I am very pro-research on general principle. The exception lies with “studies” (like this example) which measure only specific short-term endpoints that are inherently hard to measure & quantify.
Things like clinical & economic benefit & those associated “outcomes”.
Everyone has a different definition of “success” in these cases. Also just because it doesn’t show something concrete in dollars & cents or in data points doesn’t mean it doesn’t have value.
I want to thank David M. Perry for calling my attention to something distressing last night. It both sickened & shocked me, but then really as much as it “ground my gears” also had me examining my own thoughts & attitudes towards the two rare diseases I’ve been living with for so long.
For those who weren’t already aware, I was hit head-on by another vehicle on October 8th & just arrived back home yesterday. My blog archive details some of the unique challenges presented to my lungs as a result. (Though I know I am lucky to be alive & am; I’m also truly thankful I did not need vast surgeries or invasive treatments or sustain more serious injuries). I arrived home yesterday finally clear of most pressing & concerning complications. Getting my life back to normal was welcome, but inevitably it was also tempered with some headaches & hiccups…
I’m not going to dance around this subject any longer. It’s something I’ve sat with & ruminated on for years. It has caused so much ambivalence & mixed emotion for me at points. I preface this post with an important distinction from most sources of this “trend” or “problem” I see circulating in media & cyberspace. People are being sincere in their views in sharing why they view me as an inspiration. I see this because quite a few of them actually knew me before my illnesses were apparent (or as outwardly so) & also know me after. (I know they see me, & all of me). Others have known me since I was very young & grew up with me. Some of these people may have never even known (until my need for transplant) that I was struggling with two rare diseases for most of my life. They admire me for other things than my advocacy & fight. So when they say I’m inspirational they don’t mean it in a placating or demeaning way. That is why, while I understand the backlash against inspiration porn, I focus on the intent of of the message from the person saying those words to me & our relationship to each other before I even begin to open my mouth…
I recently found a great Kickstarter project called Dr. Poket for medication management & I did this blog post about it. But one of my support group friends/Gift of Life stay buddies posted about this IndieGoGo project the same day (on Facebook) I found this company. The company’s product account also connected with me on Twitter that same morning. I was very excited about this device too because one thing that will never go away for me – either now, or after my lung transplant – is the need to measure my lung function on a regular basis…
For the past 8 years or so, I really have been wanting to write on a regular basis. Although, I’ve never felt right about rigidly disciplining myself to do so because when I have it comes off contrived. Charles Bukowski did it on a regular basis through poetry, novels, & other works. It was more inspired than not (even he admits it). But for me, it always just seemed to come when it felt like it; even when I would try otherwise to coax it out, until very recently. Feels like lately a day without blogging seems an incomplete day…
This article has been circulating around the web quite a bit. I’ve seen it shared on both Facebook & Twitter. For some, it’s mind-blowing; others not-so-much. Money isn’t everything, but it can be influential. Yet it’s not all there is.
So today, I’m trying not to think. Just be. No schedule or plans or map. No deep thoughts or insights.
I guess part of the reason I stayed at Medscape for as long as I did (8 years) was because I enjoyed working on content for healthcare professionals. Doctors, nurses, pharmacists – I met many of them “virtually” or otherwise. Some of them really showed me compassion not only as a colleague but as a person trying to navigate their way through the healthcare system & give back to others & make sense of my own situation.
The announcement of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate here for just a moment over this year’s choice of theme & slogan.
AS I LIVE & BREATHE 