Defiance.

Guest Post by Angela Stienne (stay tuned for her Instagram takeover the week of May 28, 2018)

[Image description: Angela has blonde hair and is smiling at the camera in a black sweater. She is seated in a room with large paintings on the wall and gold-painted chairs with red cushions.]

---

I remember my supervisor telling me one day, "The thing is, people don’t have awareness of their own mortality, but you do". It struck me, and I haven’t stopped thinking about this ever since. I have been made aware of my own mortality time after time, through countless health scares and, paradoxically, it has been my driving force. I wrote my PhD thesis in three years with the constant, gripping, fear that I would die (or be physically unable) before I could finish it. It kept me up at night, and kept me going, kept me writing, kept me from the outside world. I needed to write, because I was mortal – like everyone else, but just slightly more. I have chronic Lyme disease. Something else that struck me during this journey is how many times I have been called brave. Or strong. I feel neither brave, nor strong. But I have strived to be defiant.

Dreams and Disease

I was 13 years old when I decided to become an Egyptologist who would work in museums. I have been asked on many occasions where this passion comes from and I have never found an explanation, or at least one good enough. I know why: I needed an escape. At 13, I started to be sick, and tired, and tired of being sick.

It took ten full years before I was diagnosed at 23 with Lyme disease. I was sitting at a desk at the Musée du Louvre, with my leg in a cast, after getting my knee punctured – it is the puncture that confirmed a Lyme diagnosis, the only diagnosis that seems to be universally acknowledged for Lyme disease, while blood tests remain contested across the globe.

Time and Hope

My first thought was not sickness; I had known the whole time – while facing a medical body unwilling to listen and acknowledge my medical conditions – that I was sick. On that day, what struck me was time. Time that would become scarce. And my first, somewhat irrational, decision at the hearing of my medical sentencing, was to sign up for a PhD and to start a month later, before I even completed the last stretch of my MA. My PhD was survival, as it was defiance in the face of adversity.

It was long, for a three-year degree. And terrifying. And thrilling. I have never felt more vulnerable, more desperate, more unwell and more terrified than during my three-year PhD journey. I moved five times in three years, had to relocate home for six months to undergo intense Lyme treatment, took every antibiotic on the market. It all failed: The Lyme. I lost hope, appetite, vision, precious time, perspective, money, friends.

Chronic illness is hard, invisible illness is harder, but the idea of not being able to do it is terrifying. Writing became a silent rebellion against the vagaries of my terribly human body that was giving up on me; I found a family in my school, hope in my writing, unlimited, relentless, pure support in my supervisor and defiance in finishing my thesis in three years to the day I had started. In the face of uncertainty, agonising pain and loss, I found defiance in doing that strange thing I had set up my mind to do when I was 13: To write a PhD thesis.

Not Brave or Strong, but Defiant

How odd it is that being mortal is so terrifying at times? I accomplished that one thing that seemed impossible, and I did it on time, and at a young age. And somehow, there were talks that it would make me a motivational speaker, someone to inspire and aspire to. Strong and brave. When I finished my thesis, I found myself with a very large, very heavy, and very nice big book. And my health in shambles, still, and my mortality a personal problem, still.

There are so many battles to fight. There is work to confront, and growing physical disabilities to accept, and decreasing energy and strength and hope and vision to confront. So, really, a PhD did not solve my problems; I still have chronic Lyme disease, and it is not getting better. And some days, you will find me on a stage somewhere in the United Kingdom giving a passionate talk on my research, tutoring students, mentoring researchers, and training professionals. But as I go home and stare at the stars, I cannot but think about all the things I will not have time to finish: Can I write that book? And then I think about the things that I have done – not just the writing, but the surviving, and the living, and the defiance in doing these.

I like, in these moments, to think about the fact that the term diversability was coined for people like me, and so many others, who sometimes might not feel strong, and some nights not very brave, but are so incredibly defiant and face mortality so beautifully.

---

Angela Stienne is a museum researcher and arts and education enthusiast. She recently completed a PhD in Museum Studies from the School of Museum Studies in Leicester (UK) and starts working with ArtReach in Leicester this April on socially-engaged arts projects in the United Kingdom. She has chronic Lyme Disease and hypermobility disorder. 

---