Dying: it's all about living

So we’re at that stage of life that many would, and have, described as “dying.” True enough, we’re noticing some of the icky stuff – creeping paralysis and numbness on the left side, and the weakness and reduced mobility that go with it. We have less stamina, particularly late in the day and there’s creeping fatigue – I’m napping and sleeping more. Things I used to do relatively easily are getting harder – dressing, getting in and out of cars, walking, especially late in the day.

That I’m able to do these things at all at this point in the progression of my disease has a lot to do with my “Heidi muscles,” the legacy of three years with trainer and rehab specialist Heidi Engel. She’ll be the topic of a post in the very near future, complete with her exercise regimen for dying people (yes, it makes sense!).

We have been able to compensate for some of these issues – dear, sainted Heidi brought us a hemi-walker, a device that gives hemiplegic moi more stability while standing and walking, even if it slows my already pathetic pace to a crawl (at least I’m not falling – a really major drag) and Linda just ordered a heavier-duty wheelchair – the first, lightweight chair was hard to get over lawns and bumpy streets. And thank God for the brain’s constant, automatic compensations – I need every one I can get. My death is so full of life that we’re having scheduling problems.

This past week I took a dozen photos for InMenlo, went to see the film Salt with Scott, kept coffee appointments with friends and neighbors, cooked my version of Daniel Boulud’s chicken provencale for Heidi, Linda and cousin Thomas, attended Menlo Park’s downtown block party with Linda, Thomas, Julie and Grace where I had a pretty good cassoulet and a glass of Cotes du Rhone while sitting in the middle of Santa Cruz Avenue, courtesy of Ali and the crew at Bistro Vida.

We dined with friends at Mike and Cathy’s house, where Linda and friend Jacob Levy somehow managed to get me, in a wheelchair, up a hill and over lawns to a very special dinner featuring my favorite dessert (thanks, Kathy!). Tonight I’ll be a guest at Lauren Levi’s wedding, black tie and all.That I can enjoy these days so much is testament to the work I’ve done with Heidi who is now making house calls – long drive and long day notwithstanding…

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About Chris Gulker

Chris Gulker, a self-described Infuential Blogger, lived in Menlo Park, California with spouse Linda. He passed away in late October 2010.
This entry was posted in All, My Brain, New Life, The countdown. Bookmark the permalink.

8 Responses to Dying: it's all about living

  1. Hi Chris. I haven’t been following blogs for a while. Facebook, the insanity of it all, has captured me and won’t release me. Only so much time.

    However, I was compelled to read this blog post of yours… the title grabbed me. I’m saddened to say it sounds like your progress is not so good these days. Please say I mis-read and that you are running/walking around like you have been for the last year and previously.

    Hoping for the best for you and Linda.
    Beth

  2. Kathi Titus says:

    Chris, It has been good/sad/memorable to reconnect with your life after all these years. I had so hoped that you would be the exception to the dismal statistics and that a life could go on for you as you have made it. I have found Oxy memories and the photos from Janine and Doug’s wedding to treasure. Kathi. (–posted from my iPad, don’t you love it?)

  3. Tom Seligson says:

    Chris,

    I’m thinking of you often.

    Seli

  4. Matthew D-G says:

    “My death is so full of life” — now that’s a line to remember. How many people I have met over the years whose lives seem so full of death…..

  5. Cathy Healy says:

    Gulker, Healy and Mario

    When Chris Gulker walked into the hospital room, Mario sat up, said something — I swear I heard him say something — and fell back dead.

    We had been sitting the death watch in Mario’s hospital room for four or five days, his grandmother, his mother, her lover, his brother, and me, a reporter for the Hearst’s LA paper, the Herald-Examiner. Chris was the photographer on the story.

    The Gulker-Healy team had been covering Mario for weeks — a daily story with three updates a day. The hook was that Mario was going to celebrate Christmas at Thanksgiving because he wouldn’t be alive by Christmas because his brain cancer had gone into the final stages. Our editor, Don Forst, a brilliant newsman, whom I usually admired, had dubbed Mario, “Tumor Boy,” to the horror of the entire newsroom. That label got dropped quickly, we heard, because Robert DeNiro called his good friend, the Executive Editor Jim Bellows and complained.

    However, the story of Mario’s last days continued to be hyped because, in the news biz, the Herex had gotten a head start on the “100 Neediest, Miracle of 34th Street” kind of emotional Christmas stories. Mario’s story went worldwide and the Herex owned it because we had the inside track. “We.” That was Chris and me. Because…in the Herex newsroom, GulkerHealy / HealyGulker always got their story.

    Chris had been pulled off the Mario series when the 10-year-old slipped into a coma. There were other stories to cover, but Chris was undaunted. He had sneaked back to LA Children’s Hospital on his way to shooting a high school football game.

    Which is how we shared Mario’s death. I believe Mario waited to die until Chris could be there too.

    Gulker would be back on the story with his cameras for the viewing and the funeral. And Healy would linger on the story to do a final Sunday wrap-up on how the death of a child impacts a family, and whether a sudden death is more difficult than a long lingering death, like Mario’s. (Conclusion: Both are devastating.)

    Chris remembers that Mario’s grandmother had just stepped outside for a break when her grandson died. I’m not even sure Mario was 10. I remember mostly feelings–sadness and the desparate surge of hope for a miracle when Mario rallied shortly before his coma. I remember that I closed out everyone except those in the Mario circle; Chris was my lifeline.

    Now Chris Gulker has brain cancer. After nearly four years of treatments, his doctors have told him that he has a month or two left. I am crying as I write this, and truthfully, I have fudged the time that he has left. Chris blogged that he was told on July 17. Today is August 17. Three days ago, he blogged: Dying: it’s all about living

    It has taken me a month to write about Mario, Chris and me. Perhaps my reluctance is terror that I, too, will “catch” brain cancer. I should add that this is irrational and I know it. Chris doesn’t have the same kind of cancer as Mario had; Chris looked it up a few years ago, from curiosity, not from my fear of cancer. I watched my sister-in-law survive and suffer for 18 years with brain cancer. It was horrible for her, especially the last decade or so, and for all of us.

    Chris lives in Menlo Park, CA and I live in Washington, DC. Our lives have been separate since 1981. But I feel a gossamer link of love that connects us.

    I count on Chris to continue to make the future happen now. (Like when he put the first major paper in the United States online (sfgate.com). Like when he worked for Apple helping do the same for newspapers all over the world. Like when he moved Adobe Acrobat forward as project manager. Like the hyperlocal news site, inMenlo that he and his wife, Linda, created in 2009. (Note to Chris: See WPost Ombudsman’s recent apology for bungling a local news story.) Oh, and of course, there is Gulker.com, which Chris started when http:// was almost unknown to all but the visionaries.

    I count on Chris to make me smile with kind words (“The Herex spoiled me – I thought all of life was going to be that much fun. You spoiled me, too. I thought all of my colleagues were going to be as bright and energetic as you are.”)

    I count on Chris’s courage. (“I’m more comfortable with death than I’ve ever been… my death anyway. Confess I’m still not thrilled with dying children.”)

    And I count on Chris continuing to be my inspiration. Gossamer links are like wi-fi from heaven.

    Mario taught me how to be with people I love as they die. I have blessed his help every time I’ve touched death. Thank you, Mario.

    Mario taught me the value of “joint journalism,” I worked with his doctors to make sure that my stories were medically accurate. Thank you, Mario.

    Someone once told me that the GulkerHealy stories about Mario and how his family struggled to afford to be with him for his treatments and death inspired the founding of the Ronald McDonald Houses. I just checked and their dates and official story don’t seem to coincide with the Mario story. I don’t remember the source of the comment, but at the time it seemed like someone with inside information, so I shall choose to think that Chris and I left a deeply important legacy for sick children. Thank you, Mario.

    As Carol Gulota Sotelli, former Herex reporter wrote to me: “Chris is facing this with insane amounts of dignity and grace.”

    As Chris wrote: “My death is so full of life.”

    Thank you, Chris. And thank you, Linda.

    Blessings, and love.
    Cathy Healy

  6. Dear Chris,

    I’m so sorry to hear about your health problems, but am encouraged by your positive attitude.

    I just wanted to share a memory that I often recite: In 1995 I think it was, you were at Apple and I was at Hearst Magazines. You were the first person to draw a picture of an XML repository, where publishers could put their data and output to any media known to man, now or in the future. I often think of that nirvana, which the publishing industry has yet to fully grasp.

    All the best wishes for a life full of love, happiness, and inspiration,

    Kathy Sandler
    Technology Consultant
    Sandler Techworks
    http://www.sandlertechworks.com

  7. Joel Grow, WRA '69 says:

    I most vividly recall our Philosophy and Religion class with Charley Stern, with your already inquisitive, searching, entertaining mind.

    Well done, sir.

    Ave atque vale.

  8. cg says:

    Joel,

    I was going to answer “Veni, vidi, vici,” but I find that “Veni, vidi” is more applicable in my case. To have arrived on this wondrous madhouse of a planet, and to have taken it all in for these 60 years, has been more than enough.

    Lux et Veritas,

    Chris

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