The Road Not Taken – what would my life have been like without MS?

Well, I’d be playing the recorder for pleasure, that’s for sure. I may have returned from a great career in Asia and be performing as a vocal soloist or as an alto in a high-level choir.
I’d have music as part of my life. I wouldn’t be wondering if I could spend fifteen minutes or so, listening to Piers Adams making the sort of sound that I know is in me.
I wouldn’t be wondering what to do with the three shelves of vocal scores. Should I sell my library? Should I keep it in the hope that there’s a cure just around the corner?
I’d be wondering if a super-strong diaphragm muscle could do with thirty more minutes of intensive Marchesi exercises and quite possibly obsessively recording myself doing arias, to see if more vibrato or less sounds better.
Would I be auditioning? Would I be coming down from an oratorio concert somewhere and perhaps, just maybe giving myself five minutes self-indulgence of ‘damn that was good!’

All of this is just ‘what if’. MS has robbed me of music and that is a tragedy for me. It’s unlikely that anyone would regard it as a tragedy, as I certainly wasn’t a world-renowned musician.
It was who I was though. It formed my thoughts and gave me something to pursue. I liked the chase, the hours getting to know a song or an opera or an oratorio.

So yes, for me, losing the opportunity to make music has been a tragedy. Have I mourned? Well, to be honest, I haven’t had the luxury of getting down and miserable.
Was this a good thing, or will it bite me somewhere painful, when I’m least expecting it?

Someone, who perhaps doesn’t know me well, who may encounter this blog, will be wondering why on earth this daft woman isn’t getting on and going out and seizing the chance to sing.
Well, MS does odd things to the brain. One of its cruelties is cognitive fatigue. You think you are on top of things, that you have a situation in hand, but you don’t.
Forty minutes of rehearsal is tiring. For me, it’s like being whacked from behind with a sandbag and then it falling on top of my head. The shock of not being able to move or think is sudden and overwhelming.

Does it hurt? Yes, but the pain is only in the centre of my being, the little spark of self-worth, of get up and go, the energy to move on. It’s not physical pain, (well not immediately) I wouldn’t have enough energy. Yes, it’s that debilitating.
Someone wrote a blog called ‘MS Sucks’. Yes it does. It’s worse when you are a middle-aged woman, that great invisible being, or not-so-great invisible being.
I’m here. No one will see me sing again and this is what hurts most, I won’t get to play with a group ever again and no one will know or care. I won’t be able to interact with another voice, mingling with someone else’s harmonics, getting that buzz from the perfect harmony. The inner clench of the resolution of a harmonic suspension.

I’m not the tragic figure in the wheelchair. I’m the person who has to live around my limitations. I can walk, I can talk and I can be seen in shops, but just fleetingly. No long shopping trips, or days out as a rule.
Yes, this is a whinge. I don’t know how to express what life is like when you can’t do things for very long without exhaustion.
It’s very, very difficult. One day, I’ll be able to express emotional pain of losing something as dear to me as one of my children, but I don’t have the words to convey the sense of loss of something that is invisible and that only exists in a fleeting moment.
Perhaps an allegory would work?
I suppose what I’d really like, is for someone to understand.
Actually, what I’d like is to be able to sing with someone else. To live in that moment of harmonic ecstasy. I had a very, very good musical ear. My pitching was excellent, but what I was very good at, was mingling with harmonics.
Very few experiences are better than that. Trust me, I know.
You musicians whom I know or knew, you are fortunate people. I don’t envy you, as your lives are not mine, but I do wish that I was out there, somewhere, still experiencing that life-enhancing harmonic interaction.

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3 Responses to The Road Not Taken – what would my life have been like without MS?

  1. munk75 says:

    Great article, thanks.
    It really made me think, how fortunate I am. It´s not for everyone to have a healthy life, but I do admire your positive person.

  2. Oded Schwartz says:

    I can understand, so understand where you are coming from with this post. I have a chronic ‘invisible’ illness that has stopped me in my tracks at 32 years old from doing what I love and live for and for me, like you, that feels like a tragedy – it breaks my heart. I understand totally the frustration, sadness, limitations and sorrow. Some try to understand the impact upon your life, but others do not even seem to want to try to acknowledge the extent of the devastation. Although we try to be thankful for the small amount we can try to still do, it does not make up for the loss of freedom, expression, independence that we have encountered. I try to focus on the positives in my life (the love of a good man, the sun shining, the blossom on the trees, the chickens antics and their delicous eggs) and hope tomorrow, or the future, brings a better day. It does not make up for what we have lost, whether temporary or permanent, but helps me feel fortunate that I can still appreciate these blessings.

    Thank you for sharing these personal feelings and thoughts, it helps to know we are not alone in our circumstances. Best wishes OS

    • jayblewes says:

      Thanks so much for the lovely comments. I’m pretty upbeat most of the time, but it’s been 8 years since I’ve had to ‘retire’ from music and it was time to explore the process of finally moving on.
      You can’t beat the antics of chickens – thoroughly entertaining. If I had a faster internet connection, I put some photos of our ‘girls’ waiting on the fence posts. They’ve become too good at flying.
      kind regards

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