I have a paper to be writing... but I'm a bit too flustered after reading this thread to think of anything but my feelings about it.
This is a response to this forum:
http://forums.childrenwithdiabetes.com/showthread.php?t=61587
I'm choosing not to post on the site, because I need a place to... vent? Also, my post would be about a day too late- others have already made similar statements, and I don't really want to create drama... I just want to say my piece in a more sheltered environment.
To give this a bit of context, the site CWD (children with diabetes) is a forum site where parents post about their children with diabetes. The current issue was about an interview between diaTribe and Jeffrey Brewer- the new president and CEO of the Juvenile Diabetes Research Foundation. Brewer has a son with type 1. You can read that article here: http://www.diatribe.us/issues/29/diabetes-dialogue.php
Most of the reactions in the thread started off of this quote from Brewer:
"The first very big transition is we’re moving away from the over reliance on the cure as the central part of our message and funding. This does not mean JDRF is any less committed in its focus to find a cure, but we have some work to do in order to get there. And in the meantime, there are many people who will live with diabetes for a relatively long period of time. We have a responsibility and an opportunity to help them live better, healthier, longer, and less stressful lives. And so one of the big changes that we’re undergoing is focusing on improving the lives of people living with diabetes on a day-to-day basis."
Personally, I find this thrilling. Do I want a cure? Of course. Even though it would change very much of my identity and the way I think and organize and execute my life... I still want a cure. I want to live in a world where I don't have to worry about whether or not my blood sugar is high enough for me to walk from the bus stop to my home. I want to live in a world where many of the patients I might see in my future career no longer need a pediatric endocrinologist. I want to sleep through the night. I want to go to the beach without wondering how much sand will inch its way into my two medical devices or the sites where they are attached to my body. I want to be able to live my life in a way that is not at all based around where I'll obtain my health insurance.
But at the same time... I am incredibly strong and driven. And that strength and drive did not arise from an easy life. It arose from a struggle- it arises daily from a struggle. I am intrinsically motivated to work to make my own life easier and to make the lives of children and adolescents with diabetes easier. I would not have that dream if I did not have diabetes- or if I did, it would not be as motivated or powerful. I guarantee it. Challenges bring strength, if you let them. But I CAN NOT execute my dreams if I am unhealthy. I CAN NOT care for others if I, myself, am not taken care of. And that's why I love the idea of researchers working to make my life better NOW. Because what I'm doing now? Well... it's important. It's good. And because there is no cure now- and because I'm adult enough to know that when the time comes, I want to be healthy enough to actually benefit from one- I KNOW that I need to praise anyone who supports my LIFE WITH DIABETES. Because for now, that's what my life is. And it's a wonderful life! It has value. It has purpose.
I am not a parent. I hope that I will be one day, but right now, I am not. It is ignorant for me to suggest that I can understand the emotions involved in caring for my own child when they suffer from a disease like type 1 diabetes. But I've been the child. And here is my response:
I know it must be hard for a mother to give her child shots when the child doesn't want to get them. I know it must be hard for a dad to force his son to drink juice when he just finished off his dinner. I know it must be hard to sleep too little, worry too much, and feel like you have no outlet for the stress this difficult life brings. I know this because I've watched my mom and dad do it. I've seen them upset when I've suffered. And because of that... I understand the outrage of the parents in the forum. That forum is their release. That forum is their place to vent. But here is what they need to remember: that forum is online. It is accessible. And it is not, under any circumstance, a place for hatred, name calling, or uninformed posting. Why? Because it is probably read by others- people without a diabetic child who stumble upon it and are curious. And do you know what those people see? Rudeness. They don't understand the frustration, because they haven't felt it first hand. And who wants to give to a cause of rude people? Very few. So... remember that the internet is public, my friends. Post wisely. Post kindly. Post smart.
Back to a point that got lost... I've been the child. Now, I am an adult. Now, I am the one who gives myself shots, even though it hurts- and even though I can choose not to, because who is forcing me? I still do it, because I am strong. Now, I am the one who forces juice down my throat when I feel like another swallow will cause me to lose it. I inflict these things on myself. It is not easy. It hurts. IT SUCKS. But I do it. Because I am strong. I do not mean to say that I don't have others supporting me- I do. But at the end of the day, it is me against this disease. Because I'm not under constant supervision. I have to be self-sufficient. I change the sites, even when I'm scared. I push in the huge CGM needle, even when I know it hurts sometimes. I push the buttons on my pump site inserter, even though I'm all too familiar with the stinging burn that comes afterwards all too often. Now, I feel the low and treat it, even though my head is swimming, my limbs feel like they can't be lifted, and I'm not sure I can get myself from my couch to the juice in the fridge. I feel the high and treat it, even though my brain is fuzzy and my mouth feels like cotton. I do all of this while living a wildly successful life. But I do it. And I will be the one doing it until there is a cure.
...I am strong. Not because I want to be- not because I'm a hero. But because this is my life. So excuse me, for asking for anything and everything to make it easier while I wait for a cure. And excuse me, for feeling desperate for support from an organization like JDRF. Kids grow up. I grew up. And I still have diabetes. And I still need as much help and encouragement and HOPE as I can get. PLEASE REMEMBER THIS!!!!!!! At the end of the day, it is the diabetic that deals with the disease for life. (I do not mean this disrespectfully at all- I mean it honestly. My parents are great- and they took wonderful care of me. But I need a life of my own, apart from them, and that means self-management. And this is the reality that will fall onto all of the children whose parents are posting on the CWD forums.)
And... that's all I have to say.
I haven't read that thread....but, honestly, I don't visit CWD very often either.
ReplyDeleteAnyway, this is a great post. I have supported JDRF for 5 years now...not something I'm planning to stop doing, however, I do plan to support a different diabetes organization that isn't discussed very often -- Life For A Child.
Insulin has been around for almost 100 years, yet there are people who die every day because they can't access it. LFAC is trying to do something about that. If a "cure" showed up tomorrow, how would these people benefit? Or...is a "cure" only meant for those who can afford it?
Anyway, I fully intend to continue supporting JDRF via our family walk team, but I've had a nagging pit in my stomach about the LFAC organization.
The only thing I'd ask JDRF *INTERNATIONAL* is...if part of their mission is to "improve the lives of people who are living with T1D" then, are they doing anything to help the people who live in underdeveloped countries? I'd venture to say that making sure people with T1D have access to insulin would improve their lives.
I want to thank you for your contributions to the thread that you made after your blogged. My feathers are really ruffed over the whole thing. I, rather complacently it seems, thought the DOC could discuss something like an interview with the CEO of JDRF in a civil way, despite differing perspectives. I'm floored at the outright mean-spirited, hateful comments that some of the discussion participants shared. I regret ever posting, and if it would also eliminate where I was quoted, I'd go back and delete all of my comments. I tried to be constructive and respectful, but they were not going to have any of that. I never imagined such animosity from people I considered my peers in the DOC.
ReplyDeleteI want to say that I am sorry that this misunderstanding hurt several in the adult T1 community. It's sad that a handful of posts have now, seemingly defined all parents on that CWD thread/forum. I have posted many times on CWD forums about wanting easier management for my T1--especially when my child is on her own. My belief is that some people read into words of parents crying out a fear that this may be the start of abandoning cure research, and that the only focus would move to the long-term profit centers of pharma and technology. I want much better pharma and technology for living with Type 1; but I still want a cure, too. I want both --and I can easily imagine so do all people living with Type 1 Diabetes.
ReplyDeleteWendy- I did not know about LFAC, but I'm definitely interested in reading more about them/finding out ways to support their mission.
ReplyDeleteLee Ann- The cure is such an emotional thing for all of us: parents, CWD, and adults with type 1. We want it so much, and I think that desperation and desire got in the way of our communication skills in that thread. Once people got hurt, we stopped wanting to be logical... and things just spiraled out of control. I'm relieved that the thread was closed.
Anonymous- I'm glad you posted. But rest assured- I felt just as supported by many of the parents on last nights thread as I felt dejected by others. I agree completely that people read into some of the words of parents, but the reaction that came from the adult response afterwards is why everyone is so upset.
As far as big pharma goes- I'm involved in a program at IU called the Center for the Business of Life Sciences as an undergraduate student associate. Basically, that means that I am in classes with both undergrad and grad students in business and the life sciences who are interested in discussing and analyzing the union between the needs of business and the point of science. It's been an eye-opening experience. I wholeheartedly agree that there is quite a bit of corruption in pharma, but at the same time, I've seen why they often have to charge so much for their products. Federal regulation (patents, generics, and simply the process of approving drugs/devices) makes it incredibly difficult to regain the finances put into R&D on these products. To get a solution for this struggle, I think we need to look at national regulation reform. When it less challenging for big pharma to produce the products we're asking for, they will have less cause to be corrupt. All of this, though, is so tied up in healthcare reform... which is just a lovely mess in itself :) If you're interested in this subject, I'd suggest the book "Redefining Healthcare" by Porter and Teisburg- it is a dense read, but it provides a lot of insight into how our health care system needs to change to support us! There isn't as much discussion on how pharma plays into this as I'd like in the book, but it's still very informative on the big picture.