Love: The Soul Survivor

Love: The Soul Survivor
 

This is what Love looks like…

On that most terrible, beautiful, heartbreaking day, I awoke astonished. Astonished that I had slept through the night without the call: Come now. Astonished that Hope survived the night. And so I began that day, as I do every day, with the simple mantra: I am Love. A reminder that we are all Love, even and especially at the depths of our darkness. And then a prayer. Knowing that Hope had worn thin and was faltering, knowing that Pain was brutal and demanding.  Knowing that only the fiercest of Love would prevail. This was my prayer:

May she be at Peace. May she know the depths of Peace beyond the pain of her body. May she feel Love. May she know that Love surrounds her. May Love sustain her. May Courage bolster her spirit. May the Courage of her brilliant, bold, beautiful life continue to guide her. May she be at ease. May her pain be overwhelmed by Love…

And in the midst of this made-up, winging-it, doing-my-best prayer, the text: Come as soon as you can. And without a thought, I grab my car key and put on my shoes and I am out the door. Because Love can’t wait.

This is what Love looks like…

I am driving before I realize that I need to cancel my day. I make some shaky-voiced calls, trying to sound calm, yet urgent. Please, do not ask questions. Please, understand. I am driving before I realize I do not know where I am going. Literally: destination unknown. The irony escapes me until this moment, as I write it down. As I am driving, I hear in my voice and know in my heart that I need a new prayer.

I take your pain and suffering and I send you peace and love.

If you are not familiar with the Tonglen practice of taking and giving, this sounds a little crazy. In the surreal world of terminal illness where the rules don’t matter and nothing seems fair, nothing and everything seems crazy. The only thing that will make you lose your mind is trying to make sense of the impossible, devastating truth that you must abandon Hope.

This prayer is my anchor, my background, my offering. I offer it to my friend and all of those who love her. I offer it to the parade of nurses and doctors and caretakers. I offer it to the space. But mostly, I receive it over and over throughout this terrible, beautiful, heartbreaking day. It steadies me and opens me to the gifts of Love.

This is what Love looks like…

 Photography by Ellen Kooi

Photography by Ellen Kooi

I arrive at the door of her room in the ICU and see but do not register the sign to stop and put on a gown. The gown is protecting me, protecting her, the other patients? It seems bizarre, this hand washing and gown donning. And yet appropriate to have a ritual before entering.  I cross the threshold of this most sacred space where Hope is dwindling and Death is calling. The only thing that does register is Love. Love is on fire, crackling loud and burning bright, radiating light and warmth. Fear barely smolders along the twisted territory that trips up Hope, as She searches for the trail of possibility.

And so it begins. The beginning of the end. The nurse is gentle with the GPS. You are here. The road to recovery is officially closed. Hope asks for a miracle, a side road, any opening. Access denied. Hope shifts to a more modest possibility. Weeks at home. Time to reflect. Time to accept. But just as Hope shifts with the blazing support of Love, Time shifts again. Hope drifts off. So many words, so much information, too much to absorb. What is possible? What is real? How do you know? Help me understand. Help me! And another doctor, another timeline. Always shorter. Cruel even with the most gentle explanation. Full code. DNR. Comfort care. Life support. Invasive. Non-invasive. Risks. Complications. No one is pressuring you. Time is pressuring you.

Hope negotiates. Hospice at home? The staff scrambles against doctors’ better judgment. Maybe. Hope clings to the idea of serenity at home. Another chance. Please, give us one more chance. Another doctor, another timeline. Minutes to hours. No way out. Hope flounders and begins to sink. Buoyed by Love, Hope renegotiates with Death. Can she stay with us long enough for family to arrive? Give us just this day. Just let it be hours and not minutes. Too many goodbyes. So much Love.

This is what Love looks like…

It was the most terrible, beautiful, heartbreaking day. The day that cancer won. The day that Love whispered in Death’s ear, “You cannot touch me,” even as Death resolutely refused to take no for an answer. The day that Hope shifted and drifted and then suddenly sank. She sank into the ocean of dashed dreams and abandoned plans. Momentarily, She was seduced by the glint of Denial, shimmering and beckoning, I can save you. The sharp barbs of Panic threatened to slash Her to pieces. The undertow of Fear also motioned to Her, I will sweep you away from this terrible moment… come with me. Love was stronger than all of them. Undaunted, Love exclaimed, Stay with me!

Hope descended deeper and deeper, dropping into the dark abyss of Doubt. Taunted by Doubt, What is right? What is true? What is real? Who can I trust? Love answered, Trust me. Only I am real. I know the way. Stay with me.  Until finally, Hope surrendered, drowned out at the bottom of that deep ocean of Pain.  At the very depths of that ocean, Love cradled Hope as She lay dying, exhausted from years of facing unbearable pain. Love held on… It’s OK. I cannot die. I am here. I am with you. I am the Soul Survivor.

This is what Love looks like…

 Photography by Isabelle Menin

Photography by Isabelle Menin

Love creates a sacred space, a place of peace. But people can be messy, unskillful in the shroud of grief. Loved ones arrive, some talking too much, too loud, pressing too hard, getting too close for too long. It is all too much. How is one to know? How can you explain? Everyone is doing their best. Sometimes confusing their own comfort for hers, their own needs for one more exchange, one more precious moment of connection, one more chance. If only they could do something in this place of being.

Others are magnificently attuned, understanding that she is already in the space between this world and the next. Knowing that Love is allowing and not demanding. They offer Reiki, prayers of comfort and ease, silence, space… their tranquil presence palpably empowering Love to expand. And songs. How do you find a clear, sweet voice to sing to your beloved? How do you step back in what may be the final moments because you feel her asking for space? How do you silence your own pain and desires enough to clearly hear hers? How do you insist that a breathing mask stay on when you know it is distressing and yet know that it is the last bastion of Hope to keep her alive, if only for a little while longer? And knowing that, how do you acquiesce, relieving her temporarily of the mask, knowing you are bringing her comfort, while watching hawk-eyed as the monitor numbers become erratic, then plummet, imperiling Hope? How can you deny her anything, knowing soon she will be denied of everything?

This is what Love looks like…

Family arrives at last, peaceful, heart-centered. They are so filled with gratitude for this time, this space to hold vigil, to say goodbye. Time has been kind in its way. Death has been patient. And the patient herself has been a Rock Star through it all. She has understood that she was waiting for them. Time is suspended. Hearts transmitting what words cannot say. Then, finally, enough. Enough of the breathing mask. It is all way too much for way too long. OFF!

 Photography by Ellen Kooi

Photography by Ellen Kooi

Choosing Death is the pinnacle of courage for one who loved and lived Life with awe-inspiring vitality. Choosing to honor that impossible decision is the most heartbreaking, loving gift one can offer. Does she understand, really understand, what this means? Can anyone? Ever? How do you ask again, do you understand? How do you clarify? And repeat to the nurse? And again to the doctor? And how do you wait for the orders to come through for the comfort care to arrive? How do you explain that we are listening, that the final medicine is on its way? How do you insist that the mask stay on for just a little while longer, knowing and yet not knowing that meds will keep fear and pain at bay?

Knowing that you are in the space of the unknowable, how do you let your heart break wide open when Hope has nothing left to offer and Love has nothing left to lose?

This is what Love looks like…

Hope’s final request arrives. May she leave her body in peace, without fear, without pain. In a place of no promises, the nurse does just that. She promises: She will be calm and that will keep you calm. After years and a day of too many decisions based on unreasonable options, the only choice is to trust the nurse because the alternative is too insufferable. For everyone.

I take your pain and suffering and I send you peace and love.

After repeatedly asking the unbearable question: how long? Knowing no one dare answer… This time, no one dared ask: how long? It is her choice. Until the end, it was always her choice.

The doctor confirms. The nurse consoles. The drug is injected with more on standby.  The drug begins to soften her body. The mask is removed. The monitor is turned off. No more warnings. No more decisions. No more Hope. All attention is with her. Love is vigilant, holding the space as she is/is not holding her breath. Breathing deeply. Pausing too long. Breathing again. Pausing. No rhythm. I breathe with her. Maybe we all did. Minutes pass. All anyone can feel is her breath and her presence and the space in between, all held in the space of Love. Until finally, peacefully, too soon and yet too long, she doesn’t breathe again.

I see nothing. Yet I know. I know her soul has escaped, free at last, because my eyes are fluttering, somehow signaling me. I stop waiting for her next breath. Instead, I wait for a sign from the living, an acknowledgment from her truest, deepest Love who has set her soul free, who will hold her heart forever.

This is what Love looks like…

Silence. Tears. Laughter. Stories. Memories of her amazing Life, her courageous spirit, memories shared with hearts broken wide open. The nurse returns. She is Comfort Care personified. She offers condolences. She is in awe of the Love in the room, the generosity of honoring her wishes. We are in awe of all of it, this most sacred space and the courage of all who enter, forgetting to save the courage to leave. Still holding her hands, brushing her hair, closing her eyes, re-membering her. Remembering her promise to give signs of her presence. Knowing she is gone and not gone, nowhere and everywhere all at once. Feeling the depth of this terrible, beautiful, heartbreaking day. Knowing that the only thing left is the one true thing, the only thing that Death cannot touch, the one thing that lasts forever, The Soul Survivor… LOVE.

 Photography by Isabelle Menin

Photography by Isabelle Menin


Love: The Soul Survivor

By

Leslie Kazadi