A guest blog, written by Arthur Ainsberg, was posted yesterday on DiabetesMine.com. DiabetesMine was founded by Amy Tenderich, who was diagnosed with Type 1 diabetes in May 2003. She writes of the site: “I started this blog to connect with others, to offset the feeling of isolation with diabetes, and to sort out and share some of what I was learning. It’s my “gold mine of informational nuggets,’ if you will…”
A full re-posting of Arthur’s guest post is below:
Arthur Ainsberg is the successful director of a New York-based financial firm. He is also a survivor himself and successful “hobby author,” who is just completing a new book on the discovery of insulin — “a drug that turned a death sentence into something more akin to a chronic nuisance.”
According to early reviews, his book Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle is “an important read for anyone with diabetes” and at the same time “an enjoyable read for those who love mystery and human drama.” Today, a word from Arthur himself on the journey that is chronic illness, and the medical miracles that have kept us alive:
A Guest Post by Arthur Ainsberg
At age 11, Elizabeth Hughes was diagnosed with Type 1 diabetes. Her parents, Antoinette and Charles, were devastated — especially when told she had less than a year to live. It was 1919 and insulin had yet to be discovered. Elizabeth’s only recourse was to starve her body — severely limiting the calories consumed — so that she might live just a little longer. The treatment was not only ironic, it was painful and difficult to maintain.
But in 1922, when Elizabeth had lived longer than anyone had hoped, she became one of the first and most famous diabetics to receive insulin. It saved her life and returned her to health. The tireless, and often tumultuous, efforts of a group of Canadian researchers had transformed Elizabeth’s fate. And the impact of their discovery stretches across 90 years affecting diabetics around the world to this day.
The story of this amazing little girl and the medical breakthrough that saved her life is profoundly personal for me. You see, Elizabeth’s story mirrors my own. Like Elizabeth, I was given a diagnosis that would change everything, and I, too, would be indebted with my life to a new treatment.
It was 1975 and I was 28. One morning I awoke with a lump in my neck. The diagnosis: Hodgkin’s disease. I had a 25-year-old wife, a four-year-old son, and a disease that had invaded my life without invitation or regard.
Hodgkin’s disease is a cancer of the immune system. And until the 1960s, a diagnosis was uniformly fatal. But thanks to advances in treatment, including radiotherapy and chemotherapy, it is today highly treatable.
In fact, Hodgkin’s disease patients are often told how lucky they are. Believe me, this is a kind of luck I could live without! Well, that’s only partially true. The disease was unwelcome, to say the least, but had I been diagnosed just over 10 years earlier I wouldn’t have survived. Elizabeth had been granted similar fortune. She was lucky enough to be diagnosed just a few years from one of the greatest medical breakthroughs of our time. Still, the road is not an easy one.
After my diagnosis I became an expert on cancer. I learned a bevy of multi-syllabic words and terms related to my cancer. I spent many summer days holed up in the library at Mount Sinai Hospital reading every book on Hodgkin’s. Because the disease had only so recently become treatable, there wasn’t anyone to look to as a model of longtime survival, no support groups to attend. So knowledge and an understanding of my disease offered some measure of comfort, some semblance of control.
Elizabeth Hughes approached her diagnosis with the same determination, keeping meticulous records of every calorie she consumed and analysis of her sugar levels. She knew what metabolism was and the amount of carbohydrates in everything.
When Elizabeth began her insulin treatment, it brought triumphs that for anyone else would be mundane, but were for her grand symbols of life. These included eating a banana or grapes or macaroni and cheese for the first time in over three years. How I can relate to the ordinary-as-extraordinary! For me, it’s sitting in the doctor’s office and hearing the words “looks okay.” Those two words grant passage into another year of life.
I know how Elizabeth felt after her diagnosis, fighting to stay positive. How when she first began her insulin injections, that despite the swelling or the numbness of her leg from multiple injections, she was grateful for the life it allowed her. I relate to the agony her family felt, watching helplessly at her side. Her father, Charles Evans Hughes, was one of the most famous men in America as U.S. secretary of state, but even he could not make her disease go away. I also understand the lasting effects her experience would have on her.
My post-diagnosis life is dramatically different. I dread annual physicals, pay close attention to every mole, bump, and lump. But I also eat better, exercise, and, most importantly, take the time to enjoy life’s pleasures. I’ve traveled around the world, been to every baseball stadium in the country and take care to hug loved ones. I will never take life for granted.
At the time of her death in 1981, Elizabeth had injected herself with insulin some 42,000 times, but she never talked about having diabetes. Perhaps it’s because she grew up in a time when illness of any kind was not talked about, or perhaps she just didn’t want to be defined by her disease.
For me, I gladly talk about my experience with cancer and take pleasure in offering wisdom, guidance, and comfort to anyone who may be facing a similar path. And though Elizabeth didn’t talk about it herself, today her story serves as an inspiration to all who face struggles in life. Elizabeth’s life, and mine, are proof of the profound and lasting impact a medical breakthrough can have. And that is something I will pay homage to with every breath I take.
[The book Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle will be released in September 2010 by St. Martin's Press.]