Lupus chick #8: Shaista Tayabali

Shaista Tayabali is a poet and writer living in a leafy green village in England. She has probably had lupus all her life - her first flare occurred in early childhood with high fevers, swollen joints and mouth ulcers, but she wasn't diagnosed until she was 18. She writes a blog at http://www.lupusinflight.com is finishing her Masters, and working on her memoir. Today she's treating us to a short story from her repertoire.
"I thought about different aspects of living with lupus - the most unique one medically with me is the damage done to my eyes - I have steroid induced glaucoma alongside all the other diagnoses of SLE, lymphadenopathy, vasculitis, hypothyroidism, etc etc...
But the most interesting aspect of having lupus for me, has always been the life of stories I encounter in hospital. I have spent so many lifetimes in hospital - and learned so much about compassion and humanity. So the thing that represents me the most would be any anecdote from any of my admissions.
Here is the one I have chosen..."

SHADES OF LOVE

Monday, August 27, Hepatology Ward

On some days, women cry at the same time. I don't normally but today someone else's crying was just that little too much to bear. I thought of curling up, but then I swung my legs off the bed, marched over to hers and hugged her tightly. Her husband looked startled, but good man, he leapt chivalrously out of the way. I took her so much by surprise, she stopped crying and started laughing. A reaction to a drug has caused her skin to be rubbed sore with itching and turn bright yellow with liver damage. I caught her jaundiced hands in mine and noticed the length of her nails.
"Now where are you off to?" she demanded.
"Scissors!" I called out bossily.
"Funny thing," she said, a few moments later."While you're cutting my nails, I don't feel like itching."

Years of hospital admissions have made me quite brave, but when the nurse advanced with the daily warfarin injection, I blanched.
"Go 'way," I pleaded hoarsely.
"Do you want to do it yourself?" she asked.
I perked up. Inject my own stomach? I took the needle and plunged and the job was done! The nurse hadn't really thought I had it in me. I looked up to find I had an openmouthed audience.
Hah!
"I can't believe you just did that," she said, shocked.
Some years ago, my big brother watched these daily injections administered into his sister until the pain and compassion in his eyes squeezed at my own heart.
But doing it myself? It was sort of... fun... in a peculiar way.



Find out more about Shaitsa in this interview with an English newspaper has more detail... .http://www.lupusinflight.com/2011/11/making-light-in-shadows.html