Interview with Shaista Tayabali of Lupus in Flight
Updated: May 20, 2020
Our first interview for Lupus month connects the journey to poetry
Our research for National Lupus Awareness Month took us through the looking glass and down the rabbit hole of resources, clinical trials, scientific literature, patient and caregiver stories. In this work I came across the blog Lupus In Flight that was entirely different from the rest told the story of a living with Lupus that was equal parts vulnerable, poetic, and illuminating.
Shaista Tayabali is a UK-based writer and poet, and her blog began as an archive for her poetry. Shortly after she started, however, she was hospitalized for three months and Lupus transformed her blog just as it would other aspects of her life. I reached out to Shaista for an interview and she was kind enough to share with me her journey to diagnosis, how she copes with her condition, and how she's been faring in the midst of the COVID-19 outbreak.
I am so thankful to Shaista for sharing with her story with me and The Client Centered Network readers, I hope her story spreads empathy to those who care for patients with chronic conditions in every setting.
The interview below represents the one individual's unique experience and is not a recommendation or endorsement of any particular therapy, course of treatment, or medical advice.
CCN: Your blog Lupus in Flight is lovely and very unique. Tell us a bit about yourself, your poetry, and what inspired you to start the blog.
ST: Thank you so much for reading me. The title of the blog comes from the first line (and title) of a poem I wrote in my first year, post diagnosis.
Lupus in flight,
on a hot and burning night;
would I were the cool breeze,
the intangible dream, gliding in and out of sight. I am a dream weaver and hope trader, for better times and wiser minds. This body cannot be all I mean, this life cannot be all she seems. And moonlight gleams so far away, and snow falls on some other's way. The trains are constant, as time is not, and tomorrow's tidings remain unknown; but birds will sing and love will grow.
Low and high-grade fevers are part of both the systemic disease as well as the marker of recurrent infection. I was burning with fever most days, most nights, a kind of soupy nightmare, and I imagined the disease as a bird, taking flight, up and away into cooler skies.
I have written poetry since I was a child, and over the decades have filled many handwritten notebooks with poetry. By 2008, although I had completed an English Literature degree, and had been teaching English part-time, I had reached a place of profound stuckness, in my creative life as much as my medical life. I was not getting better, and I was not yet published. So on January 1st, 2009, I started a blog with the intention of posting my poems online, like a back catalogue, a before-I-die archive. Only I became so ill by February 2009, that I was hospitalised for three months, and my blog became a lifeline to people I had never met, who were lighting candles for me and loving me back to life.
CCN: We understand that the journey to a Lupus diagnosis can be a long and winding path. Can you share with us how long it took to arrive at your diagnosis and any obstacles you faced?
ST: I was symptomatic by the age of ten, with excruciating mouth ulcers, giant gouges in my flesh. My joints became hot and swollen and then, with infection, the high fevers. I had tachycardia and a heart murmur, so I was diagnosed with Rheumatic Fever. I was given a wheelchair, assigned total bed rest, no school, and strong penicillin for months until I appeared well enough to resume normal life. It took another seven years before the disease reared its head in enough of a dramatic fashion – high fever, blood work awry, weeks of hospitalisation. Fortunately for me, because I had returned from India with the fever, I was treated by the Infectious Diseases department, which did so thorough an immunological study, that the diagnosis of Systemic Lupus Erythematosus was made on the basis of my dsDNA and ANA readings. At eighteen, I was formally a lupus patient.
CCN: When you first started the blog or when you first shared your diagnosis with others, did you find that people had an understanding of Lupus? Did you find that people had any assumptions or misconceptions about the condition?
ST: When my Infectious Diseases consultant pronounced the diagnosis in front of my parents and myself, none of us had ever heard of it before. My father is a doctor and lupus was still an enigma for us all. It was fairly hellish navigating the rest of my teen years and twenties in a world that could not understand why I had become sick, and why I was still sick. Family offered advice and suggestions. Society offered juices and alternative therapies. ‘Have you tried…?’ The worst part was knowing even the Rheumatology department wasn’t entirely comfortable in treating a disease that had a name but no manageable behaviour. Auto-immunity is a world unto itself. It needs a fine toothcomb that delves into the microbiology of auto-antibodies, not simply, ‘And how are your joints today?’ The landscape has changed massively today, thanks to advances in biologics, and the internet. I would like to think I have played a part in raising awareness of a life lived in the shadow of something as sinister as lupus.
CCN: How does living with Lupus impact your daily life? Other than writing, have any other strategies (meditation, mindfulness, yoga, etc) helped you cope with daily living with a chronic illness?
ST: A thing you will be told, and perhaps even tell yourself, is that you are not the disease, and the disease is not your life. But. That’s just semantics. Auto-immunity is a life turned upside down from the inside out. No part of me escapes its chaos and confusion. Healing has been the work of several PhDs worth of exploration – philosophically as much as practically. Mindfulness and meditation through Thich Nhat Hanh’s engaged Zen Buddhism, yoga when I can bear to stretch, Reiki, acupuncture, dietary adventures. Most of all, my relationship with Bed. It is the place I return to over and over again through the course of any day. From it, I can draw reserves to paint, to cook (a stumbling mess sometimes), to teach, to study, and to give love and energy to those I encounter.
CCN: How often do you have to interact with the healthcare system to access your treatments (pharmacies, clinic appointments, labs, etc)? How has the current COVID-19 outbreak impacted your ability to get the care you need?
ST: It is a mammoth beast of a thing – the patient vs the healthcare system. I am at the hospital, clinic and pharmacy so much of the time that my calendar revolves around appointments – both as an outpatient and an inpatient with recurring infections. The NHS is an incredible system that rises to its many (many!) challenges, but the patient’s work often includes resisting the dehumanisations that occur as a result of modern medicine’s reliance on machines, on data. All these appointments have come to a physical end for now. I have had to switch from intravenous immunoglobulins to subcutaneous immunoglobulins – which means I am sticking two sharp needles into my flesh every week and slowly infusing the human plasma. I have a friend also paddling in the same boat as me, so I don’t feel too alone. And I live quite close to my local hospital, so I am fortunate in feeling a sense of security. An odd security, since being sick means you live insecurely almost all the time!
CCN: What is one thing you wish everyone understood about living with Lupus?
ST: Lupus is an individual disease, but it generally arrives with a host of companions, known in the lingo as co-morbidities. My most impactful secondary disease is glaucoma. My eyes have been ravaged by the high doses of pulse steroids that were pumped into me as a teenager. My sight is impaired, the optic nerve damage shreds my happiness, and pain is soul destroying on the bad days. So far, tiredness is about the only fact people attach to a person living with lupus. Tiredness is the least of it, really. But it is a special, enervating, sapping fatigue. Its cause though, isn’t malaise or laziness or depression… I would hope that with COVID-19, some understanding of immunology has permeated the general public’s perception of what it can mean to have your immunity work against you. How it can feel to be consumed by something invisible. What it can feel like to live in fear and yet force yourself to rise, to momentarily transcend, only to fall, and that cycle continue over decades. That cycle is a life with lupus.
CCN: Finally - as you're a writer and poet - what are you currently reading, and can you recommend any books to uplift us this spring?
ST: For upliftment, read the classics… ‘Anne of Green Gables’, any of Georgette Heyer’s Regency romances, ‘Pride and Prejudice’, Wodehouse, David Sedaris, Billy Collins, Marian Keyes. I am reading… Barbara Kingsolver’s ‘Small Wonders’, Clarissa Pinkola Estes’ ‘Women who Run With The Wolves’, Amy Tan’s ‘The Opposite of Fate’, and several other books that I pick up from my library at home, and lovingly caress, just glad to feel a little less pressured into doing. Being, just being, is enough. For now.