“But the moment you turn a corner you see another straight stretch ahead and there comes some further challenge to your ambition.” ~Oliver Wendell Holmes, Jr.
For some time, I have been pondering my career and life path. Grateful to God for where I am, I also want to learn and apply. I want to go back to school, and have the freedom to deepen my strengths, use my talents and find new ones. For some time, I have felt my solid ground thinning, and I feel time slipping through my fingers, and the thought of staying still has become unsettling, as if I am on thin, melting ice, and I will fall through if I don’t move in a direction, any direction.
This isn’t the first time I have broached this subject, but every year, on Walk Day, it feels like New Years. I really don’t take stock of the year past and the year ahead on New Year’s Day, but I do on Walk Day. Walk Day is always filled with numbers,
I know its not politically correct to say “JDRF Families.” Because households and individuals can contribute to many different organizations. Well, too bad, you work with me in this mission, and you become part of my family. Deal. Today, I saw the families I have met with for the past two years and missed my families in New Mexico. Thinking about all the families I have connected with as part of the diabetes online community, all wearing blue or telling their story, or sharing experiences today, too. The Walk is a year long program. I think that is lost on a lot of people. Walk Day is a labor intensive celebration of fundraising efforts from a year of fundraising.
It was cold this morning. And wet. Still, after dust storms and pouring rain last night shadowing doubt that the event would take place, so many people attend this Walk, that we cannot count them all. We estimate around 20,000. I once again was able to see passionate volunteers braving cold, slush and fatigue all the while smiling and asking for more duct tape. I saw families, some veteran, some new to the Walk, some new to diabetes. And usually spotted here and there, but now in a small group, I saw adults with type 1 and their loved ones walking together as part of our JDRF Young Leadership Committee, Generation Cure.
Lots of hugs, lots of smiles, lots of laughing and checking in. My colleagues and I feel every setback deeply, but even when the task seems Sisyphean we can make each other laugh. What a great group to drag hundreds of thousands of ever appearing lawn chairs with, to celebrate check donations with and spend 4:30am in freezing cold with. In the little things and in the big things, we know we are fortunate to work in a mission-focused organization that has an end goal to reach. We are a family, and we watch out for each other. Professional to the core, our loyalty to each other and the mission is not lost on us.
JDRF will never lose focus on what the Walk means. It means cure, it means no more Walks. At the same time, standing still will mean never finding it, and in an effort to better educate the public, our Walkers, what their investment means, JDRF is on the move. We have a new logo, a new tag. But it is more than just marketing. It conveys that for the past 40 years JDRF has invested in research breakthroughs that have added to our understanding of a very complex autoimmune disease and funded research that has led to treatments that have made those with type 1 more safe. In the past few years JDRF has fought to bring new technologies to clinical trials to ensure those at the Walk today will see a cure. JDRF looks ahead to the thousands every year not at today’s Walk, yet to be diagnosed, by funding research in prevention to keep them away from a D-Day.
JDRF placed a powerful ad urging the FDA to provide clear pathways to move a closed-loop artificial pancreas to market this past week, citing studies that have reported the incidence of death from hypoglycemia to be between 2% and 10% of the type 1 population, roughly 1 in 20.
I, for one, don’t like reading about SUDEP (sudden unexplained death in epilepsy), and definitely won’t be sending my mom articles on it so she can calculate my risk (age and type – I’m more at risk, although it is a rare complication). Even taking care of other health conditions or not getting enough sleep to me means heightened risk. The week before Walk I was plagued with incapacitating migraines after a much needed hormone injection. Hormones can cause this anyway, but a sudden increase or decrease in hormone can also mean seizure and for me, waves of hormone sent me into a spiral of uncontrollable tonic clonic seizures three years ago. So, the pain and the fact that I woke up Thursday morning with a bitten tongue meant I was on serious edge. But being alert will do nothing for me. Only finding the causes of SUDEP, of generalized epilepsy and getting me the right dosage of the best new meds can keep me safe from the complications of epilepsy.
For those living with type 1 diabetes, either they themselves have it or they have a loved one with it, this incidence of death is either an unwelcome reminder or shock, but it serves the purpose that we cannot stand still. We must keep pushing, and JDRF isn’t just organizing large community Walks for the social support it brings, but the organization is fighting with its Walkers, its volunteers and its advocates. Together, we fight for better until the fight is over, and type 1 diabetes has been defeated by the research we fund. We fight to save lives now. 1 in 20 is not acceptable, and should not be acceptable when there is work to be done. It’s a tough number, but we are tough, we are stronger in large numbers and above all that, our greatest strength is that we are more than numbers.