Things that I thought I wouldn’t do anymore…

Seeing myself in this picture about six weeks ago (in the black dress at Birmingham Symphony Hall) after a Bach B Minor Mass is something I thought I wouldn’t be able to do ever again in my life.
The day started with a drive to Birmingham for the rehearsal. When I arrived, I was shown the most amazing dressing room (MY own dressing room with MY name on the door!) I had a piano all to myself, a sofa, dressing table and – a private bathroom with shower and towels! I’ve had several dressing rooms over the years, but none of them ever had a private bathroom…
The performance went well. The sleeves that were sown onto my dress by my friend S. stayed in place (she made almost 10 different sleeves until they fit perfectly) – even when I hugged the concert master in the interval after our Solo in Laudamus Te. The biggest problem proved to be a glass of water under my chair – courtesy of stage management. Every time I sat down I thought I’d knock it over (I’m the kind of person who might just end up with a soaking wet dress on stage….).

So, looking at the picture made me realise that there had been a time when I thought I would never go out and perform again. Not because of a personal choice or ugly voice or lack of discipline or bad teachers – but because of illness.

Two weeks after the performance in Birmingham I celebrated my 12th birthday of my ‘second’ life. Exactly 12 years before to the day I was literally quite ready to leave this world. I had lost everything I thought counted in life: I had lost my health, I was almost unable to leave bed without help, I lived on boiled carrots and apples for months (all other food would lead to massive gastrointestinal problems – therefore I had the amazing weight of 42kg, being 170cm tall), I was in constant pain and could hardly sleep. I couldn’t work, couldn’t go to university, couldn’t do the performances I was booked for. I had lost almost all of my friends and lived with my parents as I needed to be looked after. I had a very hard time not to loose all of my dignity with all the doctors examining me and medical tests I went through. I was 24 and life as such as I imagined it was no more.

That first day of my ‘new life’, despite being my lowest point, was also the day where I got the first medicine that worked (otherwise this day wouldn’t have been worth remembering as ‘second’ birthday). While I’m writing this I remember glaring at the glass bottle with the medicine, trying to figure out whether or not to take it. It sounds pretty strange, but the thing was: I just knew this medicine would work. I had heard other people talk in the waiting room of the specialist. I had heard them talking about symptoms that I had – though less dramatic than mine – and they were starting to get better. There was a real chance. I knew this – what I didn’t know was if I wanted the fight back to life. Would I have enough strength to do it? I have no idea how long I sat there thinking and looking at the flowers that our neighbour had just planted the day before. What made me make my mind up? Actually, those flowers and my family. My parents, who had always given everything we really wanted to me and my sister. Even if this was my last chance to survive, I owed it to them. So I did take the medicine. I come from a stubborn family.

I didn’t talk much about being ill in those years. This is partly because it was a too emotional subject, partly because a singer who is known to have been sick for a long time isn’t very likely to get job (he/she is considered as a hazard), partly because I was sick of people’s reactions when I explained what I had. I have CFS due to a viral infection which was wrongly diagnosed.

When we started the blog I knew all along I wanted to write about illness and survival (and G. always encouraged me to do this), but I didn’t want to admit what I have. People with ‘serious’ illness make it back into life and everyone is amazed about their positive attitude and their success. CFS people don’t get this benefit: there is lots of prejudice that it’s ‘all in your mind’ and worse, ‘you’re probably responsible for your illness, you have no will power, no positive attitude, no drive for life’. You should just rest for a while or have a good night’s sleep and all would be better. Well, not quite.

Why did I change my mind? I watched a US TV spot about CFS this morning and remembered how my life was before getting medication that helped. For months I have been listening to knitting podcasts saying we need to raise our voice if we don’t like some things (like wool with knots, and by the way: I hate that too!) and want to make a difference to the world. So why not make my voice heard about something that has completely changed my life? It might not make much difference, but it might just give one person some hope and then it was worth all the trouble. Besides, I want to see the person with none of the above troubles go out on the platform of a 2500 people auditorium and perform as a soloist….

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2 thoughts on “Things that I thought I wouldn’t do anymore…

  1. mummymakesphotos says:

    Go you! Singing in front of how many people?!!!! My mum has CFS too, I see what it does to her and admire the both of you for not letting it stop you from doing what you do. There are good days and there are bad, but my mum has now realised that on those baddest of bad days she must give in to what her body is telling her and rest. It also means she truly appreciates the days when she feels good. Wishing you lots of good days.

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