Living with multiple sclerosis: ‘I’ve got to get on with it. I can’t let it defeat me’
There are around 100,000 people in Britain who suffer from multiple sclerosis and Carly Houston is just one of them. On her 21st birthday she was diagnosed with the neurological condition, she talks to Neela Debnath about living with MS, working on the ‘Harry Potter’ films and her plans to pursue an acting career against the odds.
I meet Carly Houston at the Espresso Café at the National Theatre. Despite the overcast day she is very bubbly and radiates a positive glow as we chat. “In order to act it’s very much a waiting around game,” she says as she begins telling me how she discovered she had multiple sclerosis.
Just like any other aspiring actress Carly knows how difficult it is to get into the industry and is well aware that for a lot of the time she will be out of work, much like the majority of actors in the industry.
When she first set her sights on a professional acting career she planned to save money and started working at two shops. Despite the hectic schedule and still in full-time education she seemed to be managing. It was only when a customer complained, suggesting that she was drunk and challenging her to walk in a straight line that she realised something was wrong. Carly was struggling to walk across the room in a straight line, veering from side to side. Later on when her father picked her up she had seven falls within the space of two minutes. She was taken straight to hospital.
The birthday diagnosis
Unlike most young people her age, Carly spent her 21st birthday in hospital and was informed she had MS. She expresses her disappointment at the memory, “to be told that on your 21st birthday is a hit in the face really”.
Diagnosis usually occurs between the ages of 20 and 40, affecting double the number of women than men. Diagnosing MS is complex because there is no single test that can diagnose it. However, over nine out of 10 people with the condition are diagnosed using an MRI scan which is how Carly learnt she had lesions on her brain – a sign of the condition.
MS is a neurological condition that affects the central nervous system which consists of the brain and spinal cord, this in turn controls the messages sent across the body along nerve fibres. The condition occurs when the coating around nerve fibres known as myelin is damaged and affects how the messages are sent.
Myelin is often compared to the insulation around electrical wire that makes sure an electrical current travels without any interference. Just like wire insulation, myelin insulates nerve fibres to ensure the messages get sent without any disruption, however MS causes damage to the myelin which can then have an impact on the body.
The condition varies in people and can affect mobility, speech, vision, memory and thinking, among other things. There are several types of MS, the most common is Relapsing remitting MS which affect the majority of people diagnosed, where symptoms appear after a sudden attack knows as a relapse and then fade away, either partially or completely.
This can be followed up Secondary progressive MS where there is a continuous build-up of disability, completely without any relapses. Finally, there is Primary progressive MS which only affects around 10 to 15 per cent of those diagnosed whereby the symptoms gradually get worse over time instead of happening in sudden relapses. The causes of MS are unclear and there is currently no cure for MS but there are drugs to deal with the symptoms.
Living with MS
Carly suffers from relapse remitting and unfortunately she is entering secondary progressive. Last year she had some severe relapses, “I couldn’t talk. I was choking on my drinks”.
“I was crying myself to sleep sometimes. It’s just being grateful for what you do have. If I could work, don’t get me wrong, I would but I think going back to retail, going back to the office is just too much because of what MS does and what it is. Everyone’s different but what it did to me, I can’t see myself ever going back to retail.”
Carly’s relapses have got worse and have increased in frequency, triggered by heat and stress. She has had to use a stick for the past three years to help her walk.
“It varies from day-to-day, from week-to-week, minute-to-minute. I could sit there and go ‘it’s a really good day today’ and then fall down the steps. I fall over a minimum of four times in one day. It does get annoying, it does get quite upsetting at times but I have to try and keep happy because with MS everybody’s different.”
Working on the Harry Potter films
When Carly was around 14 she was cast as an extra in Harry Potter and Prisoner of Azkaban, she also starred in the fourth film Harry Potter and the Goblet of Fire. She started off as part of the crowd and as time went on she was moved closer to the front of the scene and closer to the camera.
“I’ve got a piece of wood with my name on it. It was the happiest day of my life at the time,” she says, referring to the moment she was given a mark with her name on it to tell her where to stand during filming. Although her character was unnamed, she found herself playing both a member of Hufflepuff and Gryffindor respectively. She says that one of the most memorable moments while working on Harry Potter was pretending to confront a creature known as a Boggart which turns into a person’s worst fear. It can only be overcome when a person views as a source of humour and say the word ‘Riddikulus’.
Looking back on her time on her time working on the films she speaks glowingly of the experience: “that was an awful lot of fun. I loved it. I really did love it”. However, she also realises that she probably had MS then, “some extras took the mickey out of me at the time as well. ‘Why are you always walking to the left for? Can’t you walk in a straight line?’ I just ignored it thinking nothing of it until it got diagnosed. It makes a lot of sense now”. She’s no longer an extra and she is pragmatic about progressing in her career.
Looking forward to the future
Carly is like any other young actress and tells me she’s busy auditioning. Has she got any role models? “I did but then I sat there and I thought: ‘well, how many of them can I claim to be like?’ Not one of them is in the situation that I’m in now. I don’t know any famous actor or actress that’s ever been where I am now. So who can I look up to? I’m going to have to look up to myself. Yes, it sounds a little bit big-headed but I’m going to have to because who else is there?”
Throughout the interview she smiles and she is determined to succeed. She has come to terms with it and instead of letting MS control her life she will keep on going.
“No two days are the same. No two days am I fully functioning and I’m fully okay to do something and it is annoying but I’ve got to get on with it. I can’t let it defeat me. I try to be very positive because there’s no point sitting there: “oh, my life sucks”, course it does but it’s not going to get any better if you carry on thinking that is it? You’ve got to get up and try and do something. I’m still trying now. Don’t get me wrong, it’s difficult.”
Carly refuses to let her condition stop her from pursuing her dreams which is inspirational given that acting is a physical craft that relies completely on the body. When we end the interview I am left with an overwhelming sense of positivity, despite it all she plans to keep going and I believe she will.
For more information about MS visit www.mssociety.org.ukTagged in: harry potter, multiple sclerosis
Recent Posts on Health
- Make AIDS History: Keeping the promise from Gleneagles to Lough Erne
- Living with cervical cancer: 'Had I not delayed screening, it may have been a different story'
- Living with Rett Syndrome: An unconventional day out
- Christian GPs and the morning after pill: Much needed clarification
- Justin Webb on the medical advances in tackling heart disease
Latest from Independent journalists on Twitter