I was diagnosed with type 1 diabetes in 1973, when I was four years old.
Diabetes care was different in those days. There was no blood glucose monitoring. I had to pee in a cup, which did not give me any real indication about my blood sugar. There was no internet, no Facebook, no Instagram. The only images I saw were TV commercials about how people with diabetes get kidney failure, lose their limbs, and eventually die from their condition.
As a child, I got the memo I was 'sick' and 'different.' My mom had to come everywhere with me in case I had a hypoglycemic reaction. It was embarrassing and isolating.
I threw myself into dance. It was my escape, my exercise, and my well-being. I also developed an eating disorder. I would binge and starve. I would eat an entire cheesecake with a box of laxatives for lunch. Looking back, I'm not sure how I survived.
This was all happening in the late 1980s into the early 1990s. I would take my insulin and eat whatever I wanted. I had no idea how to manage blood glucose. I knew I did not feel well, and I had sores popping up on my body. Once I went for a blood glucose test in a clinic, and it was over 400 mg/dL. I was overcome with guilt and shame, but I smiled, shrugged, and lied through my teeth that I had the flu. The nurse looked at me with disbelief.
I knew in my heart I was killing myself. I finally went into treatment and began to recover from my addiction problems. I live with diabetic retinopathy in both eyes, and I have been legally blind since 1992. It was a necessary wake up call for me, and that's when I began to take responsibility for my health. I saw a doctor for an A1C, and my result was over 13%. A normal range for a person without diabetes is between 5 and 5.5%. I received a blood glucose meter, and I started checking my blood sugars. I began working with a doctor to better manage my insulin. I still struggled with my diet, but I began to see the effects the foods I chose had on my diabetes management.
It was a slow process of taking charge. I also began to overcome my shame and deal with my anger. Over time I began to make better food choices, and my blood sugar results reflected my new behavior. I was checking my sugar levels more and better managing my insulin. I am happy to say today, my A1C averages consistently in my goal range.
In 2009 I was hit and run over by a New York City express bus. Pinned under the tire of the 15-ton bus I vowed that if I survived, there would be a victory dance. My right leg was crushed, nearly amputated, and subsequently rebuilt. Diabetes dramatically complicated matters.
At the time of my accident, I wore an insulin pump. I was on a burn ICU for two months and taken off the pump and put on an insulin drip. The ICU nurses checked my blood sugar hourly. After four months in the hospital, I was discharged and found the insulin pump did not work for me due to delivery and infusion site obstacles. I went back to multiple daily injections. My activity level was severely limited. I was still having significant surgery and battling a severe bacterial infection in my bones from the initial impact of the accident.
Months of surgery and rehabilitation turned into years, and I had begun checking my blood sugar up to 14 times per day. By now, I knew that keeping my blood sugar in range was a crucial part of my healing and recovery. I was motivated to keep my leg. To do this after it had been literally rebuilt meant I had to be even more diligent than ever about my diabetes management.
During recovery, I quickly learned hospital nurses and staff don't always know about type 1 diabetes management. I often knew my sugar was trending high but was told I had just been checked and it was 104 mg/dL. I would try to explain my insulin was no longer in my system, and in about 30 minutes, I would be over 200mmg/dL. This type of interaction happened more times than I would like to admit. Fortunately, I always had my own meter kit and insulin with me and often would make my own corrections.
All in all, I have had 20 surgeries. Today my leg is functioning well. I am walking and even dancing again with my own professional dance company 'The Victory Dance Project.'
Over the course of 46+ years of living with diabetes, my actions and reactions have evolved. The technology and ideology have changed and made the practical aspects of diabetes living more manageable. I now view my diabetes as a benefit. I lead a healthy lifestyle. I have learned many life lessons from my diabetes, including patience, planning, and managing the unpredictable. I no longer feel shame about living with diabetes. We are never victims of our circumstances. I remind every audience to whom I speak, and I continue to share the idea that we can all 'Dance Because We Can.'
About Amy J
Amy J is an award-winning author, speaker, coach, and choreographer. She is an expert focused on transforming trauma into triumph and creating your victory dance in life. Her vast artistic and business expertise partnered with a series of life and death adversities gives Amy a unique and personal perspective that will inspire, encourage, and empower everyone to 'Dance Because You Can.'
Her book of the same name: 'Dance Because You Can' 5 Steps to Transform Trauma to Triumph sheds light on the reality of daily living with type 1 diabetes. In 2019 she also published 26 Tips for Easier Living with Diabetes.
Amy is the subject of a full-length documentary feature film titled - 'Amy's Victory Dance.'