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:
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.