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.
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,
The Enormity of it All
Yesterday I was having lunch with a dear friend, who is very insightful and intuitive, and has two sons the same ages as my two daughters. She asked me, with concern, for the second time in two weeks, if I was really taking the time and space to allow for the enormity of what has happened. It felt like she was asking if I truly grasped the magnitude of what has happened to me, my daughter’s death a year ago. I didn’t really know how to answer her and I still don’t.
On the one hand, I started to feel like maybe I wasn’t doing this grieving “right”, which I’m sure was far from what she intended. As a mother, it’s such a familiar place to go: if this looks different, or is not what is expected by others, maybe I’m not doing it right. Though much of my mothering has looked “different” (as is how I live my life), and I can see things I could have done better, overall I’ve mothered the best way I know how, following my heart and modeling that for my daughters. Still, it’s easy to be vulnerable as a parent, to question if we’re doing the right thing. Guilt seems to come along with parenthood and the enormous responsibilities we’re honored with in bringing someone into the world.
What I said to my friend is that I feel like my main work now is healing through grieving, and taking the time to heal in whatever ways I can. For me, this means a lot of time alone, listening to music where I often receive messages from Elizabeth, meditating, reading, watching tv on netflix for hours when I need to (all of “Orange is the New Black” during 2 really hard days). It means getting acupuncture and bodywork, talking to good friends, asking family to be around for difficult times, like birthdays and anniversaries, asking for support…It means saying no to many invitations and events, listening deeply to what I really want to do, and leaving when I’m tired and feeling full. It means spending time with my younger daughter, visiting her more often, connecting with her and wanting to be closer with her.
It also means seeing clients, offering the healing work I do, which I love – it helps me to focus on someone else, listening with my full presence, feeling like I’m in service and contributing, and it makes me feel better as I receive the Reiki as it flows through me to my client. Teaching Reiki and facilitating healing circles and retreats also brings me joy, and is another way that I feel Elizabeth’s presence, sitting with me and supporting me, as I ask to be the clearest channel for the teachings to flow through. It also allows me the opportunity to share some of what I learned from Elizabeth about living and dying with grace, which helps bring some greater meaning to this intense journey of transformation.
It means writing, combing through my emails and journals, Elizabeth’s writing and photographs, and sharing these with all of you, listening for the guidance about the timing. Receiving feedback about how this affects you has been an amazing balm for my heart.
But, am I able to absorb the enormity of what has happened, that my adored and beloved and challenging and worrisome and beautiful and smart and difficult and adoring and creative and wise 22 year old first-born daughter has died? No, absolutely not. Do I cry as I write these words? yes. There is no way I could absorb or take in all of this, even one year later it continues to seep in, little by little, day by day, and I do my best to stay present to it, to grief, stay present to Elizabeth’s spirit, stay present to my living daughter, Julianna, stay present to my partner, and mostly, stay present to my heart.
One year ago today, the email below I sent to our close friends and family. Now I share it here, with those of you who have joined me on this transformative, healing journey.
As I prepared for this first anniversary of my daughter Elizabeth’s death, I anticipated it would be challenging. I’ve been learning how to care for myself, my needs, better and better throughout this time, so I asked close family and friends to gather, a very small group who knew and love Elizabeth (and me!) dearly, to come and spend time together. We’ve spent the last couple of days telling stories, looking at photos, doing art projects with Elizabeth’s image, eating, laughing, resting, loving Elizabeth and each other…
We plan to begin the process of releasing her ashes today, spreading some in one of her favorite places in Tucson, with plans to spread more in Berkeley and Hawaii later, two of her other favorite places. I honor her and remember her every day, and oddly, today doesn’t feel as momentous or intense as I expected – I’m wondering now if the emotion will come when everyone leaves and I’m alone again…in this first year, even the hardest days have been fine, as I’ve watched myself experiencing emotion like never before, and always able to be aware that it will pass, that all I need to do is be present and keep trusting my heart. Thank you all for being here with me in this first year. Your presence from near and far, old friends and new, strangers and family, has meant so much. I am so grateful for each of you. Thank you.
Leaving Her Body
September 23, 2012
Elizabeth left her body this morning around 4:30 am. She was peaceful, she knew I was right with her, holding her hand, talking to her and loving her. Something woke me at 4am, and I went to check on her. As I heard her breathing, I knew she was very close, and sat down to be with her. I was thinking it could be a few hours still, so was about to lay down on the couch, when I heard her take one breath, and then realized it was her last one. Her heart continued for a while…
Since yesterday morning her breathing had changed, and Greg (her dad) and I had spent the whole day sitting close, talking to her, telling her how much we love her, and how many people love her and have been affected by her. She was mostly in another world, but every few hours would open her eyes, and was still so clear, with the same love and grace in her gaze.
I am so grateful for the gentle waves of these passages, that each new wave has washed over, giving me time to adjust, to accept, to move into the next stage gracefully, diving in deep and emerging with an ever more cracked open heart, and knowing there’s still more and still more….
As usual, we are doing something a bit unusual – we are keeping Elizabeth’s body at home for a few days, having cleaned, anointed and prepared her body ourselves. We will have a visiting time here, for anyone who is in Tucson, if you want to say goodbye to her body, and connect with me and family. She will be cremated in a couple of days.
We are also planning a large, public memorial service in 2-3 weeks. We will honor and celebrate her life, with music, stories, photos and her poetry. Do not feel you need to come and see her body, it is simply a possibility if you want to say goodbye in this way.
More to come…
love and blessings,
This photo is of her last night, still beautiful and at peace.
Slowing Way Down
Some of the last emails I sent, about my older daughter Elizabeth Blue’s journey towards the ultimate release, from the two weeks before her transition last year.
September 14, 2012
things here are slowing waaay down. No words now, sometimes nodding or shaking her head in response to a question, sometimes that seems too much effort.
Elizabeth still has no pain, is comfortable and has no fear that I feel…there are lots of folks assisting her, both here and in the other realms too. She’s not eating still, and only taking small sips of water. The hospice nurse and our doctor/friend Ann Marie assure us that all is progressing as expected and in the best possible way as far as being peaceful and comfortable. Even throughout the day there are changes, as tonight she had a hard time taking one of the medicines through a straw, so we skipped that one…it’s probably only days left now, but it’s still hard to say. She’s breathing fine, a bit different now, and very inward, very much connected with the other worlds now.
Today 10 of Elizabeth’s friends came to say goodbye, led by Samantha, her closest friend, and it was so beautiful. Full of tears, laughter, stories, reminiscences – they each took a turn holding her hand, kneeling by her bedside and talking to her, kissing her, loving her and telling her goodbye. It was exquisite. They were all so loving, so respectful and sweet with us. Amazing.
Feeling how precious we each are, remembering to tell those you love how you feel, letting the small things go, knowing that each day is precious, each smile, each kiss… for us all, not just Elizabeth.
sending love to you all ~ if you’re receiving this email know that I love you.
September 15, 2012
…a rare and REALLY hard day, watching Elizabeth visibly recede, and I was compelled, like I was a zombie, to watch some of E’s video diaries, of her when she was healthy, and then right when she was finishing chemo, and so hopeful and herself… it was beyond heartbreaking, and I’ve been avoiding going back and revisiting other times, but today i got pulled in. The rest of the day I can barely be present with her. Can’t sit still, am angry, rageful, so sad…
September 19, 2012
Elizabeth hasn’t been eating for 2 weeks now, except for these few times: it was lovely that she ate what seemed to be her last meal from Zelie, some fruit and toast for breakfast. Then 4 days later when Greg arrived, with her favorite dessert, carrot cake, she ate a few bites, and then our dear friend Tita brought by some food, and Greg prepared and fed Elizabeth a whole meal of beans, rice, avocado, quesadilla – all her favorite foods, and it was so beautiful, her being able to receive that from her dad, who has such a deep connection to food and sharing his love for people through food…Then I was writing to him about how lovely that was, and realizing that I couldn’t remember the last food I’d fed her, and felt really sad. A few hours later I offered her food again, (now days since she’d said yes to eating) and she said yes, as though she knew what I’d been thinking. I fed her a perfect peach, and she gave me the gift of being able to feed her one more time…
She’s had almost no water for that long too (just enough to take pills and a few more sips), though the last few days it’s been hard for her to swallow, so she gets no pills, only 2 medications to give now, both liquid. She has occasional ice chips, but often says no to that too.
She started having some pain a couple of days ago, so has had liquid morphine 3 times, but no pain yesterday or today. She still has tremors/shakiness so gets liquid lorazepam a couple of times a day for that. She’s sleeping much of each day, partly from the medication, and partly from having so little energy. She’s wanting to be alone more, doesn’t want any visitors and some days doesn’t want me around, which is different. So it really feels like she’s disconnecting from this world…
Given all this, it’s quite remarkable that when there are no medications in her, she’s still quite clear, with a small smile to greet me in the morning, and this morning gave a thumbs up to my questions of how she slept and how she was feeling…She still rubs her lips together when i put lip balm on, like she always has, just very slowly now. And she doesn’t want me to massage or put lotion on her now – it seems like too much stimulation, and bringing her back into the awareness of the body.
She’s not been talking for quite a while, but can still sometimes nod or shake her head, though even that takes effort now, using a lot of energy. She is still comfortable and seems very peaceful.
So there’s no way to say how much longer she might be here, though without any water it seems it can’t be much more. She is amazingly strong, and so courageous and loving. She did say yes a few days ago when I asked if she feels ready to leave, and if she feels that she’s completed everything she came here to do. That hadn’t been true a few weeks ago, so I was grateful to hear that.
Sending much love to all of you, and connecting at the heart…