I don’t know where to start.
I’ve wanted to write this piece for a while, but I kept waiting for ‘it’ to end; for closure, so I could tell you what happens at last. But, that’s not happening any time soon, so I guess I’ll start at the very beginning. (A very good place to start!)
Amma, M and I got Covid in April. He tested positive, we didn’t, but we had the symptoms and were down for a week. Soon after, both my grandparents got it too. My grandfather had a long list of co-morbidities and was rushed to the hospital. It then became a race to find oxygen cylinders, blood, plasma, Remdesivir, etc. Somewhere in the middle of all this, I developed an ear ache. I couldn’t really be bothered about it because my grandfather’s condition worsened and he passed away on the 4th of May.
Over the next couple of weeks, my ear ache turned into this ‘drunk, woozy’ feeling. I would feel disoriented, unable to focus, and like I was not fully stable. The ear pain eventually reduced, but I started to feel a sensation of ‘swaying’, like I was on a ship or the vestibule of a train. The first doctor I saw said that the ear pain might be because I wasn’t chewing properly!
Two more ENTs and one neurologist later, they were still unsure. Over the course of a month, I was ‘diagnosed’ with everything from Meniere’s Disease and Vestibular Migraine to BPPV (Benign Paroxysmal Positional Vertigo). None of the medication worked and further examination was needed to figure if this might be an autoimmune disease. Some blood tests, an MRI scan and a Lumbar Puncture later, they arrived at Post-infectious Cerebellitis. Basically, the antibodies that I had developed from Covid had caused inflammation of the cerebellum. It was rare in adults and I would have to undergo an IV steroid course.
In the meantime, my symptoms had worsened. I was unable to sit, stand or walk without support. I was using a walking stick, and most days I still needed a person to help me. I could not bathe without help and barely slept because I constantly felt like I was moving. The following week was one of the most physically challenging weeks of my life. Already debilitated, the steroids and lumbar puncture caused severe headaches, nausea, and gastric issues. Most of that week, I slept by sitting up, feeling like I was going to collapse. By the 4th day, I was done. I could not take it anymore; mentally broken and physically exhausted, I forced myself to go to the hospital for my treatment.
A week later, my symptoms remained. A new doctor at the same hospital said to give it time. We sought an nth opinion at a new hospital. I had to be admitted because more tests had to be done. Five days in the hospital and another set of MRI scans, blood tests, neurological tests, etc. later, I was told it was not Post-infectious Cerebellitis and that I had not needed the steroids. In fact, my peripheral nervous system had been damaged and the vestibular (balance) system had been affected. What was it called? They could not tell me. They taught me some exercises, put me on some more medication and sent me home.
It’s been over a month since I’ve been back home. The symptoms reduce off and on, but never go away. The ‘good days’ are days when I wake up feeling okay, can read a little and don’t need any support to get through the day. But, by evening, I am unstable and on that boat again. The bad days are days when I spend most of my time in bed. Audiobooks have rescued me on these days.
That’s just the physical stuff; the mental toll has been immense. The greatest part of the anxiety was the ‘not knowing’. Not being able to name it, read about it, understand it and make sense of it. It’s lonely. To go from doing your first headstand and being the fittest you’ve ever been in your adult life, to being unable to get through a day without support for even the most basic tasks.
In the middle of all this, I read Joan Didion’s The Magical Year of Thinking. She begins the book with –
Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.
The question of self-pity.
She’s talking about losing her husband, but it made sense to me because I was losing control over myself. How do you grieve the loss of your old self when the one you have now is not the one you asked for (cue Sara Bareilles’ ‘She used to be mine’)? Didion raises this question of self-pity and it got me wondering about whether I had avoided it during this period. Had I wallowed in the process of trying to make sense? Was I graceful in the face of this storm?
Since I have been home, I’ve done my own research. I looked at medical journals and Googled jargon to understand what was going on. None of the doctors were able to help me. I finally arrived at Persistent Postural Perceptual Dizziness (PPPD) or triple PD. I watched videos of doctors describing triple PD and I finally found what was wrong with me. I felt heard. Someone truly understood what I meant when I said, ‘I feel like I am drunk, floating and swaying’. I shared this with two of my doctors and they agreed that this sounds like what it is. A rare and fairly newly classified disease, most doctors don’t even know about it. How, then, are we to treat it? They’re clear that there is no timeline for recovery. I won’t be okay by x date.
When I went back to the neurologist I was last seeing with this information, I was gaslit and told that she would not listen to me. She did not want to hear about what I had read, though she herself could not tell me what was wrong other than the vague ‘Your nervous system has gone haywire’. I was shot down and made to feel like I had done this to myself, that my being stressed from the inability to sit, sleep or walk was making me sick. That it was just in my head. She can’t help me because it is not her expertise, but what about the harm she caused?
How does one deal with this trauma? I’ve been thinking about reading accounts of people living with these kinds of disabilities (My therapist told me that using this word and accepting it will help me comes to terms with what is going on with my body) but I resist because it’s difficult to accept the permanence of it.
Today, M stumbled upon an article written by Brian Platzer in the New York Times* about his experience with triple PD. He talks about the loneliness of having a chronic vestibular disorder; this invisible disorder that creates chaos within you but makes things appear calm. So much of what he wrote resonated, and M realized that there isn’t too much literature on this. That we are constantly torn down by this inability of people to understand what is wrong or how bad this is. To find doctors who ‘get’ it; I’m still searching. The funny thing about this is also that it’s at the intersection of Otorhinolaryngology and Neurology; so, the ENT doctor will say ‘Go to the neurologist’ and the neurologist sends you back to the ENT specialist. You’re stuck in the middle, feeling like no one wants to actually help.
I’m a planner. I like to have a goal, a timeline, a deadline. I work backwards. I make lists. Now, I have this illness that has no timeline. We don’t know if there is an end to this or when that might come. I can’t plan for the next day, not like before, because if I wake up with a ‘bad day’, all plans are shot.
I knew I wanted to write this, but I wasn’t sure why. It was originally to try and make sense of the loss of yoga the way I knew it. Then it was to make sense of this disability for myself. And now, it’s also to share it with the world and let other Roshinis know that they are not alone. That what they feel is real and valid. I promise you it is not just in your head, even if you yourself have doubted it. It is as powerful as it is invisible and It.Is.Real.
The article by Platzer that we stumbled upon inspired me to open up this .doc and write on a ‘bad day’. Now, I guess being able to do this small act counts as a ‘good day’.
Article by Roshini Suparna Diwakar