Tuesday, January 28, 2014

"Why I Can't Smile" - A Single Mom's Story About Living with Myasthenia Gravis

Amy Guy - The Woman Who 
Couldn't Smile
Many of us with generalized  myasthenia gravis have difficulty communicating through facial expressions. The muscles that normally reflect mood, pleasure laughter or a simple smile are expressions that just don't work properly. So we are often misunderstood during both our speaking and our feedback to others when we are listening. Even after 30 years of marriage my wife will sometimes misinterpret an otherwise lighthearted quip as cutting sarcasm because I cannot smile enough to indicate that 'I'm joking'.

When I ran across the story of Amy Guy, a single mom, I was particularly taken with the headline of "Why I can't smile". It's something that we MGers are aware of but we don't talk about very much. So, from across the pond, the story is re-posted here on MyastheniaGravisBlog.com

Why I Can't Smile

by Tara Russle / Feature writer for the Southern Daily Echo (UK)

EVERY time someone tells Amy Guy to smile, it breaks her heart.

She was even moaned at on her wedding day for not looking happy.

“People were saying to smile in the wedding photos and not look so miserable,” says Amy.

“Inside I was actually beaming and trying my hardest.”

But no matter how hard she tries, 34-year-old Amy physically can’t raise a smile.

“It’s hard, really hard especially being a woman. Barbie doesn't exactly go around with a face like this does she?” Amy says just minutes after joking how she looks like a horse baring its teeth – something she says she feels obliged to say when she meets someone new.

Amy has the rare and life threatening condition myasthenia gravis (MG), an autoimmune disease that affects one in 10,000 in the UK. It means the body makes antibodies that destroy some muscle receptors leading to the loss of fine motor control.

Amy uses a wheelchair and has a severe form of the condition. Under stress or tiredness, she can suffer everything from her facial muscles causing double vision, difficulties swallowing and slurring speech to being unable to lift her arms and legs, occasionally causing her to collapse to the ground.

But today, though Amy’s smile may be invisible, inside she couldn’t get any more bubbly as she prepares to mark 20 years of living with the debilitating condition with a charity fundraiser, Amy’s Hope 20 – and a book launch.

Called Smiling on the Inside the self-published book chronicles her battle against the odds to become a mother to Megan, 14, and Teagan, three, detailing tear jerking moments as well as the lighter moments to prove she hasn't let her condition beat her.

“Having a disability doesn’t mean you can’t achieve your goals,” she says. “That’s what I want to show to my girls.”

Amy, from Totton, was just 14 when she lost the ability to laugh or smile.

She knew something was wrong when a friend tickled her in front of a mirror and she laughed hysterically.

But her reflection told a different story. Her teenage giggles abruptly stopped and she fell to the ground crying, horrified at the grimace she saw.

A diagnosis of mysasthenia gravis soon followed and today Amy endures three days of gruelling IVIG hospital treatment where she is linked to a drip every eight weeks.

The single mum admits it isn’t easy.

“On a bad day I can’t speak, see or eat. Talking now I am seeing double. I do get frightened in certain situations.

“But being a mum you can’t just have an afternoon snooze. My doctors would have me not working, not having children, living with my mum but I couldn’t do that, so I met them halfway.

Amy with her daughters, Teagan
 and Megan

“When I do struggle I find it reassuring to hear other mums find it hard too,” Amy says.

“The hardest thing for me is I worry what other people think. I find it harder mentally rather than physically. Learning to be a single mum was hard and I was only told today ‘Amy it is hard, not only are you a single mum, you are a working disabled single mum, don’t try to rule the world’.”

Thinking about her future, it’s impossible for Amy to hold back her tears.

“I do worry because there is the unpredictability of the condition. I worry about my mum because she is getting older. I want to be able to be there for her and the rest of my family and help them out as much as possible and look after her when the time comes.

“I will never accept it 100 per cent because if I did I would give up,” she says with tears rolling down her face.

But Amy says she lives for her children and therefore has to keep positive.

“In the days after my treatment, it’s like my batteries are recharged and I think ‘yippee’. It’s the simple things I love most like being able to actually walk around the whole supermarket and do a week’s shop and even maybe try a top on.

“It’s all about my girls.”

And though she may not be able to smile, it’s important for Amy to laugh.

She recalls the time she got stuck in a swimming pool in Spain and one of her PA’s tried to pull her out, and says her little girl, Teagan, is the source of a lot of laughter in the family home.

“Because it’s called myasthenia, Teagan thinks I am saying it is mine so she calls it ‘Your asthenia’. She says ‘your asthenia makes you wobble mummy’.

“The whole point of Hope 20 is that anyone with a long-term life-threatening condition can suffer with depression. I don’t hide the fact I do, but in the last few years I've started to realize you have just got to get on with life. I want to get across that though there is a serious side to life, there’s also a very funny side.

“I might not be able to smile but I laugh and laugh. I am aware I cover my mouth with my hand a great deal.

“I’ve heard that the face is a ‘window’ to the soul and you can read someone’s mood and personality by their stare and smile. Only people who know me really well can tell what my face is saying, and well, I guess it’s a bit like my front room ‘window’ the blinds are half shut and crooked,” she laughs.

Tickets are now on sale for Amy’s Hope 20 fundraising afternoon tea.
The event on Saturday, February 15, takes place at Lyndhurst Park Hotel and reflects all of Amy’s loves – cake, music, dance and an art auction.

Live entertainment includes singers, street dance, a rock choir and table magic.

Money will be go to the Myasthenia Gravis Association and Stanley Graveson Ward at Southampton General Hospital where Amy receives treatment.

Tickets must be bought in advance by February 7, and cost £18.50, available by emailing ami.megan @talktalk.net or searching Amy’s Hope 20 on Facebook.

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