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Fear & Loathing At 3 AM

I want to talk in response to things that have been discussed about our non profit, Reglue. Many have asked about how the organization will be maintained during my one month absence early next year.

In case you’ve joined the conversation late…

For a while now, I’ve talked about my upcoming surgery in January. The surgery will be a preemptive strike against a cancer we thought was in remission. Technically, it still is. But increasing precancerous cellular activity around the radiation scar tissue has become…troubling.

NOMouthTroubling: Doctor-speak for your options are decreasing by the day.

There are really only two options available to me. Option one is to just ignore it and hope the condition reverses or resolves itself. Option two is a radical neck dissection. That is the removal of the larynx, possibly the thyroid and any lymph nodes in the general vicinity.

Oh, and let the record state…precancerous activity of this magnitude never resolves itself. Ever. For the past month or two I’ve been playing it off like it’s not a big deal…that I’ll deal with it as it comes and there’s really no need to worry. Regardless of how it goes, I’ll find a way to pick it up and continue with business as usual.

That attitude vanished like mist in front of a tornado at 3 p.m. this past Saturday. The odd thing was that I had no idea why I couldn’t sleep. All medications and ambient sound devices had been in place, yet it was 3 a.m. and sleep wouldn’t come.

“You don’t know what it is, but it’s there, like a splinter in your mind.”

Without consciously realizing it, I swung my legs over the side of the bed and sat up. My heart was beating so hard that it hurt. My mouth was dry and my hands shook if I held them out in front of me. I wasn’t sure if my legs would hold me if I tried to stand up. I opened my mouth to call to Diane but all that came out was raspy, raw air.

And then I knew. I was in the middle of a full-blown, blue ribbon, gasping-for-air, praying-to-God-for-it-to-end panic attack.

In retrospect, I don’t know how I knew what it was. I’ve lived through some of the most hazardous environments in which a man can find himself. Panic attacks? Those are for sissies.

Until it happened to me.

With no other option than sitting at my computer, I found there was a support community with and for people who have gotten on with their lives after a laryngectomy. And see, there’s the rub…I’ve been telling myself that everything’s going to be okay, when I had no idea of what had to be done in order to be even close to okay. It’s now obvious that there was a part of me that wanted the other parts of me to pay attention and face the upcoming and life-changing event.

At 3 a.m. no less.

I posted a short bit of information about what I was facing and what I was feeling on the support site. Less than a minute later, a guy who called himself Mick welcomed me to the group. After a few minutes of swapping messages, Mick asked if I had a G+ account and if I knew how to use Google Hangouts. Two minutes after that, we were face to face.

Mick’s story wasn’t much different than mine. He is 63 years old and had been a 2-3 pack a day smoker for 40 years. His cancer had been so advanced that they didn’t even screw with chemo and radiation treatments. He was diagnosed on a Tuesday and on that next Friday he underwent a full neck dissection.

Mick spoke through what is called esophageal speech. This method of speech is encouraging, but as I’ve said elsewhere,I’m not going to be that guy…the guy who sticks a battery-powered device to his throat and the device translates the vibration into words. Robotic, cold, and through a child’s eyes, frightening words. I’d rather give up everything I do than have to communicate with a child in that horrible sounding voice.

So now, I am facing this challenge with a serious mindset.

It’s not going to be “nothing to worry about.” It’s not going to be just a minor change in lifestyle. It’s going to be an exhausting and slow process…learning to eat, breath and talk again. So what does that mean for Reglue? I honestly don’t know. I mean I know what I want to do, but I am not sure I can do it. 2013 Reglue volunteer of the year, Pete Salas, will be holding the fort down while I am gone. We will keep installations at a minimum until I can go back to work.

I am going to do my best to make everything work when I get back to Reglue. We’ve got good people working with us and one way or another, we will pick up where we left off. And I am now sleeping good. Longer than I’d like, but long enough to be fully rested.

But in the meantime, we’re going to blow through the holiday season, placing thirteen computers before and on Christmas Day. And to those who helped us with our annual fund raiser, thank you. Your care and support means more to me than you will ever know.

Ken Starks writes and publishes The Blog of Helios, a finalist in our Best FOSS or Linux Blog competition. In addition, he's the person behind the Reglue project, which refurbishes older computers and gives them to disadvantaged school kids in the Austin, Texas area. Follow him on Twitter @Reglue

7 Comments

  1. Randy Nose Randy Nose December 16, 2014

    I’m wondering, that event though you don’t want to sound like Mr. Roboto, that if that’s the only way that you’re going to be able to speak, you still might want to have that option available. – To keep from freaking out the little kids, you could try to have something recorded that you can play on your phone, to warn them that it’s nothing to be scared about.

    I just wonder that there’s going to be times when speed in communication could be more important that how you sound.

  2. Angel Berrios Angel Berrios December 16, 2014

    Ken:

    We don’t know each other.

    But we are part of a global community that believe in technology as a way to preserve freedom and progress as equals.

    You are doing good.

    Believe or not there is not a stronger force in the universe to preserve and share liveness.

    Be confident and persevere.

    Salutes in victory.

  3. Unbeknownst Unbeknownst December 16, 2014

    I know a person who’s very strong, much stronger than me… and yet has panic-like attacks. Sometimes even the powerful gets some “cramps” in the mind… Hurts a lot, but it passes.

    I recently figured out that, for me at least, classical music can be very soothing. It might help your day; you might want someone to help you, because such attacks can prevent you from driving (for instance).

    I won’t mention certain facts because it would worsen things, but actually, besides our feeble condition, real life is in such a bad shape the only reasonable outcome would be having panic attacks.

    But we go on, nonetheless. I recently received those cards from people who paint despite not having hands (they hold a brush with the mouth or with the feet). Some fellow, he himself without hands, decided to create an institute to help people like him.

    Good luck in your tribulations, and keep making the best of your time.

    You know what? We really never how our lives will unfold. Some people got a 6-month maximum life prognostication and decided to start grandiose things. Just because.

  4. Bob Krausen Bob Krausen December 17, 2014

    Our prayers are with you Ken! Beat that bug! We’ll be here when you get back.

  5. Ildefonso Ildefonso December 17, 2014

    Hi ken.

    Hope I don’t pester you with those same clichés you may have yet heard over the past months, about being strong and do as if nothing really was happening. Reality is, I wouldn’t want to be in your shoes. Nevertheless, I know you will soon recover and show up as usual, with that enticing attitude of yours. As for your voice? Well, I never heard it before, and probably never will. But I read it. Yes every time you dare to write these little pieces of your life that make me smile, laugh or even blame, depending of the subject and your tone. Yes, you’ll lose one voice, but another will remain. And this one is louder and far reaching. I’m looking forward to “hearing” it for a long, long time to come.

    Best regards.

  6. Christine Hall Christine Hall December 17, 2014

    @ildefonso I agree wholehearedly. Ken, the writer, has one of the strongest voices in the world of FOSS journalism — and that will remain true no matter what! 🙂

  7. Randal Randal December 18, 2014

    Ken, I find it odd, that you talk about how a childs exposure to technology, shouldn’t be predicated on their income, YET children are still malleable and come to tech easier, because they haven’t developed a fear.
    So the tech which would allow you to talk, same as a late friend of mine (who was embarrased to use it, and we his friends missed him because of it), as well as versions of it that allow people like Steven Hawking, to grace us with their benefit, seems as detrimenatal, as a kid who is afraid of a computer.
    Besides the neck tech, there are text to speech programs (may even be one for your phone), that you should look at and think of learning while your recovering.

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