Advocacy

Turning Point

by Jessica Miller

Reprinted from Emerge, quarterly journal of CFS/ME Victoria

We all know of the effect that CFS/ME can have upon families. In this Year 11 speech 16 year old Jessica tells us about her brother's illness and the devastating effect it has had upon her and her family.

Any of you who know me will be aware that I have an older brother.  Some of you know that he is sick. Very few of you know how seriously and no-one, not even I, could possibly understand the tragedy of his illness.

My brother is eleven years older than I, the eldest of four, and for the past five years he has been cut off from the world and society living with an illness that some doctors don't even believe exists.

Before he became sick he was a complete over-achiever and to me a genius and role model who always set out to do his absolute best. Ultimately this was his downfall.

He lived happily with his girlfriend. They were studying, socialising and partying like all uni students do when they both began to feel that they were getting sick.  But, instead of stopping their hectic lives to rest, both continued on - too immersed in a love of life to slow down. Neither of them knew that they had contracted glandular fever and unfortunately did not stop to rest.

My brother even took up kickboxing because he thought he was unfit and he studied harder than ever, pushing himself to achieve and ignoring the signs of illness. By now both he and his girlfriend were very unwell; none of us knew that their glandular fever had led to CFS/ME.

In 1997 they moved back home - my brother with us, and his girlfriend to her parents. That was five years ago and since then they have seen each other only twice.

On my thirteenth birthday the whole family went out for the usual family dinner and my brother presented me with a book which he had spent hours carefully choosing. This was the last time our family was all together.

Since then my brother's condition has gradually declined. Throughout the years it has seemed that every time he hit a low our family would say that there is no possible way that this can get any worse. Every single time, so far, it has.

My turning point comes, not when my brother became sick, not when he moved back home, not when he became bedridden but when I realise how unwell he truly is.

At first he spent his time trying to sleep, reading and watching television, but mainly trying to find new methods to help him get better. He was able to walk around the house but about two years into his illness he began to spend his days in bed until, finally, he became fully bedridden, only rising to go to the bathroom.

And as his condition deteriorated he became unable to watch television or use the computer and then, one day, he found that he could no longer cope with reading. Books had always been his passion, he has thousands, but not even when he stopped reading did I begin to understand.

I knew he was sick, he didn't look well, it was obvious enough and, as the years went on, our family had to cut out scented shampoos, soaps and deodorants because he was too sensitive to the smells. Mum even had to stop brewing her coffee because the smells of these every-day items would give him blinding headaches and, in extreme cases, cause his nose to bleed. Then one day I noticed he had stopped his long conversations to his girlfriend on the phone and even the short ones were infrequent. By now he had stopped eating anything but pure organic foods and bottled water.

But through all of this, he continued to search for something to make him even a little bit better. No-one knows exactly what chronic fatigue syndrome (CFS/ME) is. In the past it has been named the "yuppies' disease" because it struck people who were highly successful and worked hard - high achievers like my brother. Some doctors believe that it's a mental disease, but anyone who has seen what it can do to a healthy human would argue that there is no possible way anyone can call it "mental". It attacks the immune system and also seems to deteriorate the mind, leaving the victim frail, fragile, a fraction of their former self living in a fog of existence.

One Sunday of this year no different to any other day all of this suddenly made sense. I was helping out Mum by making one of my brother's herbal teas, reminding myself not to speak too loudly in case I gave him a headache, but slowly and clearly, and to quietly walk up the hallway.

I opened his door and walked in. He was lying in his bed facing his sliding door which was open to let in the fresh air.  Hearing me come in he slowly turned to look at me and I noticed how small he looked and how frail.  It hit me that he had always been huge to me but, right then, he looked so small and it wasn't right because he was my strong older brother who had been fighting this illness for so incredibly long.

This is my turning point. At this exact point in time I realised that for five years he had been fighting his CFS/ME but he was totally alone. Not even his girlfriend who was also ill could understand because she was never as sick as he.

I realised my brother's huge strength, battling every single day with the unknown, living in a darkness that he himself cannot even understand.

I hated myself for every time I had put on perfume thinking he could never notice; every time I slammed a door, because I was angry about something insignificant, waking him from sleep, when sleep to him is so precious; every time I forgot that he had asked for something because I was arranging my weekend and he had to wait, unable to walk down to ask me for it again. It struck me that, in three years, he hadn't seen our kitchen, in four years he hadn't seen our dog and in over five he hadn't seen his friends.

My brother is the strongest person I know. Every living day is a fight and where I would have given up he has used every ounce of his strength to continue on and help himself get well.

Since that Sunday every problem which I would have called huge has seemed trivial. I treasure my true friends and my family more than anything and I can't waste my time on petty squabbles because, through my brother, I have seen that life is far too short.

I have learnt the power that a close family can have and I am constantly amazed by the strength and dedication of my wonderful parents who have spent countless months suffering from broken sleep because they are rising in the early hours of the morning to take care of my brother because of his erratic sleeping hours.

If I ever have a spare moment during the day, I'll take out the book he gave me on my thirteenth birthday, or I'll go into his study and look at his book collection because one day I know that he will be reading them again, because he'll never stop fighting and one day he will be better again.

Editor's note: Some four years later Jessica has just begun her third year of university studies. Her brother is still seriously ill.

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