Ms H has multiple sclerosis. Tiny and I went to visit her today, and as always, I came away feeling inspired and in awe of how determined and pragmatic she is about her condition.
Until a few years ago, no one would have known she had MS. She had a slight – very slight – limp and started to wear her glasses more and more, but that was all. When I first saw her when we got back from England, I was saddened to see how much my vibrant, up-and-at-’em friend had changed. It became apparent that things were happening with her MS when I watched her pour water for a cup of tea, and she over-filled the cup without realising.
A month before last Christmas, she was admitted to a specialist clinic here in Dunedin. She’d been feeling very fatigued, and walking had become – quite literally – a drag. When a colleague commented to her that he’d been concerned as he watched her walking home from work (not in the creepy way that sounds!), she realised things were happening again. The killer blow was dealt one day when she asked her partner to make her a cup of tea; she describes feeling a “tickling” in her body, and the sounds that came out of her mouth were incomprehensible. Rather calmly, she waited for the tickling to stop, then opened her mouth again, and asked for her cup of tea. She was admitted to The Isis Clinic that day.
She’s showed me the scans of her brain, and has pointed out the new scarring; she had the specialists write her little notes so she could adequately answer the questions of her family and friends, because we all want to understand her condition better. She’s open and honest about her abilities and shortcomings, and this has made me want to better comprehend what is happening for her, and what may happen in the future.
Ms H has lost much of the independence most 30-somethings (myself included) take for granted. She sold her car almost a year ago, because she no longer felt confident or safe behind the wheel. She had to resign from her job, because she couldn’t stand on her feet for the whole day. She’s been living off her savings, initially destined for a house deposit, because her partner earns too much for her to be entitled to a benefit.
But she’s made a conscious decision not to be defined by her MS. Sure, she has some physical limitations, but takes each day as it comes and makes the most of what she can do – the unpredictability of MS means she could wake up one morning and no longer have the use of her legs, so she’s making the most of them while she does.
Next month, she’s off to Outward Bound with a group of other young MS and arthritis sufferers. She’s excited about meeting the others, and the opportunity to try some crazy-cool things. She’s also really nervous, because she’s hoping her body won’t fail her, but she’s spurred on by a desire to come back and share her experiences with other people with MS (and other disabilities). She wants to prove that lack of physical strength doesn’t have to hold people back. She hopes that her experiences at Outward Bound will encourage others to challenge themselves and their conditions. I have to keep reminding her that she jumped out of a plane last year, so “limitation” is obviously not a word she knows!
Ms H is one of the most optimistic and determined people I have the privilege of knowing, and every time I see her, I feel a renewed sense of appreciation for being well. I’ve been plotting and planning ways to take better care of myself recently, and seeing Ms H today has only strengthened my resolve to do this. Next month I’ll be starting my Journey to 35, starting with a relaxing, rejuvenating holiday in Rarotonga…