Motor Neuron Disease: ‘This disease may have robbed me of my voice but I’m determined to be heard’
For Dubliner Sharon Friel, being diagnosed with Motor Neuron Disease (MND) was like getting a “death sentence”, but she says the worst part of the illness is that it has robbed her of her voice.
The 40-year-old mum has been left confined to a wheelchair by the degenerative disease and now she communicates mostly through an iPad app.
“It’s by far the hardest thing I’ve ever had to deal with. Your voice is everything. It’s the essence of you. Without it you feel cut-off, isolated, removed,” the credit union worker explained.
“I was handed my death sentence on a sunny day in July,” Sharon said of getting the MND diagnosis in 2012.
Her first symptom was cramping pains in her left calf.
“I thought I was wearing shoes that were too high,” she told the Herald.
After a series of tests she discovered that the problem with her leg was a sign of something much more serious.
Now using a wheelchair, Sharon also relies on a communications app installed on her iPad and phone to speak.
“Getting into a wheelchair for the first time was hard but I could still talk and communicate. Yes I was self-conscious, but I could still open my mouth and fight my corner,” she said.
Her six-year-old son Senan likes her to type funny or rude phrases into the app for the amusement of his friends.
Sharon is witty by nature but she admitted that her new means of speaking causes her to miss a beat now and then.
When meeting people who are new to her symptoms, she relies on this humour to put them at ease. “I like to slip in a joke early on; it relaxes people and reminds them I am human.”
Her son takes her changing symptoms in his stride. Sharon and her husband Conall explain the disease in simple terms to him and allow him to come up with questions at his own pace.
“He asks me occasionally why does my voice sound funny, why are my hands curled in or why do my legs not work anymore,” she revealed.
“He is too young to understand or attach any emotions to it. Thankfully he is at an age where it is all about him.”
Being prevented from freely telling her family how she feels is tough, but in times of anger and frustration she is faced with an extra challenge.
“The anger and frustration usually turns into tears. They get the better of me all the time. One of the lesser-known symptoms of MND is uncontrolled emotional reactions,” she added.
“When watching a sad scene in a movie I nearly always have a
prolonged crying episode – my husband knows to have the tissues ready.”
Sharon said that while people’s reaction to her automated voice is mixed, she has also been touched by some responses she’s gotten.
Before Christmas she negotiated with an artist for a sculpture and at home she discovered a note tucked inside that read: “When I meet lovely people like you my heart is open. Thank you.”
“It was just so lovely and totally made my day,” she said.
Living with MND has changed many things for Sharon but one thing has remained the same.
“I’m a people person and my social diary is still full,” she said.
“Despite all the horrible things MND brings it has made me feel loved. I am much closer to my family and friends.
“We tell each other constantly how much we mean to each other and that we love each other,” she said.
“Despite everything going on, I’m still me.”
Sharon’s family and friends have been fundraising for the Irish Motor Neurone Disease Association and have so far raised €35,000.
For the month of February the charity is asking people to take part in a sponsored silence to raise money. Alternatively people can text MND to 50300 to donate €2