Ode to Volunteers

Those who can, do.  Those who can do more, volunteer. 
~Author Unknown


This post is all about thanking volunteers.  Not all volunteers, just mine.  Well!  It’s my blog!  What do you expect?

For the past few weeks it feels especially, I have relied very, very heavily on volunteers.  JDRF is founded and fueled by the passion, skills and efforts of volunteers.  There is no doubt.  Sometimes, when volunteers recommend our Chapter do something – a new project or event, per say – they expect their recommendation to be the extent of their volunteerism.  Not mine!  Every endorsement of a new event or program comes with a leading hand in the execution of it.  I am truly blessed in this respect. 

Our Chapter has taken on a lot of new events and programs as part of our Outreach Program.  It’s been a torrent of dates and tasks.  But along with those dates and tasks came very skilled and very motivated volunteers.  Our Board Outreach Committee is called the Outreach Advisory Council, and every member is part of a subcommittee.  And sometimes a subcommittee within that subcommittee!  Everyone is focused and working on something.  And they all have full-time jobs, families and other commitments.  I appreciate them as if they are my family, because I feel they are.  I think anyone working with an active volunteer base can empathize, and those that have tried working with inactive volunteers can really empathize.  I think my colleagues can attest to the power of volunteers.  Just in my office, all my colleagues have committees and subcommittees. Even that fifteen minutes a volunteer took out of their day to answer a question or make a call can mean a green or red light for our entire program.  It’s actually true – every little bit helps.

But it seems my steadfast volunteers have given a lot, not just a little bit.  For instance, I have the pleasure of working with caring and compassionate endocrinologists, certified diabetes educators and nurses.  Their care and concern for their patients well-being goes way beyond billable hours.  They care for the whole patient, and want to ensure that they are supported in their journey, at all stages.  I love my medical volunteer leaders, because they, too, love to learn new things!  I also get to work with those living with diabetes whose time is constrained not only by career and family, but by managing chronic illness 24/7.    I have so many friends in so many places all willing to partner and create a sense of community working within the diabetes field.  Not to mention, I  have three committees across two states committed to advocating for diabetes research and technology advances!  They are taking trainings, sending letter and calling their representatives to Congress right now so we can meet and emphasize why our constituents need their government’s continued support in this fight!

I’m constantly and consistently busy, and receive hundreds of new emails every week.  This is my job, so not only can I dedicate my free time, but I get to dedicate my 8 hours in the office to this.  I can’t imagine having a full plate of work, and then getting this:

Romero, Lawren                    Please Review!  
Romero, Lawren                    Re:  Please Review!  Forms – Revised
Romero, Lawren                    Did you see this?  Interesting article!
Romero, Lawren                    Meeting Request 

At least one day a week, I’ve noted that volunteers on more than one committee get three emails in one day from me.  I recently attended a dinner and one volunteer said, “I got three emails from you, today!  It’s okay, I don’t mind.”  In the last few weeks I have prefaced my emails with “You will be receiving three emails from me today.  I’m sorry, you’re my favorite” or I call and say, “Okay, you just got like five emails from me, I wanted to call you before you started opening them to explain.”

I try my best not to abuse my volunteers with tasks and the corresponding correspondence that ensues, and I try to harbor the relationship that if a volunteer lacks the time to contribute, they just let me know.  When we have our larger Council meetings, I attempt to recap about four months of activity, but when you combine everything we do into an hour, I feel like my eyes widen to saucers, and I say, “Big…lots things…so many…times…places…go to…lots.” 

There is no way I could do a fraction of our calendar without volunteers!  When a volunteer takes 15 minutes to make a call or complete a task, it can give me a full days worth of work.  It’s literally opening  a gate for staff productivity, and the more they do, the more we can do.  And that means the more we all get done towards our mission – eradicating this disease so you don’t get multiple emails from me every day.   At least not concerning diabetes.


A Path of Blessings

As my last post indicates, I had a really hard, really weird couple of weeks.  So many things came at me at once.  So many answers were demanded of me, and I had so many questions.  It was at home and at work, and those two weeks left me stupefied, and a little crazy and numb.  I don’t really remember all the things I did at my level of stupefaction.  Probably said something stupid. 

If you can’t imagine my frame of mind, scribble on a piece of paper.  Yeah, that was pretty much it.  Maybe, Dublin captured it best in this photo.  This is kinda what I looked like for the last two weeks.

Now I’m still young, when the pressure to figure things out is at an all time high, or at least I perceive it to be, so I’m owed a little crazy.  I’m also old enough to learn something from these periods, of ” WTH?!?”

I’m not much of a drama queen.  I don’t like drama, I like excitement.  Please don’t confuse the two.  I’m an excitement queen.  I run on possibilities and caffeine.  If I’m bored, I’m miserable.  (And more likely to text you.)  So, when pressure and bad news are at all time high, and possibilities of excitement, adventure and happiness are low…and all this news comes at once, culminating in one weekend… I moan and I run in circles.  Phew, so tired.  You know, from the running…

So what did I learn from the running and the crazy?  A sparrow in the airport that landed at my feet was the first reminder.  Things might be falling around me, and the path ahead completely unclear, but there is a path, and there is a Guide. 

Another reminder.  This morning, I met a man whose young daughter was diagnosed with type 1 diabetes just days ago.  She is still in the hospital.  His world turned upside down and a flood of new information and new emotions hit him.  He looked shocked, he looked confused, and in his eyes I saw grief and resolve.  In a day, just like any other, his world and that of his family’s forever changed.  His world was confusing, but I had knowledge.  I had knowledge of an incredible life his family had waiting for him and friends waiting to meet him.  I hope he uses me, and our resources in the time that he is shocked, confused and heartbroken.  Because where he cannot see past her getting out of the hospital, we can see her playing and laughing with friends.  This meeting gave me perspective. 

Reminder three.  My appointment with my new epileptologist.  I had never been given a real diagnosis.  I was told I had epilepsy and ever since then, it was figuring out how to control it, the end.  I knew of people who had grown out of their epilepsy, and thought, in the back of my mind, that my condition could be temporary.  I have a type of epilepsy that does not go away, and was told that I would be dependent on medication for the rest of my life, with the threat of seizures.  It could happen, but statistically, I should not even consider it.  I could try tapering off my meds if going seizure free for two to five years (I’m in year three), but seizures are so terrifying to me that the thought of turning myself into an experiment that can’t drive, work or be left alone is not really an option for me.  This news was not disheartening for me, but I knew it would be somewhat of a let down for those who had been through this with me.  Looking at me, you can’t tell I have epilepsy.  I  haven’t had a seizure in three years, and you know what?   I might not have another one.  That’s an amazing blessing, and I cannot take it for granted.  Last weekend, I saw a young woman walking around with a helmet.  At this appointment, I saw patients with noticeable neurological disabilities – they could not walk, they could not speak.  I went to my appointment with my best friend, my rock.   He cares so deeply for me, and although the path ahead will not be free of epilepsy, I have so many blessings now.  In the midst of the crazy and heartbreak, I even have the blessing to see past it, to see the reminders.  The couple with serious health issues had each other, and in the gentle care they gave to each other, I could see that they could tell what a blessing they were given in each other.

I can get some really awful news tomorrow.  My dreams could become dust.  But in that dust come new dreams and new opportunities.  Taking hold of today, and finding the great in tomorrow.

Five Years

Today I mark five years as a diabetes fighter.  Five years ago I got involved with the Juvenile Diabetes Research Foundation.

I was just about to graduate from college with  my BBA in marketing.  This is the time when young 20 somethings go crazy thinking about getting a job.  I knew that as a college graduate, I had a better chance of scoring not just a job, but a career.  One that offered me a position to be creative.  I just didn’t know the first step. 

Professor Funnierthanmost distributed a lot of job and internship opportunities to business students.  I had sat through multiple career days and presentations from companies wanting fresh talent in entry level positions.  Nothing panned out for me, or even peaked my interest.  Then I came across one for a Marketing Intern for the Juvenile Diabetes Research Foundation.  Right up my alley, I thought!  Marketing!  Plus, Dad had diabetes (didn’t remember which type) but it was not fun and he suffered with it.  It was unpaid, but I had gotten an internship with the Office of the Governor (also unpaid), so I thought more experience to go get a paid position with!  So, after an email thread, I went to meet my new “boss.”

Picture your pantry.  Then multiply by two and a half.  That was the size of the old office.  One narrow teeny space, starting with the door ending with the manager’s office separated by a wall with a window in it.  Other than her desk, there was a small desk facing a wall.  I feared that would be mine, if selected. 

I very quickly realized this was a disease I was completely unfamiliar with.  There were pictures of kids all over the walls.  What?  Dad took shots, but it was so long ago, that I didn’t remember.  Dad was only on oral medication at that time, so I knew diabetes as a disease that required pills, watching what you eat, pricking your finger, getting blood, and yelling.  “What the…?”  “Are you kidding me?!?”  “I took my pills!”  “I barely ate anything!”  “I’ve been outside working for two hours!”  Well, you get the idea.

The first person I met with type 1 diabetes in that little office was hooked up to a pager-like device.  She tried telling me about it, but I think I was so focused on how to respond, that everything flew over my head.  What I learned from that interview was that a healthy young woman my age could have diabetes, children could get diabetes, it’s a sophisticated disease and it needs nothing less than a cure.  My Dad was in visible pain from having type 2 for so long, and I knew that JDRF would help him, too.  My new boss offered me a summer internship.  I would come in half days three times a week.  Thinking back, I now know how respectful if was of her to interview me.  I was interviewing to volunteer, but she really made me feel as if I was entering an organization that took a formalized process.  It made me feel special.  I called Dad two steps out from the office, and told him I was going to cure diabetes.

Before even starting, my new boss invited me to see JDRF in action, at an event.  It was the Corporate Engagement Breakfast for the Walk to Cure Diabetes.  I suited up.  My gray suit was way too big for me, so I was pulling on it constantly.  It was all I could think about.  The talk was about what diabetes is, and how JDRF is out to eradicate type 1 diabetes.  Then Jennie (names have been changed in this blog as a courtesy) and her family came up to speak.  Jennie was very, very ill when she was diagnosed.  Her parents talked about their fears for Jennie and her daily life with diabetes.  Jennie was fidgety.  She was up on a chair, then down on the floor, then sitting on the chair, then on the floor.  Jennie had eaten breakfast, and she needed a shot.  I watched her mother give her a shot, and this was the first time I had seen it.  It surprised me.  Jennie wiggled, but her mom held her and gave her a shot in her arm.  Her little arms had bulges right below the shoulders.  I realized later that it was lipodystrophy.  She hated to feel her shots, and fought new sites.  What floored me is that this scene had to repeat itself several times a day.  I don’t know what the look was on my face, but I’m pretty sure it looked like the expressions I have witnessed over the years at these events from those that don’t know type 1.  I became really close to Jennie and her family.   I saw them in our teeny office so many times during that summer.  I spent more time on the floor than at my desk, and Jennie drew pictures while her mom volunteered.  She drew one of me.  I was helping her cross the street.  I still have it framed in my office.  It reminds me that I started with JDRF to help Jennie, and I remain with JDRF until she’s safe. 

At the end of the summer, my boss was given the go-ahead to hire a temp.  Part-time.  I took it.  So now the office had two paid employees!  I worked as a temp for eight months.  Then I was hired on as a full-time employee. 

You take this job, one day at a time, one season at a time, one task at a time, but always looking towards the goal – a world without diabetes.  My old boss is now my colleague and I recently asked her how many Walks she had done.  It was hard to count.  I have worked 10 Walks, 5 golf tournaments, 4 galas and countless events that fall within those realms.  Every 5am start, every 9 hour time frame in heels, every U-Haul loaded and unloaded, every mailing, every phone call, every email – means something.  It means a step closer.  It all is part of a bigger picture, a bigger event, a bigger amount raised, a bigger breakthrough funded. 

Before I moved to our Chapter for a manager position with JDRF, I spent three and half years with fiscal year objectives and reviews that started with my boss saying, “I know JDRF might not be the end all for your career as it is for me…”  But it became that somehow.  On that five year road I am staying on, it has become that for me.  I have a family here.  For those you living each day with diabetes, you might only know my name, you might have seen me once and I talked to you and then  you see me every once in a while when you need some advice or a resource or just a voice on the phone.  I might have been one of the first voices you heard when your child was diagnosed or that weird girl that told you about all the cool events for adults with type 1.  I could be the person asking you for time, for advice, for your story.  In any capacity I am needed, I can fit that role.  I can be at your doorstep with Rufus, or at the hospital with magazines or on Facebook forwarding your blog.  I get to be a friend for a living.  How much better can it be?

I do get thank yous for serving families and adults with type 1 diabetes.  It goes both ways.  What a coincidence that to mark my five year anniversary, I have taken on an unpaid intern to work with me this summer.  My hope is that this organization serves her as it has served me.

On the Edge of a Coin

Every day I feel like I am sitting right on the ridge of a coin.  It moves back and forth a bit, but I do my best to stay right there on top, so it doesn’t fall one way or the other, and oh, it does.

My position with JDRF is on top of that coin along with my personal connections to type 1 diabetes, and my personal experiences with epilepsy.  I am sure my analogy makes sense to those associated with illness in one way or another. 

Thinking of type 1, one side of the coin is positive.  There are incredibly successful people living each day with type 1 diabetes, and they are successful in many different arenas.  In work and at home, these people are successful and live healthy, active lives.  In fact, I know many who put me to shame all the time, because I don’t work out as much or travel as much, etc.  Someone diagnosed today can do anything they dream of.  They can raise families, they can excel at school and in sports, they can travel internationally, they can become a justice of the Supreme Court, or hey even president!  There are some with type 1 who have worked hard to find every avenue they can to become pilots and race car driver!  Outside of joining the military there is nothing you can’t do!  The simplest and most powerful thing someone with type 1 can do is reach out to someone else who is having a hard time with the disease and work to lift them up.  The message on this side of this side of the coin is the positive one, the message that even with type 1, there is nothing you cannot do given the tools and the motivation to use them. 

The other side is a harder side to deal with, although it is just as real as the positive side.  Diabetes is a dangerous disease.  It can take a life in a moment, the management of it is a rigorous game that changes but never stops, and complications are devastating and sometimes debilitating.  While news breaks of those defying the odds and living beyond incredible lives with type 1, there also comes news of young children losing their lives and adults dealing with complications that impact their very quality of life.  Type 1 is a disease that doesn’t always come al a carte, either.  Other autoimmune diseases can add more strain to management.  It’s confusing and frustrating, causes depression and anxiety, and needs a cure.  Before another life is lost, before even another day is lost to diabetes, we need a cure.  We needed one yesterday.  This isn’t a disease that is easily managed, it’s a real life enemy, that strikes all ages and every one in a very specific way.  I have met so many people who work hard to manage their diabetes and are the pinnacle of health.  I also know many people who work hard to manage it, and struggle immensely from high blood glucose levels and scary low ones.  Even though long-term complications sometimes make you think that they come slowly, some can come so quickly that it takes your breath away. 

Professionally, I have used both messages.  In outreach, I am all about the positive side.  Children, parents, families and adults need to know that the choices they make today impact their tomorrow.  They also need to know they are not alone.  It is a constant battle, but because of advances in technology and treatments, and the support of millions, you really can do anything!  Just like anything else, it takes drive and work.  It also takes the ability to dust yourself off and try again.  I like outreach.  To bring people together in the spirit of family with the feeling that life is amazing, so fight for the one you want!  Incredible job.  I also worked on the other side of the coin as a fundraiser.  If someone doesn’t live with type 1 or they don’t know about the disease, it’s hard to say donate to JDRF.  There are so many places to donate money and to volunteer!  Other disease organizations all have the message that we need to get rid of the disease, or educate the public, or provide programs for those living with it, and so on.  So, knowing that this disease is dangerous and can strike at any moment, we need to convey that a cure is absolutely necessary.  You don’t just stop eating sugar, start taking insulin and that be it.  So, if we are asking to fund research into cure and treatment therapies, we need to say that we are saving lives.  And its true.  A cure will save thousands of lives a year.  Plus, it would have huge implications for other autoimmune disease cure therapies.  So, here I sit, on the edge of the coin.  Having to balance the messages.  I take my job personally, probably too personally for my mental health, but the Diabetes Online Community knows what it feels like when the coin falls on its end.  Blue candle.  The coin falls to the reality that this enemy took another, and I feel it physically when the coin tips that way.  Like a punch in the stomach.  And then, as Facebook profile pictures start to resume to faces of happy kids, family pets and vacations, the coin goes in the other direction.  Life must be lived to its fullest.  Between these two sides to the same coin we have to balance.

I always put a disclaimer that not having diabetes or a child with diabetes, makes my input a different one.  I honestly cannot know the experience of living every day with type 1 diabetes.  Mine was something different:  epilepsy.  I was a lucky kid, and am a lucky adult.  Yes, epilepsy almost took my life on numerous occasions and has had other effects on my health.  But because my management of it now consists of taking two oral medications a day and watching my routines, I feel incredibly blessed.  It’s there, but it isn’t a weight on me.  The other side to this coin is seen when I am faced with what epilepsy can do.  I don’t think too much about a cure for epilepsy, because right now I feel that my treatments are controlling my seizures, and I have a kind of cure.  When I was having dangerous seizures all the time, I wanted this disease gone and now, and was so frustrated by how confusing it was, not only to me personally, but to researchers and doctors!  Epilepsy almost took me, yes, but it takes many lives annually.  Also, some people try everything in the book, and they cannot control their seizures completely.  I can’t imagine this.  Thinking about it makes me cry.  Not having freedom?  Complications can even include loss of mental capacity.  What if I couldn’t do anything without a care taker?  What if I couldn’t read and understand or write?  But, I get to take my cure twice a day, and live my life.  I fear having seizures, and I fear that another unknown factor will come into play and my cure won’t work again.  But life is short and beautiful and I balance my own coin, knowing how lucky I am, and reminding myself of those not as genetically fortunate, who need a cure. 

I suppose I am writing because every conversation I have includes the coin.  I’m from the school of thought that people are not diseases, and there are no diabetics.  There are people living with diseases.  But we shouldn’t have to live with them either. 

Even after coming into consciousness right after having a seizure in a public place, I have never been an epileptic.  I’m Lawren.

Walkless Walking

According to Facebook, it is National D-Blog Day, so in the spirit of blogging, I write.  For those of you who have read other postings, you know that I do not have diabetes or a child with type 1 diabetes.  I have many other connections and a WordPress account, so here I go.

I usually only write when something hits me.  Or moves me.  Writing right now will take some digging, so what has happened lately on the diabetes front lately in my life that I can blog about?

Well, our JDRF Chapter last Saturday completed four Walk Days in two weeks.  “Walk” as we call it (short for the Walk to Cure Diabetes), is a year-long job for those who manage it (special event staff).  As a former Special Events Coordinator for JDRF, I can tell you that we had maybe an afternoon and a day where we weren’t working somehow on Walk.  It was the moment after the Walk when we knew we would be free to actually leave the site until the next Monday.  So, I LOVE special events staff, because my last two Walks didn’t have me as a planner, just a helper. 

For those of you who know me, you know me to be transparent and honest, and I will say that I have never walked the route.  I work the events, so I can’t.  Six Walks, and not one lap.  Quite frankly, I think it would be boring.  Before you retort, I’m talking about the actual walking in a circle (sometimes twice), NOT the event.  Walking is not about walking.  Sure, you get some exercise and a slight tan, but Walk Day is about seeing all the people there that support a cure and support each other.  Also, even though I do 10 miles a day on an elliptical, I am not physically fit with other types of exertion, really.  The last event in which I literally walked was for the American Heart Association.  It was a great route, but had hills.  So, I kept pace with a pug.  And we all know pugs have respiratory issues!  Yeah, the pug beat me.  I knew a couple of his snorts at the finish were meant for me.  But whatever, you know, I’ve moved on. 

Walk  Day for me means having at least one conversation to make all the loading and unloading worth it.  Every year, I look forward to seeing my friends and just seeing all the people, but I look forward most to that one conversation.  I was at two Walks this year, Glendale and Tucson.  In Glendale, I had an in-depth conversation with a mother interested in why we raise money through the Walk – research.  She had good questions, and I was motivated by the fact that she equated Walk with not only a public showing of support but as a way to move forward with research!  We discussed our progress, and I saw her eyebrows go up.  That is an awesome moment.  In Tucson, I met a family from a rural part of the state, and they shyly came up to the JDRF table looking for ways to find other families.  I provided them information, and we talked about how their lives had changed since diagnosis.  This was their first Walk, and they were newly diagnosed.  The mother with tears in her eyes said that she had felt so alone in this.  For those of you reading this blog, you know there are tons of ways to get connected online and also in your community, and to be the person that handed her this knowledge that contained the hope of people to share this with is a great honor and privilege.  

Last year a family grabbed me as people were starting to leave.  The father had tears after the event.   He took my hand in both of his and said, “God Bless you for what you do.”  I told him it wasn’t me, it was him.  He was doing this for his daughter.  I’m just staff support.  Last year also gave me a sweet and sad conversation.  For the previous three years, my branch manager and I would work the event until everyone was gone and then recap with our logistics chairs and then just sit there and talk.  By that time, we would be numb, thinking about chocolate and aloe vera baths.  Last year we leaned against my car and talked about my future, knowing it would be my last Walk working with the Branch.  I don’t even remember all that we talked about, but only that it felt really good to talk, and I felt really sad that it wouldn’t be the two of us having this talk in the same after-Walk moment.  

In 2006, my first Walk terrified me.  Adrenaline flooded my body for 9 hours straight.  All I knew was that I had a walkie-talkie and after a few months of office work and meetings, I had to move all our volunteers to where they needed to be.  Everyone was so nice to me, but I was just out of college and totally unprepared.  I was dizzy, and did not want to repeat it next year.  I think it’s kind of funny when I get asked if I want a cure soon as a JDRF staff member who receives a pay check for working events like these.  Walk Days are fun, Walk is not.  It’s work.  For anyone who had a school or work project that took a majority of your  time, all your energy, all your talents and never seemed to end…that is kind of what Walk is like.  Except this one doesn’t end.  Until a cure is found or you quit your job.  But the JDRF staff who take it to heart that people are waiting won’t quit until a cure is found.  So, we work the Walk.  A JDRF staff member who does leave a paid position usually reappears as a volunteer, and guess where we put them – WALK.  As a Walker myself, I know how hard it is to raise money (ach, don’t look at my Walker page unless you want to donate, I fundraise over Christmas).   Every year, I register, I dedicate my fundraising page to Dad.  Dad was diagnosed with type 2 over 20 years ago.  He had a major heart attack a couple of years ago, but was saved by the grace of God and an emergency angioplasty.  His heart attack was a direct complication of his diabetes.  Early in the morning, Dad gave up trying to sleep and told Mom to call the hospital because the crushing pain and shortness of breath was just too bad.  Mom called me as I was on my way to a grant workshop and told me to not freak out, but Dad was being airlifted for tests.  Not being a complete idiot, I drove to the Heart Hospital just as a chopper was landing.  I parked my car and ran up to the tarmac.  Dad came out on a gurney and was placed on a golf cart.  He was gray in the face and foaming at the mouth.  His eyes were rolling around.  He was in a great deal of pain, and the morphine was not doing anything.  I jumped up on a seat, without an invitation from the paramedics.  They rushed him in, and I ran behind, again without invitation.  In a hospital room he was met with nurses and a doctor.  That’s when my lack of invitation got me in trouble.  I was ushered out of the room with my father’s things.  His watch, his wallet.  I grabbed a paramedic leaving the room by the shoulders.  I was taller than she was, so stopping her by force wasn’t difficult.  She told me to wait, but I didn’t let go of her shoulders.  She looked back at the room and then at me, and told me that they don’t know anything yet, but that he did have a heart attack, and it could mean an emergency procedure or emergency triple bypass, and that is what they were discussing.  I let her go, and sat outside his room, clutching his things.  I prayed and gave it to God.  I trust in Him, but for myself felt completely helpless.  Awful feeling to have.  I didn’t have a medical degree.  I am just a daughter, his kid.  For Dad, I can’t put on a lab coat, but I can put on a Walk shirt.  I know Dad is more likely to have another heart attack or stroke now.  I know that diabetes caused his nerve damage, and threatens his kidneys and sight.  I also know that these complications are targeted for research.  Reverse and prevent.  Reverse and prevent!  Through my efforts as a Walker, I can be a small part of ensuring that Dad dances at my wedding, that he isn’t held back by diabetes.  Parents of kids with type 1 and other type 3s don’t want that kind of hospital story, they may already have some behind them.  The helpless feeling that diabetes cannot be controlled, only managed, takes away the power you yearn for when threatened by chronic illness.  A piece of that empowerment can be found through Walk.  Whether or not you walk at all.

The World As We Fear It

Last week was the kind of week that beats you up a bit, and throws you off.  The one that takes you out of the world as you know it and reminds you that you can lose.

This is another blog on a subject matter many bloggers posted on last week.  The death of another young teenager with type 1 diabetes. Commonly referred to as Dead In Bed Syndrome, it means a young woman was here at night and gone in morning.  Just like that.  It’s hard to comprehend a passing so seemingly sudden, without warning, without treatments for long term complications.  She went to sleep and that was it.

Those young adolescents will never have butterflies before a first kiss, will never know the scary free feeling of driving their first car, the feeling of accomplishment by graduating high school, the wonderment of where life will take you that is the college experience, the chance to nail that interview, to take a leap of faith and get married and to raise children of their own.  Internalizing this thought is heartbreaking.  To try to understand what the feelings of emptiness the family experiences is incomprehensible.

Diabetes isn’t controlled.  It is a disease that takes lives, slowly or suddenly.  The world as I know it is full of phone calls and emails, event planning, researching, returning phone calls, traveling, asking for donations, meetings, reading about diabetes, writing about diabetes, educating about diabetes, learning about diabetes.  For those with type 1, type 2 or type 3, the world is checks, insulin adjustments, carb counting, schedules, fatigue, moments of success, moments of discouragement, moments of confusion, doctors appointments, numbers and measurements.  The world as we fear it is the one in which despite all the work, we lose.  Diabetes comes back with a final blow in the middle of the night.  We are reminded of this threat when we visualize a family donating all the unused supplies, a child free of diabetes, not because we cured, but because we haven’t yet.

This reminder is a slap in the face, a punch in the gut.  Parents all over the world could not sleep, worried that the world with normal checks would become the world with no checks.

But, in all the candles lit, in all the blogs and posts, remains a hope.  That we will not let go of the children who will not see a cure.  We take them with us as we work towards it.  The world as we know it still has firsts, still has graduations, still has successes, still has triumph, still has hope.  This news binds us together, in a shared fear.  It also binds us in a determination to lift up all those threatened, to provide them hope, to share our stories, to advocate for faster progress, to unite in a renewed passion to eradicate this disease.  For the parents who stay up at night, for the children in their beds dreaming of dreams coming true, for adults still waiting after decades working against the lows, the highs and the complications, for  the newly diagnosed in the hospital handed prescriptions and a new life they never asked for, for the scared, the strong, the confused, the positive, the burnt, the humorous and for the ones we lost.  We will honor those taken, those left behind, those living with it and we will work towards a world as we want it – free of diabetes.

Working for Superheroes

I’m starting to feel that I chose my career because of I’m in awe of superheroes.

So, tell me, Reader…when did you  last talk to a superhero?  I mean, the real deal? And I mean superhero.  Those with powers beyond human.  Well, I work with superheroes every day. 

As an employee of the Juvenile Diabetes Research Foundation (JDRF), I have the unique opportunity to work for people who spend every minute working to save lives.  And they have powers.

As an outreach manager, it’s my job to support these heroes in their super endeavors.  So, I come to work, I learn something, I share what I’ve learned, I speak to groups, I speak to individuals, I host meetings, I go to meetings, I plan events, I execute events, I create materials, I get on the phone, I write countless emails, I go home and read, read, read.  I read on managing type 1 diabetes, on clinical studies, on historical research data, on this and on that.  What I read tends to repeat itself in different publications, but I still won’t remember everything I read.  I read and try to keep everything locked and loaded for the next phone call or email from a superhero, but I can’t.  And other things are starting to fall out of my head.  I forgot my phone number the other day.  See, I’m just human.

A parent of a child with type 1 diabetes is a superhero, and I have accumulated some hard evidence to prove this.  First of all, they save lives.  And not like a doctor or soldier saves lives.  Every day they wake up and must save their child’s life.  They must keep their child breathing every day.  I can’t imagine how exhausting this is.  And they don’t get vacations.  They don’t even get sleep!!  Diabetes (the villain) never sleeps!  So parents can’t either.  They don’t even get to rest at night.  They gotta keep working.

And like superheroes, they get plot twists.  Except, some fictional superheroes have the luxury of having a stupid arch-enemy, one who spills the plot and their whole evil scheme because they think they’ve won.  Diabetes is a smart enemy.  Parents are always guessing what diabetes will do next.  And the formulas they have learned to battle diabetes with might not give them success all the time!  Diabetes can hit them with its weapons of high and low blood sugars at any time no matter what they do!  But they keep on working, adjusting their tactics.  No matter what.

And these formulas!  That is why they  have superpowers.  I have read all about carb ratios, and insulin sensitivity, and bolus doses and basal rates.  I have read about all the factors that can attribute to high and low blood sugars.  I read about effects and phenomenons.  But to remember ALL the ratios, ALL the factors, ALL the rates, ALL the carb counts…AND…ALL AT ONCE?!?!?  ALL THE TIME?!?!?  Ya gotta have superpowers.  I’m not just saying it because math and I don’t get along, I’m saying it because you seriously, have got to have superhuman capabilities. 

So how can I work for superheroes who have superpowers?  If I can provide them any weapons to use against the enemy, I’ll do it.  The greatest weapon available is knowledge and each other, and both go hand in hand.  Every family diagnosed needs a medical team to give them tools, to guide their moves and to teach them how to develop their powers.  Then, superheroes need other superheroes to share trade secrets and to motivate each other.  If I can bring superheroes together, or I can give them information they didn’t have before, I have done my job.  But, parents shouldn’t have to have this burden of having to fight every day forever, and as a child is diagnosed in our JDRF Chapter every day, another parent must take that burden on.  So, I will work to vanquish the enemy for good and throw weapons to our superheroes in the meantime. 

Also,  as cool as being a superhero may seem, they got their powers for awful reasons.  An enemy attacked, and they had to either work at developing their own powers or lose what is most precious.  So, these parents have had to learn things they would never wish for other parents.  Like how to hold your young, newly diagnosed child tightly and in just the right way so they can’t squirm out of your embrace while you steady the needle and try to block out the pleas of “Don’t do it, please don’t do it, it hurts, it hurts.”  Or looking at your teenager with weariness of heart in their eyes whisper under their breath, “You don’t get it ” all the while you pray they never, ever have experience your  kind of fatigue.  Your fear.

Just like Superman gets his strength back from the sun, so do parents get their strength from good days, from the successes.  When their kid gets to play with their friends and enjoy a sport.  When they ace that test!  When they see their seven-year old show another kid how they test their blood sugar.  “See, and then I put a drop of blood on here, and it tells me how much sugar I have!  Cool, huh?”  When they give themselves a shot or change a site by themselves.  No tears.  When parents witness how mature their child has become, how strong, they often tell me, “I don’t know how they do it!  I know I couldn’t do it.”  But I’ve figured it out, yes, me, the layman.  These kids, wise beyond their years, are strong because like all kids, we emulate our parents.  Parents DO do it.  They live with diabetes every day and the strength they have as superheroes is copied by their kids.  So superhero parents – they get it from YOU. 

So, yep, I get to work for superheroes.  It’s a pretty awesome job.  Just yesterday I was on the phone with a superhero mom telling me how awesome her daughter is, and how strong she has become.  I know I’ll never get it, I mean really get it.  Unless sometime in the future a doctor comes out to the waiting room and tells me my child has type 1 diabetes, or tells me that I now have type 1 diabetes, I won’t truly understand this brand of superheroism.  But, I’ll go home tonight, I’ll pick up one of two books I have on type 1 diabetes, one published in 1994 and one this last year and read up.  Maybe I can find something of interest to superheroes.

Walk 09

I remember watching an old episode of House in which a patient, unable to censor his tongue, tells his wife who works in non-profit, “How does blocking traffic for hours find a cure for breast cancer?”

As a JDRF staff member, I can tell you that it is not the traffic blocking that finds cures.  It’s not the walking around in a circle twice.  It’s not the food, the entertainment or the T-shirts.  It’s the money Walkers raise.  This money turns into grants for the most promising research in the world.  This research will bring us a cure.

I have told many a potential Walker that I am not a scientist.  I am not a doctor, and I don’t spend hours in a lab.  I am a daughter.  My father was diagnosed with diabetes over two decades ago, suffers complications and is at risk to suffer more.   The Walk is my way to fight back.  All those brilliant scientists and engineers in research and development need money.  We fund their research.  We encourage donations and thank people for donating by holding a large event to show all the kids, families, adults and their loved ones that they are not alone in their disease.  We are here to support a cure and celebrate our efforts.  We may block traffic.

I was there at 6am, so no traffic for me.  I will give you just one staffer’s perspective of Walk, if you haven’t heard my tale before.

The Walk to Cure Diabetes is just called “Walk”  around here.  Walk encompasses all, and although other fundraising events also work to fund diabetes research, Walk brings in the most research dollars and most participation from JDRF families and corporate sponsors.  Partly because of its size and partly because of its ease.  Anybody can very easily become part of the cure by getting involved in Walk.

As a Family Team Captain, Walk is registering, customizing a fundraising page, spreading the word on Facebook, sending out emails and asking for donations.  As a JDRF staff member, Walk takes 12 months of the year to coordinate, from cultivating corporate sponsors and Walk teams to event planning and logistics to administrative duties.  This year, as Walk started to close in around October until Walk Day last weekend, Walk took three staff members (a fourth flew in the day before) two volunteer managers and their children and 193 Walk Day volunteers, as well as volunteers to lead the efforts in Family Team fundraising and Corporate Team fundraising.  I think we may have a two days when Walk isn’t on our desks in some respect.  Yes, that’s right, Christmas Eve and Christmas Day.

Walk Day itself is actually a lot less stress-free than the week prior.  JDRF staff sacrificed food for coffee and sleep for more coffee in order to complete tasks needed to be done before Walk Day.  We have two logistics managers, both volunteers, who know Walk better than any of us.  This was their 13th Walk.  They gave their expertise, time, and sweat to organize Walk Day.

The day started out smoothly, but cold.   I stopped by to see one of our most active volunteers and my good friend who was literally shaking in the cold as she collected money.  Mascots arrived to take pictures.  The sun came out, and the actual walk began.  By the time the walk begins, staff and lead volunteers already walked the length of the route easily by running back and forth.  After the walk, our Walkers stay to enjoy lunch, live music and to make sure their kids get their chance on the giant inflatables.  Slowly, but surely, attendees make their way to their cars around 1:30pm, cleanup begins, and we all try to grasp the fact that the event is closing.  We take time to talk of the day and ponder the future.

This was my last Walk in this particular role for JDRF, and from my description of it, it may seem to you like anyone would be much happier in a participant role, or volunteer role, than as staff.  Well, the best part comes from the thank you from families.  The hugs of gratitude and the “God bless you for what you do” comments that bring tears to my eyes.

Right now JDRF provides funds for the most promising diabetes research the world has to offer, and provides more funds than any other charitable organization in the world.  So while we provide money, we also provide hope.  When I get a “thank you” I feel it a thank you for helping families get closer to the day when they can say to their child, “This is it.  You don’t have to live like this anymore.”  But I won’t give them the cure, they’ll give it to themselves.  I just have the distinct honor to watch them do it, to help them do it.

Walkin’ and Talkin’

Last Saturday I walked the 2.2 miles of the State Fair Parade route with the JDRF float.  The experience proved not only to be an opportunity to sunburn, but also a reminder of how important this organization is.

The tag line, or mission of JDRF is ingrained in my subconscious and it will flow from my mouth when prompted.  “What is JDR..em..what do you do?”

“Well, the mission of the Juvenile Diabetes Research Foundation is to find a cure for diabetes through the funding (or support) of diabetes research and research-related education.”  Then I can get into, “Over 80% of all JDRF expenditures go directly to research…” or another line repeated over and over and over on the phone and in person.  But nothing strikes like the phrase, “Find a cure for diabetes!” yelled from the father of kids living with the disease.

We were sweaty, developing sunburns, and yet, excited.  Not about the sunburns, mind you, but about the chance to just say, “FIND A CURE!”  For the love of Christ, do something!  These families should not have to live with this, not when a cure is out there, and we are closer than ever.  That was portrayed in their voices.

Last Tuesday brought the Team Captain Kickoff Luncheon for the Walk to Cure Diabetes.  We scrambled to prepare the room, and I passed on the stress of the event to my volunteers, as usual.  We need to do this, we need to do that.  Working an event means you don’t attend the event.  Always thinking about the next step, means constantly moving boxes, answering questions, checking on registration, and taking care of any other logistical task that pops up.  In the one moment in which the entire room was settled, our Family Walk Team speaker took the stage.  She didn’t talk about raising money – how easy and fun it is and how to get started.  She talked about when her children were diagnosed.  She talked about the stress, the emotion, the uncertainty and fear of those moments.  Her voice cracked in recollection, then she talked about the stress, the emotion, the uncertainty and the fear that every day brings.  The anxiousness that accompanies every phone call, the fatigue that every early morning blood sugar check brings and the hope of a cure.  Knowing her and her family, my heart fell into my stomach.  I looked around the room, and attendees were moved to tears.

So that is what we did in the last few days.  Well, we did many things, all those tasks that add up to large events, but the main thing we did, staff and volunteers, was walk and talk.  From our end, that is all we can do.  This time of the year we mostly talk about walking!

Please, find a cure.