Javaria Malik walks slowly, her megawatt smile eclipsing the slight limp in her gait as we meet in one of the busy residential clusters in Jumeirah Beach Residence.
At first glance, there is nothing out of the ordinary about this 32-year-old from Lahore in Pakistan. She extends a friendly handshake and leads me to a nearby coffeeshop. ‘It’s my happy place,’ she says, ordering a frappé with me at the counter.
She then leads me to a corner couch at the back of the coffee shop and sits down very gingerly. ‘I literally can’t sit anywhere else,’ she says. It is only when she struggles to get up later that the reality of her condition really hits home.
Javaria is a walking time bomb.
‘I don’t know how long I’ll be here but I hope I’ll live long enough to spread awareness about my condition,’ she says.
Because Javaria is suffering from spinal muscular atrophy (SMA), a genetic disorder where one’s muscles gradually weaken. The condition is caused by a loss of nerve cells that control muscle movement. It’s an ‘invisible disease’ that hits you without warning.
And there is no cure. The disease is degenerative and people with SMA struggle with motor function from childhood to adulthood.
‘The children who play football here probably think I’m just weird but one time they were playing and the ball rolled next to me. They asked me to kick it back, but I just stood there looking a bit freaked out. I couldn’t actually kick it,’ she says.
She has Type 3 SMA, also called the Kugelberg-Welander disease, which typically causes muscle weakness after early childhood. People with this condition can stand and walk unaided, but will begin to have difficulty in walking or climbing stairs over time.
‘While I was growing up, I used to fall down a lot. Fall was my middle name,’ she says, ‘I thought I was just clumsy but then I started to struggle climbing the stairs.
‘I used to go to school 20 minutes early because my classroom was on the third floor and there were no elevators. One of the girls used to tease me about how I would grab onto the rails and almost twist my body just to get up the steps.’
Falling and breaking a bone remains her biggest fear. ‘Last year, I fell more than 20 times. This year, my target is 10, but I have already fallen three times!’ she says with a guffaw.
Walking can be a bit of a struggle, she says. But crutches won’t be of any help to her as they also need muscle power to operate. To compensate, she has learnt to find balance by walking on her forefeet. ‘And I have to wear the most comfortable footwear I can find,’ she says, removing a slightly deformed foot from a well-worn grey Skechers. The foot is slightly bent on the front, hard calluses forming on her toes and foot pad. It’s a battle scar that she wears with pride.
‘I’d rather struggle walking on my own than end up in a wheelchair,’ she says with determination in her voice. Experts say the deteriorating muscle control will eventually put many people with SMA in a wheelchair. ‘But I have made up my mind that I will never get on a wheelchair,’ she says defiantly.
Javaria says it hasn’t been easy trying to make peace with her condition. It was frustrating at first, she admits. ‘At one point I even got angry at my parents for bringing me into this world,’ she says. She was taken to dozens of doctors in Pakistan but none could pinpoint what the problem was.
‘My siblings never treated me like I was different, so that really helped boost my self-esteem,’ she says. The support of her parents and two siblings made it easier for her to cope with her condition, although they didn’t know what it was until finally, three years ago, a specialist gave her the diagnosis that would radically change her outlook in life.
‘When I found out I had SMA, I had mixed feelings. I was relieved to have known what had been plaguing me all these years, but at the same time I was petrified with the what ifs,’ she shares.
‘The biggest blow was when my doctor told me I could no longer do this, or do that, and that I was eventually going to need some sort of assistance. That I couldn’t travel, or get on a plane. So the first thing I did was move to Dubai,’ she says.
It was a defiant move. ‘I wanted to prove to everyone that despite this condition, I can live life on my own terms,’ she says.
She now lives comfortably alone in an apartment in JBR. Her day starts at around 11am, with time to stretch before she heads out for a fitness class. ‘I find that regular exercise helps me gain control of my muscles and helps me focus,’ she says.
Then she’s off to meet friends, attend to her online business for women’s accessories, join one of the local group sessions on SMA, or prepare for her next public speaking engagement. ‘It is great to be able to meet different kinds of people, exchange ideas and be inspired,’ she says.
Her family, particularly her mother, still worries for her, but she puts on a brave face. ‘I always say you can’t let fear stop you.’
Javaria says she overcomes hurdles one day at a time. Some may be considered mundane under normal circumstances, but they are milestones for her. She has overcome panic attacks by learning breathing techniques, and coupled with some exercise, she’s learned to slowly but surely cross the road without any incident.
She has definitely learned to defy limits. She has conquered her fear of heights by skydiving in Dubai. ‘I obviously held on to the harness instead of flailing my arms like they do in the pictures, but it was a good freefall,’ she says with a grin.
She has also learned how to swim. ‘I have a swimming instructor. She breaks my fear. Now I can swim,’ she says.
Some days she feels normal, but other days can be hell when muscle atrophy hits, Javaria reveals. Stress makes it worse, too.
‘One time, I fell in the bathtub and couldn’t get up. I nearly panicked, but remembered that I must have presence of mind to get myself out of there. I must have spent about 30 minutes in there before I could muster the energy to crawl out,’ she says.
Even drinking liquids can be challenging at times. ‘One night, about two years ago, I could not swallow water. I took deep breaths and finally, after about 10 minutes, I was able to gulp it down. Imagine how many people just take that for granted, but for people with SMA, something as simple as drinking water can be a big deal,’ she says.
Finding a suitable career was also an issue. She had her heart set on becoming a makeup artist and finished a three-year course before landing a job in a company that ‘rejected me when they found out I had this condition’.
She’s met other rejections, too.
‘Imagine somebody telling you they can’t marry you because you have that condition,’ she says. ‘But it’s their loss,’ she declares. ‘I think God wants me to be happily single. I’ll be my own hero.’
In a way, SMA has helped Javaria find strengths she never thought she had.
‘I’m doing everything on my own and I’m proud of it,’ she says. She is now a certified chef and has learned how to prepare some mouth-watering Italian and Mexican dishes.
She’s also growing the women’s accessories business she set up in 2011, while helping inspire people with SMA through her daily vlogs.
‘People send me messages to ask, “What do we do, how can you help us?” when I post my videos on Instagram and Facebook,’ she says.
‘I know this condition is progressive, but I still try to do things I enjoy.’
Her secret to a positive outlook? ‘I started looking around me to see how lucky I am. There are many things to be grateful for. At least I can afford my treatment,’ she says.
She now wants to meet her target of 6,000 steps per day. It’s literally her way of saying she can take challenges one step at a time.
‘I always say I have two choices. Either sit back and make it worse, or pursue the challenges and live my life,’ she says, not forgetting to smile as she swings one leg up the couch and props up an arm in the backrest so she can get up, ever so carefully. ‘Please don’t get up, I can manage,’ she says as I begin to extend a hand.
She apologises for the rush and tells me she needs to prepare for her next appointment. ‘It’s my second public speaking engagement in Dubai and I’m actually pretty excited. There’s so many people out there who just need to hear a positive story,’ she says, smiling.
What is spinal muscular atrophy?
Spinal muscular atrophy (SMA) is a genetic disease that hits the nerve cells in the spinal cord that control muscle movement. Muscles don’t receive signals from the nerve cells, and therefore atrophy, which means they get smaller as they become inactive.
The disease is degenerative and people with SMA struggle with motor function from childhood to adulthood. SMA symptoms range from mild to severe. The age at which SMA symptoms appear correlates to the degree to which their motor function is affected. The earlier the age of onset, the greater the impact of muscle control loss.
SMA is caused by a deficiency of a motor neuron protein called SMN, which is caused by genetic flaws or mutations. There are no clear-cut predictions about life expectancy or level of muscle degeneration as most doctors now consider it a continuum.