Quite often life with MS resembles something in between torture and hilarity.
Sometimes you just cannot make it up.
And guess what, it works for me.
Music of all genres has always been an important part of my life. As a child, I used to do a killer-performance of Liza Minnelli’s Sally Bowles character singing the title song of Cabaret. To mix things up, I dragged a chair into the hallway, donned my grandmother’s blue fedora hat and used her weathered walking stick. To cover my PJs – I was just not old enough yet to wear the flimsy clothing portrayed in the film – I added my grandmother’s mink coat.
Still, I had a flair for musicals and had the opportunity of singing and dancing in a few myself. As a result, whenever my vocal cords now want to exercise, I still try to belt out a few songs from my bulky Spotify account while doing the dishes or cleaning the house.
Singing, mind you, has to be done the trigeminal neuralgia way: by not applying a similar mouth-width like Mick Jagger’s to my vocal organ.
And, the dancing I also leave to better people these days. I don’t want to break any bones, or worse, furniture.
As you can tell, life is different when chronic illness imposes certain limitations, something I am all too aware of.
When asked what I would do if my health could be fully restored to let’s say, pre-MS-arrival in September 2004, one of the things would more than likely be to sing in a choir again. Mindful of my vocal cord calamities since, though – some neighbourhood cats have stopped using the back garden as an external litter tray, permanently – I’d rather not sing in public again.
Additionally, concerts would be on the list of things to do again, especially those by Pink. Despite the rock chic attitude, she knows how to sing. I’d happily join her in her acoustics while jumping up and down, hoping she wouldn’t fall from the roof again. Since she once did already, that’s one statistic I’d rather not see repeated.
Another thing I’d love to do is travel more. After a canceled trip to Rome last month, I hope to go back someday for no city inspires and moves me more. For some reason, I find peace in feeling humble in the sight of such majestic artworks and architecture. Rome is living proof that life done well, is very much worth living.
It is hard to explain the following depth of reality. One morning shortly after my diagnosis, I woke up and thought, “From now on, I will wake up sick every day, and I need to accept that I will never get better again – unless a cure is found.”
That level of new normals isn’t easy. Then again, finding something black to wear while standing in front of a wardrobe filled with black clothes only, isn’t either. The same goes for the many pairs of black shoes, black rings, and necklaces.
As you can tell, I love being challenged.
But, such is life. We all have our cross to bear in some way.
Therein, however, lies the magic. With a few tweaks here and there, I learned that you have to stop to smell the roses, with or without crippling symptoms that wear you out. Last week, I met two friends on two separate occasions, twice with maddening eye pain that made it hard to concentrate at times. Twice, I straightaway went for a nap once home, but catching up with friends over coffee was well worth the physical energy I spent.
If only talking on a mobile phone was that easy.
When faced with limitations, however, you will eventually find things you still can do. Take it from this MS-veteran, there are so many things!
So, what the hell, in my mind, I will remember those Cabaret performances in the hallway just to make myself smile. While the walking stick, fedora, and old mink have long disappeared and my legs are not interested in doing a Liza Minnelli anymore, I will still be singing the songs out loud. And not to forget, Pink also!
barts ms blog