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:
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 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 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…
Some Days with Elizabeth
Preface: I am struggling a bit this week, the week leading to the first year anniversary of my daughter Elizabeth’s death. Partly for the obvious reasons – the intensity of this loss resounding in my body and mind and spirit to a degree that at times I can’t remember the simplest things, like where an acupuncture office is that I’ve been to a dozen times; I’m thinking of her constantly, with memories of her at all stages of her life popping up, sometimes making me laugh, often in tears…Today I smiled as I put on sunglasses and thought of Elizabeth’s love of sunglasses and how she always accessorized with them in the most artful way, and then I passed the hospital where she had brain surgery, and remembered the neurosurgeon sitting with me in the waiting area, telling me that the surgery was not successful, he could only remove part of the tumor, and that her brain was swelling to such a degree that he had to stop operating. At first I felt sad, and then I heard myself saying out loud “you were released!” and was able to smile and feel joy for/with her…
The less obvious reason I’ve been struggling: I’ve been posting these past year’s emails from Elizabeth’s and my journey and have had this strong sense that they each needed to be shared before the anniversary date of each update. But I’ve fallen behind, and the last few were posted “late” and I have several more to share before we get to the anniversary itself, in less than a week, on September 23.
It feels like the timing has been in large part due to Elizabeth’s guidance – that in the beginning she was urging me on, also aware of the dates and the timing being important, but as her spirit is moving to other levels, the earthly concepts of time are less important, so I haven’t received guidance to post as urgently in the past two months, and I’ve slowed down. Also, as I share these writings I (re)experience the journey, and it feels like there will be another sense of finality in sharing these emails leading to her transition…So this is all to warn you that this may be an intense week for you as well, if you read these in real-time. I’ll be sharing a month’s worth of transformation in a very condensed time, and you can choose to read them as they come, or you may prefer to take your time and stretch it out a bit. It feels important however, for me to share all the emails by this first anniversary. I will continue to share Elizabeth’s writing, as well as my own.
Though certainly sad on some level, ultimately my hope is that this story is as uplifting and transformative for you as it is for me. May these offerings bring you some comfort and inspiration on your journey!
This image is how I’m seeing her in my mind’s eye right now…
September 4, 2012
today I woke up, as I often do, to the sound of wooden bracelets lightly clinking together. Elizabeth’s bed in the living room is visible from our room, and I have a direct line of sight to her, so I can see her begin to move her right arm and hand, as though she is dancing slowly by herself, and making quiet music with her bracelets. She’s been wearing at least 6 bracelets for weeks, given to her by different people – 2 she was gifted from Tashe, my sister, one was a gift from Ann Marie, our friend and E’s doctor, and the 3 wooden ones are mine, gifted to me from my partner Zelie. Elizabeth has also been given rings from several women who’ve visited – as she plays with and holds their hands, they’ve been inspired/instructed to leave a ring with her. She enjoys playing with them and looking at them all.
I’ve been reading out loud to Elizabeth (one of my favorite things when my daughters were young, and still), and the first book that came to me was The Little Prince. I hadn’t remembered the story, but it was an amazingly perfect book to read at this time, for me very sweet and very reassuring, about love and the process of leaving one’s body. I highly recommend it for all. I’ve also been reading her Winnie the Pooh, which is lovely. We’ve been listening for weeks to the Graceful Passages CD, which she always says yes to when I ask, and also still loving the Coleman Barks readings of Rumi poetry. We have lots of beautiful relaxation types of music, which Elizabeth enjoys too. She likes being read to, and music, but then also wants time for quiet, when she’ll say no to offerings of words or music.
We’ve been enjoying this time of more quiet, more spaciousness, and Elizabeth seems to want to have time alone each day. (It is just me and Zelie here, with Elizabeth’s father Greg coming on the weekends from San Francisco.) It is a bit hard to know her preferences, as she might answer 2 different ways to the same question, depending on how it’s asked, so mostly I’m following my intuition and staying in the flow, reading her as best as I can, and trying to take care of myself too. It’s hard to tell also how much she understands, she has confusion and has little short-term memory, though long-term seems much better. Her expression is almost always neutral, and she only answers yes or no when asked, and if pressed might give a word or two explanation. She is still not stating anything on her own, or asking any questions, which is SO different from her previous expressive self, since she could first speak! She continues to smile so sweetly when we smile at her, and only occasionally expresses pain, her neck sometimes hurts when we turn her, but as soon as she’s positioned well, she’s not in pain.
This morning I was talking to Elizabeth about how hard it’s been for me to believe that she’s dying (throughout this process with cancer, and still, though I’m finally starting to believe it), and she said the same is true for her. (I was talking about a poem of hers I read, that startled me as it seemed to be speaking of dying, but then I realized it was written as she was preparing to leave Tucson for Seattle 2 years ago – it’s “Bird’s Nest”, here.) I asked if she felt ready, and she said no. I asked if she felt she needed to do or say anything to prepare, and she said no. So I said perhaps she’s not ready yet because today’s not the day, and that she would be ready when it is the day, and she responded with holding up crossed fingers, which was both funny and so dear and moving. It does feel that she is getting closer to the end, though it’s still really hard to see how or when that will happen. I’m doing my best to be present and live each day as though it could be her last, and my own as well.
Physically, she is having 3-4 episodes of tremors/increased heart rate each day (due to the tumor in her brain), and sometimes they bother her, sometimes not, mainly related to the severity. This morning was the most intense one – they’re similar to the full body shivering one might have when really cold, and include her torso and her right arm. The medication helps quickly most often, though it makes her sleepy or “numb” she says, so she prefers not to have it when possible. Her head continues to swell, and the tumor in her neck feels like it’s growing, especially as it causes some pain with movement. I think it moves the vertebrae out of place, and some healer-friends have been able to help it shift back several times, giving her relief for many days or weeks.
She has been eating well still, and drinking some. The other day, she was holding a rose, and suddenly I realized she’d taken a bite! Must have smelled really good…though she said it didn’t taste good.
Elizabeth still says she is not afraid, her mind is quiet, and she’s peaceful. I’m really grateful for that, and for each day. Sometimes I go into stories of past or future, and get overwhelmed with grief, but then I can simply move into gratitude for her presence right now, feel the warmth of her skin, look into her eyes, place my hand on her heart and feel that love, and all is well.
love and blessings,
September 11, 2012
There has been a noticeable shift this past week, as Elizabeth has stopped eating and drinking for the most part. She occasionally (every 2-4 days) has said yes to something – Greg brought her favorite dessert of carrot cake this weekend, and she had a few bites, and our friend Tita brought some wonderful beans and rice (another favorite) which she ate as well, but overall she’s stopped eating and drinking. We are not pushing her to eat or drink, simply continuing to offer, as we’ve been told that often the wisdom of the body is to stop, and that it’s a painless and easy way to leave.
For quite a while she’s needed some encouragement to eat – she might say no to being hungry, but then would say yes to a specific food…But something really shifted last Wednesday – she started only drinking enough to swallow her pills and then saying no when I asked if she wants more. And started saying no to everything i offered her to eat. Right after I wrote this, she said yes to food, and ate a peach…so it continues to change, but that was the only thing she’s eaten since a dinner on Saturday. There is this fine line between offering and encouraging or urging. I want her to live as long as possible, but don’t to prolong her life if it means suffering. It feels like the best I can do is listen to her, and when she’s not clear, then follow my intuition, knowing her as well as I do for these 22 years. I hear from others some concern about her not eating and drinking, and it certainly has felt strange as a mother, not to urge her to eat, but I continue to trust her and listen.
This has brought the reality of her leaving that much closer, and I am aware of how precious it is that I can massage her arms and feet, clean her skin, hear her voice (more rarely now), kiss her cheek… I am deeply grateful for the blessing of each day with Elizabeth still here in her body, and at the same time wanting to let her go, which is the most challenging contrast of intentions and emotions I’ve ever experienced. The grief is ever-present, and mostly just below the surface, as I stay with her in this journey, present as I possibly can be.
I’ve just finished reading “The Alchemist” by Paulo Coelho to Elizabeth, which I loved, and she seemed to enjoy, usually saying yes when I would ask if she wanted me to continue. It doesn’t seem she is following the story, but seems to like the sound of my voice. I’ve now started reading pieces from Anne Lamott’s “Tender Mercies”, and though I’d read it years ago, am amazed at how perfect each book has been for the process Elizabeth is in, and perhaps more so for me! She is not wanting music lately, prefers me to be with her, even if we’re not talking, though she still wants some time alone.
I keep delaying sending this, as things change each day, but I know many of you are wanting to know what life is like here, so this feels somehow like a lot is missing, but it’s still enough.