Wednesday, June 23, 2010

Walking The Walk

This weekend was our JDRF walk to cure diabetes and it struck me how my feelings related to this day have evolved with each passing year since Jenna’s diagnosis. 
For three years now we have attended in some capacity and each year I have experienced sudden surges of emotion while in attendance that force me to breath deeply and center myself, lest I burst into a teary, fragile mess.  Something about a gathering of people affected by the same life challenges we are with hopes of a cure in our hearts causes my maternal heart to swell.   Of course, nothing compares to the raw emotion I felt the very first time we attended.

The first walk was only a week after Jenna’s diagnosis.  We were still in shock.  I hadn’t started a team; I hadn’t canvassed for pledges; I hadn’t even completely unpacked from our four day hospital stay just yet! I was still trying to wrap my head around how this happened to my little girl.  
Upon our discharge from hospital our Diabetes Nurse Educator informed us that a walk was scheduled to take place in our area in just a couple of days.  She encouraged us to attend to network and meet other families like us.
So that Sunday we packed our brand new, hospital issued, Accu-chek backpack full of all the stuff we had been supplied with that was now a part of every single outing we would take from that point on, and we headed to the park where the event was in full swing. 
We arrived late.  The stragglers were just trickling in - returning from the 5k walk.  But most of the people had already returned and the announcer on the bandstand was in the process of drawing names for the prizes they were giving away.  There were several tents set up with different meter and pump brands displayed.  Each company represented had some branded item to send us home with, gratis.
It was all so very strange.  So surreal.  I felt like an alien on another planet - like we were the only ones new to this.  Everyone else seemed to know each other.  Everyone looked relaxed and happy, as if they were attending a family reunion.  But we felt like fish out of water (except for Jaz and Jenna who were intrigued by the slight “carnival” feel to the whole affair.)  Yet I wanted to reach out to people.  I thought of all places, this would be a place to find understanding and comfort.  
Sometimes I think it was just too soon.  We were in a very different place than the majority of those in attendance.  We had one brief heart-to-heart with a rep from Accu-chek.  He asked us how long since our daughter was diagnosed.  We told him, and after his eyes widened at the realization of just where our headspace was, he promptly dropped handfuls of 10-count test strip sample canisters into one of the branded bags we had been loaded up with as we aimlessly drifted from one company tent to the next.  
I was touched by this gesture even though it was mainly the promotion of yet another product, which shows just how hungry I was for some empathy and compassion.  Not that I wasn’t grateful to have some freebee goods thrown our way.  It just felt so strange to be a part of an event that was supposed to be geared toward finding a cure for this life-threatening disease.  But at every turn I encountered corporate sponsors promoting the stuff aimed at managing diabetes - not curing it.  And short of displaying a sign that said “We are new to diabetes and we are hurting.  Please hug us and tell us it will be alright,” no one there had any way of knowing our situation.  Consequently, no one offered us any encouragement or comforting words.
Last year, we did register a team with JDRF.  We canvassed.  And the support we received from family and friends was overwhelming.  When we arrived to the walk we checked in and an older woman seated at a table, wearing a JDRF hat and t-shirt found our team name on the computer print-out.  
ooOOOOOooooh!  Well done! Thank you very much! “ was her reaction when she saw the amount our team had raised. 
I was given an incentive claim slip and instructed to take it to another table where I was told I could claim my “incentive prize” for the amount of money I raised.  
Incentive prize?!  What’s THAT about?!  
I didn’t want any prize, unless a cure counts as a prize!  It felt wrong to accept a prize for raising money to fund research to find a cure for the chronic, life-threatening disease my daughter has.  It seemed to cheapen what I had done.   
But they gave us our JDRF backpack anyway.  A few weeks after the walk it came in the mail.  It’s pretty nice.  We use it quite a bit, actually.  But in no way does it hold a candle to the incentive of finding a cure.  (Did I even need to write that?) But that’s just how ridiculous the whole idea of an incentive prize is to me.  And every time I look at that backpack I wonder if a portion of the funds raised has been used to purchase these “incentive gifts”.  
Money that was given to help find a cure is instead being used to buy thank-you gifts?!  Banish the thought!  It couldn’t be!  These gifts must be donated.  
This year we made t-shirts.  I wanted to get my girls involved in the event and I thought t-shirts would be the perfect way to do that.  And it was.  They loved it.  We all wore homemade t-shirts and received numerous compliments on them both at the event and afterward.  
We all wore the t-shirts for the entire day and I was surprised to learn just how effective t-shirt messages are at bringing about awareness.  
After our walk we headed to a grocery store to pick up a few things for dinner that night. J and I were asked on two separate occasions to explain our t-shirts.  We capitalized on the opportunity to spread some information and answer questions.  
On yet another occasion J was in a store attempting to locate an allergy medication for Jenna as she has been suffering particularly badly this spring, and by chance met up with an old work colleague who happened to be in the store at that time.  They chatted briefly, catching up on each other’s lives and the colleague commented on J’s shirt.  J explained about the walk we had just completed to find a cure and his friend said “Oh that’s right.  Remind me...what does your daughter have?”
“Type 1 Diabetes.”
“Right.  Well, I’m glad it isn’t something life-threatening.”  He replied, sounding relieved.
“Well, actually, it IS.  Hypo and hyperglycemia are both very life-threatening conditions and are common among type 1 diabetics.  Not to mention the long-term complications that can result from  years of unstable blood sugars.”
The shock his friend expressed at finding out how serious type 1 diabetes is serves as yet another example of the lack of information the general public has with regards to this disease.  It’s also another glaring reminder that we all must be prepared to educate and inform.  I was proud that J seized the opportunity to enlighten his friend.  It is this kind of ignorance that causes indifference among those not touched by type 1 diabetes.  
Of course, this year I was given an incentive gift - again.  And again I found myself feeling guilty for accepting it.  But I rationalized that it is most likely something donated to JDRF by their corporate sponsors.  JDRF can’t be purchasing these gifts with cure money!  Besides, I can take those gift cards and buy my girls some clothes.  That way the money is being put to good use. 
Then, by sheer coincidence JDRF emailed me a survey yesterday as I was composing this post.  They were looking for feedback regarding how I felt the event was run.  Some of the questions were related specifically to the issuing of incentive prizes.  Among other things, they asked if I felt the prizes were important to my participation in the event, if I was aware that JDRF had to purchase these prizes, and if I was aware that I could donate the prize back to JDRF to help redirect the funds back into research for a cure!!  
I instantly felt all kinds of foolish.  

DONATE THE GIFT BACK!  Of course!!  Why, oh why didn’t I think to do this or at least inquire as to how the prizes are obtained by JDRF?  
So next year, barring the discovery of a cure, (I know, I know, but I’m trying to be optimistic here) I will be participating again in the JDRF Walk To Cure Diabetes.  I will campaign as I have done these past two years.  I will take it a step further and attempt to organize a fund raising event myself for the first time.    And next year I will enthusiastically donate my incentive gift BACK to JDRF.    
Oh.  And by the way, I was sure to let JDRF know in their survey just what I thought of the whole “incentive prize” concept too.  I hope more people consider donating their prizes back to JDRF so the funds can be redirected back to their intended purpose: finding a cure for type 1 diabetes.

1 comment:

Steven Lee said...

Great post, Sherry. I can relate. We've yet to do a walk -- well, we tried, but.... anyway, Franca and I both still feel kind of out there on a raft when we meet other "experienced" parents of CWD. They are just farther along in their acceptance and ability to deal with the emotion of diabetes. Neither of us are there yet, and may never fully be, and I think that can be a good thing. Like you feeling guilty about a parting gift for walking. Something about accepting this just feels wrong. It is when emotion sweeps us into the crowd blindly that we have to worry. Thank you for keeping your eyes open.