Tom Negrino

A year ago, a long-time friend’s husband (a writer very popular in Macintosh circles) revealed he was dying of cancer.

I actually never met Tom, but know his work; he was a long-time contributor to Macworld, as well as the author of around 40 computer books, many co-written with his wife, Dori Smith, on topics as diverse as Dreamweaver, JavaScript, Keynote, Microsoft Office, CSS, and more.

Shortly after his announcement, California’s “death with dignity” law went into effect. Tom was in no hurry to die, despite life-long health challenges. But as he continued to decline, he chose a date: March 15. I’m friends with his wife on Facebook, and she started a daily “Countdown” to that day. So far, Tom hasn’t changed his mind. He wants to wait until the last minute, but still have enough clarity and energy to take the drugs to end his life himself. What a tough balancing act.

Tom Negrino
Tom Negrino

And every day, I see that reminder on Facebook — that unrelenting countdown, commented upon every day with an amazing outpouring of love and support to them both from their many friends, quite a few of which we share in common. In a way, it’s a privilege to watch, since I’m a long way away and can’t fit a trip in to go out there to see them in person before March 15. Just another cool thing the Internet enables, eh?

As a writer, I especially appreciate the ability of other writers to convey their thoughts or feelings, especially when they say a lot with a few words. Here’s the shortest example I’ve seen from Tom — his “review” of his wife, which is also one of the last things he posted on Facebook:

Tom Negrino
Meanwhile, after years and years of being a medic, and thereby being with an inordinate number of people as they died (strangers, friends, and family), I had some insights to share with her in this difficult time. As a writer, I have the ability to express those thoughts, as difficult as that may be, though perhaps not as succinctly as Tom might have. I decided to share them with you, since someday you might need this advice too.

Dear Dori

As the “countdown” has been getting closer and closer to That Day, I’ve pondered what I want to say to you. You already know it’s going to be a very hard day, for both you and for Tom, so I don’t need to tell you that. But I’ve been with (sigh!) many people — strangers, friends, and family — at the moment of their deaths, and maybe I can offer a few helpful words.

We all face that day, just most of us don’t know when. There are a lot of advantages of choosing when: you got to be together and say those things to each other you wanted to say; so many don’t get that chance. You get to be together in that final moment, too; few get that chance. But mostly, I believe that Tom is a lucky, lucky man to have someone who loves and respects him to be there for him when he needs you the most. We should all be so lucky.

You won’t ever be ready to let go, even when you know it’s best for him. But you do it anyway, because being there when it happens is the very essence of what true, unconditional love is. And he loves YOU enough to let you be his caretaker when our natural inclination is “Don’t want her to see me like this.” But he trusts YOU to be that person. It feels like a dubious honor, but it is a true honor.

While it won’t feel like it for a long time, you WILL get through it. Don’t feel guilty if you need space and don’t return phone calls, or if you need to talk and you call someone, including me if you wish, day or night. My advice is ridiculously simple and yet so hard: Breathe. Just… keep… breathing. You only need one at a time.


Meanwhile, for Those who Have Already Been There, there’s nothing better I’ve ever seen than this advice by “GSnow”, which he posted on Reddit in 2012 as a response to the plaintive plea, My friend just died. I don’t know what to do.

Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.

It feels awfully strange writing, in a sense, an obituary of someone who is still alive. But you know, we’re all going to be there sooner than most of us think, and I’ve never been one to shy away from the dying. Goodbye, Tom. You’re one of the people I wish I had met.

March Update

Tom died March 15, 2017. He was 60.

Fall Update

As promised, I went out to visit Dori, and listen to her awesome stories about Tom. Shortly after returning home, the Napa/Sonoma fires blew up all around Dori, and she had to evacuate. At last word, her and Tom’s house still stands.

21 Comments on “Tom Negrino

  1. Having just lost my nephew to brain cancer after a 14 year battle (they gave him 2 years — and removed the tumor 4 times), this couldn’t have come at a better time for me. Thank you.

    You’re most welcome. -rc

  2. Well said, Randy, and spot on from my experience in life and death. You’re a caring, compassionate man and your letter is a beautiful gift to his wife. Thank you for sharing with all of us.

  3. As I was reading this, I started getting tears in my eyes as I remembered my sister who was a part of me. And then I came to the section about waves at different heights coming at different intervals. Wow, that reached home.

    The beauty of it all is that permission is given to feel the waves as they come at their different heights and intervals. There as those who will finally have soft ripples and those I will share the high waves with.

    And it is all OK.

  4. Another sleepless night looms, as they have since Thanksgiving when my wonderfully spry 89 year old father was diagnosed with bone marrow cancer, a legacy from prostate cancer treatments years ago. My parents celebrated their 68th anniversary in the hospital in December, then he went home to die. All of his family, friends, and neighbors dropped by in ones and twos to share memories, laugh a little, and cry a bit too.

    He did not want to linger while his body shut down, and while the means were available, he waited too long and Mom could not do it. I wish she had let me; as a former EMT I was comfortable with the idea. I had to respect her wishes.

    I shared this same passage both with my Mom, and at his service, and every fisherman there knew about waves. It continues to comfort me. I give myself the same advice as you; one breath at a time.

    Thanks for listening. Keep fighting the good fight.

  5. When I received “family counselling,” the most important advice was, “don’t let one tragedy become two.”

  6. Very moving and insightful Randy. When my mother passed away a few years ago it was anything but dignified. An active and still mentally competent 96 year old, she never wanted to be hospitalized as she felt “once in, never out.” Sadly this turned out to be true. After becoming dehydrated from a flu bug she had to be taken to the hospital to recover. She caught the C difficile bacterium and slowly withered away. Every day she would tell us she was in great pain and distress and pleaded just give her “a pill”. We don’t have a death with dignity law in Ontario, mainly because some religions lobby against it. She didn’t get her pill. Her last few weeks haunt me still. Good on you California!

  7. I’ve gone through my Grandmother’s slow death from Cancer (1976). I fully support Death with Dignity. When old and in pain left with a choice of some months with steadily decreasing quality of life and a pill when you want it. I want the pill. YOU may be in physical pain but your family and close friends are in mental pain that has a very real physical feeling.

  8. My own mother suffered for years with cripppling arthritis. She passed away in her sleep at home with my sister and brother-in-law.

    My brother in law said the next morning, “This is your Mom’s best day in years.”

    I asked him, “You mean her first day dead?”

    He answered immediately, “Yes.”

    More than 25 years have passed but that brief exchange is etched in my memory. Sometimes a sick person just needs to be able to leave.

  9. Death is part of life. The only part we are really certain of that is going to be in your life. So it’s great seeing it treated seriously and as an adult, With thinking and feeling. For details see all of the blog above.

    Tom lived like a king, from your description, this part included. May you and his widow live through the waves seeing rainbows too.

  10. The subject of death is one that is not often dealt with. Yet another reason people have issues dealing with a loss of a loved one. Your letter to Dori and GSnow’s dissertation make me stand back and just say WOW. Such power and accuracy in such a succinct manner yet with true compassion. I think everyone that has lost a loved one should read both. Everyone knows they are at some point going to die but very few want to talk or write about it. Great letter!

  11. I really hate the words, “You’re in my thoughts and prayers,” not because the person is NOT in my thoughts or prayers, but because those words have become so commonly used and overused, that they have become cliches. That particular phrase does not even come close to expressing sorrow or sympathy for a loss. It’s just something to say, and it has been used so many times that any real emotion just comes across as laziness.

    It took me years and years and YEARS to get over my father’s death, because of the death phobia I felt surrounded by. There was something WRONG with me, despite being in everyone’s “thoughts and prayers,” because I genuinely missed my dad. The letter about the scars and the waves is ON POINT. Because when you think you have “dealt with it” — another phrase I TRULY loathe — when you think you can get through a day without breaking down, a stray memory might hit you as powerfully as a hundred foot wave, and there go the tears and the pain again.

    “Get over it, he’s, like, dead,” yeah, I dealt with some REALLY sensitive people over my voyage. Luckily, I did not reuse THAT line when their ship was slammed in that storm. My dad, “who’s like, dead,” taught me a LOT better than that.

    If we could actually have mature conversations about death, and the grief that inevitably follows in its wake, I think the world might be a slightly better place. Instead of using grating cliches, just let someone cry about the death of a loved one, or LISTEN to them, and let them get the burden of their pain out of their heads and hearts, even if only by a little bit.

  12. If she is like I was when my husband was dying, she will say thanks and never ask for anything. I feel the best thing to do is to take a meal, pick up her laundry, take some dessert. That’s what people did for me, and I so appreciated it. You didn’t say, but if he is at home, she needs a break. If he is in the hospital, she needs things done around the house.

    Tom died at home, under hospice care. I’ll be going to see her this fall, getting her out of the house for a meal. -rc

  13. As both a pastor and 20+ year firefighter, I’ve engaged death and more importantly the grieving process that follows along. Like the waves — I have used the summer thunderstorm analogy: At first is it wild, loud and relentless, and you swear it will tear everything apart — but then it lessens and quiets — and then comes back in another wave — a little less intense but a storm nonetheless. And then it lapses, and then returns, with a little less strength. You’re never done, but your “storm shelters” have adapted. Expect it. Embrace it.

    The other thing I coach folks with is that you never “get over it”. The person you lost was part of you. The loss needs to be seen differently. Their absence is in essence now a permanent part of your experience. You don’t get over it, but you can adapt to this “new normal”. Life will not be the same. But when you adapt to a new normal, life can be rich and joyous.

    Grief is really hard. But it is an opportunity. “Let’s meet up and talk about how your new normal is coming along.” Those are words a lot of grieving people are longing to hear.

  14. I was struck by the comment from John in Ca about his mother’s first good day in years. My mother too had suffered from arthritis for years and even tho she has been gone for 13 years now this really hit home. I had just never thought of it exactly like that.

  15. My sister was diagnosed with stage-4. small-cell lung cancer in December 2015. I moved her into my home in January and cared for her until her death in December 2016. I am still coming across bits of the wrecked ship: things she touched, wanted, loved. Each bit hits hard. Many are gifts she ordered online for the people in her life. I am left to distribute these undelivered gifts. They remind me how much she loved those in her life, and I grieve for that lost love.

    I found comfort in the wrecked ship analogy. I am still waiting for the waves and the number of found bits to decrease. I still feel as though I’m fighting an angry ocean, but the analogy reminds me that the waters will calm, and the sun will shine again. I only need to ride each wave as well as I can.

    Thanks for sharing something more helpful than just “thoughts and prayers.”

  16. My dad was on dialysis for eight long, brutal years before he died. At first, it was a case of “Thank God that’s over”. It wasn’t until about five years afterward, when we were singing “Eternal Father” in church, that I came completely and utterly unglued. I do, do, do understand the feeling of waves rushing over you.

    I wonder how people cope without a faith to lean on.

    • Dani: it’s just different. Plenty of people without faith will meet up at a memorial service, or talk to their surviving friends in a bar about their friend who just passed away. The waves still come, too.

  17. Dani: “I wonder how people cope without a faith to lean on.”

    The same way we live our lives every day without the false crutch of religion: we rely on our will to live, our joy in life, and our friends and family — just as Tom Negrino did.

    It’s terribly sad to us rational types that others would cling to a false hope rather than the real things that are truly a great part of our lives. Who I truly feel pity for are those who offer prayers rather than BEING THERE for their friends and family when you’re needed most. That is not being a decent human being. And really, what IS religion if it doesn’t teach the critical importance of being a decent human being?

  18. My friend John Shipman died 31 Jan 2017. He had been diagnosed with cancer about 10..12 days before. (They did a CAT scan because he had difficulty walking. His body was riddled with it.)

    He was diagnosed in Albuquerque. The next Tuesday he was taken down to Socorro (about an hour away) and put in hospice. (He lived in Socorro, and taught/worked at New Mexico Tech.) The EMT said John kept him entertained all the way down. John was a source of many stories, and the cause for many more.

    He had many visitors over the next week. I was able to visit him 3..4 times. He would start out lucid and awake, but as the week progressed, he would fade in and out, but still lucid when awake. Sometimes we would just sit and quietly chat as he dozed. But over the week, it was obvious he as on a downward spiral. The gangrene from diabetes was turning his limbs black.

    I was able to get there before he died, one week in hospice. The room was filled with his friends. We sat on either side and touched his knees as his breathing was labored. He just stopped breathing — it took a couple of seconds before we noticed. Someone said “he’s gone”. One of us got a nurse, who did the basic checks.

    I cannot say enough about how kind and professional the staff was. We stayed in the room for about 10 minutes, then went into the hall while the staff prepared his body, then we went back in. We each were grieving in our own way. People continued to arrive, including a woman from Seattle who had known John on-line for 25 years, but never F2F. We all were able to hold his hand or just talk to him, telling how much we missed him, telling John stories, or just hugging each other as needed.

    The memorial was about a month later, at the Bosque del Apache, a famous bird migration stop on the Rio Grande, just south of Socorro. John had been there 400 times. He automated the Audubon bird-sighting database and done the majority of the data entry. We saw several flocks of birds (don’t ask me what kind), but one looked like the “missing man” formation the military uses.

    This has been a tough year so far. My aunt Nancy died (of dementia) a few days before John, and my friend Kelly died a week ago (pneumonia) and her viewing is in an hour and funeral tomorrow.

    Randy, I had read this blog 1.5 years ago, but stumbled across it again today. Your words, and those of GSnow, are spot on and welcome. I had time to prepare for the deaths of my parents, but none of the people this year. There are a number of scars, and the waves are strong right now.

    So often, we get no advance notice: we find out after the fact, and just have to cope the best we can. GSnow really gets it. -rc

  19. Randy, this popped up in my FB feed as it’s been a year, and when I re-read it I realized I’d never thanked you publicly. So, again: thank you for your words, and for all that can’t be put into words.

    As you left this on a slight cliffhanger, I should add that I (thankfully!) didn’t have to evacuate due to the fires, as my area was only in a recommended zone, not required. I put everything I could think of into the car in case I needed to get out at short notice, but happily, it wasn’t necessary.

    You did thank me at the time. I wasn’t expecting thanks, let alone public thanks — I was just hoping you’d read it and would be helped by it just a little. -rc


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