It is with incredible sadness that I write this post. Last night (December 27th, 8PM EST) Shani took her final breaths. Her mother, her dear friend and former partner Frank, Lucinha, her acupuncturist James, and I were with her, providing as much love and support as we could possibly muster. James came at a moment’s notice to do some Reiki, immediately silencing the rumbling in her lungs, and allowing the faintest of smiles to cross her lips in passing.
As you know from reading these posts, it was a long and difficult journey. It seems so unfair that one so young, brilliant, beautiful and talented, and with so much yet to give, should go so soon. Shani handled her disease with such strength and dignity. It was incredible to bear witness. It was not easy to be sure. There were moments where she felt like giving in, but she never did.
Shani continued to do whatever her body, mind, and force of will (which she had in abundance) would allow – researching new treatment possibilities, enduring surgery after surgery, developing creative projects both independently and collaboratively, and most recently translating her experience with cancer into some amazingly powerful art projects… something she had earlier promised herself she would never do. Her position shifted because in her most recent work she was able to find a place from which to provoke and reflect without it, as she said, “being about me.” For her that made all the difference.
Thankfully we had the chance to go to a house on a lake for the holidays. It was a trip Shani was determined to make, no matter how badly she was doing. I think she knew it may well be her last. Her mother, Frank, Lucinha and I loaded a van with stuff, and were joined by her aunt Birgitt, cousin Ngouah, and dog Sasha, who drove out from the DC area. Her aunt provided an amazing Christmas Eve feast, and other delicious meals, as did Frank. So we had good food, a lovely tree, exchanged gifts, and even had some snow. Shani, though very weak, was fully conscious and actively participating – often helping to mediate minor conflicts, or giving directives from a distance, or managing/scheduling her care so that her care’givers (us) wouldn’t be overly burdened – I was “the night shift”, Frank “the day shift”, and her mother always “on call.” The reality was of course often more complicated, as we all wanted to be there all the time.
Birgitt, Ngouah and Sasha left on the 26th. We were scheduled to leave back to NYC the 28th (today). Unfortunately, Shani took a turn for the worse, sleeping most of the day on the 26th, no longer really speaking, though still responsive when spoken to, and barely opening her eyes. We decided to pack that night, in the midst of a snow storm, and drove back the next morning (Thursday the 27th). Shani did not improve, and slipped further into sleep. We sat with her, holding her hand, caressing her face, coaxing her to swallow small sips of liquid, talking to her doctor, and trying to get a hospice team to come in and minimize any pain and anxiety. They did not get there before her passing. Regardless, she seemed at relative ease, without too much pain, and appeared to go in peace with James’s able assistance.
Love to you all,