The long journey to MS Positive

NIA MAGOULIANITI-MCGREGOR

Diagnosed 10 years ago with multiple sclerosis, Krok, along with husband Dov and 25 friends and supporters, recently climbed Mount Etna, Europe’s highest active volcano, to raise funds for her new charity MS Positive.

And raise funds they did. £80 000 in fact. That in itself is no mean feat. But Krok also returned home embracing an unintended gift. It was something resembling inner peace.

“The climb was an exercise in mind over matter. Though I nearly fell once or twice, I was in a meditative state. It was a G-d-like experience. I kept thinking: ‘G-d is allowing me to climb this mountain. Look what He’s doing for me.’ It was a time when time didn’t matter.

“When the epiphany struck me that life itself is about the journey, about what’s going on in between the spaces, I felt complete peace. I know now life is about being mindful, about being conscious.”

But the story starts 10 years ago with a doctor’s diagnosis.

“You have MS.

‘ “”The words just rolled off his tongue,” she says. “But for me? Mind-blowing doesn’t begin to describe it. I was 30 years old, with two small children.

“I was angry and sad at the same time. I had low moments. You know that iconic figure of a girl in a calliper holding a charity collection box you see in malls? I thought that was now me.”

But Krok comes from, as she puts it, a “driven family” and she decided not to take this new illness lying down. She also had the benefit of the late PR guru Suzanne Weil’s input.

“You’ve going to live with MS for the rest of your life. Make it your friend.” Therein was the start of Krok’s internal journey towards a positive outlook. Somehow, she realised, she had to make peace of this “new norm, the new me, my new life”. She had to, as she says, “take the good out of the bad”.

“I’ve been blessed in my life. I always had everything at my fingertips. I’ve received the best medical treatments and support, and I thought: ‘What about those who don’t?’”

Initially, she responded to this idea by fundraising for the MS Society.  “It’s an amazing charity, but I felt something was missing. I wanted to provide the personal, bespoke emotional and practical support that, with the best will in the world, is always a challenge for an organisation on the scale of the MS Society.”

So, Krok, along with friend Janine Oppenheim who has experience in running a charity, launched MS Positive – “a charity with a can-do attitude”.

Aimed at supporting individuals and their families in North London who are affected by MS, the charity is set to provide a helpline, a programme of exercise and fitness classes, and emotional as well as practical support and advice through a range of forums. All free of charge, Krok says it will be fully functioning by January next year.

“I want to teach people there are no barriers for those of us affected by MS. It affects everyone differently, yes, but mental attitude plays a role. How we respond to our circumstances makes a difference.

“Personally, I had to learn to slow down. To be conscious and mindful in every moment. I do Pilates which helps. I’ve learnt than even breathing needs to be purposeful. I’ve learnt every new beginning bring other beginnings.”

There was another happy consequence of walking those 60 kilometres in three days, crossing two fresh lava fields and running down over 400 metres of loose stone. “My walking is better than ever. I believe that the climb up Mount Etna has re-patterned my brain.

“Mount Etna certainly wasn’t a luxury-type experience. We stayed in hostels, tents and mountain refuges that I may not have chosen in the past. But I’m so glad we did. There were people there from all social backgrounds. It was amazing. When our guide said to me one day: ‘My mother has MS’, it felt truly inspirational. I knew we were doing something right. That everything happens for a reason.

“Sir Edmund Hillary once said: ‘It is not the mountain that we conquer, but ourselves,’ and I finally understood what that meant.

“The mental challenge was harder than the physical one. My trainer, Colin Church, was fantastic. He watched every step I took. He helped me prepare in every way but one: I really thought there would be a kiosk with a cappuccino at the top!”