Disease

I have spent the last month or so in Kisumu – taking a holiday and allowing myself the space and time to reflect and write on these past 5 months of my life.

I am fascinated by disease - probably because I’ve lived with one for the past 18 years of my life. I grew up not thinking about living with diabetes, because it was normal, and I couldn’t remember living without it. As I passed through high school, and moved towards college – things became shockingly more difficult. The highs and lows seemed to stay around for longer, impacting my body in ways that I had not experienced before, drenching my days with haze and lethargy. Last February I transitioned from the insulin pump I had worn for the last 10 years of my life back to insulin shots, after days of no change from high bloodsugars. I wrote about living with diabetes for the first time in my life for college classes – and found that I had a lot to say, that it wasn’t something that as I claimed so proudly ‘didn’t affect me.’

I assumed that the experience I was having was what every other person with diabetes – or any other chronic illness for that matter – was having. Instead of working through how this disease is actually affecting me, I went searching for others’ stories – thinking that by telling theirs, mine would also be told. The problem with this search is the assumption that any other person living with a disease is feeling the same as me. I applied every bad doctor’s visit and horrible day I’ve had to everyone else, thinking they, like me, were screaming to be heard.

I interviewed 20 people with HIV, asking them how they felt about living with it and how it was affecting their lives. Most of them shrugged their shoulders, letting them fall as they told me it wasn’t a big deal. They complained of not enough food and putting their children through secondary school – which are problems of almost everyone living in Kochia.

This past month I’ve thought a lot about disease, about grouping people into that category of ‘living with a chronic illness.’ I thought that they would have an experience similar to mine – that I could generalize and come up with a single, coherent conclusion. Turns out generalizing people like this defeats my whole original dream – about wanting to hear about what individuals’ lives were like outside of their disease, because I have put them in a category, and re-grouped them. That I’ll never be able to understand or write about other peoples’ experiences by asking them surface questions and meeting with them once, or even multiple times. That some people may not even have the luxury of thinking about how their disease affects them because they are so worried about providing the next meal for their family. That maybe living with disease doesn’t affect other people like it affects me – and that I should stop searching so desperately for that same answer.

Diabetes has greatly impacted my life, both positively and negatively. My bloodsugars have been mostly high here – from regular soda and tea filled with too much sugar. My thighs are bruised from injecting myself, and I am not as precise about counting carbohydrates. It is a part of my story – because it’s a part of me. Is this applicable to anyone else? Who knows.

I’m spending Christmas in Kisumu, thinking about where I want to spend the next part of this grant, and writing my own story. I hope you all have a fantastic holiday season, and would love to hear from all of you via email if you get the chance!