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MS Awareness – It’s Okay to Ask About Disability

by Joseph O’Sullivan(more info)

listed in medical conditions, originally published in issue 266 - November 2020

 

30th May: Multiple Sclerosis Awareness Day

Liam stumbled into the toilets of a Richmond pub, using the walls, bannisters and every other protruding object along the way to support himself on the short journey. Once inside the lavatory he stood at the urinal using his head pressed uncomfortably against the wall to hold himself steady while he did his business. Upon seeing this, another patron, clearly the worse for wear, asked him if he too had had one too many beers to which he replied “no mate, I’ve got MS.”

Obviously feeling slightly embarrassed, his fellow toilet attendee ceased to ask any more questions.

Growing up two years his senior I’ve often found myself in the position of explaining his condition to people who have been astounded at seeing a supposedly wheelchair-bound man get up out of his seat at a bar (it is surprising the number of people who assume anyone in a wheelchair is paralysed from the neck down). Educating friends, colleagues and teachers was something he had to do in the early years when even he himself had little idea of what it was that he had. Coping with disability can put a massive strain on the family unit (if the person suffering is fortunate enough to have one that is), and it would be a lie to say it had not had an effect on ours; this too was due to a lack of understanding, and it is precisely this lack of knowledge and naivety for which I cannot blame people for staring or whispering.

Multiple sclerosis is an auto-immune disease of the brain and spinal cord; the degrees of severity of those that suffer it are varying. In MS the immune system starts to attack the protective cover of nerve fibres, causing communication problems between the brain and the rest of the body. I always remember having it described to me by one of my brother’s doctors as the plastic sheath of an electrical cable wearing away. It is common in patients between the ages of 20 and 40 but Liam was diagnosed with it at the age of 14, despite suffering symptoms from the age of 11. It is twice as likely to occur among women than men and there are approximately 2.5 million cases worldwide. No two cases are the same; some patients will experience a relapsing-remitting form of the disease, in which they will suffer some symptoms but then have a complete or partial recovery, other patients will encounter more aggressive and debilitating attacks. Common early signs of Multiple Sclerosis can range from vision problems and numbness to balance issues and fatigue. 

 

O Sullivan 266 MS

 

I asked my brother if he thought it was okay for people to question him about his disability; obviously not everyone who suffers from a condition finds it appropriate and may consider it an invasion of privacy; he said it was absolutely fine, in fact he relishes the opportunity to speak to a new face. Multiple Sclerosis has had an enormous effect on Liam’s social life and his ability to make friends. He was bullied at school because of his condition and after being bound to a wheelchair at the age of 17 it made it a lot more difficult to go out and socialize. Maybe if those kids at school who were incapable of understanding why his foot dragged when he walked, or that he was fat for a while due to an anti-inflammatory steroid had taken the time to ask what was wrong with him, they would have been treated to a thorough explanation from a sharp, witty individual who is more than capable of laughing at his own disease and misfortune. Liam’s MS affects his brain and his speed to react, however it does not affect his ability to crack jokes or make sarcastic comments. He obtained a 2:1 in Business Law from the University of St. Mary and it was an honour to see him stand up out of his chair at his graduation ceremony and receive his title. Despite having a fairly aggressive form of MS there are a host of other problems that affect him worse and are not visible to outsiders such as depression, tremors and cognitive malfunctions. It can be these secondary effects that cause greater problems, especially for adults in the workplace, who feel a sense of incompetence whether it be because their condition makes them work slower than their peers or it takes them longer to understand new concepts.

 The truth is that MS has always has always shown a trend for worsening and becoming more severe over time, but the future for people living with it is looking brighter as research into stem cell therapy continues and the prospect of remyelination looks to reverse existing disabilities. Multiple Sclerosis is not a death sentence but is indeed a punishing condition both for those that suffer the disease itself and those around that person. The most important thing we would all do well to remember is that not all disabilities are visible and that sometimes our lack of understanding is due to fear of questioning, we are children in the world’s classroom afraid to raise our hands.

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About Joseph O’Sullivan

Joseph O’Sullivan is a freelance journalist and writer. He wrote a 1000-word essay piece for 'Multiple Sclerosis Awareness Day which is was on 30th May this year. The article is to raise awareness about Multiple Sclerosis, a condition which his younger brother suffers from. It also questions whether or not it is okay to ask about disability. He has made the article slightly biographical using his brother as the subject of the piece. It is a particular story which Joe feel really engages the human element and educates about the condition. He has made it light and funny to reiterate the point that it is okay to asks questions, but most importantly it is a piece to raise awareness of the disease. Joseph may be contacted via joe.os.jos@gmail.com

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