Wednesday 13 December 2017

Joy in the face of darkness: Fighting against ALS

She was a personal shopper in Brown Thomas on the day that Constance Harris found herself crying in a shop-floor dressing room. Sharon Malone reached out, and a friendship formed. Their lives were similar in many ways; both single parents of sons, both spiritual, both worked in film and fashion. But last October, Sharon's life changed radically. Here, Constance tells Sharon's story and celebrates the warrior-spirit of her friend.

Sharon Malone
Sharon Malone
‘I didn’t want to tell Timmy. But after about a month I ended up telling him’ — Sharon with her son, Timmy
‘Everybody has been so kind, very giving. I am very happy’ — Sharon’s positive attitude remains despite her debilitating condition
‘I used to see people in a wheelchair and I would be devastated for them’ — Sharon at her home in Dublin

Constance Harris

The significance of the act of reaching out to another human and offering support can be life-altering at the most. And a profoundly felt act of camaraderie at the least.

The day I met Sharon Malone involved one of those acts.

‘I used to see people in a wheelchair and I would be devastated for them’ — Sharon at her home in Dublin
‘I used to see people in a wheelchair and I would be devastated for them’ — Sharon at her home in Dublin

Following a tough few years, culminating in the harrowing experience of seeing my son come close to dying, I had, I thought, come out the other side. To celebrate feeling relief that life was getting good again, I planned a treat - a trip to Brown Thomas for some fabulous new clothes, with the assistance of one of their personal shoppers, Sharon Malone.

An hour later I was in tears in an elegant dressing room.

Not because of Sharon.

Because I couldn't find anything that fit me. Sharon, who had been, up to this point, the consummate professional Brown Thomas staff member, recognised my distress, threw off the slick store manner and said, "Hold on, now, don't be losing hope. I'll find you something, don't you worry." Then she dashed off.

‘Everybody has been so kind, very giving. I am very happy’ — Sharon’s positive attitude remains despite her debilitating condition
‘Everybody has been so kind, very giving. I am very happy’ — Sharon’s positive attitude remains despite her debilitating condition

Forgetting commission and everything else a practical single mum like her should have done, Sharon went to Phase Eight, one of the cheapest labels in Brown Thomas. There she found me two stunning outfits for the price of one leg of a Stella McCartney pair of trousers. To this day, those two outfits are among my favourites. As all women will agree, a salesperson who makes us feel good about our body in clothes wins devotion.

That was the day I really met Sharon Malone. Since then, we have got to know each other, though she left Brown Thomas a year later. We are both single mums, into health and fitness, mindfulness and alternative living. We had both worked in the film business. We had lived in and loved New York and worked in fashion. We enjoy our chats and laughs, talking of men, meditation and our sons.

Sharon is a 'searcher', by which I mean she has spent her life searching for answers - and solutions - as to the meaning of life and how to live a quality life.

Terribly, this stunning, fortysomething woman was struck down last October 16, when she was told that the tingling she'd been experiencing in one leg, which had now spread to the other leg, was amyotrophic lateral sclerosis (ALS), or motor neurone disease (MND), also known as Lou Gehrig's disease.

"I think I got ill from stress," Sharon told me. "I date it all from a year and half before the diagnosis. I was doing a Bikram yoga 30-day challenge. On day 28, I had a bad fall. After, I had a limp. A year on, the limp hadn't gone away.

"I started going to the gym every day. I went on a high-protein diet, the Paleo diet, which, I think now, didn't help."

Sharon's now 17-year-old, son, Timmy, insisted there was something wrong.

"I started getting twitches in my feet," Sharon says. "Then I started getting twitches on the other leg. That was the scary part. I went to all the top specialists. Nobody thought it was ALS. I was told it was a trapped nerve. I was told lots of things. ALS is very hard to diagnose. There is no test. They have to do two weeks of assessments. Eventually, I was diagnosed in Beaumont.

‘I didn’t want to tell Timmy. But after about a month I ended up telling him’ — Sharon with her son, Timmy
‘I didn’t want to tell Timmy. But after about a month I ended up telling him’ — Sharon with her son, Timmy

"October 16th," Sharon recalls. "I'll never forget. I didn't believe it. I started laughing. I had been very happy. I thought it was stress. Maybe I was in denial. But when I was told, I thought, 'I'll beat this'."

The day after her diagnosis, the hospital outlined to Sharon her future: the ramps, wheelchairs and hoists she was going to need to get fitted in her house. At this stage, Sharon was still active and seemingly well, working, taking care of her son, exercising, driving. She'd barely taken in the diagnosis. The scenario the hospital was outlining, true as it was, felt like a death blow.

"We all react differently," she says. "Some people tell you that you need to accept it, live your life, plan what you are going to do for the next few years. I tried thinking along those lines. But I can't do that.

"I believe in miracles and in positive thinking. Being diagnosed with this is life changing, as you can imagine. But you have to get on with it and find a way through," she concludes.

Sharon, as most people might, hit the internet to research her condition. There she succeeded in terrifying herself more than the doctors had.

"I was searching for a solution, a miracle," she says. "People who got better from this. I didn't find any. But I found the Hippocrates Health Institute."

The Hippocrates Health Institute, in Florida, has been in existence for over 60 years. Like eastern health systems such as Chinese medicine and Ayurveda - the 5,000-year-old Indian health system - at Hippocrates they believe that emotions and the food you eat, play a big part in creating illnesses, and possibly cures. The Hippocrates website states: "Let food be thy medicine, and medicine be thy food." For Sharon, who is self-aware and studies nutrition, it was a lifeline.

"I fled to it," she states, boldly. "I have had a very interesting journey and I have very clear ideas about sickness. Hippocrates and the vegan diet, the treatments, and Dr Brian Clement [a director in the institute] especially, have been a great inspiration to me."

Sharon found hope, a positive focal point rather than the negative future she felt was waiting for her at home.

"They have a life-changing programme there. It takes three weeks. There's no salt, it's all vegetables, green juices, clean water. You go to bed early. You are on 50 acres of jungle, free of pesticides. It's a clean environment.

"It was very tiring but I never felt better in all my life," Sharon adds. "It was a big emotional change, too, because you are cleaning out your kidneys and liver and your emotions, everything."

In the United States, many doctors are looking at the American diet of wheat, meat and fatty, sugary, salty, processed food, as being significant factors in a lot of chronic illnesses. Deliberate flouridation of water ceased there many years ago due to health concerns. Irish water has some of the world's highest levels of state-introduced fluoride.

Veganism is also on the rise in America. And what starts in America inevitably ends up here.

"The weird thing was that six months to a year before I got the diagnosis, I was starting to feel positive," Sharon tells me. "I was finding my way. I asked Brian Clement why it struck then. He said that if you were emotionally stressed for years, your system goes way down due to shock and emotional stuff. It can't fight viruses, which could be the cause of this."

Sharon did the three-week Hippocrates programme, before returning home to Dublin from Palm Beach. "I came home for Christmas and I couldn't see a way [to get better] here. So I went back. After a few weeks, I went off the diet. I couldn't stay on it. I was going to Dunkin' Donuts and started eating burgers again.

"Breaking the diet made me mentally worse. Being on it made me feel cleaner. After a month or two I tried to go back on it. I am more into it now. I do four juices a day - 50pc sunflower sprouts, 50pc green veg. My body shape went back to what it was - curves in all the right places, without exercise. I feel great on it, very positive. My mind is very clear. I wish I had discovered it sooner."

Sharon stayed in Florida for several more months because it felt hopeful and the warm climate made it easier to move. She tried stem-cell therapy, but it failed. In June, as her body's ability deteriorated, she returned home.

The dashing, always active, adventurous Sharon I knew, is now immobile. She can move one arm, with which she can hold a cup and drink via a straw. Someone has to feed her. Hoists are used to get her in and out of bed, to help get her to the toilet, to get her dressed or into a chair. She has a wheelchair, but after a while it hurts her and affects her breathing. Her speech is low, and at times halting, as ALS affects all the body's abilities. She requires 24-hour care.

Yet, I can attest that Sharon has never looked nor sounded better. She attributes that to following the vegan diet and what she learnt in Hippocrates from Brian Clement. Sharon desperately doesn't want to end up in a nursing home. Because there - and this is my opinion - she will have to accede to the medical attitude that says there is only one way this illness will end. The State pays for 31 hours of care per week. There are 164 hours in a week. While she is at home, she still has a semblance of her own way of life; her family are dedicated, casual and upbeat, taking their cue from Sharon.

Her father, Tim Malone, a former Aer Lingus engineer, has been supporting her and comes every day to visit. As does her lovely Auntie Rita and her sister, Nicola, who brings her little boy, Harry. Trevor, Timmy's dad, helps out, too. On the two days I visited, Sharon's home was constantly bustling with life and buzz. Her carers are brilliant, upbeat, supportive women. It's Sharon's love field.

"Everybody has been so kind, very giving. I am very happy." Sharon told me, and I believe her. Such a life could not be possible in a nursing home, with a fixed routine and visiting hours.

Timmy, Sharon's son, splits his time between his home with her and his dad's. "When I was diagnosed, they told me: 'You have to tell your family. You have to tell your son.' I didn't want to tell Timmy. But after about a month I ended up telling him. He had been playing guessing games with me for over a year before."

Timmy is as valiant as Sharon. Now in his Leaving Cert year, on the day of our shoot he came home early from school to be with his mum while we were doing our pictures. The story was that he was there to get his picture taken with her, but really he was there to make sure that Sharon was OK.

While with us, he lifted his mum when she asked and when she said, "I need someone to make me smile," he just looked at her and she cracked up laughing.

There is an incredible bond between the two. So much knowledge - war and love, annoyance and laughter, pride and pleasure. He's Sharon's hero. Timmy is a warrior. Like his mum.

Being with Sharon, seeing how she is living, made me appreciate all the more Sharon's desire to stay living in her own home. I saw the vital role that carers, friends and family make in her life: the constant need for someone to be present, to move a limb that has slipped uncomfortably, because, with ALS, even though muscle function is gone, pain is still present; someone to pull your top down because it has ridden up your back and is hurting you; someone to feed you, take care of you. Sharon is choosing to believe in miracles. Living at home is that miracle.

Her friends, as people often do, have come together and organised a tremendous fund-raiser bash. All proceeds will be used for Sharon's care and for maintaining her quality of life. This is her desired miracle.

The event, A Night for Sharon, will be held on Thursday, 9 October, in the Sugar Club, Dublin. Ray D'Arcy will be master of ceremonies and The Stunning, The Usual Suspects and Jessie Heffernan are among the acts donating their time to the cause. Tickets are through the Sugar Club website, priced at €30 and donations can be made through the club's Facebook page. It promises to be a great night.

The late Colm Murray, who was diagnosed with ALS/MND, made a celebrated documentary charting his illness. MND - The Inside Track was broadcast on RTE last year. In it, Colm outlined his attitude to his condition: you have two choices - give in to it, or make something of it. He chose the latter and offered himself to research projects and highlighted the condition through making public his own experience.

Sharon Malone, too, is choosing to make something positive of her situation by seeking the positive. She feels that there is a lot of negativity in Ireland with regards to illness, prognoses, and other options of treatment.

Brian Clement, the Hippocrates Institute, and the alkaline diet, helped her shake off the power-robbing nature of her condition, enabling her to feel better, stronger, hopeful - powerful - again.

"You realise what is really important in life. Like," Sharon says with a laugh, "if I had a second chance, I would lose all my inhibitions." What inhibitions? I enquire.

"The silly stuff," she answers. "That my arse is too big, that kind of thing. Like, you know, you don't appreciate your health when you have it.

"I used to see people in a wheelchair and I would be devastated for them. But it is not so bad when you are in it. Life goes on. I have a very full life. I am able to enjoy people."

I have seen people brought low and utterly reduced by illness and I have see people emerge, phoenix-like, from the ashes, the embodiment of life triumphant, love and grace. Sharon Malone and her son, Timmy, are such people.

"Anything positive should be the focal point," Sharon says. "In clinics, when bringing people in, positive reinforcement, any positive reinforcement, is needed in this recovery. Belief is what we need. We need to believe in getting better. We need belief in something.

"Hope is hope."

Sunday Independent

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