Joe Wotawa

My mother has very vivid dreams. One remains clear in my own mind because of the detail in which she first described it to me — and because it involves me.

Before my fifth birthday, my mother dreamt that she held a child while swimming in an open body of water. She saw no land, and she did not know how she arrived in that situation. She simply experienced swimming with a young child in her arms.

The dream made an impact on her because the child in her dream had no face. She remembers confusion at swimming with a faceless child in her arms before the dream became more intense. A shadow began approaching her, so she had to swim away from whatever caused it with no shore or help in sight — and she did not know what cast its shadow over her and the child.

My mom continues to share this dream with me because of what happened just months later. At age 5, my immune system attacked my pancreas and disabled it, leaving me with a diagnosis of type 1 diabetes.

The image of swimming alone at open sea offers a very real image of how it feels to live with this disease.

At first diagnosis, many type 1 diabetics have no idea of where to seek help, information or sound medical advice. While the family doctor proves a reliable first step, the specialized treatment that the disease requires often leaves families and patients at a loss because they do not have access to qualified medical care owing to geographic, financial, or logistical limitations.

My parents had the great advantages of employer-provided healthcare, a local Catholic children’s hospital that allows patients to pay according to ability and paid time off from work so they could drive me to appointments during work days. Even with insurance, my family needed the ability to pay less than the full cost of visits with the doctor and nutritionist because of the cost of lab tests, insulin, and other supplies. We did eventually acquire the financial stability to pay full cost for these visits, but such a drastic change in life certainly demanded years of adjustment, both in lifestyle and in budgeting.

A great number of Wyomingites do not have access to such charitable care that my family enjoyed 29 years ago. Without the insurance coverage that I enjoy through my employer today, my annual total cost for diabetes care in 2020 would have totaled slightly above $21,000, with just over $5,000 for insulin alone. Many type 1 diabetics simply cannot afford to pay such sums, but we also cannot choose not to pay them. Without quality insulin and informed care plans, we die. Stories abound in the United States of type 1 diabetics rationing insulin or switching insulin types and dying as a result.

The image of isolation at open sea captures the feeling of living with diabetes because community support does not exist on the scale that diabetic households need. 

Not knowing where to go if disaster strikes also recalls the second image: the unknown force casting its shadow, forcing my dreaming mother to flee without having safety in sight.

Every diabetic’s body differs from the others, though we all in some way share the same symptoms. Treatment of type 1 diabetes requires routine and pattern in diet, exercise, stress levels, health and medication. Any disruption to any of these areas can drastically alter blood sugar levels. Anyone with responsibilities in life knows the difficulty of maintaining any pattern in one of these areas, let alone routine predictability in all five. 

Even with the best of routines, blood sugar levels can still pose threatening challenges. For example, just last month I had three overnight levels veer into unsafe ranges, even though I had maintained my routines during the day. Without the privileged ability to monitor these levels constantly, I would not have detected them during my sleep, and I could have suffered a diabetic seizure or worse.

The shadow often emerges from disruptions in medical care because of cost. Emergency rooms cannot provide ongoing care for those who cannot afford insulin, and when my fellow diabetics do seek emergency care because of lack of insulin, the entire community shoulders this cost.

Expanding Medicaid would broaden the number of diabetics and other chronically ill members of our communities who can afford to live. Our state can protect the most vulnerable from the life-altering damage of deferred medical care. 

Please do not assume we have this disease because of our own failings or tell us how to live with diabetes. Supporting us as we seek the medical care we need — and accompanying us as we bear the social and emotional stress of this condition— will help us far more. We diabetics, quite literally, are worth it.

(Joe Wotawa works for the Catholic Diocese of Cheyenne as the director of pastoral formation, and volunteers as the Wyoming chapter leader for T1International. He lives in Cheyenne.)