Ash Wednesday

March 18^th. This day is not at all like your birthday, my sweetheart, in the way that I might observe and honor you, but still my prayers fly to you and I shall always be full of love and thoughts of you on it, ever remembering.

It comes this year somehow on Ash Wednesday, its calendar calculations of Lent and Easter still not quite understood by me. And Wednesday nights are when the candlelight Taize services are held every week at that nice little church here I’ve been telling you about, my darling. I’ve just come from there. It’s a little before 9pm as I write this and I have the black markings of ash from the service on my forehead still.

I remember, my love, that Ash Wednesday came almost a week and a half earlier in 2011, because that year it was observed on day after your accident. I remember that morning, none of us having slept, up all night and into the light of daybreak now, awaiting word of your condition and to be let into the ICU to see you. Very much in shock and sitting on the cold tile floor of the corridors there, I began to see people arriving – janitors, technicians, medical staff, visitors – the beginning of their day running into the tragic night of our own. And not a few of them with that curious, striking black marking on their foreheads. It was startling and, like so much, seemingly surreal. “Ash Wednesday”, it finally dawned on me. Ash Wednesday came that morning, the first of our 10-day vigil at your side, waiting, wishing (and for my part, praying) for your recovery, your return to us. That was the beginning. The first night into the first day. I’m thinking now also of March 18^th and the last night before the last day, my little sweetheart. About that…

Things got better before they got worse. The night before, we waited for Dr. Stiver, who had hoped you were stable enough to lay flat. They couldn’t lay you flat in your bed, my sweetheart, your inner cranial pressure would go crazy, they had to keep you at an angle, sitting up, slightly – that’s why it was so easy to imagine that you were just napping as you reclined there in the ICU and I would slip my hand into yours and stand there at your side for hours every day. Dr. Stiver thought maybe you were stable enough now that you could lay flat so that she could get a better read of your injuries by
taking an MRI (which is 3D) instead of a CT scan. It was the 9^th day you’d been in hospital and you hadn’t had an MRI yet and even the CT scan they did have was the one they’d taken in the first hours after your accident. Dr. Stiver had a hunch that you might be healing and she wanted to see a better picture of what was going on.

It was March 17^th. St. Patrick’s Day. They’d taken you, still hooked up to every life-sustaining and monitoring device sitting up at that 40 degree or so angle in your bed, from the ICU into the elevator and downstairs to the room where they do the MRI. Your dad went down and waited. The rest of the family stayed in the little “Consultation Room” where they’d led us the morning of the second day and where we’d been camping out ever since. I sat on the cold tile on the floor of the hallway under a window by the elevators. A tiny Spanish priest with a cross around his neck nearly as big as he was came by. He’d wandered into your room in the ICU the day before and I met him then. I’d been nervous because I didn’t then know your father nearly as well as I came to. I did know he wasn’t religious and I worried that he might be upset to find this tiny man in robes at your side, so my conversation with him had been brief, not terse exactly – I was glad to see him there and to tell him about you – I just hoped we’d finish our conversation before someone else came in and thought I’d summoned him without permission.

It seems impossible now, but those kind of absurd contradictory thoughts were in my mind at the time. He asked me what he could do for me and I told him then as I did again now in the hall when I saw him, to pray for you, my darling. Sometimes I wonder if that’s where the fault lies – maybe I didn’t pray hard enough.

Hours passed without word. It must’ve been late, nearly 11pm, I think, when Dr. Stiver appeared. I saw her in the hall and she told me to gather everyone, she’d meet with us in a few minutes. I sat on the floor there in that little room, your mom and dad and brother and Dr. Stiver – Shirley - on couches around the periphery. Sometime during, your mom joined me on the floor. She told me later why – she wanted to get between me and the doctor, because your mom thought that I, with my face so earnest, my eyes so desperately seeking hope, was drawing Shirley’s default attention and making her want to give the most optimistic assessment to my pleading, aching soul. It’s not that your parents didn’t want to entertain hope, my sweetheart, only that they wanted to protect you, only that they wanted not to seize on false hope that might end with you just barely recovering, regaining consciousness but as only a shadow of your incomparable self.

You’d known the struggle to live from such an early age and even nearly died twice in the months before I met you – on the operating table during the surgeries, the double-organ transplant that ultimately saved and changed your life (and mine) and later in a hotel room when your blood pressure inexplicably dropped to the almost non-existent. Your parents were with you then. They knew these struggles well. And you had been very clear going in and coming through them what was an acceptable quality of life for you. No one I have ever known, my sweetheart, had as keen a sense of her own mortality and hence such a fierce desire to fully live fully as you.

But even though from the first hours after your accident when the prognosis had been so very unpromising, tonight Dr. Stiver saw reasons to be encouraged. The mysterious ICP (Inner Cranial Pressure)’s had not yet regained their self-regulatory properties so you still couldn’t have the MRI, but she did get to run a new set of CT scans and she had a further idea about your status. She told your father she thought you might “be light”. That is that your body and brain were fighting the circumstances, were fighting the sedation, trying to break through to consciousness and come back to us in the same way that your lungs had fought against artificial respiration, knocking the machine out to breath on your own.

We left the hospital that night, my sweetheart, returning to the apartment in Pacific Heights that Noah’s dad, Lou, had lent us for our vigil, to have a family meeting not about letting you go, but about what would it mean to keep fighting if this hope indeed had merit. The concern wasn’t about your surviving, it was about your recovery – would it be enough of a recovery, would you be you and how could any of us make that kind of decision not knowing.

It wasn’t the first time it had been mentioned – I told your mom and she called me out to repeat to everyone that I said I would leave New York, leave everything, to devote myself to you, be at your side always, forever and help you recover. Your father, so very kindly, so very gently, said that you wouldn’t want that. That you had seized upon the chance of the kidney and pancreas transplants, whatever the risk, because the fate of your body failing from diabetes wasn’t something you could go on with and if that was a non-starter, there wasn’t any way you could countenance a life without your beautiful brain at its full power – the power of your indescribably wonderful speech, the power of your breathtaking movement, the miracle of you.

Still, tonight the question wasn’t if we would proceed but how. This 9^th night’s meeting of our vigil wasn’t without anxiety but for a few moments in those late hours after talking and before bed as we watched a movie together – the tradition you treasured and showed me and told me, “to watch a story at the end of the day with my partner”, so beaming with pride and gratitude, I, to be called yours – there was something almost approaching a lightness, a light. We’re doing this now.  We went to bed thinking that.

In the morning I was dressed and ready to go back to SF General. But the last couple of days - I’m not sure who made this decision, doubtless your Mom & Dad, sweetheart - but there was a kind of delay in getting to the hospital. We’d go for breakfast first or it took forever to get out of the apartment. This day, the 18^th, was also your brother’s birthday. I think your Dad, especially, didn’t want it to go unobserved and we wound up going to the Apple Store to get him an iPad. Maybe the delay was a kind of attempt to transition out of hanging on every moment looking for some indication that you might begin recovering, to stop reading every monitor you were hooked up to for some sign of hope, to just prepare for the longer battle.

Or something else entirely. I think I may have been the one with the most desperate hope. I know your mom thought so. And not just because of the way I looked to your neurosurgeon with such needy, pleading eyes. As a rule (occasionally bended), only two visitors could be in the ICU with you at a time. I would stay there at your side for hours. All day and night. Every day and night. Your mom told me I needed to stop that. It was too nakedly emotional a display of myself in public for her to bear. I didn’t mean it to be. I couldn’t help it. But it was.

It might not have only been me. In the first days, a small flood of people, your friends and colleagues, had come by, and it was more than your mom could handle I think. She was fiercely protective of you and she didn’t like the idea of people standing over you like that. Even me, I think, in the end.

A day or two before that night Dr. Stiver had taken you down and been encouraged with your second CT-scan, your folks had taken me aside and said that I needed to begin preparing myself for the reality that you would pass. “I can’t bring Summer back for you”, your mom told me. And I, my sweetheart, just like I did a hundred other stupid times, ran away for an hour. I picked up my backpack and left the hospital and went for a walk around The Mission.

Eventually, your father texted me and asked where I was. And he came over and met me at a little sandwich shop, a place I’d gone with Danya a day or two before. He met me there and we sat and had something to eat. I can’t even remember what. And he didn’t really say anything but he just sort of let me know he wanted me around. No one, and this includes me, my sweetheart, have suffered more than your parents, broken-hearted over your loss. And even in the midst of their earth-shattering grief, they have been breathtakingly kind and generous to me.

This quiet lunch in the booth of an old drugstore in the Mission with your Dad was one of those moments. Just before we left and even more heartbreakingly, a little girl scampered her way up onto the counter and your Dad smiled at her, doubtlessly thinking of you.

Now, on this morning, after our anxious family meeting warily regarding the prospect of your possibly long recovery not knowing where it would lead but resolved to try, we arrived after noon to learn that you had had a bad night. I don’t know if the attempts to get you in for an MRI had complicated matters or if it was completely independent of that. The staff had rotated with the shift and neither Dr. Stiver nor the nurses we were used to were on duty. A new team let us know things weren’t well. At first we just thought they didn’t know, maybe had the wrong patient. You were getting better, we’d just heard it the night before.

I think I held on to this more belligerently than anyone. To be honest, I think I still do. No one has ever been able to explain to me what changed so much overnight that we had to let you go. Your ICP’s were crazy again. But that happened.

The other neurosurgeon showed up shortly thereafter and showed your family the CT scan – the same one Dr. Stiver had found reason to have optimism. He did not. Your Dad understood immediately. It seemed everyone did but me. The doctor told me that you were “very very sick”. I just wanted Dr. Stiver to come back and say he was wrong. That what she told us last night still held true. I was sure she would.

They didn’t want anyone – maybe just me – in the ICU too much that afternoon so I waited on the floor outside all day and into the night asking now and again when Shirley would be there. At some point I understood she was in the building and had gone first in to see you and then in to meet with the other neurosurgeon. Sometime after 9pm they told us they wanted to meet with us and we all went in to the consultation room.

Incredibly, the two doctors were now on the same page, not at all optimistic. I never really got it. Had Dr. Stiver been wrong? Had something happened overnight that was so dire and irreversible? I never and still don’t understand. I can only trust that having been to the brink before –  I think it’s one of the things that made you so fierce and lovely, you knew how to live, what was important, were impatient with the stupid stuff and for the right reason – and expressed very explicitly what were and were not acceptable conditions for you to go on, were your health to decline.

If you couldn’t be fully you, you didn’t want to be here. I have to trust that the decision to let you go is the decision you had already for made yourself and made clear to us, however we may have wanted to try to go on. I have to trust and accept that. But it’s hard, my little sweetheart. It is so very hard.

Oh, sweetheart! I carry all this along with my endless love and desperate longing for you, always. And so today. And so forever. And with faith that you’re not that far away at all, even though invisible to my mortal eyes just now.

And on this day, which comes to the calendar this year on a Wednesday and on Ash Wednesday, at that, I took myself, as I said, to the candlelight Taize service because it’s such a good place for me to be each week. An hour of quiet mindfulness where I can think of and pray for you. And I’d never observed Ash Wednesday before, so that was something, too.

Most of the service was as it always is. The simple sung refrains, almost as chants. The readings of short passages of liturgy and poetry. The invitation to come forward, light a candle and say a quiet prayer (for you, my love). The further lowering of already soft lights leading into the silent meditation that is the centerpiece of the service.

What was added tonight for the occasion of Ash Wednesday was a further invitation in three parts. Ash Wednesday is the beginning of Lent, my love, and an opportunity to cast off things no longer of use to us. Anyone who chose to was invited to write that something down and later bring it forward to (Part 2) burn it while also lighting a prayer candle, setting the burning paper in a small tureen and finally (Part 3), having the ashes applied with a kindly touch to the forehead by the associate pastor (Jes, that young lady minister I told you about, my sweetheart) in the mark of the cross.

My sweetheart, what I want to put behind me is selfishness, ambition, unmindful, inauthentic socializing (including media), so that I know my thoughts and actions come from a place that’s real and true and grounded and of you, my darling, because you are my home and my way.

I wrote these things down and brought them forward, trading their ashes for the prayer I say always for you and for my return to you. I pulled my skully back on my head a bit and when I got up to Jes, I asked quietly if I’d given her enough forehead. She smiled, said “yes” and as she marked the sign of the cross on me there, said, rather startlingly “from ashes you are come and to ashes you shall return”.

It’s from Genesis, of course. And I don’t know what I expected, exactly, little sweetheart, but I still, somehow, didn’t expect that – something so Old Testament. Yet maybe that is, like so many things unfolding, exactly as it should be, and on this day.

We are not our bodies, are we, my love? We get used to them and they give us great pleasure sometimes – how I long to fall asleep with you in my arms, your sweet head on my chest, my shoulder, you little feet wrapped around my ankles, holding hands! – but on this day, of all others, that marks your passing, what could be more appropriate than remembering that we are spirits. That, in a quote some attribute to C.S. Lewis (and others to Walter M. Miller) “You don’t have a soul, you are a soul, you have a body.”

My sweetheart, my love, my little best friend, my soulmate, I feel so close to you tonight. I’d told Jes, when I arrived before the service tonight, what today was. She hugged me and asked me how I was doing and if I’d like to do one of the readings (which I did). I’m sure she had it in her mind when she made her gentle mark upon me and inadvertently (for me – mindful for her) startled me with her Old Testament words. And when I left she hugged me again and quietly told me that her prayer tonight was for you. As mine are always, my darling. Always and forever.

I love you, Summer. With all my heart and soul I do. And I pray for the day so very soon when I will be with you again and forever. Goodnight, my little sweetheart. See you in that bright morning.