When diagnosed with multiple sclerosis (MS) 17 years ago, Willeke van Eeckhoutte was determined to carry on doing what she loved most – singing and listening to music.
Do you ever think your life should have its own soundtrack?
I was lucky enough to grow up in a house that adored all kinds of musical genres. The sweet sounds of rock 'n' roll, folk, classical, and country music filled my childhood home for all hours of the day. I ascribed certain songs to different emotions - endless playlists of "Happy," "Sad," "Frustrated," and "Excited," tracks that perfectly matched my current mood.
I've clung to my love of music all through my adult life. My Spotify library is crammed full of old songs, new songs, songs in different languages, tracks that'll get me "up and at 'em," and tracks that'll soothe me to sleep. My life is a movie-musical, and I wouldn't want it any other way.
Of course, in any movie musical, songs remind characters of milestones in their lives. Their high school prom, their breakups, their wedding dance...
And me? I have one for my first lumbar puncture.
I've always used music to cope with bad news
It's been 17 years, and it still makes me laugh. Before I knew I had multiple sclerosis (MS), I'd been admitted to the hospital for a CAT scan. After several tests, the doctors concluded my symptoms needed further investigation and scheduled me for an MRI scan.
The results showed a very high probability of multiple sclerosis. After looking at my case, the consultant said I'd need a lumbar puncture (spinal tap) and asked me to stay in the hospital for a while longer.
I called my loved ones and told them the results "didn't look good." It felt unreal. So unreal, in fact, I spent most of the following hours convincing myself I'd "been through much worse" and I'd be "fine - you'll see!"
This all started to sound a bit hollow after a while, so I went through everything I was grateful for in life. I had people, so a good support system. I loved my hobbies. I wouldn't let my health stand in the way of my interests if I could help it.
And I had music, too! I could count hundreds of songs that had helped me through difficult times in the past. Now would be no different.
It was time to fire up my soundtrack.
Lumbar punctures, guinea pigs, and U2
As I was getting ready for surgery, my consultant admitted this was his first-ever lumbar puncture. Or his first on an actual, living specimen, at any rate.
Suddenly, I was very glad I'd taken the time to list all of my favourite things.
A guinea pig? A test bunny? Me?
Nervously, I presented my lower back for the procedure, holding my breath as the consultant struggled to insert the needle into my spinal canal. As he fought to take a sample of my cerebrospinal fluid, my phone began to ring.
It's a beautiful day
Sky falls, you feel like
It's a beautiful day
Don't let it get away
The U2 classic cut through the tension in the room. Me being an eternal optimist, I sang along as the needle prodded and poked towards its, and my, destiny.
I carried on singing after my phone rang out, with the nurse and consultant laughing along. They said they'd never had anyone sing during this procedure before. "Of course not," I replied. "I'm your first live specimen!"
This time the laughter was slightly too hearty. The first lumbar puncture failed to tap any fluid from my spine, but I still had to lie down and rest for four hours.
"But I feel fine," I thought as I laid down on the crisp sheets. Of course, I'd spoken too soon - after a while, lumbar puncture syndrome kicked in, and I felt like someone had dropped the whole world on my head.
Trigeminal neuralgia, mood spoilers, and Pavlov's Bell
Around 25% of people get a whacking headache after a lumbar puncture, along with dizziness, feeling sick, and pain radiating through their lower back and legs. I was not one of the lucky 75%. Every time I moved, it felt like my head was being hit with a cartoon mallet. The pain honestly made me consider demoting "unilateral trigeminal neuralgia" to the second most hideous feeling I've ever experienced.
This was no mean feat, considering trigeminal neuralgia (TN) can cause electric shock-like jolts of pain from something as mild as a gentle breeze on my face.
The beautiful day I'd woken up to was no longer sunny nor cheerful. With every hammer blow of agony, all that was going through my mind was, "MS, I hate you already!"
But that wasn't the end of it. I had another lumbar puncture scheduled for a few days later, the effects of which caused me to be bedridden for over a week.
17 years later, the whole experience has had a weird "Pavlov's Bell" effect on me. If I hear even a whisper of U2's "Beautiful Day," I try to run as fast as possible in the opposite direction.
Hyperacusis tried to take music away from me
Unfortunately, MS and its symptoms have rained over my relationship with music. Hyperacusis - an increased sensitivity to sound and environmental noise - often shows up when I least want it.
Watching films in the cinema, where I have no control over the volume, is now impossible. Even going out to eat at a nice restaurant is no longer on the cards. With the hubbub of the other diners' conversations crashing against each other, I'd often have to get up and leave my dinner half-finished.
But it's not just hyperacusis that causes problems. Loud noises can also set off a trigeminal neuralgia flare-up. Lumbar puncture syndrome may be No. 1 on my list of "Most Painful Things," but a TN flare-up is no picnic. Experience has taught me to be afraid of loud noises, and some memories still trigger my PTSD.
But, despite my struggles, I'm determined to keep on singing.
My health has affected my social life and hobbies, but I won't let it snatch away everything I love. I've worked hard to soundproof my home, and I'm in control of the noise levels. If I wake up with a song in my head, you can bet your life I'm going to sing it out loud or at least hum along to the tune.
Without music in my life - or even just the memories of music - my life would be much more miserable.
So, to MS, I'll say this:
You may be unpredictable. I may have no choice but to follow your winding, twisting path. But with every step, I'll have a song in my head and a rhythm in my heart. And you'll never take that from me.
NPS-IE-NP-00384 April 2022