Why not me?
Anna Healey with Krista Bell
My journey with MS
"It seems strange that being diagnosed with Multiple Sclerosis could be a good thing, a positive thing, that Multiple Sclerosis could make someone a better person."
Back in 1991 Anna Healey was told that MS was devastating, that it would destroy her body and undermine her self worth. The overwhelming response from people she met back then was negative. She recalls "no-one ever discussed how empowering something like this could be ... my disease has taught me to accept my faults, my strengths, my weaknesses, my talents - my self ... it has also taught me to enjoy life in all its guises, the small pleasures as well as the big ones".
Anna Healey's world was turned upside down, when at 28 years of age she found out she had multiple sclerosis. The reality of her diagnosis initially seemed to be a life sentence, and coming to terms with the effects of MS left her feeling depressed and dependent.
The severity and onset of MS varies from one person to another, but for Anna it meant she lost the effective use of her legs and had difficulty walking and maintaining her balance due to paralysis and spasms. Suddenly the simplest of tasks became near impossible due to the pain and limited mobility, as she tried to care for a small baby, and look after her health. Hiring a wheelchair and finding the courage to use it, was one of many physical and emotional hurdles along the way, a tough decision for such a self-sufficient and fun-loving person.
These days Anna has rediscovered her independence, she drives (a white convertible no less, with modified hand controls), works part-time as a drama teacher and helps run a surf shop. She has a wicked sense of humour, and enjoys zipping into the disabled spot in her convertible and challenging the conventional wisdom and stereotypes of people with disabilities, who apparently should only be seen driving a sensible car!
Not an athletic person in her youth (in fact someone who actively avoided all sport and had an excuse for every occasion) Anna has become an accomplished solo sailor, competing in the national and world championships, as well as being the only women to participate in the 2000 Paralympic trials. She is also an ambassador and role model for people with disabilities, and through her public speaking and media activities raises awareness about MS in schools and amongst the general public. Her successes, enthusiasm, optimism and determination to enjoy life, continue to inspire others to achieve their best.
Anna's book is a very personal and honest account of living with multiple sclerosis. She talks openly about the effect MS has on her life, and that of her family and close friends. The difficulties and despair she felt initially and the incredible new highs she has found. After seeking to find a reason and answer the question "Why me?" she came to the realisation "Why Not Me?" and decided to "live life to the max" from that point on. This change in attitude marked the beginning of many new adventures and was a turning point. That's not to say life suddenly became easy, but she says she has learnt to get on with it, and found there is plenty to enjoy.
Interview with Anna Healey
Question - From your own experience, what words of encouragement would you give to someone who has recently learnt they have MS?
- Don't try and predict the future, your life wasn't as predictable as you thought before the diagnosis, so don't beat yourself up over what could have been. Don't compare yourself to anyone else with MS because no two of us are the same. Always remember, to stop and enjoy the day, because the one good thing that can come out of a bad deal like Multiple Sclerosis is that you can cherish the moment and get away with it - you have a damn good reason to hug your kids, kiss your husband, smell the roses and generally take a moment for yourself. I just wish the rest of the world would take the time out to do the same.
- Never give up, its your body, you have to live in it, so it is your responsibility to do whatever it takes to make things as good as they can be.
Question - What are your thoughts on accessibility? Is this still as big a problem as it was earlier on, when you had difficulty finding a doctor whose rooms were wheelchair accessible?
- I'm afraid this world we live in is basically a pretty un-wheelchair friendly place. I often voice my opinion over the lack of access because I feel that it is my responsibility as a disabled person to make the venue I am visiting aware of its short comings. However, I try not to get angry, it only puts people on the defensive and ruins what I am trying to achieve. Anger is a wasted emotion, plus the fact I don't want to be angry all the time. Which I would be, if I let access be such a big focus of my life.
Question - It must have been a buzz to compete with such success at top levels of Australian sailing, and to be the only woman amongst 20 men competing at the Paralympic Trails. How did you get started in sailing and are you still aiming for the 2004 Paralympic Games in Athens?
- Sport is a buzz, it is just a regret that it took till now, to know that. Sailing was something that I always thought about and never followed through. When I got sick, it became time to do all the things that were on the list. I went to a "come and try" day and have been hooked ever since. How I sailed in the trials for Sydney 2000 was having lots of guts and not too much sense. It was thrilling and frightening and challenging and the opportunity of a lifetime, no regrets. I didn't want to be lying on my deathbed saying "I wish". I will never let an opportunity to experience something new pass me by. Whether I will attempt a place in the Athens team is still in the pipeline, don't tell me what I can't do, I'll let you know what I can.
Question - Your work as an MS Ambassador and now author has done much to raise awareness about Multiple Sclerosis and change people's attitudes towards people with disabilities. Is your passion for "breaking rules and doing the unexpected" part of this message?
- I wrote the book "Why not me?" in the hope that it would open some eyes and maybe open some hearts to the world of disability. But being me despite the disease, is what its all about. Every moment that I do my day to day activities, I teach the world that I am Anna Healey first, MS sufferer second, and hopefully I will chip away at peoples misconceptions in the process. I also smile a lot, because I smile in many languages, and my smile is not discriminating nor is it judgmental, simple but effective.
Question - There have been many advances over the last decade that have enhanced the quality of life for people with a range of medical conditions. What are some of the positive developments and research initiatives you are aware of concerning multiple sclerosis?
- Things are in the media all the time about MS research and it is difficult to sift through what is good and what is garbage. I tend to use the MS society web to work out what I need to know, and I like to check with my doctor if I want solid answers. However he tends to always be guarded over breakthroughs. I do believe that all research is a positive step towards chipping away at the mystery known as MS. And every piece that is broken away is getting closer to, if not a cure, a way of curbing the onset of this disease.
- I do believe, as do many research scientists, that being as healthy and as positive mentally as possible will keep an MS sufferer feeling better and more able to deal with the disease.
Nerve Centre news
In April this year the Victorian Government provided a funding grant for the development of the Multiple Sclerosis Society's $7.5 million National Neurological Centre research and service facility. The "Nerve Centre" has shifted the focus from disease and disability to health, wellness, empowerment, confidence and hope. It is designed to offer individuals, carers and families from across Victoria assistance, assessment and advice. In addition it will provide leading edge physical and emotional support which focuses on enhancing overall wellness rather than relying on high cost medical treatment. These services have already enabled many people with MS to lead better and more fulfilling lives.
Spokesperson for people with MS, Ms Anna Healey said "the support by the government and the community dramatically reduces the impact of isolation so often experienced by people with MS and other neurological conditions. It's good to know that the Government embraces this vital project. It impresses me enormously that so many people care."
Footnote
Anna Healey lives in Melbourne with her husband and daughter. Her busy life includes being a mother and wife, working part time as a drama teacher, helping run the family business, competitive sailing and public speaking. The opportunity to publish her story presented itself unexpectedly at a fundraising luncheon, her first response being "It's not over yet and whose got the time?". Then quietly, the lady on her left, Krista Bell, leaned forward and said "You may not have the time, but I may". This partnership resulted in the recently published book "Why Not Me?". Although hesitant at first, Anna hopes that her story will make others believe that the impossible is possible. Also, that it will give people a positive story to read about MS that may help make that initial struggle not so lonely.
Why Not Me?, My Journey with MS by Anna Healey is published as a paperback edition by Macmillan Australia and is available in bookshops. A percentage of the proceeds from the sale of this book will go to the MS Society. Anna is also an MS Ambassador and a motivational speaker, for those who need that extra "push" in life. If you would like Anna to speak at your club, organisation, business or group she can be contacted via the MS Society of Victoria.
July 2002
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