By JANE QUICK
My mum did not help me buy my wedding dress.
When my daughter was born she couldn’t offer hands-on support. On a bad day I can’t ask her to make me a cup of tea and talk through my problems. As my mum has multiple sclerosis (MS) she has more bad days than I do. People who have healthy, living parents don’t know lucky they are.
She was diagnosed 30 years ago just after I was born. As a kid I knew my mum had MS but was unaware how it affected her. She seemed fine, just like all the other mums, except that she occasionally walked with a cane or got tired and spent a few days in bed. It wasn’t until I was in my last year of high school that her MS started to get worse and I really understood how the disease works and what that meant for my mum’s future.
I will never forget the day I came home and found her on the lounge room floor. She’d been there all day because her legs had stopped working and she couldn’t reach the phone. I called my dad and then I went next door and got help from the neighbours. An ambulance came and my mum went and stayed in hospital for a few weeks. I told my dad that I wouldn’t go back to school ever again unless he promised to make our house safe for my mum. He arranged for a Red Cross panic button to be installed so that if my mum fell again or got stuck she could press it and someone would come and help her. Support services for people with disabilities are limited and it was face of an uncertain future it was the best he could do at the time.
That day was a turning point in my family’s history. Prior to this my mum had had bad episodes and recovered back to full health, but from this point on the changes in her body would become permanent. Within a few short years my mother would require the use of a wheelchair full-time. She was legally blind and needed daily visits from a community nurse to help her shower and make sure she ate lunch. Eventually my parents would sell our family home and move into a house specifically designed and built to accommodate someone in a wheelchair. My mum’s eye sight lasted long enough for her a lifetime trip to the UK, to see where her ancestors had come from, and to see the birth of her first grandchild.
Her MS is now quite advanced and she is totally dependent on other people for her care. Something I’m sure it must have been hard for such a proud lady to come to terms with. My dad is her primary carer. My older sister and I have talked to him about the possibility of mum needing to go into a nursing home at some stage but he says he’s still coping and wants them to stay together in their home as long as possible. Every time my phone rings late at night I think the worst. I used to pray for my mum to get better, now I pray that she doesn’t suffer.
My dad was a giant and now he’s frail and old with a bad ticker. My mum was my hero, my biggest fan, the one person who I knew would back me no matter what. But that person is gone now. It’s hard facing the reality your parents will not live forever. It’s even harder watching someone you love slowly waste away.
My mum’s illness is not something that’s easy for me to talk about. I’m fiercely protective of my mother. My grieving is mostly done in private. My job as a daughter and a mother is to stay strong for other people. There’s no time in my day to fall apart or to fail because there are too many other people counting on me. I cope by focusing on the good in my life and by pretending that your family is just like everyone else’s.
MS is not something you talk about over dinner with your friends. When you tell someone that you have a relative with cancer people get it, they understand straight away what this means and what a terrible tragedy it is. Unless they’ve seen it first hand, people do not understand MS.
When I started organising the Kiss Goodbye to MS charity dinner it was a humble university project; a way to quietly do something nice to honour mum while she’s still around to share in it.
It was also meet the course requirements to obtain a Diploma in Events Management. I did not expect it to attract the attention of important people, or anyone beyond my immediate circle of friends and colleagues. But as I went searching for people who were willing to help by donating their time or resources to make the dinner a success I found other people like me. People who do understand; who have a friend or a relative with MS and want to do something to make sure that others don’t have to suffer, that the research into finding better drugs to treat MS and maybe even finding a cure continues.
This speech was given by Jane at a Kiss Goodbye to MS charity dinner.
Over 23,000 Australians have MS, including Jane Quick’s mother. Most people are diagnosed between the ages of 20 to 40 and 3 out of 4 are women. The Kiss Goodbye to MS campaign runs throughout May each year to raise funds to go towards preventing and treating the symptoms of MS, as well as providing support and services for people with MS. Australian scientists are optimistic that with enough time and resources, a cure will be found.
What – How can you help? Buy a ticket to Jane’s Kiss Goodbye to MS Charity Dinner
When – Saturday 25 May 2013
Where – Novotel Hotel
Who – Jane will be joined by Senator Kate Lundy and some remarkable MS ambassadors
Why – Help support this worthy cause.
Cost – $80 per person for a fantastic night with your friends.
A silent auction will also take place on the night with some great prizes up for grabs including a VIP Brumbies experience. Tickets can be purchased at http://www.eventbrite.com.au/event/6133432261 or you can email [email protected] for further details.
If you can’t make the dinner you can still help by going to www.kissgoodbyetoms.org and making a donation.