What do I know

For seven years, all I’ve thrown at my disease is effort. A few weeks before I turned thirty my rheumatologist and I were talking about stress and all the smaller ways they manifest; waking up not feeling fresh, migraines and headaches, stiff muscles, teeth grinding, jaw pain. What’s also called secondary pain; pain that isn’t explained by the diagnosis but is auxiliary to it. What would’ve been symptoms of stress are aggravated by the SpA. Well anyway, where we landed was on why a lot of people exiting their twenties suddenly discover that throwing effort at a problem does not solve everything. Slogging is not always the solution. Because our bodies slowly run out of all those hormones and excess energy. And that no matter how much we try, sometimes throwing effort at a problem is counter-productive. He talked about how there's a lot of merit in the not-solving of it. In finding a way to make the non-solving bearable and wait for the case to crack itself open. I have found very...

You know I have this fear: That one day my SpA will be so bad I'll struggle to navigate an airport. I'll be one of the young people on a wheelchair, strapped to a buggy with old people, being shepherded by aircraft crew, while everyone else gets to browse the bookstore and choose breakfast dosa. Someone will manage my hand-luggage and I'll be ferried by a much healthier flight attendant my age. I'll be the first to board and the last to alight. Maybe someone I know will see me like this. And I'll smile lamely and wave from a wheelchair. Maybe I'll have to talk sitting. Or unstrap myself before standing up to talk hoping nobody had noticed. Please understand that I laughed till my stomach hurt while writing this. Out of feverish nervousness or because it's really funny I don't know. It's tough, having a chronic, incurable, progressive, degenerative disease. I've lost many things to it already, I don't even know them all. But here's a ...

Have you read My Year or Rest and Relaxation? Oh please do. But that's not why I'm writing this. Ottessa Moshfegh wrote a short essay in the Guardian about the book. About creating a protagonist who just wants to sleep through the misery of being unloved and alone. Anyway, in the essay she writes powerfully and evocatively about why being inside during a plague involuntarily sucks so much: “Doing time” is what we call a sentence in a penal institution. I like to recall what a former prison inmate told me when I asked him what it was like living in solitary confinement: go into your bathroom and lock the door and don’t leave. I tried it. About six minutes in, I started to panic. If I was any good at meditation, maybe I could have actually left my body. I told myself to imagine sun-kissed beaches, puppies, my living room, my mother’s hands, a field of flowers. But the entrapment laced every thought with menace. I got dark inside. Even as someone who has made a career out of...

I'm on the wrong side of the learning curve of a project I'm working on right now and completely consumed by self-doubt. I'm so, so, terrified of putting something out into the world that's so far away from my comfort zone. Rohan says that a little bit of self-doubt is good, but not too much. As if anyone can calibrate feelings so well and dial it up or down seamlessly. But I know that people do get better at it. Because anyone I know who has made anything worthwhile has gotten better at it. Because all the trillion books I've read about writing talk about it. They also say (usually in more elegant words) that managing the fear of being crap is essential to any degree of continued artistic success. Too little and you get cocky, too much and you never make anything. ( FYI I belong squarely in latter group) Rohan was watching Kanan Gill's latest during lunch and I was there for a bit. He talks about art rated "time-pass". How was the movie? Time...

This pandemic came to me in the middle of a full-blown splondylo-arthritic flare. For the first time it's my heel. When foot meets floor, it feels like it was hit by a cricket bat two days ago. Anyone who understands this disease will now what I'm talking about, and how scary it is when a new part of the body is attacked. It's horrible. And at a time when I would benefit from looking after myself first, tending to myself first, I'm so distraught about the plight of migrants. About doctors I love, and doctors who have kept me alive and well. I worry about the economy; and investment leaving the country and bad loans. About bad laws. About data privacy. About consolidation of wealth in the hands of few. About the families in villages not receiving their remittances. About the old and lonely and sad. About friends with fragile parents, friends working too hard, friends not feeling ok, family not feeling ok. For a while the overwhelming worry has been building and ...

For a good rheumatologist, in my opinion, what you want is the intersection of scientist and philosopher.  This is a tough one. It requires the rigour of reacting to empirical evidence. It also requires looking at the greater patterns of the universe. How many people do you know like that? I've had some bad rheumatologists. After my initial diagnosis by a GP,  the first rheumatologist I met was in a fancy hospital in a fancy country. He gave me multivitamins, calcium tablets, and told me that he could surgically burn the nerves in my lower back so I wouldn't feel pain. (This does not work). I had turned 23 the previous week. The next doctor  I met was at a fancy hospital in this country, and he told me that this diagnosis was impossible. Get this: because women simply didn't get this disease. (In fact the male-female ratio is closer to 70:30. In fact poorly gendered data based on poorly gendered medicine is something I will keep coming back to). He asked me if there ...