Tuesday 8 November 2011

Making Light in Shadows

I was recently asked by the Cambridge Lupus UK chairwoman to 'talk to the press', so last week, over a luscious mug of crème brûlée latte, I was interviewed by the editor of the Cambridgeshire Journal for the local newspaper. A very lovely Cambridge English graduate herself, Alice Ryan put together the following piece...

In the Shadow of the Wolf

"Looking at me from the outside, you can’t see anything’s wrong,” says Shaista

Shaista is one of thousands of people in the UK battling lupus – a vicious disease in which sufferers are attacked, without warning, by their own immune system.

SHAISTA Tayabali appears to have it all. Petite, pretty and fiercely bright – she has a first class degree already under her belt, and has just begun an MA – the Cambridge girl seems to lead a charmed life.

In fact, behind the smiling public face, nothing could be further from the truth. Although it wasn’t diagnosed until her late teens, Shaista has battled a vicious and ever-changing autoimmune disease – lupus – since she was a little girl.

Constantly in and out of hospital, she has fought high fevers and unbearable pain, almost lost her eyesight and twice come close to death.

She has taken innumerable tablets and suffered all manner of side-effects, from vomiting to hallucinations.

In short, she’s been to hell and back.

“Angry? Are you kidding? Yes, I’ve been angry. At times I’ve been angry like I could put my fist through a window . . . but I’m not so angry any more.

“Lupus is Latin for wolf. From the moment you’re diagnosed, there’s this kind of metaphor you have to take on: it’s as though you’re living with a dark, shadowy creature that can attack you any time, with no warning at all.

“What I’ve realised, over the years, is that you have to find a way to distinguish yourself from all of that – to remember who you truly are.”

Affecting more than 30,000 people in the UK alone, lupus is thought to be more common than leukaemia, multiple sclerosis and muscular dystrophy worldwide – yet most people don’t even know it exists.

Far more common in women – 90 per cent of those affected are female – it is an autoimmune condition. Described in simple terms as a ’self-allergy’, lupus causes the immune system to produce antibodies which, rather than protecting the body from bacteria and viruses, attack the body’s own tissues.

Lupus can affect any part of the body, any time. As a result, the symptoms are characteristically wide-ranging: pain, fatigue, raging fevers, eye problems, kidney problems . . . the list is seemingly endless.

Currently there is no single test to confirm a patient has lupus – and there is also no cure.

“The reason I’m doing this interview is to raise awareness,” explains Shaista. “It’s an invisible illness: looking at me from the outside, you can’t see that anything’s wrong.

“And no-one’s really heard of it. I’ve had people say ’At least you don’t have Aids or cancer’ and that’s true, I don’t. But, because they haven’t heard of lupus, they don’t seem to take it seriously.

“When people say things like ’Just have fun!’ or ’Can’t you just shrug it off and be normal?’ . . . that ignorance is hard to cope with. I don’t want people’s pity, but I do want their respect.”

Shaista now knows she has had lupus all her life; her mother suffered from various unexplained allergies during her pregnancy, considered an early sign of the disease.

“The first time I ever really had symptoms was when I was about 9; they are usually triggered around the onset of puberty. My family lived in Bombay then. I started to get these mouth ulcers:  10, 12, 15 at a time – great painful pits inside my mouth and throat.”

Doctors diagnosed a vitamin deficiency, so Shaista was prescribed a course of vitamin injections.

All seemed well until, around the age of 11, she was struck down by what she now recognises as a classic lupus ’flare-up’: swollen glands, swollen joints, sky-high temperature. Thanks to antibiotics, the symptoms abated and, again, Shaista’s health returned to an even keel.

When Shaista was 15, her family decided to relocate to Cambridge. “There were riots in Bombay at that time; there was a lot of political unrest,” she explains. “I was just at the point where you have your own friends, you’re finding your own identity . . . and then we moved. It was pretty devastating, to be honest.

“I remember coming here and it being so cold and dark! Every year, around this time, I get deja vu.”

Going on to study first at Sawston and then Hill’s Road, Shaista excelled academically and soon made friends. But, on returning from a holiday to India at 17, she was again felled by a bout of illness – including another uncontrollable fever.

Antibody treatment has “totally changed my life” says Shaista
Antibody treatment has “totally changed my life” says Shaista

Taken into Addenbrooke’s, blood tests showed something was seriously awry. Eventually, Shaista was given a diagnosis: lupus. “I’d never heard of it. I was told to carry on as normal – go off to university, as planned – and just take these medications. Of course, when I got home I Googled it. One of the first things I read is there’s no cure, which was pretty horrible.”

Taking up a place at York, reading English Literature, Shaista was given a tablet usually used for anti-malarial purposes. Being hyper-sensitive to drugs – another symptom of the lupus – she experienced terrifying side-effects, including hallucinations.

“I tried to get to class once, but I spent the rest of the time in bed. I was so ill . . . it’s a very, very painful disease. It’s a down-to-the-bone kind of pain. And the fatigue is not something you can really describe. I was having these hallucinations, seeing horrible things.”

Returning to Cambridge, and in Addenbrooke’s once more, Shaista’s condition deteriorated still further. “The doctors told my parents to prepare themselves. They said ’We can do no more’ . . . I could have died. My body stopped responding to anything.

“The fevers go on and on and eventually, because you’re so dehydrated, everything just starts to shut down.”

Gradually – she was in hospital for almost two months – Shaista rallied. But it was then doctors noticed serious problems with her eyes: glaucoma.

“I almost went blind,” she continues. “Over the years I’ve had so, so many eye operations. The last one included a scleral graft, using donor tissue, which is really quite rare. That was painful and scary – but nothing like as frightening as the thought of going blind.

“After the operation I developed an ulcer on my cornea. Out of everything, that was the absolute worst. I just wanted to die. I begged and begged and begged: I said ’I’d be great as an angel. Please let me out of this body’. But that didn’t happen. And, somehow, I did get better.”

Despite her ill health, Shaista was determined to do a degree. Her ambition was to study at Cambridge University but, because of her illness, she had to give up her place at Newnham. Instead, she opted for a part-time course at Anglia Ruskin, spread over four years.

“I spent most of my time in bed with a high fever,” says Shaista. “By then I was on a chemo drug – I was on it for nine years. Lupus patients are treated with a lot of drugs originally designed for another disease; there aren’t many specialised medications.

“It made me really sick. Sometimes I just couldn’t keep food down, so I got really thin. I had vasculitis in my fingers and I’d been diagnosed with fibromyalgia too. But I was determined to get a first, that something good would come out of it. And, after four years of work, I did graduate with a first.”

Shaista, who has just embarked on a creative writing MA, says keeping journals and penning poetry has helped her cope. “I have hundreds of journals. It helps me to know that what I’m writing down is real. It’s the only way for me to stay sane!”

Latterly, Shaista has also been writing a blog – www.lupusinflight.com – which now has followers across the globe. And she also plans to publish a memoir in the future.

During her university years, Shaista lost a relationship to her illness too: “It didn’t stand a chance; he couldn’t deal with the illness. I don’t even pursue relationships now. It would take something extraordinary – someone extraordinary.”

Shaista spent the year after her graduation tutoring GCSE and A-level candidates. But then, yet again, her health nose-dived, and she ended up in hospital for three months. Again it reached the stage where the doctors could do no more.

“By then I was 30 and I thought ’Either I’m going to stay to really stay, or I’m going’.”

Requesting immunoglobulin treatment – essentially a dose of good antibodies, which she’d had once before in her teens – Shaista turned a corner. Once well enough to go home, she began lobbying for monoclonal antibody treatment: periodic infusions used to stimulate the immune system.

“I wrote the Primary Care Trust a very emotional letter. This treatment is expensive, but it’s life-changing. I’ve been having it for the last two years and I haven’t got vasculitis, I haven’t had any high fevers, I’ve been able to start my MA. If you added up the cost of my various hospital stays and all the other treatment I was having before, I think it’s well worth it.

“I went to Addenbrooke’s for an infusion this week and I was walking around with a big, stupid grin on my face: this treatment has totally changed my life.”

Shaista says her battle with lupus has put an enormous strain not only on her, but her whole family – especially her mother. “To see your child getting ill time after time – and not being able to do anything – has been pretty horrendous.”

Taking up meditation, Shaista says she’s learned to live in the moment instead of worrying what the future holds. “I’m in my 30s and my friends are getting married and having babies; I don’t know how I’d cope with all that – I’m still very fragile.

“But I am getting on with my life and enjoying it. For me, writing is a big part of that. You have to find a way to laugh, a way to be happy – a way to remember yourself.”

By Alice Ryan


RNSANE said...

Shaista, this was such a wonderful article and, of course, being an RN, I know a bit about your struggles but, as I've been a forensic nurse dealing with adult and child sexual assault cases for the past 21 years, I am, certainly no expert. You are a lovely young woman and I admire your courage and fortitude and your willingness to share this struggle. Just doing that, you help more people than you know.

At 67, after budget cuts ended my nursing career, I have moved from my home, retired, very sadly, and have had to downsize, I am off to India for four months, the grand finale of a life time of travel and will return to San Francisco in April to figure out what to do with the rest of my life. I'll keep on blogging, I'm sure...but what else?

I wish you all the best, that your courage never falters though, of course, we all are allowed a day, now and then, for a good cry and to feel sorry for ourselves.

steven said...

shaista i wrote this for you a few days ago . . . http://leakstev.blogspot.com/2011/11/quietude-for-shaista.html
you astonish me!!!

Sherry Blue Sky said...

Shaista, you are SO BEAUTIFUL, within and without. YOU are someone extraordinary - your entire family is -and so I have to believe someone extraordinary will show up for you, as you so deserve. I was interested to read this article because you are so understated, you rarely reveal how bad it sometimes gets. I am so thankful the new treatment you lobbied for was approved for you, and that it is working so well. Good for you with your degree and YAY re going for a masters in creative writing. That is just awesome.

Interesting that it is called Lupus and is like living with a shadow wolf. I live with a shadow wolf myself:) I have CFS and fibro too, but lupus sounds extremely debilitating. I am so happy you pulled through and are doing so well. You have much yet to write. I cant wait to read your memoir! Rock on, bright star!!!!! You are an inspiration.

Kathy G said...

What a wonderful article! I knew a bit about lupus, but now I know even more. Thanks.

Marcoantonio Arellano (Nene) said...

Shaista, I've read your words, listen to your heart, feel your spirit but it is the Shaista of Poetry, vision, heartfelt verve that I am familiar.
Your personal tumult is something I cannot begin to relate to.
I admire your resilience, forthrightness of this malady and your continued willingness to share your enlightened creativity.
You inspire me and you are beautiful. Gracias para todo, Nene.

Ruth said...

Oh I didn't know it was a wolf on your back.

I shake and shudder at this life of pain, all that you have known. I am grateful that the antibody treatment is accessible to you and has changed your life.

You are breathtaking, inside and out. I feel like I'm staring at a sunrise.

Many blessings, kisses and hugs, Ruthie

Andrew said...

You give me hope and inspiration Shaista.

All the very best to you, and much Love.

avecwings said...

it seems so amazingly magical how ppl sepearated by miles become so imp for us that they silently creep into our prayers...
i owe a lot to u..!!!
everytime i read ur blog i come closer to life, beauty and love...

i appreciate your persistence...n wish u a complete life full of happiness and well deserved love..

love you..!

A said...

Shaista, you are such a beautiful person. Inside and outside. I don't even know what to say actually... words fail me.

Shaista said...

RNSANE, thank you so much for your good wishes, particularly the one about my courage not faltering. Yes, that is a god wish indeed. Life is never quite done with testing us :)
But in the meantime, happy happy holidays in India!

Sir Steven, the fact of your dedicating a poem to me astonished me! So lovely of you...

Sherry Blue Sky, my true romantic! No shadow wolf can still that aspect of your nature :)

Ramakrishnan said...

You are an astonishingly brave person who is traumatized by this dreadful ailment and yet you keep fighting the odds cheerfully without allowing this to get the better of you. You are a fierce fighter and I pray to God for some some rapid breakthrough in medical science which can find a magical cure for your condition.Thank you for enlightening about Lupus(about which I have not heard before this) through this wonderful interview.
Best Wishes & Cheers !

peng said...

Shaista ..dear sister... looking so great, god and the universe be with you ... a lovely and strong story of strength and awareness .... hope a lot of people are listening!!! lots of love and happiness to you, little sister....peng

Lubna said...

Dear Shaista
This was so inspiring. Hello from Mumbai. You taught me a lot.

Anonymous said...

Hey there, I know completely what you are going through my dear, and I don't live too far away either. I am 35 living in the shadow of the wolf in one of the north cambridge villages and I was guided to your blog by someone you know.

When I was reading the article, although cliched, it could have been about me. different parts of my body are attacked, but the same deal in the end.

My mother constantly believes it was something she did wrong while she was pregnant with me which caused it, and it doesnt matter how many times I tell her it's not, she doesnt quite believe it.

I also find that I can't tell her when I am most ill as it kills a little bit of her each time she sees me ill.

Thankfully I found someone who married me in sickness and in health, but has seen very very little of that health. He keeps me sane, and he came along when I wasn't looking. We have been together 15 years and we have a little boy after losing 6 before him.

I believe that my real life is still going to come. soon. That's how I get through it.

Reading about people who have lupus too, makes me sadder than ever, but also helps me realise that I am not alone. It doesn't inspire me to carry on, it just helps me get through. Just knowing this burden is carried by others who want to get rid of it as much as I do gives me hope that there will eventually be some wonder drug invented for us.

If it was me all on my own, then I know that would not be a possibility, so knowing that others are going through this hell means hope if that makes sense.

I have just read through this comment and it's so depressing, I wish I could give words of encouragement, but I know theres nothing I can say, because no one can ever say anything to me to make me feel better.

I too get blown off because I look well but am internally jangling. I feel guilty when I cant do stuff and worry that other people think I am a charlatan, and all I want them to do is... KNOW what I am going through and acknowledge that I have a disease, that it's hard and I hate it and that I wish I could do things with them like they do. Respect me, not judge me and if they say to me "what is it then?" show me some courtesy and PROVE they care by going home after that conversation and googling it to be better informed. What would that take? 5 mins??

so, I guess, although I can't make you better or give you a tip to try LOL I can say "I hear you sister, and I respect you for being gracious in bearing this hell" I just hope that I am being as gracious too... I think, probably, I am not though :)

so - it's long, but I will post it anyway because I share this burden with you x

Anonymous said...

Thanks for the post. Here is some more information on Lupus:

How Do You Get Lupus?

I really enjoy seeing and hearing about other people with lupus and how they overcome their problems with the disease. Great article on lupus!

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