she did, always with several changes of outfits, sometimes before we even left the house in the morning. This theme carried throughout her life, with her love of spending hours in thrift shops and used clothing stores, searching out the perfect pieces, always combining them in ways unique to her. She would often select items that seemed way out of style, or really unattractive (to my eye), but then she’d put an outfit together that was truly a beautiful form of art.
It was one of her greatest artistic expressions, and one she had innately, but was also enhanced by her adoration of her godmother Victoria, who has a similar gift. I think Elizabeth’s also came through her genes, but skipped a generation or two, as I have never cared about clothes in this way, though my grandmothers did, and Julianna, my younger daughter, has an equally unique and artistic style, though quite different from Elizabeth’s (she used to dress in British school boys’ uniforms in public middle school in California…but that’s another story!)
Last night I took a bath, and searched my closet for a bathrobe to put on after. I found this white, silk, kimono-style robe that was Elizabeth’s. I put it on and realized that it fits perfectly, is incredibly comfortable, flattering, and the robe I’ve always wanted…and I remember well the day she bought it.
In June of 2012, Elizabeth’s cancer had recurred, in her brain, and she was receiving high doses of chemo in the attempt to cross the blood/brain barrier, that is there to protect our brain from toxins that can harm it. She was on several medications to prevent seizure and reduce swelling in her brain, and we had some idea of how serious this all was. I can see now, in hindsight, that she understood, or knew, that she was most likely going to die. I did not. I was steadfast in my optimism, only allowing in what I needed to get her the best possible care she could have. With the recurrence and spread of cancer, in addition to the allopathic treatment, Elizabeth was open to adding all complementary methods as well. She was seeing an oncology naturopath, who prescribed many supplements to be taken throughout the day, on a strict schedule, to enhance the chemo regimen. She was scheduled to do a hypnotherapy session, and had started physical therapy to maintain strength, as she couldn’t do much yoga, being weak and dizzy. As it turned out, the cancer was growing too quickly, and nothing could change what was her ultimate path.
So our dear friend Kathleen, who is an amazing healer and has an advanced understanding of the healing power of raw food, drove from Colorado to visit us for a couple days, and share some of her knowledge with us. Elizabeth adores Kathleen, was thrilled that she’d come out to help, and was aware what a loving and generous gift it was for Kathleen to drive 2 days each way to visit! The first day she was here, we made a big list of food we needed, and headed over to the food coop to shop.
Across the street from the coop is one of Elizabeth’s favorite vintage clothing shops. Well, there was something she HAD to look for that day. Kathleen and I were at first agreeable, and wandered around the store for a bit, but didn’t see anything we needed, though I think we played with hats for a while…After half an hour or so, we told Elizabeth we’d go to the cafe next door and get some iced coffee, but she needed to finish up. It was over 100 degrees that day, and we were tired. After a while, I went back to check. She was still trying clothes on, and I was really annoyed. I felt she wasn’t being respectful of Kathleen’s time, that we only had a couple of days to learn as much as we could, and she was “wasting time” by spending so much of our afternoon trying on clothes…This was always a favorite activity of hers, and I didn’t have much patience for it, though I now wish that I could have found a way to spend more time with her doing the things she loved.
Finally, she made her purchase – a white, silk robe, that she felt she really needed. We went across the street, did our food shopping, and went home, all three of us tired from the heat and the outing. Kathleen continued to teach us and share her wisdom, and it was an amazing few days we spent together. Elizabeth diligently ate raw foods even while in the hospital, up to the time she came home to hospice care, when she went back to eating cooked foods, all her favorites…
She only wore the white robe a few times. When I put it on last night, I felt her presence, and felt that she’d perhaps picked it out for me, as well as herself. I’d almost given it away, but something had said to keep it, even though I thought it wasn’t my style or size, and I remembered so clearly the day she bought it. As I was wearing it last night, it felt like it was custom made for me, the size, shape, texture, color…I love it. I just heard “it’s an early birthday present” – my 50th birthday is in a month, and Elizabeth always bought or made me very thoughtful presents, and wrote me beautiful cards. I will miss her especially on my birthday.
When I hung the robe up this morning, and was thinking that perhaps she’d had me somewhere in her mind when she chose it (selfishly, I know), the tag caught my eye. “Esme” is the name, and I caught my breath – that is a name Elizabeth considered for herself for years, and used for her email address, though she spelled it Ezme, with wonderful layered meanings. It felt like another sign from her, and it’s lovely to feel her close as I wear this robe, for many years to come. Thank you Elizabeth, for this gift.
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
Dear Ones,
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,
Lucia
Luminous Blue 