For Doug Masiuk of 1Run.org, 1977 was a time well before fast acting insulin. Going back thirty years and there was only one pediatric doctor who understood diabetes in my area. I had the first generation at home, blood glucose tester. Diabetes was something very different when I was diagnosed. Over time technology improved and chances got better. Eventually the label of diabetes being referred to as a death sentence began to fade away. It was a transition into hope and a future not predicted with complications and things that would shorten this life. But It would be replaced by labels and sayings like “too expensive to cover,” “not covered”, and preexisting condition. Not sure what hurt me more in life, to be called a diabetic or to experience the consequences of these other tags. I was just a person with a broken pancreas from no fault of my own. Why did I feel flawed, guilty?
From school, to getting a first job then eventually living on my own, new challenges arose. I would discover new forms of balance. The one constant was my need to manage my diabetes. To do so required diligence and resources – 50% is not good enough in this equation. Both are mandatory for a healthy complication free life from here to the end.
There would be moments where I could not afford insurance. There were moments were I could but they would not afford my diabetes. I would be reminded of the truly chronic nature of my condition when someone told me that a busted wrist was related to my diabetes and not in fact connected to an accident. Do the best you can. There were moments where I could afford the gas to drive home or choose to sleep at work and be able to afford to test my blood. I chose health.
So when the Health Care Reform act was proposed I watched. As it got closer to the vote and the public’s hysteria began to permeate into the conversations that friends and families would have I too had thoughts. Something very real. Moments I could share where I had to choose. Paying a third of my income for healthcare. Using a bag of coins to pay for medicine as the price crept higher. This was my fight and this legislation was for me. I was not outwardly broken, inferm, or too old. I was not hopeless and unwilling. All I was was in a position where my health care was pretty much everything. I was ok with that. It was my life. A diabetics life. I believed in it and it was for me to preserve but the punishment, it’s ostracism like nature that came with it always felt unfair.
The votes happened late into the night. I watched. This was more than a Super Bowl or a historic election for me. This was a vote that would give me some semblance to normalcy. A moment where I could have just a disease and not a financial crippling. A start. It passed.
Two years later I have state of the art testing devices. I am getting ready to receive my first insulin pump. Two years later I share with families and children about my experiences in living with this disease. I tell them never, ever use it as a reason to stop, quit or cry. Two years later I am preparing to run across the United States and to become the first insulin dependent person to accomplish this. Two years later there are more people like me and others who have a better chance. They are cancer patients, they need heart valve replacements, and the early detection breast cancer screenings to save lives. Its more than a reform. For some of us it is a matter of life and death. More than a matter of life and death, it’s a matter of a better life.
Here is our challenge. A challenge to improve our world for today and the future because it is the right thing to do. Maybe not the easiest but part of our calling as citizens and people of the United States. Our man on the moon, our spanning across a continent, our great challenge for this moment. To naysayers and critics who use excuses of “their rights” and think of the sick and people in need as people who are free loading off of them, bringing them down, I challenge them to put any generosity they have ever received and return it. Their scholarships and tax breaks. I ask them to look at their health and it’s basis as the beginning, a foundation and start to anything. It is right thing to support, nurture, and advocate for. As people in a country with a great many advantages and prosperity this is where we begin. Our start in bettering the country.