Thoughts on Disease and Disability

April 5, 2010 at 8:42 am | Posted in Philosophy | 3 Comments
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I am learning about spina bifida. A few weeks ago, someone close to me told me that their child, due in two months, has been diagnosed, in utero, with spina bifida. I knew in general what the condition is. I have known that for a long time; one of my students had it when I lived in a remote community of the Northern Territory in the 1990s. However, I hadn’t studied the condition in any depth – until now.

It is amazing what a difference it makes when one you care about is affected. Now, I want to know all about it. I want to know what it is (the vertebrae that normally cover and protect the spinal cord do not develop properly; the spinal cord and its covering may protrude through the opening and be damaged). I want to know why it occurs (70% of cases are caused by a lack of folate; 30% by a mix of causes, many unknown). I want to know what the possible effects are (they vary widely, from very little effect to severe disability, depending upon the level of nerve damage and cerebral fluid). And I want to know how I can help and support this young couple when their baby arrives.

Most, if not all families will become familiar with some form of chronic disease or disability at some point. After all, most people don’t have completely healthy lives – and nobody lives forever. My immediate family (parents, self, siblings, children) had, and has its own generous share of afflictions – polio, back problems, aortic aneurysm, Type 1 diabetes, Malabsorption Syndrome, both osteo and rheumatoid arthritis, heart disease, liver disease, macular degeneration, breast cancer, coeliac disease, lymphoma – these are a just a quick sample.

How we face and manage our health problems tells a lot about us as individuals and as families. We may be alone, or we may have a family and friends around us. Some do the ‘poor me’ act and wallow in self-pity; others say, “How do I fight this, and what weapons and support do I need?” Those with a positive, can-do attitude will most likely do better in their battle than those who dwell on the negative side of their illness. I have seen many examples of both attitudes, both within and outside of the family circle 

What we must beware of is the temptation to define ourselves by our afflictions, as if they are what make us. I know some people who do this and they are boring as hell! Ask them, “How are you today?”, and you get a run-down of every symptom they’ve suffered in the last ten years. Ask the positive ones and it’s “Great, thanks” or “I’m doing fine”. They focus on the good things they have; they are not their affliction.

Of course, in some cases, it is not the one with the problem who defines them, but those around them, those they meet, society in general. This is so when there are obvious signs of a disability – a wheelchair or a walker, a guide dog or a cane, perhaps a bodily indication, as in Downs syndrome, a stroke or some visible disfigurement. In those cases, the person must deal with other people’s attitudes as well as living with his/her own challenges.

And that brings me back to this unborn child. I wonder how much he will be affected, and what other people’s attitudes will be towards him. I am proud of the soon-to-be parents for taking on what may prove to be a major challenge – they didn’t take the easy out. I know that they have the required strength, and I believe that family and friends will provide the love, help and support they will need to raise a child that knows it is loved, and has a positive attitude towards life.

© Linda Visman 5th April, 2010

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  1. We have friends in the UK whose youngest son was born with spina bifada… his lower spine is affected, and he walks with calipers. He finished school, passed all his exams and has even held down a couple of jobs. He’s now 41 years old, and is a bright, confident man. He visits Australia every year with his parents to see his older brother, who lives near Perth with his young family. He’s also visited Africa with his family – two or three times if my memory serves me correctly. If you like I’ll let you have their email – his father was my father in law’s closest friend.

  2. I’ve known two beautiful young women who are affected by spina bifida: one—a spunky teenager who visited on the occasional weekend when I was providing respite care and a young lady that my son dated for over three years.

    Becky depended on a wheelchair for mobility, but that never stopped her from pulling pranks on others and participating in harmless mischief. Cassie had a titanium rod in place to support her spine and walked with a sway, but was otherwise every bit the normal teenager.

    I haven’t seen either for over a year now, but I have fond memories of both girls and their ability to overcome their disabilities.

    This child and this couple will face challenges, but with the love and support of family and friends like you, I’m certain that this child will be blessed, as will those who are fortunate to know him. ♥

  3. Hi Mum,

    It has been a long time since you wrote this post. At the time we really wanted some privacy about us and our daughter. Feel free to change the reference to friend back to family if you wish. I’m glad you were able to visit on the weekend and I’m sorry that Eleanor was not of the best health then to be able to get to know you better. But I guess that is the subject of another blog post if you feel like it.

    Lots of love.

    PS. We slept very well that night
    PPS. Eleanor loves the book you got her
    PPPS. Hope the rest of your trip was enjoyable and you found Tuckurimba easily!


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