I wanted to be a veterinarian when I grew up. That's what I remember of my career goals before type 1 diabetes - if you could call them that, I was only 5 after all. We got to dress up one day at school and I remember wearing one of my dad's white work shirts with a stethoscope (a real one, as my aunt was in nursing school) around my neck and a box of my stuffed animals in my arms. This loose idea vaguely represented the thing I most wanted to "be" someday; I loved my cat Tiger and when we got Sparky (a.k.a. the Best Dog Ever) a couple of years later my heart was set firmly on my chosen profession.
My luck still held for a while thanks to living in my home state of Illinois. The Children's Health Insurance Plan, or CHIP, had a high risk pool for people like me - those with 'catastrophic' illnesses like AIDS, cancer, juvenile diabetes and cystic fibrosis - who would never find coverage on their own without a job that offered it. I was grateful the day I received my enrollment card. That feeling quickly turned to shock when I saw my proposed monthly premium: $475.00. For nothing but the coverage itself. My deductible was $5,000.00, which in the late 1990s was amazingly high (and still is for an individual). I had insurance, sure, but it would be October or November of the following year before I actually didn't have to pay for everything. I was doing something I loved, and that I was good at, but following my passion meant paying the price, literally, for my health. For a while I tried to make it work. But it was becoming obvious I'd have to find a job with insurance, regardless of what I actually wanted to do with my life.
There are ways not to work for a living. There was a time when women weren't expected to have a career. I could have filed for unemployment and neglected my health to the point I would qualify for disability coverage. (I know a few 'healthy' people who did just that, unethical as it was.) But I wanted to work and liked having my own little career. I enjoyed having the money to pay my own way, to get along in life without depending on someone. And I liked being a productive member of society. I tutored English for a few years to help people like me to develop job skills. I volunteered at the hospital where I was diagnosed, in part to show kids it was possible to live a 'normal' life with type 1 diabetes. When we moved to Florida and Texas for my husband's job, I went stir crazy for a few weeks until I landed some type of employment. If my body can handle it, I want to keep working as long as I can. I want to contribute, even if I have to compromise by working in a job that might not be the best fit for me.
Now we go back in time to dark days of worry and panic, of feeling like a ship without life boats. It's almost as if the people in charge want me to fail, just so they can survive.