On Advocacy

Life has been chaotic this year, and my own versions of advocacy have gone along for the up-and-down merry-go-round ride.  I still want to blog about the insulin access workshop from April.  Yes, April.  (Insert disclosure that Lilly paid for my travel, hotel, and meals).  There is so much to say and so little time to beat a figurative dead horse (which died from lack of insulin, in this figurative example).  Yet I will express it at some point, because 1) I promised our community that I would, and 2) I am still wowed by my peers and those with big hearts who are dedicated to improving life with diabetes; these big hearts come in all shapes and sizes in healthcare; the workshop reinforced that idea for me.

There have been other exciting opportunities, too, and the blog posts have been drafted and re-drafted in my head for a long time now.  I believe mentioning these feelings here is advocacy in and of itself.  Sometimes this part of the merry-go-round of life simply is what it is.  Advocacy can wax and wane and broaden and refocus as life dictates.

Reading and watching and writing poetry have encompassed a different avenue of creative expression for me.  Poetry is freedom.  Just go.  It’s funny where and when the roots of an English major choose to spring up.  I’m just happy to be writing in some capacity.

At a recent event with close friends and their families, one ventured to ask about diabetes advocacy.  To respect privacy in this story, let’s call her Friend.  Friend’s relative (let’s call her Relative) has dealt with type 1 diabetes for a large number of years.  Diabetes remains difficult despite the gadgets and gizmos of 2017; I cannot imagine how tough it was way back in the day.  Relative has faced her fair share of adversity in this life.

Friend’s daughter (let’s call her Daughter) explained, “Ally does a lot of diabetes advocacy work, and it’s really cool.”  That statement shocked me back to reality, in a good way.  Someone out there, aside from #DOC folks, actually cares about this!  

I mean, I know people care. But it was refreshing to hear this outside of #DOC-land. There are people who look to our examples of advocacy and find hope. How humbling and, indeed, cool.

Friend was visibly excited to talk to me, and, likewise, I was inspired by her openness and respect for our community.  Another round of drinks later, and there we still stood, steadfast in our shared mission.

“Why isn’t there a cure yet?” reverberated in our ears.

I have asked myself, God, and anyone who will listen that very question in the long 26 years since my type 1 diabetes diagnosis.  To have someone else inquire the same of me was a long time coming.  Not that anyone is to blame, per se.  We all want a better world, one in which diabetes is buried with the dinosaur fossils.

But truly, why isn’t there a cure?  We have the brain power.  We have the amazing labs working steadfastly to help us.  We see the faces of loved ones who represent why #weneedacure.  My two cents are that we remain fragmented in an already-divisive society.  We need to rally together and maintain hope that one day a cure will come.  We are good eggs with sometimes-different goals, and that is okay.  But our goals should center on paving the way for a better world- whether with diabetes, or (hopefully) without it.  My response to Friend was something along those lines.

“Why are people dying because insulin is not affordable and accessible- not just abroad, but here in the United States, too?”

We discussed the name Shane Patrick Boyle.  Keep saying his name.  We talked about how diabetes advocacy is moving the dial on this issue, but we cannot rest yet.  This disease is absolutely relentless.  We have to keep showing that.

Friend and I left the event table knowing that we both still had seats at it.  There is work to be done.  Engagement in advocacy is fluid; such is life.  But sometimes it takes seeing the other people affected by our work to know that we are advocating beyond ourselves.  That is why we started this in the first place, and that is ultimately how we will finish it- together.

Thank you to Friend, Daughter, and Relative for reminding me why we do what we do, and for your loving support.

 

 

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+1

25 years on a Lilly medal + 1 test strip representing another year = 26th diaversary

Last year I had many words, and blog followers reported that they kept Kleenex in business while reading.

This year, only a few terms come to mind:

Anger.  Insulin.  #weneedacure.  Emotional Health.

If diabetes takes a backseat in life, it is not for lack of trying.  Rather, it is for resetting and rising again.

Reese has taught me to appreciate the simple joys of reliability, and love.

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Here’s to more +1’s.

 

We need a cure.

 

 

 

 

 

 

Cure Faith

Please note that this blog post solely reflects my personal opinions and is shared in the mindset of advocacy. Aside from the obvious point of being my parents’ daughter, there is no official affiliation to any of the people or organizations discussed here.

Heavy snow accumulations whited out the New England landscape as my father and I drove quietly into town to shop for a new ski parka. We were going to make a pit stop first, though. Some new research had just come out regarding a diabetes cure, and my father was on a mission to learn more. My teenage self was along for the ride.

We entered the medical library of my father’s alma mater. He had written down the name and page of the medical journal. There, I got my introduction to Faustman Lab. We photocopied the article, returned to the slushy streets, and eventually purchased a ski jacket.

I still have that jacket today, and to be honest, I’ll probably hoard it with my diabetes supplies for a while. Its shade is quite similar to the hue of the diabetes blue circle that so many of us wear loudly and proudly on our social media profiles. That jacket invokes a memory of hope for me, and it just seems wrong to throw it away- at least not until I’m cured.

coat pic for blog

When I was a young child, my father would tell me about the epic party that we would have when type one diabetes was cured. All of our friends and family would come over. There would be a carbs-only buffet. Pizza, pasta, bagels, muffins, cake, ice cream, Skittles, and more would constitute the main course.

After test driving my resurrected islet cells with a carb overload, the group would congregate on the front lawn. There would be a folding table in the center. And a hammer.

Dad would bring out the diabetes supplies- the blood glucose meters, the syringes, the vials of insulin no longer needed. We would raise the hammer high above our heads while the crowd watched. With as much force as we could muster, we would lower the hammer down onto the table full of supplies. We would smash what signified diabetes into smithereens. The heavy scent of insulin would fill the air as the glass vials shattered. The needles would be gone forever. My parents’ hearts would be sewed back together, and I could be a carefree kid who did not have to interrupt playground time to prick her finger and drink juice boxes like a champ.

My father’s diabetes cure party dream seems a bit dramatic when I reflect on it now. Alas, I totally get it. My parents were chasing their daughter around with needles, intercepting steeeeep blood glucose crashes due to NPH and R, not sleeping much, and doing it all over again the next day. Now, I have inherited those duties as an adult with more diabetes-friendly treatment options thanks to modern science. Yet the task remains difficult, and my hat remains tipped to all of the diabetes parents and diabetics out there.

Although the everyday ups and downs of diabetes caused some trying moments in our familial relationships, I know in my heart that my parents have never let their cure dreams fizzle out. Following their stoic example, I, too, dared to dream big, to imagine a world without diabetes. On the bad days those cure dreams have been my mental rosary beads. If I cling to the cure faith hard enough, it somehow sees me through the day.

Every generation has a moral obligation to make the world a better place. I have to believe that diabetes will be cured in my lifetime. Why not set our sights high? Time and time again throughout human history, dreaming big has paid off exponentially. If we do not dream big enough, though, we are stuck in a status quo of sorts.

Sure, modern technology makes life easier and has great potential for the future. I will always support anything that improves quality of life with diabetes. I will certainly take advantage of a perfected artificial pancreas system when the time comes if it means that I can feel better and stick around longer. But I will never stop advocating for the ultimate dream: to tell my future kids and grandkids that I had diabetes and that they will never have to worry about it thanks to a cure.

Due to my close proximity to Massachusetts General Hospital, as well as my father’s great interest in cure research, I have been blessed to donate blood and spend some time at Faustman Lab. (Full disclosure here: I am positively-biased as heck when it comes to Faustman Lab. While I find Dr. Denise Faustman’s diabetes cure research to be innovative and promising, I also appreciate her great value to the medical community aside from my own cure hopes. Dr. Faustman is one of the brightest minds and biggest personalities in medicine, and if I am going to put my faith in anyone to advance autoimmune disease research, it is her.)

Perusing the positive press about Faustman Lab’s Phase II clinical trials this week allows that cure faith to stay alive in my heart. No matter what my personal outcome is with diabetes during my stint on earth, I will be able to say that I lived in a time when great strides were made towards lessening the toll of diabetes. This is thanks to the hard work of Faustman Lab, other great research projects, our outspoken advocates, and the people who never let go of the dream.

One day my future kids and I will pile into the car to go shopping for ski parkas. I won’t have to pack extra juice boxes or check their blood glucose levels before hitting the slopes. We will warm up by drinking hot chocolate without pre-bolusing. On the car ride home, they’ll describe their big dreams, and I’ll do my best Kevin Garnett impression while telling them that anything is possible. Heck, we cured diabetes, kids.

Anything is possible.

FaustmanLab.org