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.
Troubling: 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 is the founder of the Helios Project and Reglue, which for 20 years provided refurbished older computers running Linux to disadvantaged school kids, as well as providing digital help for senior citizens, in the Austin, Texas area. He was a columnist for FOSS Force from 2013-2016, and remains part of our family. Follow him on Twitter: @Reglue