Every day I feel like I am sitting right on the ridge of a coin. It moves back and forth a bit, but I do my best to stay right there on top, so it doesn’t fall one way or the other, and oh, it does.
My position with JDRF is on top of that coin along with my personal connections to type 1 diabetes, and my personal experiences with epilepsy. I am sure my analogy makes sense to those associated with illness in one way or another.
Thinking of type 1, one side of the coin is positive. There are incredibly successful people living each day with type 1 diabetes, and they are successful in many different arenas. In work and at home, these people are successful and live healthy, active lives. In fact, I know many who put me to shame all the time, because I don’t work out as much or travel as much, etc. Someone diagnosed today can do anything they dream of. They can raise families, they can excel at school and in sports, they can travel internationally, they can become a justice of the Supreme Court, or hey even president! There are some with type 1 who have worked hard to find every avenue they can to become pilots and race car driver! Outside of joining the military there is nothing you can’t do! The simplest and most powerful thing someone with type 1 can do is reach out to someone else who is having a hard time with the disease and work to lift them up. The message on this side of this side of the coin is the positive one, the message that even with type 1, there is nothing you cannot do given the tools and the motivation to use them.
The other side is a harder side to deal with, although it is just as real as the positive side. Diabetes is a dangerous disease. It can take a life in a moment, the management of it is a rigorous game that changes but never stops, and complications are devastating and sometimes debilitating. While news breaks of those defying the odds and living beyond incredible lives with type 1, there also comes news of young children losing their lives and adults dealing with complications that impact their very quality of life. Type 1 is a disease that doesn’t always come al a carte, either. Other autoimmune diseases can add more strain to management. It’s confusing and frustrating, causes depression and anxiety, and needs a cure. Before another life is lost, before even another day is lost to diabetes, we need a cure. We needed one yesterday. This isn’t a disease that is easily managed, it’s a real life enemy, that strikes all ages and every one in a very specific way. I have met so many people who work hard to manage their diabetes and are the pinnacle of health. I also know many people who work hard to manage it, and struggle immensely from high blood glucose levels and scary low ones. Even though long-term complications sometimes make you think that they come slowly, some can come so quickly that it takes your breath away.
Professionally, I have used both messages. In outreach, I am all about the positive side. Children, parents, families and adults need to know that the choices they make today impact their tomorrow. They also need to know they are not alone. It is a constant battle, but because of advances in technology and treatments, and the support of millions, you really can do anything! Just like anything else, it takes drive and work. It also takes the ability to dust yourself off and try again. I like outreach. To bring people together in the spirit of family with the feeling that life is amazing, so fight for the one you want! Incredible job. I also worked on the other side of the coin as a fundraiser. If someone doesn’t live with type 1 or they don’t know about the disease, it’s hard to say donate to JDRF. There are so many places to donate money and to volunteer! Other disease organizations all have the message that we need to get rid of the disease, or educate the public, or provide programs for those living with it, and so on. So, knowing that this disease is dangerous and can strike at any moment, we need to convey that a cure is absolutely necessary. You don’t just stop eating sugar, start taking insulin and that be it. So, if we are asking to fund research into cure and treatment therapies, we need to say that we are saving lives. And its true. A cure will save thousands of lives a year. Plus, it would have huge implications for other autoimmune disease cure therapies. So, here I sit, on the edge of the coin. Having to balance the messages. I take my job personally, probably too personally for my mental health, but the Diabetes Online Community knows what it feels like when the coin falls on its end. Blue candle. The coin falls to the reality that this enemy took another, and I feel it physically when the coin tips that way. Like a punch in the stomach. And then, as Facebook profile pictures start to resume to faces of happy kids, family pets and vacations, the coin goes in the other direction. Life must be lived to its fullest. Between these two sides to the same coin we have to balance.
I always put a disclaimer that not having diabetes or a child with diabetes, makes my input a different one. I honestly cannot know the experience of living every day with type 1 diabetes. Mine was something different: epilepsy. I was a lucky kid, and am a lucky adult. Yes, epilepsy almost took my life on numerous occasions and has had other effects on my health. But because my management of it now consists of taking two oral medications a day and watching my routines, I feel incredibly blessed. It’s there, but it isn’t a weight on me. The other side to this coin is seen when I am faced with what epilepsy can do. I don’t think too much about a cure for epilepsy, because right now I feel that my treatments are controlling my seizures, and I have a kind of cure. When I was having dangerous seizures all the time, I wanted this disease gone and now, and was so frustrated by how confusing it was, not only to me personally, but to researchers and doctors! Epilepsy almost took me, yes, but it takes many lives annually. Also, some people try everything in the book, and they cannot control their seizures completely. I can’t imagine this. Thinking about it makes me cry. Not having freedom? Complications can even include loss of mental capacity. What if I couldn’t do anything without a care taker? What if I couldn’t read and understand or write? But, I get to take my cure twice a day, and live my life. I fear having seizures, and I fear that another unknown factor will come into play and my cure won’t work again. But life is short and beautiful and I balance my own coin, knowing how lucky I am, and reminding myself of those not as genetically fortunate, who need a cure.
I suppose I am writing because every conversation I have includes the coin. I’m from the school of thought that people are not diseases, and there are no diabetics. There are people living with diseases. But we shouldn’t have to live with them either.
Even after coming into consciousness right after having a seizure in a public place, I have never been an epileptic. I’m Lawren.