Slipping Closer to the Edge…

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:

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.