I don’t have Type 1 Diabetes, but I lived with it for 32 years — through my husband, who died of T1D in August 2006, exactly 31 years after the day we married. I knew going in that he carried T1D in his body — diagnosed around the age of 7, though because he had atypical symptoms, I suspect he carried it for at least a year before a diagnosis was made. I was a nurse (I have a degree in nursing) and while we knew life wouldn’t be easy, we thought we could manage it — and besides, there’d be a cure, right?
We settled in Calgary in 1976 and had 2 children — in 1981 and 1985 respectively. Within a year of our youngest’s birth, my husband’s eyes began to show the effects of T1D, and his BP started to rise — a sign of the beginning of kidney failure. It took 10 years for his kidneys to fail. Meanwhile, he became a stay-at-home dad. Our kids were in school and I was working in the business world and doing well; my income was the main source of support for our family, with a bit of help from CPP disability (nothing from his prior job due to his ‘pre-existing condition’).
He began dialysis in the fall of 1996, and injured his left foot 6 months later. That took 2 years to heal and by this time his dietary needs were very rigourous, but we were doing okay. In 1999 he had a heart episode and a stent put in; in 2000 he had open heart surgery (a single by-pass); in 2001 he lost his left leg below the knee and in 2002, he lost the right, the same way. In 2003 he aced his license to drive a hand-controlled car.
By then our children were adults and away from home. We sent them both away to university so they could learn to be on their own and live in what we hoped would be a somewhat less stressful atmosphere. Watching one’s father die by inches took a real toll on both of them — and on me. I has taken me over a decade to sort myself out, and the trauma of living with T1D — when there was NO psychological support for that kind of long-term series of losses — is why I support JDRF and its work.
I’m a textile artist and for the 10th anniversary of my husband’s death, in 2016, I created an art installation called ‘Mark on the Body’, which included a self-published book about our journey. Only one venue has had the courage to exhibit it, because it isn’t pretty, but it did what it had to do to help me heal. All net proceeds from the sale of the book ($10 per book out of the $15 price) were divided between JDRF Canada and Diabetes Canada. The installation is available to be exhibited, but I am not actively pursuing this at this time. If a venue comes forward and wants me to describe it with the expectation of showing it, then I will give that consideration.
What I want JDRF to know from my story is that the person who carries T1D in his/her body is **not** the only one living with it. His or her parents, spouse and children — anyone close to him or her — they ALL live with it alongside him or her. Thank you for giving me this space to tell my story.