essays grief and death

Choosing time (for Tom and Dori)

March 27, 2017

My friend Tom passed away recently. He was a professional friend more than a personal one, but he was a friend nonetheless. We knew each other for more than 25 years, and he was an important part of my working world at the time when I was getting my bearings in publishing. We spoke occasionally at the yearly Macworld Expo conferences in the ’90s and beyond, but most of our exchanges were over email (often about a product review he wrote for us). Every time I met Tom or his wife Dori, however, there was a warmth among us that I can only describe as camaraderie and friendship.

I can’t eulogize him to the degree that my friends Andy, Jason and Jeff did, but I can say that he was one of the best writers who ever wrote for me: his prose was clear and clean, and he knew about deadlines better than most (being a well-regarded book author helped with that). Beyond that, I can only say that he was a good man as I knew him, and I’ve always been grateful for the work he did for me, as well as the books he wrote, many of which helped me learn new things long after we stopped working together.

Much like Lee, Tom dealt with a long and painful terminal illness.1 And, as was the case with Lee, Tom died as he wished, using California’s fledgling End of Life Option Act to die on his own terms and at home. Unlike Lee and I, Tom and Dori were much more public about their decision: they spoke at length with a reporter from their local newspaper about Tom’s choice, how it came about, and how it affected Dori. I cheered their willingness to deal publicly with deeply personal—and important—issues at such a terrible time in their lives. I know all about the absurdity of choosing a day to die, and counting them down (as Dori did so heartbreakingly on Twitter), and the horrible beauty of the last day you will be with the one you have loved so dearly.

Lee and I chose to be quiet about her decision to end her life—mostly because Lee did not want to spend the end of days talking about her plans—but she was extremely grateful that she had the option, was passionate about it being her choice, and was thankful for the doctors who were willing to help her.2

Death is never easy, it is rarely peaceful, and most of us will never know how it will finally come to us—or how we will react when it does. Yet, for some, death can come at the correct time, something I realized as I watched Lee deal with her illness in a clear-eyed and courageous manner. I similarly watched from a distance as Tom and Dori struggled with these same issues and determined the path that they had to take.

I have written, but not yet published, a number of thoughts about the way that Lee came to die the way she did; I may still publish them, but I am glad and grateful that Tom chose to be as open and honest about the end as he was. We need to tell these stories to help others cope with terminal illness, death, and how we want to end our lives on our terms (as best we can).

And, while I feel the strength and the grace in Tom’s death, my heart aches for Dori. As is the case with so many friends who have passed, I feel a kinship with the one who is left behind. A house that is suddenly half is a lonely place, one that magnifies grief over the loss of the other, no matter how many happy memories live within its walls.

Peace, Tom, and to you as well, Dori. I am honored to have known you both.

  1. Tom was also born with spina bifida, another painful condition that, at the time he was born, often was a death sentence in and of itself. And yet, Tom carried that with grace and invisibility; many of his friends did not know about that until the end of Tom’s life.
  2. Not surprisingly, many doctors aren’t willing to help with the forms required to complete Oregon’s Death with Dignity Act, as there are pharmacists who will not fill the prescriptions for the drugs that will be used to end one’s life. I partially get it, but then again, I really don’t. I am eternally grateful, however, to the retired family physician who signed Lee’s papers with such kindness, compassion and care. He was a hero to us for the way he guided us through the strange process.

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4 Comments

  • Reply tashy5 March 28, 2017 at 2:55 pm

    We finally got around to completing our wills/trusts/healthcare proxy and wishes (thank god that monkey is off my back!). A lot of it is boilerplate legal babble, but I took extra care with my healthcare proxy instructions to make it crystal clear that I believe in quality of life over quantity. I was equally clear about the conditions in which I do not want to “exist” in, especially those that take away the who that you really are.

    I think at the very least, terminally ill people should have the right to decide when they have had enough, when they no longer feel they can go on – to opt for release and peace. Who are we to tell anyone they must suffer? Reminds me of the debates over giving terminal patients in pain heroin so that they can live out their days functioning and living, rather than existing and suffering – but, but, they might get addicted!

    I am glad for Lee that she had this choice, and was able to make her choice. Also for your friend Tom. However hard it will be for the people they leave behind, and of course it will be very hard, I hope they can find some solace in knowing that their final gift to a loved one, helping them along this process, was a godsend and likely one of the greatest acts of generosity, compassion and love they ever received from their partners. Thank you (and Tom and Dori) for being willing to talk about this, and states like Oregon, which aren’t afraid to give people end of life options.

  • Reply Deborah March 29, 2017 at 3:08 am

    That was beautiful and poignant, and very well written. Thank you for writing about an issue that’s fraught with conflict. We’re in our 60’s, so it’s something to begin thinking about (much as I don’t want to!). I’m sorry for your loss, both now and then.

  • Reply Deborah White March 29, 2017 at 10:23 am

    I watched my mother deal with a horrible rare neurological illness but never with her death (which was inevitably linked to the disease)–that wasn’t in her scope for many reasons. I am trying to imagine how the possibility of death as a choice could have changed the tone of everyone’s experience…but I can’t. I know, though, that it would have required a kind of acceptance that I am not sure we ever gave to the disease itself. I also know it is a brave choice: to face something head on without hope. Love to you and your friends.

  • Reply rwanderman March 30, 2017 at 5:44 pm

    I’m fascinated by both individual life arcs and the Macintosh community’s life arc. Once one gets past the middle of the arc and is on the (hopefully gradual) downhill slide, it’s easy to get sentimental. Lots of experiences and stories along the way. Lots of people coming in and out of each other’s arcs/stories, and more.

    I didn’t know Tom although I did read him and the name is more than familiar. For me, this event/transition speaks of how long those of us who have been in the Macintosh community from the start have been at it. I still have copies of the original Macintosh newsletter you and Rick Ford put out which, design-wise was the model for my newsletter: The Macintosh Lab Monitor which Apple published for me for four years. My wife keeps threatening to use a “backhoe) to dig up and toss out that pile of history (which includes early Byte magazines and a ton of Apple swag) I have stored in the basement but I can’t let it go because human memory being what it is (fragile and getting more so on the downhill side of the arc) I need those analog resources as touchstones to an important time and place in my life.

    On this side of the arc these kinds of events will become more commonplace and as you say, it’s important to keep in mind how we might deal when it’s our time. RIP Tom, and long life the Macintosh community you helped sustain.

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