Sunday, June 12, 2016

Journey's End

My wife, Christina, died early Sunday morning.

She was comfortable, she was not in pain, and she was not alone. In these last few days, the hospice team did a fantastic job of caring for her, and I think the process was as peaceful and soothing as it could have been.

I spent more than half of my life with this woman, but forty-two years is not a fair allocation of years to such a wonderful, talented, brilliant, and kind woman.

She was a geneticist by training, and a paper she wrote based on research done for her PhD thesis was published in Science. Having your first paper published in Science is a little like getting your first tennis racket for Christmas and winning Wimbeldon the following year (maybe that's hyperbole, but allow me a few bragging rights today). She discovered the genetic mutation that causes Type 2 myotonic dystrophy, as well as a type of CCM (cerebral cavernous malformation).

She didn't really like how science is conducted at the academic level, though, particularly as moving ahead in that world often means moving further and further from the lab bench. She transitioned to a role editing science papers for non-English speaking scientists, so she never quite left the field.

Christina was a remarkable partner. Fierce, tough, and stubborn beyond imagination, she was also supportive, loving, and incredibly sweet. She was the type of person who almost never swore (and I don't think she ever swore around anyone other than me), but then she could drop an insanely vulgar, and uproariously funny, joke out of nowhere. It was those contrasts, I think, that made her so much more special to me.

Cancer laid her low. She fought this insidious, relentless disease for at least two years. I say "at least" for while she was diagnosed in September of 2014, we have good reason to believe this disease was "simmering" in the background for many more years than that.

She was incredibly brave. From surgery to radiation to physical therapy to multiple rounds of medication (immunotherapies and targeted therapies), she never complained. She never had to be coaxed into the car to go to the cancer center, and she did her best to take care of herself throughout the process.

In fact, this intensely private person created a public Facebook page specifically to chronicle her life with this disease, and she was completely open and honest about all of the ups and downs, in the hopes that maybe it could help other people in the future.

She never lost hope. She accepted her fate when she was told in April that there was nothing more to be done, but she never gave up. She never stopped reading papers and running through "what if's" or "could we try's?" with me.

I take comfort in the knowledge that there was never going to be any such thing as "enough" time with this remarkable woman. Instead, I'll call myself fortunate to have the time I did with such a person. What's more, I now understand that this process is really the only possible ending for a happy marriage - sooner or later, every great marriage ends in death.

I hope it isn't disrespectful to mention this amid a tribute to her, but my plans for now are to take some time away. While neither of us are Jewish, I think the Jewish practice of a 30-day mourning period has a lot of wisdom in it, and that is what I intend to do. But I will be back. Writing is what I love doing, and she made sure I promised her that I would continue to build my life around those things I love.

Farewell Christina. And thank you so very, very much.

Sunday, June 5, 2016

No Work This (Past) Week

Just thought I'd update those readers who come here to let you know that I didn't really work this past week. And I may well not work much, if at all, this week.

My wife's condition continues to deteriorate and spending time with her is the priority for my time.