Busking in the face of multiple sclerosis
‘‘I’ll stop when I get lousy,’’ says busker Marion Hounsome, who has multiple sclerosis.
She’s talking about singing. Today she’s performing outside the Bishopdale New World supermarket in Christchurch in her 1pm to 3pm busking slot.
She’s come ready to deliver a concert of 30 songs over two hours – an effort that would shame many stadium bands for value. But there’s a technical glitch. It turns out it is the amp that is lousy. It dies after a couple of songs, leaving her with no backing tracks and bravely facing an a capella performance.
She’s game, but suspects listeners like the backing tracks. ‘‘I’ll do a couple more songs and then maybe go,’’ she says resignedly.
It took 20 minutes for Hounsome, 51, to steer her electric wheelchair along the footpaths from home to the small suburban mall while towing that amp on its own little wheels with one arm.
But overall it’s worth it. Music had been a big part of Hounsome’s life and now with MS it gives her an important boost. Singing and performing in her wheelchair makes her happy and meeting people makes her happy. The few dollars she earns from busking is a welcome extra to her disability allowance.
Hounsome discovered she had MS in 2000, during one of the most stressful times in her life.
Her marriage had ended six weeks before the birth of her youngest daughter.
A while later while on a singing workshop in Hanmer Springs she went to shake her baby’s bottle and ... nothing. She stared at the hand and it sat there unmoving. That’s odd, she thought. It was checked out and scans revealed the bad news. To her horror she had MS.
‘‘I played in my dad’s brass band in England and every Christmas we used to do a concert for the MS Society. My only memory is all these people sitting in wheelchairs and they looked really bad, so it didn’t exactly fill me with joy to find out that’s what I had. I was upset, yes. It was just me, a new baby, a separation and a diagnosis of MS.’’
MS is a disease that damages nerves in the brain, spinal cord and eyes. Sclerosis means scarring and MS patients have lots of scarring because of the nerve damage. It affects different people in different ways, but symptoms can include muscle control problems, poor balance, damaged eyesight and speech problems.
Hounsome says her disease seems to mostly affect her legs, though there are also problems with her memory and movements.
She stopped driving in 2006 after an accident that became news around the world.
Hounsome’s mother was visiting from England and she decided to drive her over to the West Coast to show her New Zealand. On the second day the car went over a steep bank when it didn’t take a corner. It rolled down and out of sight.
Hounsome’s mother broke a knee and Hounsome was using a wheelchair a lot by then, so neither could scramble back up the bank. They were stranded for two days until Australian tourists who stopped to take photos heard their cries.
‘‘I knew I had this stupid MS thing and I thought if it was something to do with that which made me drive off the road, I didn’t want to do it again and I didn’t want to hurt anyone else.’’
So no more driving. Nowadays she can no longer walk.
With her MS, she has no guarantee that muscles will do what she wants them to do. It’s like a switch turning on and off.
There are four types of MS – primary progressive, relapsing and remitting, progressive relapsing, and secondary progressive – which Hounsome has. In this type, the symptoms worsen steadily over time.
Late last year MS sufferers had a glimpse of hope when exciting new drug Ocrelizumab was approved for use in New Zealand. It’s awaiting Pharmac’s decision to go on the drug schedule for reimbursement.
But Hounsome says it only appears to help primary progressive and relapsingremitting MS. Not her type, which is deeply disappointing.
She went busking for the first time in August last year and scoots the wheelchair over to her computer to read out from a spreadsheet she’s created.
‘‘Twenty-fourth of August, I did two hours at Bishopdale and I got $24.’’
She’s tried other parts of the city, trekking there by bus, and did quite well in the inner city leading up to Christmas.
Hounsome sings songs she loves. But they only make the performance list if she can find a backing track.
She sings for hours at home, practising to keep her voice in good shape.
‘‘If I am starting a song I don’t know well, I have to work at it really hard to make sure it is cemented in my stupid head. I don’t trust myself not to have lyrics in front of me now. I have this horror of suddenly drying up and sitting there thinking, ‘What comes next?’’’
The MS does get her down at times. ‘‘My children are normally the ones who get the brunt of it and I feel bad about that.’’
She hopes to busk for as long as she can.
‘‘Obviously I don’t know what the future holds, but fingers crossed. I just have to keep going. As soon as it gets really bad, I wouldn’t want to be doing it then. But while it is good, I’ll keep going.’’