Moving Into Grace – With Hospice

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 Blue, hospice,

Elizabeth at home in hospice with her cat Blue

Elizabeth Blue, Lucia Maya, hospice,

Elizabeth 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.

Elizabeth Blue, hospice,

Elizabeth Blue at home in hospice

 

And we began our journey into hospice…

A Daughter’s Last Photoshoot Before Cancer’s Finality: Elizabeth Blue

A Daughter’s Last Photoshoot Before Cancer’s Finality: Elizabeth Blue.

The amazing photographer, Jade Beall, took hundreds of beautiful photographs of my daughter Elizabeth Blue, in April of 2012, during the luminous time when Elizabeth had finished chemo and before the cancer returned in her brain.  Jade wrote a blog post today about her experience of photographing Elizabeth Blue, with photos I haven’t shared yet (I plan to share many more over time) and I am delighted to share it here!

Jade is devoted to sharing beauty, with an incredible eye and vision and a huge heart, she inspires many.

A Long Journey from the ICU to Hospice – Emails from July, 2012

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 Blue, hospice,

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, Lucia Maya, hospice,

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

© Lucia Maya, 2013

Poetry by Elizabeth Meagher

Seeping Back

‘I adore you,’ one moment of holding this, ‘God’ in all parts of my body

Devotion, my mysterious master

‘Don’t adore me’ in cupped hands not holding

Seeping back to the river of eternal life.

Devotion, my mysterious master

I saw the crossroads, one forever movement of light

Seeping back to the river of eternal life

Coming through the body back to the heart of center, back to the sexuality of breath.

I saw the crossroads, one forever movement of light

I felt the gift, one moment of holding forever, ‘I adore you’

Coming through the body back to the heart center, back to the sexuality of breath

This place of unknowing, eternal, unjudged, finally let be, ‘don’t adore me.’

I felt the gift, one moment of holding forever, ‘I adore you’

I am waiting for our hearts to be conjoined in the endless breath

This place of unknowing, eternal, unjudged, finally let be ‘don’t adore me’

Whisper of eternity that says I love you.

I am waiting for our hearts to be conjoined in the endless breath

Why can we not meet at the simple movement, place of undying peace and satisfaction?

Whisper of eternity that says I love you

For if we were to meet in that place there would be nothing left to live for.

Why can we not meet at the simple movement, place of undying peace and satisfaction?

‘I adore you’

For if we were to meet in that place there would be nothing left to live for

Seeping back to the river of eternal life.

© Elizabeth Meagher 9/11/05

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.

We do not need you for our strengths

Our weapons

Our corporations

Our wealthy.

We need you for our schools

For our Grandmothers

For our bus systems

For our foreign policy.

We need you

Standing tall

Standing proud

To pave the way for our future Hillary Clintons.

We need you for your healing tears.

And the resonation in our hearts

That our love is yours.

© Elizabeth Meagher 2008