Being diagnosed with Parkinson’s has been described as ‘having all the pieces of your life thrown up into the air and then landing wherever they land’. I think that’s a good description which could apply to any long term condition. Like pieces of a jigsaw all muddled up with pieces missing, or even pieces from another jigsaw that just don’t belong. Your life as it once was is broken. And when you have a long term condition that can’t be fixed, it can feel completely overwhelming and helpless at times.
However, just because something is broken and can’t be fixed, it doesn’t mean that all is lost. The picture may be incomplete, but it can still be beautiful in it’s own way. Even if it’s made up of mismatched pieces.
Finding a ‘new normal’ when living with a long term condition can be challenging. Especially when your condition is also progressive and is likely to get worse. Sometimes just as you get used to your ‘new normal’, it changes again. Finding a way to live with this ‘new normal’ means letting go of that ‘picture perfect‘ ideal.
I know now that pre-Parkinson’s, I took my health for granted. Everyday tasks such as writing, washing up or sewing a button (the list goes on) were not something I gave a second thought to. I just did them completely effortlessly. That was my ‘old normal’. Years ago, I used to walk a week long pilgrimage to Walsingham called Student Cross each year. Although I felt absolutely exhausted after walking 120 miles in a week and sleeping on church hall floors, I expected to feel that way. Of course it’s normal to feel shattered after something like that. Now, I can often feel that same level of exhaustion just from a long day at work. The reality is that’s my ‘new normal’.
I’m not entirely sure when or how, but some time over the last five years, I think I’ve managed to accept my ‘new normal’. There are times when I try to remember what it felt like to write with ease, or not have to rely on medication all the time, or to have ‘normal’ amounts of energy. Strangely, even though I lived that ‘normal’ for many years, I can’t actually remember what it felt like. But what’s ‘normal’ anyway? After all, mosaics are made up of tiny broken pieces. Maybe, just maybe, being a little bit broken is ok.
Living with Parkinson's 