Tuesday, February 12, 2013
Spare a Rose, Save a Child! This Valentine's Day
My recent interest in the progress of the artificial pancreas has made me realize that while this helps fan the flames of hope here, there are also certain things we take for granted, like the widespread availability of insulin in the United States. To be sure, it comes at a certain expense, more significant for some than for others, and depending upon the availability and the terms of one's prescription plan, but it is widely available. Picture your drive to work or school this morning. Odds are you passed bottles and bottles of insulin, stacked inside the refrigerators of the many pharmacies scattered around even our smaller towns. But many other countries are different. Insulin is not so widely available, and as others have pointed out on their D-blogs this week, type 1 diabetes in other countries may still most likely be a quickly fatal disease, due largely to lack of availability of insulin and other basic elements of diabetes care. So please join me and others in the "spare a rose, save a child!" campaign, and consider donating to this great cause so that insulin, which we often take for granted here in the United States, might be made available to someone else less fortunate beyond our borders. Donate here, please. Thank you.
Monday, February 4, 2013
Long hiatus, ended well
I thought I'd be really into this blogging thing after Children With Diabetes Friends For Life 2012 in Orlando. I had "found my voice." I posted twice. Then I apparently lost my voice. Actually, I broke my hand. Couldn't type, then everything just became too busy, which I believe is the most common American Excuse, and I didn't post again. I wanted to post, I meant to post, but I never took the time to do it. I pretty much just stuck to Facebook for miniposts (read: status updates) and reading others' blogs.
And then a funny thing happened. Six months had passed and suddenly it was time for the very next CWD event, the one I'd been looking forward to ever since FFL ended in July: Conference on Technology 2013 in Crystal City, Virginia.
I learned a ton. I learned why I should refer to it as #cwdtech. I learned why I cry at the end of every event like this one, without a shred of sadness. I learned about friendship and kinship and the T1D-bond that I already knew much about, but my understanding of all of these evolved so very much more in the span of about 36 hours. I learned of some of the differences between online support and how invaluable and constant it can be, and about offline, in-person support and how incomparable but fleeting it can be. I learned about paying attention to your internal signals that tell you what you are passionate about and what you are ambivalent about. I learned about my kids--both of them--in ways I didn't expect. I learned about my wife and learned (again) about how much more thanks I owe her than I had ever thought before, when I already knew that I owed her so much.
But most of all I learned about hope. More specifically, about watching in wonder as dormant and forgotten hope is revived before your very eyes into something stronger and more vital than it ever was before you lost it.
When I was diagnosed with type 1 diabetes, approaching 24 years ago, I was told by my endocrinologist that research was advancing more quickly than ever before, and that we'd have a cure in 5 years, 10 at most. I read the research updates, fueling my hope, and waited eagerly for weeks, and then months, and then years...and then forever, because I never found another update to numerous threads of such hopeful research, just silence. That hurt. I began eventually not to let my hopes be raised and leave me vulnerable to having them dashed. I disengaged from any sense of T1D community. I stopped paying attention to research. I had lost hope, and I had lost faith in hope.
When my DiaDaughter was diagnosed 3 years ago, I had to let my hopes be rekindled. There was this "artificial pancreas" concept that was taking traction, with the better pumps and improving continuous glucose monitors on the market, but which seemed like too much to hope for. I attended a session on them at CWD Focus on Technology last year, and my hope began to awaken, a warm glow. I could see the dots connected and envision what it might look like and do, but as the presenter pointed out, there were many steps along the path to a closed loop artificial pancreas, and they'd have to be hurdled one at a time. He started to enumerate those hurdles, and before long the goal seemed very far away--imaginable, but distant.
So it was with some trepidation that I attended another session on ostensibly the same topic yesterday. What I was treated to was beyond my wildest expectations. I had low expectations, to be sure, but I had no idea that almost all of the hurdles I had heard about just 12 months earlier had essentially been solved. I was expecting a complex scientific presentation, and it was. I wasn't expecting such an emotional--actually ecstatic--deep, passionate reaction to this scientific presentation. I wasn't expecting my largely forgotten, sputtering hope to come roaring back with such force, and more force than it had ever had before I'd even lost it in the first place.
I am happy now to say that my hope is alive, and it is strong. It is easily now stronger than it has been at any other time in the past 23 1/2 years. Though it was strong at first, it had no real form. It was entirely emotional and based on faith in my endocrinologist, his expertise, and his own sense of hope, to which I had to defer as a surrogate for my own. Today, though, I feel like I have seen the future, and a future which is not at all far away. I have seen it in tremendous detail, for that is how it was shown to me. I have seen pictures, and data, and technology, and journal articles, and a device, and a patent, and--perhaps most importantly--the unbridled passion of a man who I KNOW will make it happen. I know this not because his passion is contagious (it is), not because his results are stunning (they are), but because he has already made it happen. So far for only two days at a time, but that's because his study had to stop after two days per subject. Next week he'll start studying it for six days at a time, and I know it will work, because if it doesn't, he won't rest until he makes it so. He's racing the clock, the four short years until a promise comes due which he made to his son with T1, the son he promised when he was diagnosed that he'd have this system for him when he goes to college.
I wouldn't have believed him when he made that promise. But I also wouldn't have believed what I saw yesterday.
The wonderful feeling now is that I do believe. I love this feeling. I've never had it before. I allow myself again to hope, because I now truly believe.
And then a funny thing happened. Six months had passed and suddenly it was time for the very next CWD event, the one I'd been looking forward to ever since FFL ended in July: Conference on Technology 2013 in Crystal City, Virginia.
I learned a ton. I learned why I should refer to it as #cwdtech. I learned why I cry at the end of every event like this one, without a shred of sadness. I learned about friendship and kinship and the T1D-bond that I already knew much about, but my understanding of all of these evolved so very much more in the span of about 36 hours. I learned of some of the differences between online support and how invaluable and constant it can be, and about offline, in-person support and how incomparable but fleeting it can be. I learned about paying attention to your internal signals that tell you what you are passionate about and what you are ambivalent about. I learned about my kids--both of them--in ways I didn't expect. I learned about my wife and learned (again) about how much more thanks I owe her than I had ever thought before, when I already knew that I owed her so much.
But most of all I learned about hope. More specifically, about watching in wonder as dormant and forgotten hope is revived before your very eyes into something stronger and more vital than it ever was before you lost it.
When I was diagnosed with type 1 diabetes, approaching 24 years ago, I was told by my endocrinologist that research was advancing more quickly than ever before, and that we'd have a cure in 5 years, 10 at most. I read the research updates, fueling my hope, and waited eagerly for weeks, and then months, and then years...and then forever, because I never found another update to numerous threads of such hopeful research, just silence. That hurt. I began eventually not to let my hopes be raised and leave me vulnerable to having them dashed. I disengaged from any sense of T1D community. I stopped paying attention to research. I had lost hope, and I had lost faith in hope.
When my DiaDaughter was diagnosed 3 years ago, I had to let my hopes be rekindled. There was this "artificial pancreas" concept that was taking traction, with the better pumps and improving continuous glucose monitors on the market, but which seemed like too much to hope for. I attended a session on them at CWD Focus on Technology last year, and my hope began to awaken, a warm glow. I could see the dots connected and envision what it might look like and do, but as the presenter pointed out, there were many steps along the path to a closed loop artificial pancreas, and they'd have to be hurdled one at a time. He started to enumerate those hurdles, and before long the goal seemed very far away--imaginable, but distant.
So it was with some trepidation that I attended another session on ostensibly the same topic yesterday. What I was treated to was beyond my wildest expectations. I had low expectations, to be sure, but I had no idea that almost all of the hurdles I had heard about just 12 months earlier had essentially been solved. I was expecting a complex scientific presentation, and it was. I wasn't expecting such an emotional--actually ecstatic--deep, passionate reaction to this scientific presentation. I wasn't expecting my largely forgotten, sputtering hope to come roaring back with such force, and more force than it had ever had before I'd even lost it in the first place.
I am happy now to say that my hope is alive, and it is strong. It is easily now stronger than it has been at any other time in the past 23 1/2 years. Though it was strong at first, it had no real form. It was entirely emotional and based on faith in my endocrinologist, his expertise, and his own sense of hope, to which I had to defer as a surrogate for my own. Today, though, I feel like I have seen the future, and a future which is not at all far away. I have seen it in tremendous detail, for that is how it was shown to me. I have seen pictures, and data, and technology, and journal articles, and a device, and a patent, and--perhaps most importantly--the unbridled passion of a man who I KNOW will make it happen. I know this not because his passion is contagious (it is), not because his results are stunning (they are), but because he has already made it happen. So far for only two days at a time, but that's because his study had to stop after two days per subject. Next week he'll start studying it for six days at a time, and I know it will work, because if it doesn't, he won't rest until he makes it so. He's racing the clock, the four short years until a promise comes due which he made to his son with T1, the son he promised when he was diagnosed that he'd have this system for him when he goes to college.
I wouldn't have believed him when he made that promise. But I also wouldn't have believed what I saw yesterday.
The wonderful feeling now is that I do believe. I love this feeling. I've never had it before. I allow myself again to hope, because I now truly believe.