“There’s a big world out there. I’m not ready to stop seeing it,” says Stephanie Scawen
Stephanie Scawen is a journalist and producer for Al Jazeera TV. She’s based in Kuala Lumpar in Malaysia and specialises in human rights stories. She was diagnosed with MS 15 years ago but was determined not to let it interfere with her globetrotting career and enthusiasm for diving. This year, after being ‘outed’ at work, she agreed to present a film about her MS and her worries that, after a living an active life with relapsing remitting MS, she might now be entering the transition to progressive MS.
Stephanie with two of the people she met on her MS journey: Angela, who was diagnosed with MS when she was 14 and her mother Lydia
The film follows her journey to Orkney, the ‘world capital of MS’, to find out how researchers are beginning to understand the genetics of MS. She then continues to Cambridge to find out how scientists believe stem cell research offers a key to future treatment, and then to London for a medical opinion on whether she really is in transition. Along the way she meets many positive, pragmatic people living with MS, and discusses her MS properly with her mum for the first time.
The film is informative, engaging and frequently extremely moving. Stephanie, the hard-nosed journalist who has reported on the atrocities of the Khmer Rouge, is forced to confront her own fears and doubts. But she also finds reasons for hope. The two-part film screens from the 24–31 October on Al Jazeera TV and is available to view online on YouTube.
Stephanie talked to the MS Trust about the background to the film and what the future holds for her.
I first got MS symptoms as I emigrated to Hong Kong in 1996. I didn’t know what it was then. The doctor I saw told me it would go away, and was probably viral myelitis, and not to worry. And it did go away. The second attack I had was double vision, which of course made me think I had a brain tumour. That went away too. Finally, 18 months after the first attack, I developed optic neuritis. I really did think I had a brain tumour by then. An MRI revealed a lesion on my brain and the ‘mystery’ was solved. I had a sneaking suspicion by then, as the opthalmologist suggested it as a possibility
All I knew about MS then was that Jacqueline du Pré had had it, and she died young. So I cried a lot, drank, smoke, read all I could find on the net (still in its infancy) and then decided to stop feeling sorry for myself. Why worry about something you can’t control?
MS in Malaysia
Living in Malaysia is probably one of the best and worst places to have MS. Best because it’s so rare here. They didn’t even think it existed in Malaysia 30 years ago. Even now there are probably fewer than 1,000 people in a country of 30 million. It does mean, however, that I can’t get the best specialist care I may need. That’s not to say my doctor here doesn’t know what he’s doing, but there’s no way he has the same exposure to the experience that my doctor in London does.
Stephanie in hospital in Malaysia, being monitored after her first treatment of fingolimod
Malaysia is also a poor country, so doesn’t always have the same rehab equipment that the UK has. I asked my ortho-podiatrist recently about getting an FES (Functional Electrical Stimulation) device for my foot drop, but he said I was the first person to have ever asked about it, because it’s so expensive. I get my walking stick in the UK because there’s a better choice there. Thank God for the internet.
When I was first diagnosed I looked at the web resources that existed then (back in the day of 256mb dial-up — slow,very very slow: bit like me now). It all seemed so utterly depressing. That’s not me. I didn’t want to be a disease with a person attached. I might have been in denial. But denial is good. I didn’t want to spend my life worrying about what might NOT happen. You only live once, right? Since I was diagnosed I’ve travelled all over Asia, become a dive instructor, hiked the Inca trail. We never know how long we’ve got.
I’m the same person I’ve always been, with a slight complication
The idea for the film came from being ‘outed’ at work. I had previously never told any employers about my disease because when I was diagnosed the HR manager of the company I was working for recommended I be let go because I “would cost the company money”. I only found that out later, after I had actually got a better job. Their loss. So I wanted to show people I was still the same person I’ve always been, but just with a slight added complication.
It was hard for me to see the footage of me in the film where I’m distressed. It makes me cringe every time I watch it. I think we all have an image of ourselves and how we think we appear to others. So to see something else is difficult. I fear it will make others laugh at me. Who knows? Too late now I guess.
The biggest challenge making the film was standing on the beach in Orkney. It was utterly freezing. The windchill made it about minus 9 degrees, and I was in a raincoat. Not a surprise I couldn’t move afterwards.
There’s a big world out there. I’m not ready to stop seeing it
I think making the film has made me more determined to carry on doing what I do for as long as I can. People here in Malaysia don’t expect disabled people like me to be travelling on my own. Even my physios think I’m a bit crazy. I’ve just come back from a five-day trip to New Zealand, organised with about three hours notice.
Stephanie remains an active diver. “In my dreams I dive,” she says. “In my dreams I’m not disabled.”
But two things: I haven’t finished doing whatever it is I’m here to do. There’s a big world out there. I’m not ready to stop seeing it. Second there’s a mortgage and a car loan to pay, and a retirement to save for (lotto win/millionaire husband appearing notwithstanding).
It’s hard sometimes, I won’t deny that. But you can’t give up. I won’t give up. Sometimes I wonder if I will ever know when it’s time to hang up the reporting boots? I can’t get an answer, so I guess it’s not now.
The sky didn’t fall in
Will I have to compromise in future? Mum has been trying to encourage me to use a wheelchair when I’m out with her in the UK, to make it easier for us to get around. I’ve strongly resisted, but the other day at the hospital on the way to physio, one of the hospital concierges showed me some pictures of a small mobility scooter, which looked kinda funky, so I’m seeing a demo at the weekend. That’s a big step for me. It took me nearly a year to say ‘I am disabled’. Guess what? The sky didn’t fall in, but it felt like it might at the time.
My ambitions for the film? To show people with MS that they can do whatever they want to do. You just have to approach it slightly differently. Being stubborn seriously helps and so does a healthy sense of humour.
For people who don’t know about MS I’d like it if the film showed them it’s not the dreadful disease that it’s perceived to be. (Damn Jacqueline du Pré!) I know I’m lucky, considering how long it is I’ve had MS. But people also need to understand that walking with a stick does not render someone completely incapable of rational intelligent thought. Their shins will meet my stick if they think otherwise!
The MS Trust has provided key funding for ongoing stem cell research: find out more here.
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