11 November 2011

We Do want Diabetes Research, Treatment Innovations, & Care to Move Forward, Right? Part 2

I wanted to blog my thoughts on this in two parts. The first encompasses my reactions as they relate to picking our battles, and not causing unintentional negative outcomes - you know, the gift horse scares you senseless, so you kick it, not realizing it comes bearing gifts. Part 2, however, is about something much deeper, much closer to our hearts, and to the dark ebb and flow of fears we don't want to see, touch, or acknowledge.

Let me start by saying that I understand and relate to people reading the 1 in 20 statistic and questioning its validity, even questioning how their child or loved one with diabetes might respond if she / he sees the JDRF ad. Extending it to the notion that no one will have our kids over for play dates, sleepovers, or hire them for jobs as I've seen suggested in diabetes forums feels like such a reach, almost as if we've taken our initial reaction to the ad and designed a story around the ad that justifies our feelings of anger. That's not to say the anger isn't legitimate. But I do wonder if it's healthy, even helpful, to check out where this intense reaction comes from (the one perpetuated beyond an initial reaction.) At least, I needed to for myself, because when I first saw the ad, I felt numb, tearful, and PO'd in relatively short order.

First, I needed to check out my internal barometer. Once voiced, I had similar initial fears about the impact the ad might have, so I shared the ad with people. Truth is, we already have problems with being invited for 'playdates' (though now that my daughter's in middle school she says I'm not allowed to call them that anymore), sleepovers, and I lost my job. So, I had to stop and ask myself, does this ad really make any of that worse? I don't know, but honestly, I don't think it does.

So, I shared the ad, and honestly, most people didn't bat an eye. About half apologized for the way they've acted or treated us since my daughter's diagnosis in February. It was like a wake up call for them. The one friend who's home she actually still spends the night at? They're completely un-phased as we have plans set up. My daughter and I work out her needs via cell phone, and if necessary, I run over to the house (FYI, it's happened once in 9 months...) 

Second, and more concerning to me, I needed to look at why I was so ready to be mad at JDRF before looking into the facts, and really considering all the factors. For me, it boils down to needing something to be angry at rather than facing the idea that my kid might fit into a statistic like that. Seeing that ad, feeling the fear associated with numbers like 1 in 20 die, sets off a maelstrom of feelings, primarily anger at this disease, at the sleep deprivation, at the seemingly selfish desire to get more than 2.5 hours of sleep at a time, the things our kids have to go through and face because people don't understand type 1, or because they're afraid to be confronted with it. Fear that she could go too low one night, that I won't wake up to my alarms (BTDT!) and the worst will happen. Sadness and hurt that this is her life, there's no turning it off. It took nanoseconds and one line of text to bring all that up.

The problem is, that maelstrom has nowhere to go, it's a mess of hurt, fear, and yes anger that I can't do a damn thing with - so I subconsciously look for a target to aim it at. How about the messenger of the stat? Why not? They used it to get a reaction, it might not (we don't want it to) be accurate. Even though the supporting references do support it (depending on how you analyze the data), it's clear they sensationalized it for lobbying purposes. So, why not?

Truly, though, all that anger at JDRF, no matter how justified is a mirage to deflect against my own anger and fears for my child. I can let myself ignore them, and they will carry me off into believing this ad harmed my child directly by robbing her of play dates, changing how people perceive of and treat her, and end up in a self fulfilling prophecy. Or, I can acknowledge all the hurt, fear, and anger this ad generates. I can send a message to JDRF letting them know how the ad affected us, and then let it go with a promise to do something about the fear and anger I want to stay hidden. 

I can participate in online diabetes communities and share it with people who understand. I can try to channel my hurt, fear and anger into helping JDRF or whoever find a better tomorrow for my child. Or, I can accept that for right now, I have nothing extra to give - not even to fuel continued anger over an ad the rest of the world likely already forgot about.

They may not come through, but there's raw emotion imbued in the words and ideas in this post. I took the time to share them because I sense they're important, not just to me, but to many people fighting this fight. Clearly, the ad touched something deeply inside many of us within the diabetic community. It touched upon a fear we don't want, and our kids shouldn't have, to live with. Part 2 is about taking a minute to honor that side of it...because when we do, the fear loses its control over us. Sleep well, at least for the next few hours.

We Do want Diabetes Research, Treatment Innovations, & Care to Move Forward, Right? Part I

I received an email from the ADA the day after JDRF ran it's ad with the alarming statistic that rang round the web: 1 in 20 type I diabetics ... die from hypoglycemia. The ADA email and enclosed ad were entitled Stand Up to Fight Diabetes and carried the following text:

The first step in calling out a proven killer is a simple show of hands.

During American Diabetes Month, help stop a disease that's more likely to take your life than breast cancer and AIDS combined.

Visit us on Facebook this November and Join the Millions who are standing up and fighting back against diabetes.

Together we can create greater awareness and support for a disease that strikes every 17 seconds. Go to Facebook today to take the pledge to help Stop Diabetes. Then share with your friends, family and loved ones.
The first line has become their tag line for Diabetes Awareness Month, and appears in a picture with a woman holding up her hand in the universal sign for stop. There is a small drop of blood visible on her index finger. That line appears in red or bolded black text to one side of her hand (depending on where you read this), and on the other it says is a simple show of hands in white. (The woman's face is also blurred out.) The second line of text appears below that picture.

I don't see these tactics as being much different from the JDRF article discussed in many type I diabetic communities, and it created quite an outcry, particularly from parents of type 1 diabetics. The awareness month serves political, fundraising, and lobbying goals, and we're going to see a lot of sensationalist text like this. Given the state of our economy, and the dismal availability of funding (private, grant, government, etc.) non profits are going into pull out all the stops mode. There are other issues with regulatory agencies, but let's pretend we don't know about those (since most people truly don't...)

We don't have to like the text or the tactics, and we can protest, but the reality is this is what it takes to maybe garner funding when the stakes are high - and right now, they're really high. The percentage of non profit funding being sought through grants (particularly research), foundations, government etc has more than quadrupled, the pool of funding seekers has grown as well, and all for less money. While we have the right to dislike and protest these tactics, these organizations still have to fight to stay afloat, and may well wonder whether we understand just how hard it is to fund diabetes research, or how much we want innovation to occur in our children's lifetimes. 

I'm not saying I agree with or support the tactics, but I can see both sides (in part because I've done a fair amount of grant writing.) I just went to a workshop on the changing face of grant writing a couple of weeks ago, and the push is for non profit organizations to move their focus to friend raising rather than fund raising because the money just isn't there. That's not really a viable option for medical research, and when it comes to research funding, it's sort of like triage - you have to convince the players who matter that the condition and research you want funded is of more critical importance than all others. 

Sometimes, I think you have to pick your battles on this stuff. I didn't like the ADA text above, but I want the artificial pancreas to move forward, so I will instead focus my energy on educating people closer to me who might say, "Hey I saw that ADA ad. I didn't realize..."

08 November 2011

Diabetes Awareness Month

November is Diabetes Awareness month. In fact, November 1, 2011 was the first ever day devoted to Type 1 Diabetics, and November 14th is World Diabetes Day. A friend asked me why we need two different days, and my daughter (the type 1 diabetic) answered, "We don't, we need a whole month. There are lots of different kinds of diabetes. It's just that everyone thinks it's only type 2, and they don't even understand that one, really."

That's my kid, a cute, young, but fast maturing little girl who carries a burden few adults would know how to manage, and does so brilliantly. She's smart, she's fun, her laugh is intoxicating, and her outlook on life is uber positive and bouncy in a way that only Tigger and she could pull off. Most of the time.

Then there are days like today. Days when she's tired after being woken up every three hours to treat a near low with milk or juice followed by a snack. Sure, most kids would dance the Light Fantastic at getting a middle of the night snack, but when it's meant to save your life, when your tongue is stuck to the roof of your mouth with the worst case of dry mouth imaginable, and you have to eat this snack  right now whether you want to or not - that just simply begins to suck. Especially when your mom stops making sense and exhibits only one mood, the irritability of sleep deprivation.

We're both beyond tired, and even so, most days we're grateful for all that we have, for the fact that her disease is manageable.On the mornings that follow extreme trials of sleep deprivation, it can be hard to dip into the well of gratitude. Still, we persevere, and I for one am grateful. Grateful that cell phones offer multiple alarms, thankful that my son knows how to download the most obnoxious music designed to wake the dead, and mostly, filled with a deep sense of blissfilled thanks to our guardian angels (who I swear pushed me off the bed) that she woke from another night of uncertainty.

Since November 1st, Type 1 Diabetes Day, the diabetes community has continually struggled with and debated the merits of an ad run by the JDRF in the Washington Post and the New York Times. Take a look for yourself:

I realize the text of the ad came out a bit blurry and difficult to read, but I'm sure you noticed the startling statistic. 1IN 20 TYPE 1 DIABETICS DIE FROM LOW BLOOD SUGAR.

That's a startling, appalling, alarming statistic, and it's caused quite an outcry in diabetes circles. The debate centers around the the statistic, and the perception of statistical manipulation or fear mongering versus an honest and necessary attempt to help people truly understand that Type 1 Diabetes is a serious, often devastating disease, with debilitating effects on one's health over time.

I've spent days reading and listening to parents of children with type 1 diabetes decry the morally reprehensible lobbying tactics utilized in this ad. I've researched, sifted through study after study, looked at current data, and the facts remain - muddy, obscured. Yes, treatment options have come a long, long way baby. Those with type 1 who have access to these treatment options likely face better outcomes than those patients in the studies used by JDRF to arrive at this startling statistic.

At the same time, the number of children diagnosed with type 1 diabetes increased exponentially over the last 5 years, and continues to do so. Researchers don't understand why, but this will put a strain on the availability of treatment resources. Those of us with children who have type 1 diabetes need to be aware that the prevalence of this autoimmune disease is fast outpacing both the resources we currently have, and the rate of research for better treatment options and a cure, particularly in our country where research seems all but stagnant.

The truth is, it isn't about the statistic at all. It's about the fact that children and adults with type 1 diabetes suffer hypoglycemic events every single day, and those cause destruction to the neurological system. It's about how incredibly hard type 1 diabetics, and their families, work to negate that, and to ensure that the type 1 diabetic leads as normal and healthy a life as those without this disease. It's about the countless hours of lost sleep, the constant state of awareness and emergency preparedness that type 1 diabetics live with every hour of every day. It's about what could happen, and does happen, should we decide we want and need a break from this - because the truth is, diabetes takes no breaks. It doesn't wait for lunch time, honor holidays, recognize you have a test or a presentation, or care that your school health para (or even your dad) stinks at math. Every minute of every day, and night, counts - sometimes it makes the difference.

The fact is, in other countries, corporations like U.S. based Medtronic offer technological tools designed to reduce the burden on, and increase the safety of, type 1 diabetics. Tools that are not available in the U.S., and that the FDA will not yet consider until years of further testing are concluded. You might think this is due to safety concerns, but the truth is it's not. If people don't realize that Type 1 diabetes is really all that serious, that people die from it and suffer debilitating health concerns as a result of years of insulin dependence, then no one is going to lobby and push for research funding in this area. Sure, the statistic, the ad, they feel alarmist, and they're meant to. Our country is currently light years behind the European Union in research and innovation in the area of diabetes - a disease that already accounts for a high percentage of all health care costs in our nation.

Think about our night that I briefly shared - that was mild. Multiply that times 365 nights a year, and take that times 30 million - the number of people in the U.S. alone that have type 1 diabetes. Chances are, you know someone who isn't going to sleep well tonight, who is afraid they or their child may not wake up tomorrow. Is it really so wrong that the JDRF is pushing the FDA to release guidelines that will allow research in our country to move forward? I didn't think so.

08 September 2011

Word Play– Semantics & the Mind Games We Play on Ourselves

Yesterday, I went shopping right after I dropped the kids off at school. I decided that on such a deliciously cool and misty autumn day, I wanted nothing more than to bake. Given the invitation of a sweater donning, cocoa sipping forecast that would surely end by morning, I typically tend to do so – though this would prove my first fall preview accompanied by my foray into baking for the newly diabetic. I wanted desperately to pick just the right ingredients, ever mindful of carb counts, calories, nutrient density, and of course the delectability factor, I entered the store armed with pen, pad, and my mental calculator – only to be immediately distracted by all the mom acquaintances I encountered.

To say that I am my own worst critic far surpasses cliché and borders on redundancy, particularly since embarking on my freelance journey sans teaching contract. That said, as I walked through the store and nodded to acquaintances whose names I cannot remember, but with whom I’ve shared the journey of parenthood and countless stories of our children’s in-school antics, I began to notice a commonality. Whether the mom, whose son and my own have shared classes since kinder, half dressed half pajamed rushing to her car with the harried, worried expression of a morning gone wrong, or the expertly coiffed yet equally hurried PTA mom cruising her cart through the aisles at top speed, none appeared anymore self reassured or self possessed than I feel on any given day. I began to watch more closely, people with whom I’ve shared shopping , bargain hunting, and most recently a never ending remodel of what appeared (to us) a perfectly functioning store. So many bodies, so few willing to make eye contact, share a smile, offer a joke or simple hello. Why, I wondered, knowing that the answer sits always at the forefront of my mind. “What,” the voice whispers, “do they think of me? What if it’s… bad?”

A odd thought struck me as I acknowledged this self critical, ever present voice. These words – critic, critiqué, criticism, even critical, carry such negative connotation yet as a teacher and, only recently having finished my MA, a student I believe they should in fact convey a sense of at least analytic objectivity, if not something positive. I decided to look up the definitions of each, and received quite a shock. Consider…
crit·ic n.
1. One who forms and expresses judgments of the merits, faults, value, or truth of a matter.
2. One who specializes especially professionally in the evaluation and appreciation of literary or artistic works: a film critic; a dance critic.
3. One who tends to make harsh or carping judgments; a faultfinder.

Notice the first and third definition? Surprised me too.

cri·tique n.
1. A critical review or commentary, especially one dealing with works of art or literature.
2. A critical discussion of a specified topic.
3. The art of criticism.
tr.v. cri·tiqued, cri·tiqu·ing, cri·tiques Usage Problem
To review or discuss critically.

Now this struck me as more appealing, and more along the lines of what I expected to find, until I read the following note on use

Usage Note: Critique has been used as a verb meaning "to review or discuss critically" since the 18th century, but lately this usage has gained much wider currency, in part because the verb criticize, once neutral between praise and censure, is now mainly used in a negative sense. But this use of critique is still regarded by many as pretentious jargon, although resistance appears to be weakening…  it may be preferable to avoid this word.

Okay then, that takes me back to my state of confusion. When, I can’t help but wonder, did this happen? On to the next word…

crit·i·cism n.
1. The act of criticizing, especially adversely.
2. A critical comment or judgment.

There’s a point to this, I promise. I believe an inherent problem lies in these words, particularly critic and critical, holding such negative connotations. Take a look at the last word.

crit·i·cal adj.
1. Inclined to judge severely and find fault.
2. Characterized by careful, exact evaluation and judgment: a critical reading.
3. Of, relating to, or characteristic of critics or criticism: critical acclaim; a critical analysis of Melville's writings.
4. Forming or having the nature of a turning point; crucial or decisive: a critical point in the campaign.
5. a. Of or relating to a medical crisis: an illness at the critical stage.
     b. Being or relating to a grave physical condition especially of a patient.
6. Indispensable; essential: a critical element of the plan; a second income that is critical to the family's well-being.
7. Being in or verging on a state of crisis or emergency: a critical shortage of food.
8. Fraught with danger or risk; perilous.

Notice the first and last definitions given? Like many of us, I learned long ago to put information I wanted readers to pay attention to, and more importantly, remember at the beginning and end of my writing, so this struck me as quite odd, if not disconcerting. These words, the prevalence of negative self criticism in our society today so apparent in the store, feel related. At the same time, my sense of 'this shouldn't be' brought to mind an oft discussed educational goal and personal attribute we claim to value – the ability to think critically.

As a teachers we continuously face evaluation (read critique) of our ability to teach critical thinking skills. Educators actively discuss critical thinking with students on a nearly daily basis. (I’ve frequently wondered why students give me a gape mouthed look of dread at the term, but this post may explain that.) How is it that we simultaneously regard something as both a positive attribute and an act that is inherently negative in nature? How do these two conflicting perceptions of critical co-exist? Or better yet, perhaps we need to question the prevailing, if subconscious, notion that a critic judges one negatively, or that an evaluation is by nature unpleasant and looks for flaws.

We want our students to think critically, meaning to evaluate and analyze from all sides of a problem, to think outside the box and search for innovative solutions. We hope that our bosses or clients perceive the same attributes in our own work. I decided, on a hunch, to look back at a very old edition of the American Heritage Dictionary from the 70’s. The definitions for each of these words read quite differently, as in, perceptively more positive in nature. The usage note in the current edition makes more sense after comparing the two editions, especially the portion that mentions the decreasing resistance not just to these words  holding a negative connotation, but as negative in nature.

I suggest we need to change this, and as with all change, recognize the need to start closest to home – with myself. In a leap of utter discomfort, and for the absolute good of my future, I choose to be my Best critic from today forward. It has a nice ring to it, doesn’t it? Tomorrow promises to provide the perfect day to test this out, I'm subbing in a new school after all.

19 August 2011

The Re Invention of Living

I recently watched The Invention of Lying with my 14 year old son. The movie offers an interesting perspective on brutal honesty, white lies, and the ripple effect of seemingly small, harmless mis-truths. What struck me most profoundly was my son's ability to acknowledge the many untruths we tell ourselves in the course of a day, and how these often significantly affect the trajectory of our lives and experiences.

In fact, these thoughts continued stirring through my subconscious over the last few days, and led to the realization that my own life and career path share an underlying foundation of two equally powerful beliefs, that I do not want to work for myself or possess an entrepreneurial spirit, and that I both love and am okay with working the long hours demanded of my various professions (teaching, nursing, web design, grant writer, etc.). They are also, undeniably, untruths upon which I continually build our lives. As I examined each of these career paths, and contemplated the amazing atmosphere of calm peace filling our home these last few weeks, I came to a stunning realization. We, our entire family, exude such an amazing sense of happiness and work together like clockwork, in a manner that I previously found unimaginable, when I am not working insanely long hours outside of the house. That isn't to say I haven't been working a great deal, or even as many hours, just that I've completed hours of research and freelance writing from home, and in a manner that makes me available to my children - when they need me.

In the midst of all this, I decided to review my students' CSAP scores from last year. I truly care how my students performed, how well these scores reflect on the quality of my teaching, and to an extent, whether the decision to non renew my contract made any sense according to this one indicator of student learning. My students performed amazingly well in all content areas and sub indices, but one area outshone all others - writing. My students, from a Title I, low income, predominantly ESL background demonstrated greater than 90% growth on their writing CSAP (class average.) Wow! A friend asked me how I taught writing last year, and what might have been different. I knew in a heart beat the greatest underlying factor to this success. My students and I spent the entire year discussing and exploring the power of our voices, and how writing allows us to share ideas and explore the world and relationships around us. I shared my passion for writing as they discovered their own voices and developed a sense of passion and investment in their craft . By years end, every student in my class shared their personal writing with a display of pride that astonished their families.

Beyond an incredible sense of accomplishment, I gained something even greater. I rediscovered my own passion for writing, for sharing ideas, and for helping others discover how to share their own. I spent the summer editing and copy writing, helping friends and clients revise content, and even started co writing a novel with my daughter. I regarded this as my hobby, something I loved to do in my free time, and spent endless hours applying and interviewing for teaching jobs along with hundreds of other teachers who, as a result of budget cuts, also found themselves wondering, "What's next?"

For me, the answer sat, quite literally, at my fingertips. It took a movie, a 14 year old's insights, and my own reflection to recognize the mis-truth and discover a seemingly simple answer. And so, the re-invention of living begins, as I discover my inner entrepreneurial spirit and explore the many joys and challenges of becoming a work at home parent, or more appropriately, a write at home parent. Here's to the power of Voice!!

19 July 2011

Career, Family, & Health

Our mental, emotional, physical, and spiritual health comprise the four foundations of a happy life. I know this, believe this, and yet the angst I've allowed myself to experience over work, my availability to my kids and their needs, the time I spend on my own health care (or lack thereof) prove otherwise. Why in the world do we do this to ourselves? We know what constitutes "Best for Me" and yet, so often, we fail to make time for those activities and elements in our lives. The stress and craziness of the many perceived Must Do's distract us from what is most essential. As I sit back and contemplate what really takes precedence in my life, family clearly takes first place. I realize now that those who don't choose to allow that choice have no place in our lives, be they bosses, friends, or colleagues. Rather than spend hours rallying against the unfairness of a boss who chose to penalize employees for recognizing right action and implementing this in our lives, I choose instead to honor that choice and recognize that I've opened space for something better, something greater, to enter my life. Chances are, whatever that is will prove better for our family all around. In the meantime, I thank the universe for always being honorable, and place my faith in the Golden Rule.

01 January 2011

2011 - A year of change and growth

I started the morning out feeling more reflective than I normally do on New Year's Day. Don't get me wrong, I think about resolutions and things I want to change or improve every year, but this year feels different, more important somehow - especially in terms of family and my relationship with my children. As a family, I don't feel like we have the relationships that I so desperately want us to have with one another. We love one another deeply, and most people comment on how close we are. That said, the day to day hustle and bustle resulting in the chaotic mess we call our lives results in a lot of angry exchanges that make for unhappy people merely coexisting in space. That is not the family I want to create, nor the legacy I want to leave my children with. Much of this stems from the fact that we struggle to make ends meet, and from my own personal struggle to obtain a healthy balance between work and our home life. Add Ahern's head injury to the mix of grading, planning, homework help, and the challenges a single parent family creates for all involved and you have a puzzle worthy of Mensa. Just how do we make this a healthy environment for everyone involved, and still see to the needs and obligations we each hold? I don't have the answer to that question, but I'd sure like to work on finding it in 2011.

I love my children deeply, madly, more than mere words can convey. Niko, Ahern, and Krystal give my life purpose and meaning, and I view parenting as the most important thing I've ever attempted in my life, however poorly or well I've managed thus far. What I realized this morning is that I love them and myself enough to honestly see that my New Year's resolutions encompass the single goal of becoming a better, happier, healthier person - for them and for me. Health, diet, weight loss, fitness, reducing stress, becoming more positive and engaging in activities that bring us together more often such as family dinners and game nights all relate to that one simple, yet huge, idea - I want to become a better person, to grow, to laugh more, to share, and to gracefully and gratefully acknowledge all that is good in our lives. Now how do you break that down into simple resolutions? I have a few ideas, but they are not all encompassing.

My heart tells me that it's time to work on our spiritual lives as a family, that it's time to return to Unity or some similar establishment. Similarly, I know that I must simply start to let unfinished things go and not allow them to bother me so. Already, I remain behind in grading, and yet I cannot allow this to become a big deal. Time with my family ranks higher in importance, and somehow I need to develop a speed and efficient strategy or figure out a better more valuable means of identifying and providing feedback to my students. I care about and remain committed to their growth, but not to the point that my children continue to think I care more for the children in my classroom than the ones I have at home. (My lowest point in 2010? Realizing that's how my own children feel!!)

2011, I know in my heart of hearts this year is going to bring us closer together, result in beautiful things for my family and I. I recognize this as a year of change and growth, and despite the growing pains that might entail, look forward ready to embrace and work towards all this year has to offer. Now, to spend some time with my kids...