Another Blessed Pilgrimage

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.

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.

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.

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.