Photo: James Brickwood
Article by Keeli Cambourne
Jen Li has learned that riding a bike is something you can forget.
At 23, the Sydney woman is spending her spare time pushing the pedals in deserted car parks just like she did as a little girl, getting back her balance on two wheels and building her confidence to take on a challenge she never thought she would have to face.
In June 2008 , Li was setting herself a goal for 2009 to be able to run 5km without stopping. By the end of that month her goal was just to sit up for five minutes unaided after suffering a stroke and finding herself unable to move her left side – or even remember about two weeks of her life.
Now Li is planning on cycling through Vietnam to raise awareness of stroke and to prove to herself that she is well on the way to “getting her life back”.
In November last year Li’s life was exactly what she wanted it to be. She had just started a new job as a researcher at the Urban Research Centre, University of Western Sydney was planning on moving in with her then boyfriend and was feeling invincible.
But after noticing a rash on her arms, and a few extra pounds she couldn’t seem to move, she was finally diagnosed with Cushings Disease caused by excessive cortisol in the body – a hormone usually released from stress. In Li’s case the disease was caused by a tumour on her pituitary gland which measured 8mmX6mm.
“I had pretty much every symptom of Cushing’s you can get,” Li says.
“My skin became weak and fragile, and I bruised very easily. Bright pink stretch marks appeared on my legs and across my tummy, my arms and legs lost a lot of muscle. I developed a very round, red face. I gained a lot of weight around my belly. I had a slight buffalo hump. My potassium levels were low. I would wake up with a sore back every morning, and I would get up in the middle of the night every night to pee.”
In November, 10 days after she had started her new job at UWSthe Urban Research Centre, Li took five days medical leave – enough she figured to have the simple surgery to remove the tumour and recover.
But that 10 days turned into more than three monthsone and a half months when days after the surgery she suffered a stroke.
“I had the surgery on Thursday, November 27 and on the Saturday the neurosurgeon came to check on me. I remember we talked about cricket and I happened to mention that I had water coming out of my nose. I didn’t know it then, but it was cerebrospinal fluid (the fluid surrounding the brain).
“My friends were planning on visiting me that day, and when the surgeon said I had to get a drain inserted at a different hospital I remember thinking ‘Now I have to text everyone and tell them not come’.”
Li was taken from Westmead Private Hospital to Westmead Public Hospital for a drain to be placed in her skull but says she only remembers having a bad headache – not any of the other classic symptoms of stroke.
“My boyfriend’s mother came to visit me and I felt really sick. I remember telling her that she had a new jacket on, because I thought I had to try and make everything seem as normal as possible.”
Later that afternoon her boyfriend came to see her and Li says it was him who realised something was seriously wrong.
“I apparently turned to him and asked where he was because I couldn’t see him,” she says. “The nurses took me down for a scan at around 6pm and then I woke up in the Intensive Care Unit of Westmead Public a couple of days later.”
Li couldn’t move the left side of her body for about 10 days and says she didn’t know she had actually had a stroke for two weeks after.
“I knew I had had a bleed but no-one used the word stroke. Before then the only thing I knew about stroke was that the grandmother of a character in one of the Babysitter Club books I used to read had one.
“When I was in ICU I remember looking at the date above the door and seeing December 12. It was the day I managed top sit up for about four minutes by myself, and I remember thinking that I had planned on being able to run 5km this year. I had to reset that goal. It was one of the days I did break down and cry and thought ‘this sucks’.
“I thought there is so much work to do to get my life back and I was wondering how I was ever going to be able to do it.”
Li says she suffered the ‘best kind of stroke’ you can have – a venous stroke, and combined with her young age, she says it helped her brain reestablish the majority of the networks it had lost.
But still, her recovery was not without its ups and downs, and it took one and a half months before Li was well enough to leave hospital and then return to work.
It was while she was recovering that she looked on the website for the National Stroke Foundation and saw a link to its Memorable Challenges that stroke survivors could do to help raise the public consciousness of the illness.
“I wasn’t looking to do something big, but I found the Vietnam cycle challenge,” she says.
The challenge is a 13-day trip from one end of Vietnam to the other, cycling through the heat and humidity of the Asian tropics, on roads that are often little more than pitted dirt tracks.
In June this year Li took a couple of friends to help her pick out a bike.
“They also went with me to see how easily I could pick it up again, and we spent two hours riding around the netball courts and car park at the end of my street,” she says.
“I learnt to turn, stop, follow a line, change gears, and I didn’t fall over. There is still a long way to go before Vietnam.”
Before she leaves Li has to raise $6500 to cover all her expenses and is busy organising a concert in October, a Stroke Awareness morning tea and a trivia night.
“I used to think I was shy but after more than six weeks in hospital, and having strangers see me naked every day, as well as have to wash me, feed me, and know every detail about my medical history, I’ve realised the worst thing people can say when I ask them to help is ‘no’,” she says.
“I’m not going to die by approaching strangers and asking them for donations or for help in organising these events. Some people say I’ve made a pretty amazing recovery but I say I really didn’t have much of a choice. I wanted to get my old life back, and I didn’t want to be a victim.
“Life is much bigger than that and before this I realised I had never really been tested before. Now I have.”
Li has set up a blog of her preparation for the Vietnam challenge at www.slight-hiccup.com.
