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15 minutes with… TV journalist Stephanie Scawen

13th November 2014 by Nicola Pates

Stephanie Scawen

Last year the Al Jazeera TV journalist Stephanie Scawen presented MS and Me, a film about coming to terms with her MS and investigating the significance of the latest MS research. This year she was keynote speaker at the MS Trust Annual Conference, our event for MS healthcare professionals

What kind of feedback did you get after MS and Me was broadcast?

The feedback was amazing. Most comments were very supportive of me with lots of comments about how brave I was, which was very flattering as I personally don’t feel brave. Things are just the way they are. I had many offers of snake oil cures and treatments which I just ignored, and many links to an American woman MD’s online video about how she cured her MS by eating bucket loads of kale every day (yuck), which also seemed to be a bit of a scam to me as all she really seemed to be doing was trying to flog her book, rather than exposing her cure to scientific scrutiny. But overall the feedback was amazing.

You said your ambition for the film was “To show people with MS that they can do whatever they want to do. You just have to approach it slightly differently.” Do you think you succeeded?

I hope so. For people who are not disabled or who do not have first-hand experience of dealing with someone with disabilities, it’s very hard for them to imagine what life is like being unable to do things as normal. The idea, for example, of losing a leg in an accident, would be for many people unbearable. But when they are confronted with that reality they get on with it, because you just have to. Look at all the Paralympians who do such amazing things!

When we last spoke you were coming round to the idea of using a mobility scooter or a wheelchair. Did you go ahead with that? If so, how are you finding it?

When my left leg started spasming towards the end of last year it was the most sensible thing to do in the end, as my walking had become so slow and difficult and I was in a lot of pain, so a wheelchair just meant I could get around more quickly and safely. And the sky didn’t fall in as I had feared. Generally people have been very helpful with it. And I get to queue jump everywhere which is good. I’ve had a few ‘exciting’ episodes with my chair which I discussed in my speech. It certainly ain’t boring.

We’re delighted you agreed to speak at this year’s MS Trust conference. Having travelled the world as a journalist, reporting from war zones and scenes of disaster, did the prospect of speaking to a room full of MS professionals hold any fears for you?

No. I was more afraid no one would understand my sense of humour!

As a journalist do you have any thoughts on how MS – or potential cures – are covered in the media?

Most articles are reasonably balanced, but it annoys me that they pretty much always refer to MS as a crippling disease, as if a diagnosis instantly places you on the scrapheap. For the majority of people it’s not. There’s an old media phrase “if it bleeds, it leads”, so the headlines will always focus on the best or worst outcome. “Scientists find cure” or “MS drug kills patient”, for example.

And the headlines talk about a cure as if it will be on the shop shelves tomorrow. I wish I could say journalists should check their facts for accuracy or at least balance, but in this world of 24-hour media the critical details seem to get missed out.

A TV journalist travels from Malaysia to Orkney to discover what new research means for people with MS

25th October 2013 by Stephen

“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 scawen

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.

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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.

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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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