One of the newest patient-written diabetes books on the scene brings a dimension we haven't seen before -- which can be summed up as voicing frustration about life with diabetes in literary journal form.
The author is fellow type 1 Paul Cathcart in the UK, who was diagnosed 21 years ago as a teenager. He worked for years in online media project management, specifically video on demand for clients like GSK, Diageo and Shell's sponsorship of Ferrari F1. But he turned his attention to writing full-time more than five years ago, and last summer he published his first book, Persona Non Grata with Diabetes.
At 424 pages, Paul's book is a lengthy read. To be perfectly honest, I haven't finished it yet, but from the bulk of what I've read I can say there's all kinds of honesty packed into these pages, often in the form of run-on sentences expressing raw takes on real life with diabetes. It's like you're inside Paul's head, seeing and hearing his stream of consciousness.
In many spots, it comes across as resentment -- against a backdrop of a difficult life aside from any health conditions. But there's admirable courage in Paul putting on paper what most of us are probably thinking about D and how the world sees it, but just don't dare to say aloud. Some chapters that stand out are the ones about Paul's struggles in the workplace and about how it can be tough to sleep when you can't stop worrying about high blood sugars or going low.
We had the chance to catch up with Paul for a phone chat recently, and here's what he told us about his book and life with diabetes in his head:
DM) For those who haven't had a chance to read it, how would you describe what your book's about?
PC) Growing up, coming to terms with, and living through the complications of diabetes. An understanding of diabetic emotion over life defining moments. Bridging the gap between professional understanding and who we are.
What's the story on how diabetes entered your life?
I think my real diabetes story, like many others, starts way before diagnosis; it is the build up of life falling apart, even at an early age, as our bodies wilt, as our immune system falters and we are falling between the cracks of social awareness and diagnosis. For me, my ailments paled against childhood stress and domestic abuse, with the typical dry mouth, flu that would not cease or abate and blurred vision — at least seven years before diagnosis.
Like many others I have met through this disease, our failing health was nothing in terms of immediacy compared to the kids bringing knives to school or the kids with leukaemia, or the world of really scary factors the fabric of society has to deal with. And yes, compounding this was no recognized diabetes in my immediate family history, further exasperating diagnosis through the guilt of a single parent mother, who couldn't understand how she missed it.
What's the meaning behind the book title, Persona Non Grata...?
Well, when I was in the early stages of writing the book, I was made aware by a lady in an online forum of just how insulting I'd been, in referring to people with our condition as, 'diabetics.' Use of the term 'diabetic' was foul; only the politically correct term, 'a person with diabetes,' should be implicit in our descriptor. I could almost see her point. We are, after all, a lot more than our disease. Yet on the other hand, this struck me as being the most artificial and distant realisation of what living through diabetes really means, to the extent that it could be used as an excuse by those who don't support us, to be off-hand and deny this as our state-of-being. Hence, 'Persona Non Grata with Diabetes: A self-portrait of the diabetic condition,' to the purpose of sharing this life on a deeply personal level, allowing the outside world to see in and us to shed some light.
So why did you write the book?
I began writing the book in anger. I had received a letter in the post some weeks in advance. It contained no indication of urgency, no bold red writing, no first class delivery. It was lost amongst a pile of equally faceless bank reminders — but it was informing me that I had the first stages of going blind due to complications with the condition and that they (the health sector) would be in touch in a year's time to track the progress of deterioration to determine from there what course of treatment, if any, they could take. And in the mean time I was to, of course, keep my blood sugar level. Feint, terror, panic, guilt, anger; if this was happening to me, then it must be happening to a thousand others every day and I was going to fight for us!
How long did it take you to finish the book?
Four and a half years.
Did you get anything from writing it, like some relief from your anger?
Fifteen years minimum added to my life expectancy! And understanding just how this disease impacts on my day-to-day emotional wellbeing is priceless.
What's the feedback and response been like from the Diabetes Community?
It's the best feeling in the world, when a parent of a child with type 1 diabetes tells you that your work has helped them understand their child more. And it means the absolute world when complete strangers who live on the other side of the globe tell you that your book has made them feel less alone. I have compiled the first 58 reviews received right here at this link.
What makes yours different from other diabetes books written by patients?
The book is written entirely as a 'conversation over drinks with friends.' This is not a medical academia. This is tearing my heart out, insight, and very adult in nature.
Plans to write anything else?
I just completed a play, which is with the agents and theatres now, and I'm working on a novel at the moment -- not about diabetes.
Released in August 2013, Paul's book, Persona Non Grata with Diabetes, is available on Amazon for $15.26 in paperback, $23.50 in hardcover and $2.50 in Kindle e-format. It's also available on Amazon for those outside the U.S.
But before you go ahead and purchase a copy, here's your chance to win one for free...
A DMBooks Giveaway
Interested in winning a signed copy of Paul Cathcart's new book, Persona Non Grata with Diabetes? Here's your chance to win a free, autographed copy of your own!
1. Post your comment below and include the codeword "DMBooks" somewhere in the the text to let us know that you'd like to be entered in the giveaway.
2. You have until Friday, Oct. 31, 2014, at 8 p.m. PST to enter. A valid email address is required to win.
3. The winner will be chosen using Random.org.
Good luck to all!
This contest is now closed. Congrats to Cole McLister, who Random.org selected as the winner of this giveaway for a signed copy of Paul's book!