“Almost everything is noise, and very few things are exceptionally valuable,” writes Greg McKeown in Essentialism: The Disciplined Pursuit of Less. McKeown’s book has been one of those “life-changers” for me. We are reading it for the second time. While most “minimalist” books focus on owning less stuff, Essentialism focuses on doing less, but doing better. Turning down the many good options, for the few great (and, often more daring) possibilities.
On Friday, Nicole had a echogram on her heart. We haven’t seen the test results but we already know what to suspect. Over the last many months she has not been able to maintain blood pressure whenever she exerts herself. And exerting herself includes common activities like eating a bowl of food. It’s as if her body is saying: “I have energy for doing no more than two things at a time, and one of those things is keeping your heart beating.” So if she eats, she needs to lie down, or she’ll be falling down.
One of the jobs of the kidneys is to excrete excess minerals. Without that organ doing its job minerals deposit in the arteries and the walls of the heart making it more difficult to circulate blood. Dialysis every other day is no substitute for kidneys filtering 100ml of blood every single minute.
The “expected survival of a 55-year-old person on dialysis is only 5 years,” says the United States Renal Data System (USRDS) 2009 report. Nicole is 51 and has been on dialysis for ten years now. She has already beaten the odds by five years. As dire as that sounds, keep in mind there are plenty of exceptions with people living two or three decades on dialysis. It seems lifestyle and diet are the biggest factors.
As things become more challenging we have been reflecting and refining on what is really essential to our lives (and the preservation of life). We had intended to expand DiabaticDharma.com and start publishing books and other publications to share the information, research and experiments we have collected so far. But that is a mammoth project, and frankly one I don’t have too much passion for.
I read, write and research so much about healing in order to help my wife, not because it is something I would pursue otherwise. In truth, writing speculative fiction is where my natural inclinations lie. 10 years ago I was self-publishing and selling fiction on the internet (long before Kindles and Kobos). I’ve never put down the pen with hundreds of hand-written pages piling up in the fire safe and several novellas near completion.
Hence, we’ve decided that for my own mental health, if nothing else, I’ll be focusing what extra time I can on the fiction writing, resurrecting my old works and producing new ones. It may or may not pull in more, less or the same amount of money as publishing diabetic information. Hard to say. But not hard to say what feels more right, more “essential.” Maybe I’ll write an Amazon bestseller and pay for Nicole’s $49,300 dental surgery.
We’ve been considering shutting down DiabeticDharma altogether. But, for the moment (at least three months) I will continue with weekly blog posts. First, because I promised those who donated towards the dental surgery that we would document the results on this blog. Two, because these blog posts have raised about $4000 for the dental surgery from appreciative readers. And three, because writing helps me put this harrowing journey we are on into some calm perspective.
Despite Nicole’s mounting problems, we are moving forward, often in a zig-zag fashion, with what we have found works and what Nicole decides to test next. For example, we know fasting, a plant-based diet, topical amniotic therapy and the Buteyko breathing method help with everything from healing foot wounds, to maintaining hemogloblin to clearing the walls of the heart. Nicole has been exploring new avenues including anti-fungals, probiotic treatments and self-inquiry (not to mention getting more sleep).
So, I will use this blog to continue documenting our efforts to distill what is essential for not only living with T1D and renal failure, but what may even reverse it. Because, as we’ve learned the hard way, there’s lots of “good” things you can do to improve your health. But what there is not enough of is time to do them all. We need to find which few approaches produce the best return (regardless of how small or slow) and focus on them.
To that end, the blog may not be as full of citations as it has been in the past. It’ll mainly be a place for me to document our journey together and try to make sense of it. Maybe one day we’ll compile them into a book. Either way, I hope the posts help others who read them. And, if so, those readers will continue to donate towards the dental surgery, which remains as one of the most hopeful “shortcuts” Nicole might have to living a long and fulfilling life.
Thinking outside the T1D Matrix,
–John C. A. Manley
P.P.S. For those who think T1D can’t be cured check out: Did a Random Act of Genetics Really Cure Daniel Dawkins of T1D?