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November 24th, 2015

FOSS Powered Learning Center Name a ‘Thank You’

On February 28th, 2012 at approximately 5:30 p.m., an emergency room ear, nose, throat doctor (ENT) who treated me for difficulty in breathing gathered my family around him. He reported that the throat cancer he found while inserting a trach tube was at stage 4 and that my prognosis was terminal. They were informed that the only thing they could do was to take me home and make me “comfortable.”

ONC MaskI don’t remember much. Diane, my youngest daughter Amanda, my ex-wife and others were at my bedside. I was heavily sedated and could barely speak. It was a carousel of faces and nurses, all in their own way, trying to bring me comfort. However, my life partner Diane wasn’t having any of the take-me-home-and-make-me-comfortable thing. She would have none of that. She demanded that an oncologist see me.

The next morning Dr. Courtney Sheinbein appeared at my bedside and introduced himself. He told me that Diane had asked him to take a look at me and give her the findings of his evaluation. Dr Sheinbein explained that my day was going to be filled with a battery of tests and examinations and that he would get back with me either that evening or the next morning.

It was a busy day, filled with one test after another, accentuated by being stuck in one tube after another — Xrays, PET and CAT scans, and sundry poking and prodding. It all ended about 5:30 that evening. As promised, Dr. Sheinbein reported bedside early the next morning and outlined my treatment plan.

Yes, a treatment plan.

There was indeed a large malignant tumor in my throat that, of course, was the cause of my difficulty in breathing. However, his tests brought new information. At first glance, the tumor looked to be pressing against the thin membrane wall that separats the throat from the top of the spine. If the tumor was pressing against that membrane, it was to be assumed that the cancer has already spread to the spine and that would be game, set, match. You lose, but thanks for playing. Unfortunately, there was no reset button to start all over.

Dr. Sheinbein’s tests showed, however, that the tumor was not pressing against the membrane. There was a space no wider than a hair between the membrane and the tumor. I was immediately taken to radiation and custom-fitted with a “mask” so I could begin immediate radiation treatments. That brought a bevy of doctors visiting bedside.

I chuckled a bit while he was talking with me and I apologized for doing so. My twisted mind was playing out a 1940’s movie scenario where the patient says, “Give it to me straight doc, I can take it. How long do I got?” Dr. Sheinbein didn’t hesitate. He told me he was going to cure my cancer. That’s all I needed to hear. At that moment, I shifted into fight gear.

Dr. David George came to see me during my initial treatment period. After an examination, he said that he would be glad to add me to his case load and that I would be seeing more of him in the coming days and weeks. Little did I know that this was the beginning of a doctor-patient relationship that would continue for years. He specializes in medical oncology and hematology and would quarterback the chemo side of my treatment regimen.

Let me tell you why all of this is remarkable. I did not have a dime’s worth of health insurance. Any military help I could hope to receive would take three months to be approved so I could get treatment. The only reason I let this get so far ahead of me is because I thought no one would treat me because I didn’t have money or insurance. But knowing full well that I didn’t have insurance, these doctors took me on. Their motives were simple: No one should die because they don’t have any money.

In all, four doctors accepted me as a patient, including Dr. Peter Scholl, an ENT who ranks as one of the best in the United States. He heard about my case via a fund drive to help with my medical bills, and fully knowing that my medical bills could easily tip the scales into the half a million dollar realm, he accepted me as a patient. Eventually, he would be the surgeon who removed my larynx when the throat cancer decided to make a curtain call. He saved my life.

An unfortunate side effect of all of this is lingering and nasty pain in my throat. I am not talking about a piddly little headache type of pain; I am talking about life-altering pain. Pain that makes you consider options that have no place in a person’s life. I’m guessing that it’s burned tissue that is not able to heal from the intensive radiation treatments.

It took a licensed pain doctor to evaluate my pain treatment. I have a large part of my functional life back because Dr. Matthew Kaplan was able to put together a treatment plan that would allow me to work and live in relative comfort. That level of untreated pain was beginning to make me wonder if it was all worth it. Seriously, it was that bad. Doctor Kaplan recognized that and put my life back together. So what does all of this have to do with Linux or even free and open source software?

Everything.

If it wasn’t for these generous and caring doctors, I would now be three years dead and none of our work from 2012 forward would have taken place. It is due to these doctors that I am able to continue my work with Reglue. That being the case, I would like to announce that each of the seven scheduled leaning centers or public access computer labs will be installed and maintained in the name of doctors everywhere who think of the patient before the money.

The first, a twelve seat facility, is scheduled to go live in February, 2016. It will be the New Hope Technology Learning Center. It will be patterned after our facility at Reglue. This facility will honor the doctors and their technical staff for saving a life without a valid credit card. I literally owe my life to these people. At Reglue, we will do our best to inspire others, regardless of occupation or place in life, to look past bank accounts and insurance cards and see the person in need.

Reglue classroom

The New Hope Technology Learning Center will be patterned after this Reglue classroom.

These facilities will be powered by a global community — a community of millions — because they will operate on free and open source software and Gnu/Linux.

I don’t know if many of you realize just what intense power you have, literally under your fingertips. You have the power to change lives. The tool set, already in place and ready to use, takes about twenty minutes to put into play. That twenty minutes can change a life. It could lead to a child being inspired to amazing achievements in his or her life. You just have to decide if you want to do it — not to the extent Reglue does, we have almost 100 people to make Reglue work — but on an individual basis…?

Twenty minutes can change a life. It’s free and open source software that makes it possible. It cannot get any easier than that.

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Reglue needs a new delivery vehicle in order to continue its mission to deliver computers to school children who can’t afford them. You can help by visiting its Indiegogo page.

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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

4 comments to FOSS Powered Learning Center Name a ‘Thank You’

  • tracyanne

    When you first began to write about what had happened and the hard road you personally faced. I sent you a personal email. I can see the assessment I made then of your strength of character was correct.

  • Mike S.

    @Ken,
    Thanks for such a fantastic, inspiring story. I’m glad you survived, I’m thrilled you met and benefited from the help of such wonderful physicians, I’m sorry you suffered such terrible pain. Special thanks to Diane for having the spirit and strength to get you a formal review from an oncologist. I have to admit, if I were in your shoes I would have despaired at the first diagnosis. But you and your family deserved better – and you got it.

  • Patrick Elliott-Brennan

    Inspirational again, Ken.

    You’ve done great work and I hope you will continue to do so.

    I despair when I read of stories like yours. A health system that requires you to personally have money to obtain the best care is not a health system for the community.

    How many others in your country have not had the luck and support?

    I’m impressed again by your work and your achievements. You’re a credit to the worldwide FOSS community and I always like to read about what you’re up to.

    All the best.

  • Marc T

    I am a keen follower of FOSSforce posts, and Ken’s in particular. I am European, I don’t think Europe is superior to any other place but each time I read about a health care system that is based on people’s credit card, I just get angry.
    This is just nonsense to me.
    That said, I understand the gratefulness obviously. Thank you for sharing your stories.

    All the best,
    Marc