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.
Thursday, July 26, 2012
Proud DiaDaddy
I was stuck at work tonight, still cleaning up from a crippling network outage from 3 days ago (!) that left me back-entering data. Sounds fun, right?
My cell phone buzzed, I looked at the screen and saw it was my wife, and answered. I had no idea what the string of shrieking that ensued meant. It sounded happy, but the line dropped. The phone rang again, and this time my DiaDaughter said happily, hurriedly, but this time quite clearly, "I did my own site change Daddy! I did it all by myself!"
There are no words to express my elation at hearing her joy and her pride in doing this. I hope I matched hers when I shouted how proud I am of her, how I can't believe it, how she should be so proud of herself, and tell me everything about it!!!
She went on and on, describing everything in detail, her words flying out at a speed she inherited from her mother. The words were all great, but the only thing that really mattered was how clearly her sense of pride and accomplishment drove them all from her heart to her lips.
But, as I am wont to do, I suffered a moment of mixed emotions. I was sad and angry that she should have to violate her body in ways most kids don't. I blamed diabetes for this screwed up situation that should make a kid giddy about poking herself with a needle, then call her dad and gush in unrestrained glee about it.
But just as quickly those negative thoughts evaporated. Because you know what? The bottom line is that she was giddy. She did call me and gush in unrestrained glee. I've never heard her happier, or prouder (or giddier or more gleeful, for that matter). She'll never forget this day or the emotional high she experienced--and deserves--and none of that would have happened today if she didn't have diabetes.
My cell phone buzzed, I looked at the screen and saw it was my wife, and answered. I had no idea what the string of shrieking that ensued meant. It sounded happy, but the line dropped. The phone rang again, and this time my DiaDaughter said happily, hurriedly, but this time quite clearly, "I did my own site change Daddy! I did it all by myself!"
There are no words to express my elation at hearing her joy and her pride in doing this. I hope I matched hers when I shouted how proud I am of her, how I can't believe it, how she should be so proud of herself, and tell me everything about it!!!
She went on and on, describing everything in detail, her words flying out at a speed she inherited from her mother. The words were all great, but the only thing that really mattered was how clearly her sense of pride and accomplishment drove them all from her heart to her lips.
But, as I am wont to do, I suffered a moment of mixed emotions. I was sad and angry that she should have to violate her body in ways most kids don't. I blamed diabetes for this screwed up situation that should make a kid giddy about poking herself with a needle, then call her dad and gush in unrestrained glee about it.
But just as quickly those negative thoughts evaporated. Because you know what? The bottom line is that she was giddy. She did call me and gush in unrestrained glee. I've never heard her happier, or prouder (or giddier or more gleeful, for that matter). She'll never forget this day or the emotional high she experienced--and deserves--and none of that would have happened today if she didn't have diabetes.
Saturday, July 21, 2012
Welcome to t1works
So here it goes...my first post on my first blog. I'm new at this, so bear with me, please spread the word, comment if you'd like, and keep coming to visit.
I've been thinking a lot lately about diabetes and work. Not "work" as in my job, but work in every sense. I've met a lot of fellow T1D'ers over the years, and an increasing number relatively recently, which has been absolutely energizing. We all agree that type 1 diabetes takes a lot of work. It's not work that any of us asked for. It's not work we really want. It's not work we especially enjoy. But we can't just quit this work and go looking for something else. No matter our true professions, we're stuck with this work too. Sometimes it feels like my main job. Sometimes it feels like a second job. But it doesn't go away. I get no days off, no weekends, no vacations, no sick leave. Just a 24 hour shift, every single day. So I'd better make the most of it. I need to make type 1 work. We all need to make type 1 work for us.
For years I worked at doing the things I was supposed to do. I checked my glucose many times a day, I counted carbs as best I could, I asked my endocrinologist if I could take insulin more frequently (each time I ate, plus bedtime) than he recommended (twice a day, mixed NPH and Regular) because it seemed to me life could be more flexible and spontaneous that way. I struggled to do it, but eventually managed to add a vigorous, regular exercise program to my life. But something was still missing. I couldn't find it in any endocrinologist, though I certainly tried in many. I couldn't find it in medical school, residency, or practicing as a family doctor since then. I had pretty much given up looking. I was going along on autopilot, doing all of the work I had learned to do. I had stopped keeping up on the latest research, because the cure I was promised within five years of my diagnosis in 1989, and which I saw lurking in every research report or news story I read, seemed to vanish--those reports always seemed so promising, but there was never any follow up, and they just disappeared without another word.
So I stopped actively hoping and waiting. I became much more passive. I kept on doing the same type 1 work I had always done, with unfortunately varying degrees of success, but I didn't think about it a whole lot. I did it without paying much attention.
I was grateful, relieved, elated, flattered, enchanted when I met and later married the woman who would become the most important thing in my life. She accepted me and loved me wholly, diabetes and all, just as it should be but didn't seem possible because I had a chronic disease and who would want me after all. This incredible woman wasn't fazed by my having T1. We lived and studied and worked and played and enjoyed several fantastical years together. Then we had twin daughters, and my already wonderful life suddenly got exponentially better. "See?" I thought, "Type 1 won't stop me. I can make type 1 work. I'm not even working that hard at it. I know what I'm doing. I'm fine staying on autopilot."
Then everything changed. One of my daughters was diagnosed with type 1, quite unexpectedly and quite devastatingly, at the age of 7, and suddenly I had to work harder. And better. I had to work more on my own type 1, 24/7. But now I had a new 24/7 type 1 job, taking care of her diabetes too.
Even more than before, that missing something still left me feeling a conspicuous void somewhere inside. Luckily, and in a life altering way, my wife found a family type 1 diabetes conference for us to attend, and for the first time probably ever, I was surrounded by families of children with type 1. I was sort of prepared for that. I wasn't at all prepared for being surrounded by the large number of adults there with type 1, working for the organization, presenting the seminars, working for industry, just being there. I learned a ton, bonded a ton, and when the weekend drew to a close and the breakneck pace of the information- and activity-packed itinerary ground to a sudden halt, the emotions all crashed in at once. It was and is one of the most incredible experiences I've had, and it energized me in unbelievable ways. I worked much harder at my diabetes after that, and at my daughter's. After 21 years I finally ended my resistance to switching to a pump. I started learning, engaging, communicating. I knew I had to go back to the conference the following year.
So I did. I learned much less that time, as I had learned so much at the previous conference and during the year in between. But the bonding was the same. This time I was telling parents of newly diagnosed kids the things others had told me the year before. I thought I was getting much less out of the experience, but then the weekend ended, and the exact same emotions crashed down in exactly the same way. The bonding and the sharing and support were identical to the year before.
I realized then how critically important it is to attend as many events like this as I can, and turned next to Children With Diabetes and their Focus on Technology conference. It was bigger, with a different goal and a different target audience. I met some amazing new people, and the seeds of some new bonds were planted. That set the stage for our first Friends for Life, and I can't even begin to describe that here, and will attempt to do so later. Suffice it to say for now, though, that I don't ever plan to miss another FFL.
I yearn now for events like these. They don't happen often enough, or sometimes near enough, but they keep me going, they keep me focused, and they keep me off of autopilot. They make me want to do my ever important T1 work better, and harder, and smarter. They make me want to be more in charge. I count down until the next event, until those feelings can return, and the electricity that comes with them. There is nothing else like gathering, connecting, talking, and just letting things unfold.
But it's not the events by themselves; they'd be nothing without the people there. To me, it's the community that works best about type 1, and bringing that community together has no comparison.
So while I'd wait impatiently between gatherings, these touch points with others who share in this experience, I'd feel isolated again with my T1 and my daughter's. Only very slowly and very recently has it dawned on me how much support there can be now at any time; I just hadn't known where to find it: when we can't be together in person, we can be together online. Online didn't functionally exist when I was diagnosed. But we have it now, and it's critical.
The best way I know to build this online community and to forge these ties is to visit the community's blogs, subscribe to them if you can, share them with others, and post comments to get discussions going.
I'm inspired by many, from my wife Tamara, to my daughter, to Kerri Sparling (sixuntilme), to Scott Johnson (scottsdiabetes) and Kelly Kunik (diabetesaliciousness), to name a few. So now I blog too. I'm just finding my voice, and I'm just finding my message, but so far it's this:
t1works.
It has to.
I've been thinking a lot lately about diabetes and work. Not "work" as in my job, but work in every sense. I've met a lot of fellow T1D'ers over the years, and an increasing number relatively recently, which has been absolutely energizing. We all agree that type 1 diabetes takes a lot of work. It's not work that any of us asked for. It's not work we really want. It's not work we especially enjoy. But we can't just quit this work and go looking for something else. No matter our true professions, we're stuck with this work too. Sometimes it feels like my main job. Sometimes it feels like a second job. But it doesn't go away. I get no days off, no weekends, no vacations, no sick leave. Just a 24 hour shift, every single day. So I'd better make the most of it. I need to make type 1 work. We all need to make type 1 work for us.
For years I worked at doing the things I was supposed to do. I checked my glucose many times a day, I counted carbs as best I could, I asked my endocrinologist if I could take insulin more frequently (each time I ate, plus bedtime) than he recommended (twice a day, mixed NPH and Regular) because it seemed to me life could be more flexible and spontaneous that way. I struggled to do it, but eventually managed to add a vigorous, regular exercise program to my life. But something was still missing. I couldn't find it in any endocrinologist, though I certainly tried in many. I couldn't find it in medical school, residency, or practicing as a family doctor since then. I had pretty much given up looking. I was going along on autopilot, doing all of the work I had learned to do. I had stopped keeping up on the latest research, because the cure I was promised within five years of my diagnosis in 1989, and which I saw lurking in every research report or news story I read, seemed to vanish--those reports always seemed so promising, but there was never any follow up, and they just disappeared without another word.
So I stopped actively hoping and waiting. I became much more passive. I kept on doing the same type 1 work I had always done, with unfortunately varying degrees of success, but I didn't think about it a whole lot. I did it without paying much attention.
I was grateful, relieved, elated, flattered, enchanted when I met and later married the woman who would become the most important thing in my life. She accepted me and loved me wholly, diabetes and all, just as it should be but didn't seem possible because I had a chronic disease and who would want me after all. This incredible woman wasn't fazed by my having T1. We lived and studied and worked and played and enjoyed several fantastical years together. Then we had twin daughters, and my already wonderful life suddenly got exponentially better. "See?" I thought, "Type 1 won't stop me. I can make type 1 work. I'm not even working that hard at it. I know what I'm doing. I'm fine staying on autopilot."
Then everything changed. One of my daughters was diagnosed with type 1, quite unexpectedly and quite devastatingly, at the age of 7, and suddenly I had to work harder. And better. I had to work more on my own type 1, 24/7. But now I had a new 24/7 type 1 job, taking care of her diabetes too.
Even more than before, that missing something still left me feeling a conspicuous void somewhere inside. Luckily, and in a life altering way, my wife found a family type 1 diabetes conference for us to attend, and for the first time probably ever, I was surrounded by families of children with type 1. I was sort of prepared for that. I wasn't at all prepared for being surrounded by the large number of adults there with type 1, working for the organization, presenting the seminars, working for industry, just being there. I learned a ton, bonded a ton, and when the weekend drew to a close and the breakneck pace of the information- and activity-packed itinerary ground to a sudden halt, the emotions all crashed in at once. It was and is one of the most incredible experiences I've had, and it energized me in unbelievable ways. I worked much harder at my diabetes after that, and at my daughter's. After 21 years I finally ended my resistance to switching to a pump. I started learning, engaging, communicating. I knew I had to go back to the conference the following year.
So I did. I learned much less that time, as I had learned so much at the previous conference and during the year in between. But the bonding was the same. This time I was telling parents of newly diagnosed kids the things others had told me the year before. I thought I was getting much less out of the experience, but then the weekend ended, and the exact same emotions crashed down in exactly the same way. The bonding and the sharing and support were identical to the year before.
I realized then how critically important it is to attend as many events like this as I can, and turned next to Children With Diabetes and their Focus on Technology conference. It was bigger, with a different goal and a different target audience. I met some amazing new people, and the seeds of some new bonds were planted. That set the stage for our first Friends for Life, and I can't even begin to describe that here, and will attempt to do so later. Suffice it to say for now, though, that I don't ever plan to miss another FFL.
I yearn now for events like these. They don't happen often enough, or sometimes near enough, but they keep me going, they keep me focused, and they keep me off of autopilot. They make me want to do my ever important T1 work better, and harder, and smarter. They make me want to be more in charge. I count down until the next event, until those feelings can return, and the electricity that comes with them. There is nothing else like gathering, connecting, talking, and just letting things unfold.
But it's not the events by themselves; they'd be nothing without the people there. To me, it's the community that works best about type 1, and bringing that community together has no comparison.
So while I'd wait impatiently between gatherings, these touch points with others who share in this experience, I'd feel isolated again with my T1 and my daughter's. Only very slowly and very recently has it dawned on me how much support there can be now at any time; I just hadn't known where to find it: when we can't be together in person, we can be together online. Online didn't functionally exist when I was diagnosed. But we have it now, and it's critical.
The best way I know to build this online community and to forge these ties is to visit the community's blogs, subscribe to them if you can, share them with others, and post comments to get discussions going.
I'm inspired by many, from my wife Tamara, to my daughter, to Kerri Sparling (sixuntilme), to Scott Johnson (scottsdiabetes) and Kelly Kunik (diabetesaliciousness), to name a few. So now I blog too. I'm just finding my voice, and I'm just finding my message, but so far it's this:
t1works.
It has to.
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