As we move closer to the one year anniversary of my daughter Elizabeth’s death, on September 23, she is very present with me, giving me many messages and signs that she is close. I will share more of that in another post. For now – I am getting the message that it is time to share this video again. This is a slideshow of Elizabeth’s life, from beginning to end, with many of the people, animals, events and passages in her life.
The professional photo shoot done during the last year of her life was done by Jade Beall, who recently dedicated a blog post with photos and story of that photo shoot, and I will be sharing many more of those extraordinary photos soon. Here are 2 favorites.
This slideshow was created with love and is shared with love. (And you might want to have some tissues handy…)
These writings are from about a month before my daughter Elizabeth Blue died. She was at home and needing 24 hour care, having had a stroke following unsuccessful surgery and chemo to remove the cancer that had spread to her brain. She was in a peaceful state of grace that is hard to capture in words and images.
August 24, 2012: a group email
dear ones,
again, I’m not sure how long it’s been since writing, but when I start to receive texts and emails asking what is going on, I can feel it’s time to share more outside of this small and yet expansive, world I’m living in.
Day to day, it’s hard to see change, much like when you have a newborn baby, and can’t see how quickly she is changing because you’re so immersed. But when I look at photos of Elizabeth now, I can see that her head is more swollen, and I know she now has a bump on the back of her neck that is very likely another tumor, or one that has spread, so there is evidence that the cancer is growing. She has also had several episodes of muscle tremors, with her heart racing, which is uncomfortable for her, but responds to muscle-relaxants. It is likely a sign of neurological symptoms from the tumor, and may indicate other symptoms to come.
Some days she seems even less able to track things in a linear way, but this seems so natural now it’s hard to notice the change. Today also for the first time she said her mind was busy when I asked (rather than quiet), using her hands to show me “chatty”. She often uses her hands to communicate, though she is able to speak. She has said she is “doing work”, working through some things internally on this journey that need to be completed. She is aware of the support she has, from all of us, in addition to the unseen forces.
There have been many visitors, (including the nurse and nurse’s aide 2 times a week), which she seems to enjoy though gets tired quickly. She says yes to everyone who has asked to visit, though I limit the schedule so she (and I) aren’t too tired. Often I am happiest when I have time alone to just sit with Elizabeth, like the other morning when I played Coleman Barks’ album, his readings of Rumi poetry, and we listened together, which was a beautiful way to start our day. The physical tasks of feeding, changing, turning her, giving medicines at the right time, etc, often take up most of the time in the day, but I try to find times still when we can simply sit and be…
We have fewer people here, which is easier in some ways, harder in others. Tashe and Terri (my sister and sister-in-law) were here which was immensely helpful. My mom is leaving this weekend, and it’s been wonderful to have her. She’s been patient and generous with me, even when I’m not at my best, not as patient and loving as I’d like to be. Julianna (my younger daughter, 19 years old) heads back to NYU on Tuesday, and I’m going to miss her terribly. She’s been home all summer, the longest time we’ve had together in many years and I’ve enjoyed every day with her. During this difficult time she’s been just amazing – so loving, supportive, thoughtful, helpful, generous and just beautiful to be with. She is ready to go back to school, and though I can’t imagine how I could function in that world now, I can see that it will be a good place for her right now.
So next week it will be just Zelie (my partner), Elizabeth and me here, and we’ll see how that goes. Zelie is wonderful – patient and loving, and really sweet to see the two of them together. Greg (Elizabeth’s father) continues to come every week from Friday to Sunday, and brings Elizabeth treats from Berkeley and good company as he sits with her for hours each day, and he just cooked us all a wonderful dinner. We may call on friends and hospice volunteers more, taking up offers of meals and perhaps just to come and sit with Elizabeth so we can do errands or have some time for emails and maybe even some breaks…
It doesn’t feel like Elizabeth’s ready to leave us yet, and yet we are aware it could happen at any time. Most days it simply feels like I’m caring for her while she’s very ill, disabled, but really hard to see/believe that she’s dying. The hardest day for me so far was going to Elizabeth’s apartment for the first time without her, and seeing all her belongings: her artwork, clothes, lists of things to do, all the outward ordinary objects that connect me to her in her previous self, all the ways we spent time together, the gifts I bought her, the stories of getting these shoes in Seattle, or that friend who made her that drawing, etc…it was just heartbreaking. Then a couple of days later I went back, and already it had shifted, and was much easier…so time continues to help, and continuing to be present to whatever degree possible.
I’ve been in the process of writing this in bits for days, as that’s how life is right now, and this feels broken up and unsatisfying, as some of the days do. There’s an unsettled quality right now, and also an immense amount of love and gratitude in each day. Grateful for all that has been and all that is.
love and gratitude to you all,
Lucia
We managed to take Elizabeth outside in a reclining wheelchair to the backyard last week, which she’d really wanted to do:
Elizabeth Blue on her expedition outside, 8/2012Elizabeth with Julianna and Greg, 8/2012Elizabeth with Grandma, 8/2012
August 28, 2012 – from Lucia’s Journal
Tonight I had the thought to tell Elizabeth that I would willingly trade places with her, sacrifice my life for hers, and then I realized how arrogant that was, the idea that my life was better then hers, my situation, my potential future, better than hers. I saw in that instant that her life and situation, however long, has nothing wrong with it, nothing that she needs to “trade” for. I shared this all with her, and she agreed, nodding. I finished by saying that I wanted her to know that if I could, and she wanted, I would willingly give my life for hers.
Assumptions: things that are accepted as true or as certain to happen, without proof
There are many things we live with as givens, as assumptions that we don’t even know we believe. Even when we do our best to live with great awareness and consciousness, they still creep in, so universally accepted in our world, that we don’t see the possibility that they could not be true.
Elizabeth Blue – at the Grand Canyon, January, 2012
As I was sitting with my older daughter Elizabeth last year while she was moving towards her death, I had time to reflect on many assumptions I’d made about her and her life: That she’d live a long and fulfilling life. That wherever we both lived, we’d continue to talk, communicate, and see each other. That no matter our differences and hurt feelings, we’d continue to dive deep into our inner worlds and find places in common and communicate about what we wished for, apologize for any ways we’d hurt each other, and let each other know how much we loved and appreciated each other.
In some ways the assumption about her, or any of us living a long life was foolish, having grown up close to my grandparents, who’d watched both their sons die young, my uncle and my father at ages 21 and 30; I had watched several friends die of cancer who had young children they’d planned on raising; I’d worked with people dying of cancer, including children and young adults, years before Elizabeth had been diagnosed with cancer…so I knew this was a possibility in life. However, I believed as so many do: not to me, not to my family, not possible, please.
August 19, 2012 from Lucia Maya’s journal – Assumptions
The things i didn’t even realize i was counting on. Assuming without knowing: that Elizabeth would grow up and outlive me. That she’d have a career, whether as an English professor, as she talked about, or a body piercer, another idea that seemed more a youthful way to make some extra money, I didn’t know. Perhaps owning a vintage clothing store, or as a successful writer…
I assumed and hoped: that she would have long term relationship(s) with someone that she would love and find happiness with, that I might like, hopefully marry one of them someday, a wonderful man/woman who loves and adores her, and makes her happy, inspires her creativity, and that they would have children together. That I would have grandchildren to come visit, wherever she lived.
That we would have lots of time to talk and get along, to have intimate conversations and have times where she couldn’t stand me again. Where she desperately needed me, and times when she was so in love and busy she couldn’t answer my calls or texts.
Times where I’d worry if she was happy, had anxiety, was fulfilled, was never going to fall in love; have high enough self-esteem; recover from whatever emotional damage I’ve inflicted, or ways life traumas have wounded her…
It is this loss of the innocence, the loss of all these beliefs and assumptions and my stories of the imagined future that cause me the greatest grief. It is when I go back in my mind to see a “movie” of Elizabeth as she was, and that picture of her in the past holds all these assumptions and beliefs of what was still to come, and it is heartbreaking. All the stories that will never come true. The conversations never had, the joy and the anger and the fear and the wedding(s) and the grandchildren and the growing old, and the love, always the love…
So I take and am grateful for what I still have – the love, the conversations I can still have with her now in spirit, when I listen closely I hear her. I know she is always with me, and the present and the future will look different than what I assumed, and I do the best I can to accept and even love this life, as it is.
Early August, 2012: Emails and other writings from Lucia Maya
These are emails I wrote from the second week after my 22 year old daughter, Elizabeth Blue, came home from the hospital under hospice care last summer. She arrived at my house and we quickly settled into a routine of caring for her physically in this new state. Emotionally adjusting to this unexpected new paradigm, appearing to be the end of her life, was a bit more of a challenge. In a very short time, Elizabeth had moved into the most beautiful state of love, acceptance, peace and grace – true enlightenment, that I have ever witnessed. This guided the rest of us and we followed her lead…
August 5, 2012: a group email Hi all,
I’ve not been writing because there’s not much to say – it’s very quiet here. But I can understand you all might want a window in to what the days are like…
Elizabeth is sleeping much of the time, on a bed set up in the living room, with flowers all around, a lovely altar that she can see at the foot of the bed, essential oils diffusing much of the time. She has been massaged several times a day by my sister Tashe, who left yesterday, and is hugely missed by me and the rest of the family! Elizabeth doesn’t seem to notice when people come or go, and has no sense of time it appears… I am doing some massage as well, keeping her limbs moving and loving her with touch. Elizabeth is not able to use much of her body, mainly just her right hand, and she can speak and smile, though still mostly a whisper, from having had the breathing tube in so long, but last night she did start to speak a bit louder and it was lovely to hear her voice! When I told her that, she said, “I bet.” Hard to tell when she’s being funny, but it seems she doesn’t get jokes now, or perhaps I’m not getting hers – yesterday i kissed her and said “i want to bite you”, meaning she was so yummy i wanted to eat her up, and she replied, with no expression, “please don’t”. When I asked her later if she preferred being shifted to her back or her other side, she asked, “what other side?” It seems she has little sense of the body at this point. She’s said no every time we’ve asked her if she is having any pain, but this morning said yes, and when i asked her where, and named several possibilities, she couldn’t say where. I gave her some pain meds and she’s been sleeping mostly since then.
She eats usually one small meal each day, declining most food that’s offered throughout the day, and drinking some. Usually she has some fruit, and something like a tamale, last night she said yes to a veggie burger with guacamole, but then only ate a couple of bites. It seems she’s eating less each day, but then she surprises us and eats a lot one day. She’s taking almost no medication, other than continuing on the anti-seizure med, now an antibiotic because she got a UTI, and something to help her sleep at night, though she may not need that still now that she’s off the steroids which were keeping her awake.
Her friend Ava came down from Seattle for a visit this week, and today her oldest friend Brieana is here from California, and she has seemed to enjoy them, mostly listening but talking with them some too. My dad and my step mother, Alexandra, my brother David, have all been here this week too, and her dad Greg is here again for a long weekend, and plans to continue that schedule for now. My mom is staying and it’s really wonderful to have her presence and her help. Zelie (my partner who’d been away since Elizabeth’s recurrence of lymphoma, mid-June) came home on Wednesday and it’s been wonderful to have her home. Victoria (my close friend and Elizabeth’s godmother) arrives tomorrow for most of the week, and that will be wonderful I’m sure too.
Elizabeth has said a couple of times this week that her mind is quiet, and yesterday when I asked what is going on inside, she said “nothing, and a lot”. She had one night with a lot of anxiety, and she and I talked more about death, fear of the unknown, her fear of disappointing people (especially her grandmother, who she’s been quite close to), and we’ve each been making it as clear as we can how much we love her and will miss her, and that we will be ok when she goes, that we want her to leave whenever she’s ready, and we will be fine with her timing, and that she’s not disappointing us, that we are incredibly proud of her and everything about her. Then Zelie, Tashe and I all did Reiki on her for quite a while, and she’s seemed more at peace since then.
It’s a very strange and interesting time, as I am deeply sad, and in acceptance, and possibly some denial too, as it feels like the Elizabeth I’ve always known is already gone, and I love this one in front of me as well, but I’m grieving and loving her at the same time…and numb some of the time too, as I seem to run out of emotion after some time.
Thank you all for your continued prayers, love and support.
love,
Lucia
August 8, 2012 Some friends who do energy healing and can “see” into the body as well as angels and guides came to do some work on Elizabeth. This was my reply about how she was doing after the visit:
She is good, very quiet, more inward, wanting time alone, which is rare for her. She seems more at peace, and it feels like what transpired yesterday, first felt like a move towards “recovery”, and now feels more like a move towards some resolution, clearing, and bringing all of us gathered into more peace and center…we’ll see what each day brings.
love, Lucia
Our friend’s experience of working with Elizabeth:
“the energy was incredible! I grounded while there but it was a surprise to see Elizabeth’s guardian angel actually materialize. At that exact time, she smiled really big and seemed to relax…I saw you and Elizabeth connect on a level not often seen, it was so deep.
Elizabeth felt at peace as soon as the guardian angel descended and spread her wings. That’s about the same time M. told her she could change her mind if she wanted. I think her guardian angel was telling her the same, but there seemed to be a profound energy change in the room.”
August 9, 2012: to a friend:
Elizabeth’s cat, Blue, can come in and visit her from the guest house where he’s living now with my mom, who loves him. Interestingly (and very surprisingly), Elizabeth’s not very interested in him and none of the animals are showing interest in her, which is really different than in the past. She’s always been an animal person, more connected with them than with most humans, and they always love her…so clearly there’s been a big shift (in her energy and her identity), partly I think they don’t recognize her, even her own beloved Blue.
August 12, 2012: about a home funeral
We had learned about the possibility of a home funeral: being able to take care of Elizabeth’s body at home, with the guidance and support of a wonderful woman in Tucson, Kristine Bentz of Sweetgrass Ceremonies. She came to listen and share information with our whole family who gathered in circle with her. It was incredibly helpful to have her support during this time and later. This was Kristine’s email after the meeting:
“I left awash in goosebumps today. Despite the heat. Thank you for being so courageous and sitting in a circle to open the conversation we shared. I do not pretend to know what you feel in your journey with Elizabeth. I can only offer this: I felt love overflowing your home and her being. She is surrounded in beauty. She is magnificent. Your caregiving circle is so strong…I am willing to walk beside you on this continuum, support you and be a resource whenever the need arises.”
August 10, 2012: from Lucia’s journal We are being given permission to be intimate with Elizabeth and with one another in a way that’s not ordinarily possible.
Elizabeth In Enlightenment – she is being completely present, no thought or cares of the past or the future. No ego, no artifice, no irritation or anger, only calm presence, with loving and compassionate smiles.
August 12, 2012: a group email
Dear Ones,
the days flow seamlessly into one another, and time no longer seems to exist in this world we are inhabiting. I have no idea when I last wrote, or what was said, so I’ll try to give a sense of what is true now.
Elizabeth continues to be in a beautiful state, gracing us with her sweet presence. She speaks little still, and makes her needs known, mainly by all of us guessing and intuiting, then asking her for confirmation. She expresses no desires, no complaints, no irritation or boredom, though she will have an opinion if we offer her choices of what to eat, or which shirt to wear, etc. She seems content, and smiles are her main expression. She is loving and patient with us all, accepting of our desire to please her. Gives us long thumbs-up when we’ve put her in a new position and ask if she’s comfortable, with a smile:
Elizabeth giving us a thumbs-up
These last few days we’ve had Greg, her dad, here, and Victoria, her godmother, and there’s been a really sweet bedtime ritual of hands-on pouring love into her, with all of us gathered. Zelie (my partner) has sung her a lullaby and she has fallen asleep this way some nights. It feels like such a gift she is offering us all, this time together, and with her. Here we are finishing up (missing Julianna (her sister, my younger daughter), who’s been a part of all of this too):
Lovely family bedtime ritual
Elizabeth’s appetite has increased, so she’s eating well, several small (sometimes large) meals a day, (I’m sure helped by the wonderful food provided by Victoria, and last night Greg made Elizabeth’s favorite of bruschetta!), drinking plenty of water, tea and juice, and still appears to be losing weight. We’ve all been eating dinner together sitting with her, as she says yes when we ask if she wants that now. She has been on minimal medication, a couple days this week she had some pain, but mainly in her hip, which has gotten tweaked from positioning perhaps, though we’re being careful as can be as we turn her and try to find the most comfortable positions. Just ibuprofen and tylenol is all she’s needed, and several of us are doing energy work on her as well. This just changed today, as she’s been having pain in her neck (where we believe the cancer had spread), a wound on her leg that’s slow to heal, and her hip, so she’s needed more pain meds today than in the last week combined. Every day is different, and we all try to stay in the flow, in the moment.
Some of us sense that while Elizabeth is still here, she is also connecting with other worlds, other realities, weaving a web of love that will help to carry her into this transition and beyond, that will help us stay connected with her in spirit once she leaves her body. Here is a beautiful image, with a lovely golden heart on her brow, that was visible in all the photos, though not to my eyes. She has rose petals on her arm, and a beautiful crystal on her heart. She’s been holding that crystal most of the time since it was gifted to her:
Elizabeth Blue with rose petals and a golden heart
She is very sensitive (as always, but intensified) to those around her, the moods, energies, etc. This morning I’ve had the luxury of sitting alone with her, and put on Constance Demby’s Sacred Space music (Elizabeth most often says yes to music – Ashanna’s crystal bowls, Beyonce, Mozart, mostly soft relaxing music, though sometimes rap) and went into heart meditation, and she joined in and fell deep asleep, even now the doorbell just rang and didn’t disturb her…She is mostly accepting of whoever and whatever is being presented, and seems to adapt her process accordingly.
I’d been giving her some homeopathic remedies that had been recommended, and she took them willingly, but yesterday I had the sense that she really didn’t want or need to be taking them, and when I asked her, she said no, she didn’t want to take them. I sensed, and asked, “you want to keep it simple?” and she nodded. That feels like the main message I’m getting – keep it simple, tuning in, being present with her when we’re with her, accepting what she has to offer, to the best of our abilities…
Yesterday was the deepest peace I’ve felt in a while, even on my walk with our dog Tilly in the neighborhood, which is when my sadness usually emerges – seeing the college students moving back in, preparing to start the semester, and listening to my internal story of how Elizabeth won’t be among them. But yesterday there was an ability to stay present with the peace I feel when I’m with her, in each moment, and carry that with me out into the outside world. I am grateful for that, and for each minute of each day that I am able to spend here with her.
sending much love and the hope that you can all feel Elizabeth’s love and presence from here,
A short and heart-wrenching piece written by my daughter Elizabeth Blue, while she was in the middle of her first round of chemo treatment for non-Hodgkins lymphoma, which ended her life on September 23, 2012.This was written 4 days after her 22nd birthday.
Motherhood
Monday January 16, 2012 7:57 PM
I just burst into tears. I was looking at a friends new baby and wedding pictures and I was getting teary eyed at them. I got up, closed the computer and went to use the bathroom. When I came out I thought about my daughter and the people I would want there during my labor and her birth. I thought about Victoria coaching me through labor and pain and telling me about her experiences and I burst into tears. Truly uncontrollable sobs. I’m still crying. I thought about how I might never have that and I could barely stand it. Something just months ago I thought I would never want, I want. I want so badly, so much, to be a mom. I want so much to meet my daughter Chloe Cricket Benjamin Blue. I imagined her having the same birthday as me or the day before and how it would be the best birthday present god or life or anyone could give. I want to meet her. My daughter: Chloe Cricket Benjamin Blue. I want so much to know her – the thought of not knowing her brings tears to my eyes and I can’t stop crying and sobbing and wailing knowing that it is possible it may never happen. I miss her and I didn’t even meet her yet. I tried to reason the tears away wondering if I’m hormonal or had too much coffee or am hungry. But none of these things were true and even if they were it doesn’t matter. I just want to meet her I just want to know her. I want to be born a mom, anew and born with her into a new life: the clan of motherhood.
This week it has been one year since my daughter Elizabeth had 2 brain surgeries. The first one, July 19, 2012, we hoped would remove the cancer from her brain, and the second on July 20 was done to save her life (for a time, anyway), as her brain had started to swell, and the neurosurgeon needed to remove part of her skull to allow space for the swelling. I anticipated that with these anniversaries, I would be brought back into the memories of that time. That I would relive all the sadness that came with learning that the surgery was not successful, and then that there was no more treatment and Elizabeth was not going to survive very long, most likely a couple of months.
Yet grief is rarely predictable, and I’m feeling peaceful, relaxed, perhaps a bit disengaged, but also very present. Even when I try to go back into the story, it is not enough to move me into grief. I was worried that I was becoming numb, but I am full of feelings, one after another, from sadness to gratitude, to joy.
I am not numb – when I talk to a new friend whose son also died, I am moved to tears when she tells me how seeing photographs of Elizabeth moves her so, and that she wishes she had lived so she could meet this amazing young woman. I was immediately aware, however, that she would not even know who Elizabeth was if she were still alive. Her writing, her wisdom, her beauty was not available to so many while she was alive. And so I find myself grateful, for Elizabeth’s life, and even in some bizarre way for her death – that if this was her time to go, that she did it with such grace, and that her writing and beauty is reaching so many.
Here are some of my writings from one year ago:
July 23, 2012 (still in ICU at UMC hospital)
I stayed up with her all night, the anniversary of my father’s death. Sitting vigil, not wanting her to leave to be with him on this potent day. Praying all night to my ancestors, her guides, all the forces, asking them to have mercy. She stayed that night.
July 29, 2012 (now at home with hospice)
Yesterday was a day of almost blissful peace, radiant grace and devotion. Today, I was kept awake after reading an email depicting the possibilities of a painful and frightened death for Elizabeth, and I couldn’t sleep, wanting to find someone to blame – the surgeon, (he shouldn’t have given us false hope, when he must have known he couldn’t remove the whole tumor), my partner Zelie, (for not being here, not wanting to be here so desperately she’d just jump on a plane without asking). But knowing that there is no one to blame, each is playing her/his part just perfectly, divinely orchestrated, and I’m truly grateful that Zelie is clear about where she needs to be, and she can’t help me here right now.
So today I’m more in that shattered grieving place, almost unbearably sad, but not unbearable at all, no story with the sadness, and even with the grief and the loss, aware it’s just another feeling and I can actually enjoy the experience. My worst fears are being realized (some of them at least) and I am in such a state of grace, being with Elizabeth in her radiance and her presence, that I can be at deeper peace than in my daily life. This slowing down time is just what i need. If i go into stories of who she might have been, grandchildren never conceived and born, no wedding and falling in love, no more writing and being seen as an amazingly gifted writer… and on and on, then I can be devastated, though not right now as I write this. Right now I see the story may all be about me anyway. Me having new “babies” being birthed, me falling in love and getting married, me writing and getting seen as my gifts, and hers, get shared with the world.
Elizabeth at home in hospice with her cat BlueElizabeth Blue and Lucia Maya, at home in hospice
Victoria (my long-time friend and Elizabeth’s godmother) just called us soul mates, me and Elizabeth. E has written about us sharing the same heart, and I am certainly in the same field she is right now. I can’t think about much other than the moment I’m in right now. Elizabeth told me, when i was telling her of her friend Cailin’s planned visit an hour later yesterday, that I don’t need to tell her those kinds of things, meaning anything beyond what is literally right in front of her.
I asked her a few serious questions yesterday: if her heart stopped or she stopped breathing, does she want us to call 911 and have her resuscitated – she said no; and if she’s alive but can no longer make her wishes known, who does she want to make decisions for her – she pointed to and named me; and finally I could tell she was tired, so I asked if there was anything we could be doing to make her more comfortable, and she said “stop asking me questions”. I loved it. And stopped.
Today when she asked me how I was, as she does after I ask her, I said sad. She said she knew, and asked why. I told her I was going to miss her, and she asked when? I said I thought she was in the process of dying and I would miss her when she was gone. She asked what i thought death is, and I said when we leave our body. And that i’ve heard from many people who’ve died and come back that it’s a beautiful experience, more beautiful than anything in life, anything they experienced on earth. She nodded. I said I wasn’t sad about what she’d experience, I was sad about my experience of missing her, but I know her spirit will always be here. She nodded. I told her I had thought she’d always be here, and that was why I was sad.
Elizabeth’s been saying since her rediagnosis that she is going through a rebirth, and she went all the way back to the pre-birth state in the hospital: unable to speak, or even make sounds, unable to open her eyes, then being born: with the (breathing) tube pulled out, able to speak and breathe on her own, but still totally depending on others with a feeding tube and IV fluids, then removing those, and starting to swallow, to drink and eat, to speak again. And now, at home, still dependent, and yet completely reborn, with divine wisdom and no mind. Quiet Mind she calls it. She seems to be completely comfortable and at peace.
It occurred to me, that for her to get to this state of peace, she was willing to go through cancer in her brain, 2 brain surgeries, a stroke, and now the deathing process, to move into this state of grace and divine mind. and not just for herself, but for so many around her, touching countless lives.
E’s been seeming farther away now. Not so much in her own world, as she’s been, but less of anywhere.
These entries from my emails and journals from July, 2012, one year ago, tell the story of the hardest period in my daughter’s time of living with cancer. Elizabeth Blue was in the ICU after a recurrence of lymphoma in her brain. Since June 12, 2012, she had had two rounds of chemo which did not shrink the tumor, followed by brain surgery in an attempt to remove the tumor, which removed some, but also caused massive swelling in her brain. This necessitated a second surgery to remove some of her skull to give her brain room to expand, followed by a stroke. Even with all this, I was still holding the vision of her full recovery, now including rehab for her to learn to walk again. Though I could feel the weight of all this news preparing me, I was angry at the nurse who first mentioned the word hospice. I’m now grateful, as it finally propelled me to ask the doctors for a realistic assessment of what we could expect. And then, the ultimate devastating news, that there was no more treatment, and we should consider hospice care.
Though this was extremely difficult, the grace and radiance of love was immense. Even as I read back through this period, I’m astounded at what we were all able to be present for, and that we did not simply endure, but our hearts expanded and opened more fully than I imagined possible.
7/22/12
Hi all,
sorry i don’t have good news – Elizabeth had a stroke which is affecting her legs – as of this morning she can’t move them. They can see from the scan that nothing else is affected. They believe it’s because of the swelling (in her brain), and that is putting pressure on small arteries – one must have bled and that’s what caused the stroke. This is devastating, but they are hopeful working with rehab will help, though that is down the road a ways. She doesn’t know this, at least we haven’t said it directly, though she was sleeping in the room with pain meds when the doctor was telling us and showing us the MRI.
She still has the breathing tube in which is very uncomfortable, although she’s breathing fine, they’re concerned about when she gets too relaxed with the pain meds that she won’t be able to clear her lungs and throat. I’m pushing to get it removed, but of course am concerned about her safety as well. Hopefully tomorrow…They don’t want to take it out and have to put it back, which of course i don’t either.
The good news: She is able to understand all we are saying, and responding well with yes or no with her head and her right hand. She can follow requests easily, like to stop biting on the breathing tube, though it’s hard not to do, since it’s so uncomfortable. They are giving her more anti-anxiety meds today, which should help some. They expect her to be able to speak fine, once they take the tube out.
Her left hand is still not moving, but that’s from the continued swelling in the brain, and the doctors are sure that will come back once the swelling lessens. The problem is they’re trying everything and nothing seems to be reducing the swelling. It’s not increasing, but not decreasing either. Her face is less swollen, and she can open both eyes today, which is good.
That’s all for now. Thank you all for your messages and love and prayers.
much love, Lucia
July 22, 2012 – Lucia’s journal
today Elizabeth had a stroke. i can’t believe i’m writing that. this is not entirely unexpected, even though she’s 22. she has lymphoma, that recently reappeared in her brain, and there was concern she could have a seizure that would lead to a stroke, but this happened because the tumor and/or swelling of the brain, is putting pressure on small arteries, and one of them must have bled. that’s what they think. so the nice young Indian doctor, neurosurgeon resident shows us, me and Greg, the father of Elizabeth who I was once married to for 11 years, the MRI done this morning. they did this particular MRI because this morning she couldn’t move her feet, so they were suspicious. suspicious is not a good thing when you’re in the ICU in critical condition.
July 23, 2012 (still in ICU at UMC hospital) – Lucia’s journal
stayed up with her all night, the anniversary of my father’s death. sitting vigil, not wanting her to leave to be with him on this potent day. praying all night to my ancestors, her guides, all the forces, asking them to have mercy. she stayed that night.
7/24/12 – hospice
Dear friends and family,
I am exhausted, with a long night up with Elizabeth last night, and pretty devastating updates from the medical team. They (her oncology doctors) do not think that going forward with chemo or radiation will have any significant benefit, and would have side effects that aren’t worth the possible short additional time it might give Elizabeth. The neurosurgeon is clear he can’t operate again, as the swelling in her brain is too risky, and he’s already removed the tumor he could access So this leaves few options, other than prayer, love and miracles. They are recommending hospice, once we get her stable enough to move out of the hospital. We do keep hearing stories of people who were told there was no hope, and then recovered from different means, so I’m open to a miracle, and I’m also preparing myself for the end of her life as best as I can.
Elizabeth still hasn’t been able to speak, as the breathing tube/ventilator is still in, though every day they’ve been hopeful she’ll have enough strength to remove it, and now “promising” tomorrow morning, but each time they’ve been worried that she will be fine for a while, but not have the strength to breathe on her own after some hours, and would have to reinsert it. They can do that, it’s just traumatic. I think they understand that at this point, it’s a priority that Elizabeth be able to communicate her wishes, so I think it will happen tomorrow.
Elizabeth is being quite clear about what she wants (ie who in the room with her – mainly me and her dad, Greg, etc), but with only yes and no, and some one-handed communication, it’s limited. So hopefully when they do take out the tubes, she will be able to speak! It’s so uncomfortable, she tries to pull it out when she gets a chance. She knows generally what we’ve heard from the doctors, and her spirit feels very low. That was just this afternoon, and we’re all full of emotion….We haven’t yet asked her if she wants to try treatment still, or if she just wants to try to come home. Tomorrow that conversation will happen I think. She will sleep better tonight hopefully, with some good sleep meds, so we should all be better rested in the morning – I’m home and Greg is in her room with her tonight, and Victoria (close friend and godmother) is sleeping in the hospital too, in a small family/waiting room. My mom is here and Julianna (my younger daughter who was 19 then) of course, and everyone is being so wonderful and supportive.
much love to you all, Lucia
Jul 26, 2012 (my responses to emails from friends)
it feels like the decision is made, but we never know what the divine has in store for us until the next moment…
…staying present with what is, and in sorrow and much gratitude…
…she is so blessed with such grace, and i can feel she is being held in the arms of the divine. as are we all.
7/27/12 Hi all,
thank you all for your continued prayers, love and the work all are doing on behalf of Elizabeth and the rest of us.
Elizabeth came home from the hospital yesterday at 5pm and is comfortably settled in her (hospital) bed in the living room. My sister is here and my niece, my mom is still here, Elizabeth’s dad, Greg, is staying as well, and her grandparents from Boston came yesterday. Julianna is incredible, so present and loving and tuned into everything that’s going on. I’m in awe.
The hospice people have been wonderful, and especially Ann Marie, our dear friend and Elizabeth’s doctor, has been amazing, helping get her settled, with meds and everything we need.
Elizabeth is able to speak, though very quietly, and is really sweet, expressing lots of gratitude (every time someone brings her something or does something for her, she says thank you, even when they’ve already left the room – hard to describe the childlike innocence and beauty in this.). She is different, speaking slowly, and usually only in response to a question – she says her mind is quiet. She is also drinking lots and eating in small amounts. She is present, and also feels far away, more peaceful, with less anxiety and agitation since coming home from the hospital. She’s not asking many questions now, and isn’t even interested in having her beloved cat Blue come visit her.
Today was full, with hospice folks (nurse, social worker and chaplain), and then E’s best friend Samantha came and showed her the tattoo she got yesterday of E B (for Elizabeth Blue) on her arm (made us all cry – Elizabeth has always told Samantha she should get this done, and when she heard about it this morning said now she knows Sam really LOVES her), and shared stories of dozens of E’s friends here who sent their love and tears and stories with her. Finally a friend who does sound healing came and played the crystal bowls which Elizabeth loved, and it was a beautiful experience for all of us. The radiance in Elizabeth and in the room is incredible.
I know it’s devastating for all of us to lose her, or even the idea of losing her, and I imagine for those who aren’t here it might be even harder. If I stop and feel what this looks and feels like from outside, it feels overwhelmingly sad, but when I’m present in each moment it feels fine. The minute by minute process is beautiful and grace-filled, and I am truly blessed to have this time with her, and for so many of our family and friends to be close by. It does feel like she is at peace, doing whatever she needs to do to complete.
There are many (hundreds even) who are doing prayers and healing work for Elizabeth all over, and I think this combined with all the love here is helping us through this incredibly difficult passage. It does not feel like the time to go searching for miracles, but to be fully present to the miracle that is happening in each moment. We are still in the 40 day healing intensive that Elizabeth and I started July 2 and it goes til August 12. I know that healing takes many forms and looks different for each of us, and I have to trust that this is exactly the healing process we need, even though it’s not our preference.
Here’s a photo of Elizabeth from today. She is even more beautiful each day.
love to you all,
Lucia
Elizabeth’s first day at home in hospice
July 29, 2012 (from an email to a friend)
…she is being showered with love and is a radiant state of grace. it is heartbreaking and breathtakingly beautiful.
Elizabeth Blue at home in hospice
7/29/12 (to a good friend)
hi John,
she knows she is dying, and is speaking very little. mostly if spoken to, she’ll reply or respond to a question.
when i was asking her questions yesterday about if she wants to be resuscitated if she stops breathing etc, she said no, and then i asked about who she wants to make decisions if she can’t verbalize and she said me, and then i asked if there is anything we can do to make her more comfortable, and she said, to stop asking questions. love it.
so i don’t think she cares about anything beyond the moment right now, and planning for anything, even if she wants to eat something doesn’t make sense to her, or matter. she’s beyond that.
i trust we will know what she wants and if it comes to ask any specifics i will. i’ll ask if she’d like to see you though, if you feel called to come?
3 people leaving today, my niece, stepmom and Greg. leaving my main support of Tashe (sister) and my mom, plus my stepdad who’s being lovely and mostly present and quiet. julianna is extraordinary. my brother comes later in the week for a couple days.
zelie (my partner who had been in Hawaii during these last 7 weeks) is asking me if i still want her to come back early, after the retreat is done, rather than a week later, and i can’t tell her. i’m like elizabeth right now, so in the present moment, don’ t know what i want later today let alone next week. i know i’m not the same person, i can’t give much to anyone for a while though. i need to be in here. i know you understand.
i would love to see you though. you bring me a certain comfort like no other. and i imagine for elizabeth too.
love, Lucia
7/30/12 an email to our Tucson community and my clients
I am taking a hiatus from my outer work while I focus on my family.My older daughter, Elizabeth Blue, is home under hospice care now, and she is being showered with love and in a radiant state of grace. it is heartbreaking and breathtakingly beautiful. The radiance in Elizabeth and in the room is incredible.If I stop and feel what this looks and feels like from outside, it feels overwhelmingly sad, but when I’m present in each moment it feels fine. The minute by minute process is beautiful and grace-filled, and I am truly blessed to have this time with her, and for so many of our family and friends to be close by. It does feel like she is at peace, doing whatever she needs to do to complete.
There are many (hundreds even) who are doing prayers and healing work for Elizabeth all over, and I think this combined with all the love here is helping us through this incredibly difficult passage. It does not feel like the time to go searching for miracles, but to be fully present to the miracle that is happening in each moment. I know that healing takes many forms and looks different for each of us, and I have to trust that this is exactly the healing process we need, even though it’s not our preference.
I appreciate all the heart-felt suggestions and questions, but I am spending as much time as possible being in her presence, in our heart connection, and will not be online much these days.
I will not be scheduling individual clients or classes for the time being.
love and blessings, Lucia Maya
7/30/12 email to a friend
it feels to me like the path is being cleared/has been cleared for her to leave with grace, and my job is to assist in this as much as possible…
some friends are still making suggestions about different remedies to try, and my sense is that to get our hopes up now is too heartbreaking, and best to focus on being present with what is…i’m an eternal optimist, but my optimism is now focused on facilitating this transition as her healing process…
and of course remain open to ALL possibilities.
7/31/12 (to a friend)
oddly, as incredibly sad as i am, the one i know is already gone, and i’m grieving that loss, and the one who is here feels like she’s clearly on her own journey out, so the hope i feel is largely about the passage being peaceful and gracefilled…and just what she needs it to be.
8/1/12 another group update
Hi,
Elizabeth is doing well here at home, very restful, at peace, very quiet and in no pain. she’s on almost no medication now, eating little, drinking some (for some reason every time she drinks at all, she drinks to the bottom of the glass, like it’s just what you do…), observing, but not engaging much unless she’s engaged and will answer questions, usually with a nod yes or no. otherwise she’ll just listen. she makes her needs known still.
She’s being very well cared for and loved. lots of family and some friends, so much that i’m playing gatekeeper to help keep the energy quiet and slow, as she seems to prefer. Or at least I do! just trying to keep track of who’s coming and going is a lot, but mostly i’m not trying to, just letting people text when they want to come, and saying no if it’s not a good time…
Zelie is coming home tonight, which will be wonderful to have her presence and support in person, though her support has been tremendous from hawaii too.
Tashe (my sister) is amazing, doing everything from feeding E, massaging her, sleeping on the floor in the living room with her, to a project where she’s hanging beautiful fabric by the back door so everyone who enters that way will slow down and remember they’re entering into sacred space. Everyone here is contributing in their own way, and it’s beautiful how everything gets done and Elizabeth is being so loved and nurtured.
I found some of Elizabeth’s wonderful poetry on my computer, and wanted to share a couple. This first one is from 2005, when she was just 15. The 2nd one, “Obama” poem, I’m including the email intro she wrote then, which i love too.
love to all, Lucia
Hello All, I just came across this poem I wrote about a year ago when Obama was in the primaries. It reminded me of the excitement and love I had for him then when he was still just the bud of a revolutionary idea. It also inspired me to further appreciate him now.
Thank you for humoring my raw and unedited writing, much love to you all. -Elizabeth
Obama
We need you.
Us, a people who have slowly descended
From the dream of our ancestors.
Us, a people fallen from grace.
We need you to be our Father
We need your gentle strength
Your wise eyes.
We need your pride and your love
We need your working hands
Your compassionate mind
To mold our broken humanity
Back into something palpable
And whole.
We need you to remind us of our morality
Our passion that built this community — America.
You who see the best in us
You with trust and hope and unconditional love,
We need you.
We need a leader who will stand tall
among those who cower.
A man who will be brave enough not to drop bombs.
We need a new Father for our country.
One who knows the light in his daughter’s smile
Like a heartbeat.
One who sees the beauty in the shadows
In the tired and poor.
One who will lift the broken body
Of our country from her dying bed.
One who will see that she can be healed with compassion.
The deeper that sorrow carves into your being, the more joy you can contain.
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” ~ Kahlil Gibran
This past week included the graduation of 4 young women I know from the University of Arizona, including my daughter Elizabeth’s best friend, who was also a creative writing major, and Elizabeth would have been graduating along with her, if she were alive. I attended her graduation with such pride and joy for her, an amazing and brilliant woman, grateful I could witness her commencement, and at the same time so deeply sad that Elizabeth was not there as well. In an amazing reading I had with a medium, (who contacts and shares messages from those in spirit) Elizabeth had communicated that she had “graduated” in the spirit world, and is completely joyful there. She even showed him herself with a diploma, which had been important to her, so that brought me some comfort.
On the heels of that tumbled Mother’s Day, my first without Elizabeth present. Again, it is filled with such a combination of emotion – gratitude for my daughter Julianna, whose 20th birthday it was that same day and sorrow that she was far away in New York; gratitude for being the mother forever to both of my inspiring, beautiful and amazing daughters, and to my own mother, for all the gifts I’ve received from her, including being born; and greater sorrow that Elizabeth will never again be with my on Mother’s Day, not in her physical form…
Elizabeth Blue and Lucia Maya ~ April, 2012
So I’ve been allowing this deep well of grief and mourning to bubble to the surface, and flow through. I’m aware that when I’m in it, I’m not clear enough to write, not clear enough to read through and select Elizabeth’s next pieces of writing that I so want to share here, and have to trust the process, trust the timing, not rushing or pushing, as much as I’d like to at times! This beautiful quote by Kahlil Gibran spoke to me and resonates deep in my being, and so I hope it speaks to you as well.
Luminous Blue 