Dec 212012

I’ve been continuing to reflect on the last year, re-reading my blog postings from a year ago as Nancy and I navigated her hospitalization.  Early last December, we realized that she would not survive, and a year ago this afternoon, she decided to stop medical treatment. She passed away early the following morning, so tomorrow will be one year. I’ve also gone back and read my private journal entries, where I wrote about my feelings through this period, the events of her final day, the long vigil that Tina Benson, her brother Jim, her sister-in-law Kathy and I shared through the night. Someday perhaps I will get this into a book, but for now, there is no need to share details. It’s enough for me to simply remember her, and feel the still-healing place in my heart.

So the next 24 hours of my life are ritual space, and I invite you to join me in whatever way you wish. As we celebrate the winter solstice, and the death and rebirth it symbolizes, remember who she was to you, what she brought to you, cherish her. And perhaps ask yourself what was born in you at the time she passed away?

For me, everything inside seems to be different. The boot-camp of nearly two months in the ICU developed some essential durability inside; I know that I can sit with anyone through just about anything now. I also know just how fiercely loyal I am…I never even thought about leaving her side through all of this (although we were working hard on our marriage before her final illness came in).

The daily contact I had with her, for weeks after she passed away, was loving and communicative and startlingly real for me. It was like having her sitting next to me, invisible and a little hard to hear clearly. It got to be pretty amusing, I would be driving to work, and she would land in the passenger seat and surprise me, stick around a chat for a while, then take off. I had additional contact with her last April, for several weeks. I now know that some part of us continues after we pass away, and that unshakeable knowing has stripped away most of my fear of my own death. With that, many of my other habitual fears have fallen away. If I have a feeling, I don’t hesitate to express it. If I have an observation to share with someone dear to me, I don’t hesitate to express that either…as long as what I say is in service to them and to our relationship. I had so many little stopping points, ways of filtering myself, before Nancy died, too afraid to speak the plain truth, afraid of my impact or of the judgement or criticism that might come back. Now I hardly ever filter myself. Life is too short for superficialities.

I also have a sharp and deep appreciation for all that I sense and experience. I’m loving food, wine, weather, hugs, everything sensory in huge ways, and I’m greedy for it all. Life is precious and fleeting, and we won’t get to have these experiences when we’re gone, it will be different.

Which begs the question, what do we get to take with us when we die? I can testify that Nancy had all her memories and feelings, in fact, her ability to express love and feel loved was liberated when she left her body. So we get to take our love with us. Perhaps that is the durable remains of incarnation, the part we get to keep always. The ngöndrö practice text says

The passage of the four seasons is but a momentary flicker.
Everything is impermanent, bound to four inevitable ends.
There is no one who, having been born, has not died.
Our lifespan and life force are like a flash of lightening or a drop of dew.

I would have never taken on the preliminary practices before losing Nancy, and now there is a spiritual anchor in my life through them. They are changing my body, strengthening me physically and changing me in subtle ways I can feel, but not yet comprehend. Some of my meditations are bringing intense insight, delightful awareness, deeper feelings, more receptivity. This is all wonderful.

And lastly, I adore the woman I’m dating, I revel in the direct and affectionate and uncommitted relationship we have, and we are about to go on vacation in Hawaii through the holidays, my real first vacation since the summer of 2009. I’m looking forward to what the new year will bring.

I sincerely hope that you, my friends, are finding love and connection, meaning and warmth this holiday season. I love you.

remembering the mozart wait

 Nancy, Reflection  Comments Off on remembering the mozart wait
Dec 042012

Since late October, I’ve been re-living the same time last year, the final fifty-six days of Nancy’s life, in the ICU at UCSF. When I went through the experience, I just had to show up each day, fully present, in the parts of me that could function while seeing my beloved on full life support, completely self-aware. Now I’m remembering the horror of it, how I had to negotiate with all my internal scared and young parts that could not deal with the challenge, tucking them away safely before walking into the hospital. It was the most difficult period in my life.

December 4th was the day that we found out that Nancy’s spinal abscess had returned, and that it could not be operated on. It was a decisive day, we all knew somewhere in our hearts that she would not recover without some kind of miracle. I wrote:

We are now facing the biggest mountain of all. Her two-month infection has turned into an abscess that seems to span most of her cervical and thoracic vertebrae, half of her back. It’s inoperable, it’s too big. Medical treatment is limited. The team of doctors switched antibiotics Friday, to meropenem and vancomycin, the big guns. The immunosuppressive drugs that prevent graft/host disease are dialed down to minimums, tachrolimus is below the therapeutic level, and prednisone is down to 10mg today. They will reduce the prednisone again in a day or two, but 5mg is pretty much the minimum to avoid an adrenal system crash that would also cripple her immune system. It’s a tightrope. Her immune system must rally to beat this.

The odds of Nancy beating this are not good. Nancy doesn’t want to die, she’s scared, I’m scared, and we’re digging deep. Her brother, sister and I all had extensive talks with her ICU attending and oncology attending today, and we’re putting together a meeting in a couple of days with the whole team.

That being said, some other parts of the journey are going well, and I believe in the power of all of our intention and prayer. There are a lot of us petitioning for her recovery, I’m giving her reiki each day, and lighting our altars each night. Her kidneys are working well, putting out something over four liters of urine each day. I didn’t even know they could do that. She’s been breathing on her own all day today, although she’ll get some breathing assistance tonight to help her rest. Her lungs have cleared of fluid, and she hasn’t been coughing up anything at all today. Her secondary inflection has cleared, and she has no more indication of any stomach problems. All her vital signs look good, though her pulse has been consistently high, around 100-105. She has almost no fever. She’s resting comfortably, and sleeping more than half the time since 3am this morning.

She’s sleeping now, in a quiet darkened room, as the chaos of the daily nursing shift change swirls outside. Mozart has been on the iPod player all day, as Janet, Jim and I take turns being with her. Her nephew Andrew and sister-in-law Kathy were here this morning also. As a side note, her dad came home from his week in the Novato hospital today, which helps ease the collective stress in the Jones clan.

Settle in, this is going to take days or weeks to resolve. I’ve learned that love is not a transient sensation of the body, love is a state of being, as durable as a galaxy.

As I approach the anniversary of her death, I’m contemplating all of what I have learned and developed because of her, and thinking about what I want to do on the anniversary to memorialize her, celebrate her, and release her. I’m also remembering all my love, encouragement, devotion, fear and pain.