The Daily Mail / The Mail, Nov. 29, 2009

'MS WILL NOT MAKE ME ANY LESS MAGNIFICENT'

Donna Karan manager Marlo Donato Parmelee is glamorous, smart … and suffering from multiple sclerosis.

By Catherine O'Brien

London — Donna Karan manager Marlo Donato Parmelee is glamorous, smart…and suffering from multiple sclerosis. Here she tells Catherine O’Brien about her darkest hours – and the strength that these have given her Marlo at the flagship Donna Karan store in London.

Donna Karan’s Mayfair emporium is the sort of place that requires a pre-shopping trip – before you make the shopping trip and find yourself rubbing shoulders with Nigella Lawson, Dannii Minogue, Kelly Hoppen or any of the other style cognoscenti who regularly step through its imposing black doors. A sanctuary for serious fashionistas, the store exudes grown-up luxury. It’s early on a Monday when I make my way past the discreet security guard and several immaculately groomed assistants to the first floor. I’m here to meet Marlo Donato Parmelee – the company’s UK support manager, whose job it is to ensure that no imperfection punctures the brand’s temple of sumptuousness.

Marlo is sitting on a sofa surrounded by some of Donna’s most exquisite autumn/winter pieces. My eye is drawn to a black leather biker jacket (£1,835), a claret evening dress (£2,015), and the ensemble Marlo has chosen for herself today – a light gray cashmere dress beneath a matching wrap cardigan (a combo that leaves little change from £2,000). She is everything I had expected her to be: elegant, smart, professional. But she is also something I hadn’t anticipated – a dynamic picture of health. (Photo credit: David Yeo)

"I tell everyone I have MS, but I also tell them that if I can wear heels, then anyone can."

At 37, Marlo has multiple sclerosis, the incurable neurological disease that attacks the nervous system and can cause problems such as numbness, double vision, muscle spasms, loss of balance and acute bouts of pain. She was diagnosed five years ago after struggling for months with symptoms that – she says only half-jokingly – forced her out of four-inch heels and into a pair of trainers for the first time in her adult life.

Today her slender feet are once again encased in a pair of beautiful gray pony-skin platforms. "Sometimes I lose my center of balance, but if that happens, I grab the stair rail and fake it,’ she says. "I tell everyone I have MS, but I also tell them that if I can wear heels, then anyone can."

MS is often dubbed "the invisible disease" because outwardly sufferers may look normal. "Most people say to me, 'But you look so good,'" Marlo explains ruefully. In one sense, this suits Marlo because she works in an industry where image is everything (and trainers are fashion suicide). But she is also a feisty realist who grasped early on that the right attitude was going to be pivotal to her survival.

Like most people when first diagnosed with a chronic illness, she spent many hours reading the stories of others. Some were helpful, some less so. When she failed to find a narrative that conveyed with raw honesty exactly what she was going through, she decided to write it herself. The result is "Awkward Bitch: My Life With MS," a no-holds-barred memoir that reveals her bleakest moments – she contemplated killing herself more than once – but also the exuberance, defiance and sense of humor that have enabled her to fight her disease and thrive despite it.

The daughter of a construction engineer, Marlo grew up in Long Island, New York, where it was evident from an early age that she was a child of twin passions. She inherited her parents’ talent for music – her Sicilian American father played the trumpet and her Irish American mother sang – and also had a constant yearning for beautiful clothes.

As the youngest of four sisters, she cannot remember a time when she was not coveting their wardrobes. In her teens, she scoured garage sales for designer pieces and developed her own style. During her time at university in New York – she has a degree in classical music – she worked as a sales assistant in luxury boutiques. After graduating, she worked for Chanel by day, and attended singing workshops at night.

When she tells you she didn’t want to stay in New York permanently because "it was too slow for me," you begin to gauge her phenomenal energy levels. By her late 20s, she had become assistant manager of a Donna Karan store, established her own band and met her husband William – also a sales assistant by day and musician by night. They could easily have gone on to fulfill the conventional American dream, but, she says, "owning a house and having children did not matter to us. We wanted adventure."

In 2002, they holidayed in London and familiarized themselves with the music scene, even playing two small venues. "The energy was fantastic and much more open-minded than New York," Marlo says. On the plane home, they decided to try to emigrate, and when they later discovered that Marlo’s mother’s Irish heritage meant Marlo had dual citizenship, enabling her to live and work anywhere within the European Union, it seemed as if fate was giving them a helping hand. In March 2004 they arrived in London for good and within weeks had found work – Marlo in designer sales again and William in banking. Their ultimate aim was to plug themselves into the music scene and begin playing gigs. But before they could do that, Marlo, then aged 31, began to develop strange symptoms. First, the big toe on her left foot turned numb. She blamed it on the pointy shoes she was wearing, reluctantly invested in those trainers and thought no more of it.

A month later, however, while out shopping, she suddenly felt dizzy and overwhelmed by tiredness. Her vision became blurred and she had a feeling in her head "like bubbles popping." Frightened that she might be having a stroke, she slumped on to a bench and waited until the symptoms subsided. She was worried enough to have her eyes tested afterwards, but the test showed nothing untoward. In the ensuing weeks, the blurry vision recurred. A colleague suggested she went to Moorfields Eye Hospital in London, and doctors there suggested she might have a viral infection or that it could be migraine-related. Throughout that summer, she felt under par. "I told myself it must be connected to the stress of moving countries – I was in denial," she says.

One morning, in mid-October, William remarked that she was covered in bruises, and Marlo realized she had become uncharacteristically clumsy. The exhaustion returned with a vengeance, she fell down the stairs at work and found that she could no longer walk in a straight line. A few days later, after a nightmare tube journey during which her eyesight distorted and she became terrifyingly disorientated, she took herself back to Moorfields. "I thought that I had a brain tumor and was going to die."

Moorfields ran further tests and referred Marlo to a neurologist, who booked her in for an MRI scan. While she waited for her results, she had to make several trips to the hospital for check-ups, and it was on one of those visits that the full enormity of what was wrong with her hit home.

"I was in the waiting room," she recalls. "There was a woman there about my age with a walking stick. She was with her mother, who was explaining to another woman how she had woken up one morning with blurry vision, and how her toes had gone numb – and as she went on it struck me that her daughter must have exactly what I had. The woman then asked, 'What is wrong with your daughter?' And the answer came back 'multiple sclerosis.' It was my worst moment – worse than when I actually got my firm diagnosis a few weeks later. I watched the girl struggle to walk out and thought, 'That is going to be me. My life is over.'"

Marlo’s MS was confirmed in December 2004 by the MRI scan which showed multiple lesions on her brain. (Multiple sclerosis means "multiple scars." The disease occurs when a breakdown in the immune system causes scarring to appear on the brain and spinal cord, which damages the nerves. An individual’s specific nerve damage will depend on the sites of the scarring, which is why no two MS sufferers have exactly the same symptoms.)

Her initial reaction to the confirmation was relief. "I had felt like I was losing my mind, but now I had a solid medical reason for what was happening to me." William promised he would always be there for her. Her employers – she was by this time working for Yves Saint Laurent – were supportive, and though her family urged her to return to America, she had complete confidence in the NHS doctors and nurses who were treating her. She also felt that giving up her new life in London would be giving in to her illness – "and I was way too stubborn to let that happen."

However, as she struggled to find a treatment to alleviate her symptoms, there were times when she thought about ending it all. She recalls one episode in the spring of 2005 where the muscle spasms in her legs were so excruciating, she barely slept for three weeks. "I would write suicide notes to William in my head. We lived in a first-floor flat, but I think that had we been on the fourth floor, I might have jumped."

It was not just the pain that led to her despair, it was also the loneliness. "I had William and my family and friends, but ultimately, I was alone with this disease in my brain. That sense of isolation doesn’t go away," she says. She copes "by telling myself that MS is not going to make me any less magnificent, creative, intelligent – or any less anything."

It helps immeasurably that she works in a world where she is valued – Donna Karan in London rehired her three years ago, long after her diagnosis, and provided her with an easily accessible office and flexible hours. "They say theirs is a lifestyle business, and if I have MS, then they will fit in around a lifestyle that includes MS. They look after me, and I give them my all."

Marlo’s job has been tailor-made for her. She is responsible for supporting the managers of Donna Karan and DKNY stores in the UK, organizing staff training programs and working with new sales assistants to help them develop the aura of discreet luxury that is the company’s trademark.

Managing her career and illness is not always straightforward – she recently reduced her hours to a three- or four-day week to help combat her fatigue. But the bonus of her role is that it is flexible, allowing her to fix commitments around hospital appointments. She has never called in sick because of her MS. "A few months ago, I had to walk with a stick because I couldn’t feel my leg, and my boss said, 'Please take a day off.' I told him: 'If I had flu now, I would take the week off, but because it is MS I will come in every day even if I have to crawl.'" She never arrives for work in anything less than what she calls her "supergirl’ uniform – full make-up and those four-inch heels.

"It may sound frivolous, but knowing I look good is a big part of helping me feel good. I have days when I wake up and cry, but I know I’ll pick myself up, put on my red lipstick and get on with the day."

Marlo has relapsing/remitting MS – the most common form of the disease, so called because there are periods when it flares up and periods of remission. Earlier this year, she began taking the drug Tysabri, which slows the disease’s progression. The effect has been so marked that, she says, "I can now go a whole day without even remembering I have MS." Where climbing a flight of stairs once meant pacing herself to the top, she can now jump two at a time. "I did that the other day and almost cried from the sheer joy of feeling like the old Marlo."

Some areas of her life have changed irrevocably, however – the most crucial one being her marriage. She and William separated in April. "I’d like to say it wasn’t connected to the MS, but it is, although not in the way people might think,’ she says. What happened was that her illness shifted the balance of their relationship.

"Because I’m stubborn and so desperate for my independence, I was rejecting him in a way that I wouldn’t have done had I been well. We were always such great friends, but we began to realize we no longer shared that lovers’ passion. William called himself my caretaker, but I didn’t want a caretaker. If anything, I needed less compassion and understanding and more passion and spark. I know he would never have abandoned me, but to keep going and get the most from life, I had to separate from him."

She has a new boyfriend – Tim Love, a musician – but for the moment is living alone, which she finds "scary, but also liberating’. Her biggest fear is reaching a point when she might not be able to walk, "but I try not to let that thought consume me, because the day it does will be the day I give up, and I can’t let that happen."

Although she never regretted not having children, Marlo has recently found herself thinking that she might, at some point, want to become a mother. "That has nothing to do with the MS, and everything to do with me getting older,’ she explains. For the most part, she relishes her future. "MS has changed me, but the funny thing is that I wouldn’t change the new me for anything. I may not have my health, but I’ve found strengths I never knew I had. The bonus is, I now know what I am made of."