Every eight weeks, I get an infusion of medication to help control my Crohn’s Disease. The actual infusion lasts two hours, but there’s a lot of waiting, vital signs, saline flushes, and preparing the IV before and after, so I’m usually at the hospital for a good four hours. (On a good day… if it’s busy, there’s a lot more waiting involved.) When I first started going, one visit would fling me into a mild abyss that lasted a few days afterwards. I think it was mostly because I was filled with such conflicting feelings – on the one hand, I was grappling with the fact that I had this chronic condition that was never going away, but on the other hand I was surrounded by cancer patients in various stages of treatment and they were much more worse off than I was. I guess that’s one of the conundrums of an “invisible” condition – I don’t look sick, even if I’m feeling sick. So the combination of (1) anger at having this chronic illness that I couldn’t change and (2) guilt because my kind of sick wasn’t as bad as everyone else in the vicinity… was a strange and confusing place to exist mentally.
I tried reading to keep myself busy, but my usual cure-all just didn’t work in this situation. I couldn’t focus, I was too distracted, and I was interrupted too often. So I tried magazines, and blogs, and TV shows. But not even Downton Abbey could keep me calm and engaged.
My therapist suggested music. (I started going to a therapist regularly last year for about seven months, but I don’t anymore.) I’m not sure why music was such a novel idea to me, but it completely changed my experience. Suddenly I had control over my own atmosphere.
I felt removed from the circumstances… what was once claustrophobic and overwhelming became more bearable. I started buying one new album on iTunes for each visit – a little treat to myself, the gift of new music every eight weeks. One time I listened to Taylor Swift’s new album on repeat, the next cycle was The Lumineers, the next time something different again.
Fast forward a few more months… my doctor added pre-meds to the regimen, which effectively knocks me out and leaves me groggy for the duration of the visit. I don’t mind this turn of events, though – my anxiety is certainly reduced if I’m napping.
But now I’ve come upon an interesting problem when it comes to music. My half-awake state apparently has very strong tastes in music – what I find perfectly enjoyable while I’m at work or at home or on the bus suddenly becomes insufferable when I’m drugged up. For my last infusion, I asked my friends on social media what album I should buy, and had lots of fun listening to song samples before buying new music. But then… even though I loved the music when I first bought it… when I was in my semi-conscious state, I hated it. It irked me to no end and I had to stop listening to the new album. I resorted to a playlist of old favorites, and that seemed to do the trick.
I’m not exactly surprised that my semi-conscious self is a bit grumpy… she emerges any time I fall asleep on the couch and Sam has to put me to bed. My immediate reaction upon waking is always surly, and it’s not until I’m a bit more awake that I am back to my normal self. But why is my half-asleep persona so cranky? This does not bode well for the inevitable mix of children and sleep deprivation…
I’ve learned to treat my inner grump with kindness. Normally I might berate myself for wasting money or not being patient enough to listen to the whole song before passing judgment. But on infusion days, I try to alter my inner dialogue as if I was speaking to a beloved child on a sick day. I pamper myself with new music, I banish negative thoughts, I tune out everything that I don’t feel up to dealing with; I promise myself a nap and treats when it’s all over, and I feel no guilt whatsoever if I want to indulge in chocolate or guilty-pleasure TV. And if I bought myself brand new music but my semi-conscious self is acting like a brat and refusing to enjoy it? Then so be it – I just keep skipping songs til I get to Taylor Swift. My inner curmudgeon can be quite contrary, but anything is permissible if it brings about a bit of inner peace on infusion days.
Drifting in and out of groggy sleep can be quite enjoyable when my inner self is placated and good music is flowing through my dreams. So that’s what music therapy means to me.
(P.S. If you were one of those people who recommended music a couple weeks ago – thank you! I really did enjoy listening to all the different suggestions. The only reason I didn’t say anything about what I chose was because I didn’t want to admit that my drugged self didn’t agree with my awake self’s taste in music! And that seemed a little weird to say on Facebook.)