Friday, October 15, 2010

Friday Thoughts: Quotes

I have mentioned this before, but for those of you who weren't aware of it, in the last few months, blogging has taken a back seat to other priorities (mainly work). Actually, I don't mind and I rather enjoy what I'm doing, but it also means that spare time to blog, Tweet or anything else in the social media space has been pretty much the last thing I do (if at all) when I get home from work each night. Alas, I haven't disappeared, and had something of an inspiration last night and this morning, which was a random collection of some great quotes that I encountered over the last few days. Several have been courtesy of the diabetes online community (the "D-OC"), while others came from some less likely places. But I thought I would share those with you today. It's not heavy content, but I hope it will make readers think!

The first quote comes from fellow D-OC member Riva Greenberg's recent Huffington Post article "Curing Diabetes: How Close Are We?", in the first of a terrific 2-part interview with the Diabetes Research Institute's (DRI) Scientific Director, Dr. Camillo Ricordi at the University of Miami's (I should also note that this is in Miami, Florida, because someone once asked me if I meant Miami University in Ohio) Miller School of Medicine. His priceless quote is one I may very well add to my running collection of quotes that I keep in the right hand margin of my blog under the "D-Quotes" heading. When Riva asked Dr. Ricordi "What Keeps You Going?", he began his response with this gem:

Most diabetologists tell patients, "You can live a long, acceptable life with diabetes. It is just an inconvenience." It's easy to think diabetes is acceptable if you don't have it. Without being dramatic, because the treatment has improved significantly, it is still not acceptable.

In fact, over the years, I have heard how acceptable and great life can be with diabetes, but NEVER from an endocrinologist or diabetes educator who actually had diabetes themselves (and I have had a few over the years). The reality is these people are reciting well-rehearsed lines without even thinking about them, and sometimes, I find it downright insulting. This is one of the key differentiators that makes the DRI such an amazing research facility: the staff there actually gets it. Life with diabetes stinks, and no treatment is exactly the cat's meow. I wouldn't dream of diverting the DRI's attention from it's mission to eradicate diabetes by actually curing it, but let's just say that many clinical practitioners (why do we say doctors "practice" medicine, shouldn't they be done with practice by the time they start treating patients?!) should spend some time learning this valuable skill: understanding what it means to live life with a CHRONIC disease.

Ninjabetic's Analogy on Life With Diabetes

Another gem comes courtesy of George Simmons' (sometimes known as THE "Ninjebetic") Facebook page from Thursday, October 14, 2010 at 1:51am, although I was not able to find a permalink to his brilliant analogy (one of his followers has it HERE) that might be useful in trying to explain life with a chronic disease like diabetes really means. Most people out there believe its merely a matter of willpower and following some basic rules. Unfortunately, even when a person DOES follow the ever-changing rules of diabetes management (and trust me, over the past 30 years, I have seen a lot of changes, and not all of them have been great progress ... for example, the demands placed on a patient with diabetes has grown steadily, as has the cost of care, while guarantees of a life without complications remain completely absent from the equation). Without babbling too much, here was Ninjabetic's classic analogy which I think I might actually use when trying to explain this disease when someone says something I think is utterly stupid about diabetes:

Imagine having to pump your own heart because it didn't do it by itself. And when you want to sleep you have to pump it slower. For exercise you would have to speed it up. You would have to know the rate of pumping for every activity. Do you think you could do it? Do you think that would be easy?

I would just add that if you forget to pump your heart, you are likely to die quickly. The same is true for type 1 diabetes: failure to take insulin will quickly result in DKA, which is deadly. No person with type 1 has the luxury of skipping their "medication" (meaning insulin) for long. If you're a reporter writing on World Diabetes Day next month, please learn this!

NYC MTA Train of Thought™ Campaign

Beyond that, the next quote comes from the New York City Metropolitan Transit Authority's (a.k.a. the "MTA") Train of Thought™ campaign which features quotations from what several NYC universities including Columbia and New York University and their humanities professors believe are some of the world's great thinkers. These quotes appear in some of the MTA's "Subtalk" posters that appear in NYC subway cars. I have seen the following poster on my commute to and from work each day, and I honestly think it's true.

I have lifted the graphic for this particular one because I kind of like it, but for those of you reading it via an RSS feed, I also provide the text:

"The whole history of science has been the gradual realization that events do not happen in an arbitrary manner, but that they reflect a certain underlying order, which may or may not be divinely inspired."
Stephen W. Hawking, from his book "A Brief History of Time"

That one may be a bit deeper, but in essence, I think it does speak to how science and medicine has tended to view things from the paradigm that some things, such as autoimmunity, are isolated incidents. That's probably untrue. The reality may very well be that the man-made environment we've all helped to create, whether it is pollution, or widespread vaccination programs (which are widely regarded as beneficial) might in fact be planting the seeds for unintended consequences, such as autoimmune diseases -- and the incidence (including for type 1 diabetes mellitus) is growing rapidly. Recently, there was some analysis done on the DNA of some Eqyptian mummies that suggest that yes, even cancer is probably man-made. So if man's collective actions caused all of these diseases and ailments, why is it ever OK to blame the patients for getting these diseases? The answer is that it is NOT OK.


George said...

I am truly honored to have a quote of mine here. I was trying to explain to someone what us type 1's have to do.

Since most people understand what their heart does and how it works, I figured this was a good analogy. And like you said, if you stop you die. I get tired of people thinking it's no biggie. What we are trying to do is actually impossible. We can only do as well as we can with what we have. We can never match what our internal organs are supposed to do on their own.

Brenda Bell said...

One thing we forget is that paradoxically, the ability for medical practice to lengthen and/or preserve the lives of individuals with genetic-linked diseases to, and through, the age of reproduction increases the likelihood that those genes will remain in, and propagate through, the general population in increasing numbers.

One need only look through the list of prominent bloggers with diabetes who have chosen to bear or sire children after diagnosis (or knowing that Type 1 diabetes runs in their families) to understand this.

How great an effect this has upon the general gene pool is, of course, something that would need serious statistical analysis.

Kendra said...

Love this post, Scott. It's so hard to explain to people without the disease why the concept of "compliance" is ludicrous (and why it could be insulting to be told your life is just "inconvenient"). George hit the nail on the head again when he noted that it's impossible for us to replicate healthy body functioning with our current knowledge and technology. In the age of quick of fixes and slick iPhones, that's a tough nut for people without chronic disease to crack. Wish this blog post could make it on the next Today show instead of a blurb about the greatest new diet.