Music and MS, or feeling anhedonic, anyone?

Apparently there's a term for people who don't like music. They are called "musical anhedonic" - which seems a boring and over explanatory term. Anhedonia means lack of joy or pleasure from life's experiences, and I don't think that accurately represents my feelings about music now.

In this article, Michel Faber tells us that Nabokov didn't like music, writing: 

Vladimir Nabokov reflected: “Music, I regret to say, affects me merely as an arbitrary succes­sion of more or less irritating sounds.”

That's a bit like my experience listening to music. It's an unfunny part of my MS progression that music is often completely overwhelming to me. I find myself avoiding it, which makes me sad. For years I've played instruments, sung in choirs, attended concerts. Wallowed in music over the holiday season.

Now, though, I know to be cautious. Listening to music can completely exhaust me. It makes me cry, setting off my unreliable emotional response. It makes me have an increase in symptoms, spasms, pain. It does something in my irritated brain.

I don't see this much in the MS literature, but perhaps it goes with the general overwhelmingness of much sensory input - it's like my brain acts like a clogged drain, and if there's a whole sink of stuff trying to get in, the pipes back up and eventually the water overflows. I get a similar response in crowds and if too much is going on visually around me. Even touring Cape Breton during one of its spectacular autumn displays of colour can knock me out.

It's another thing that's hard to explain to friends of the non-MS variety. I used to love going to concerts. I can attend, but I pay for this with days of recovery. Nasty recovery.

So annoying.

But I still try. I do adore the sound of a bassoon, or the trill of a piccolo or even a good bass drum line to rock me forward into action. But it's a bit like burning my hand on a stove - I know it is going to hurt me. So I pick my exposures carefully, which makes me seem like a neurotic.

Ah well. I suppose, as with chocolate, I can try small doses and adjust as I respond. Maybe I should try those new earplugs that minimize sound...but then would I hear the heart-soaring crescendos of Beethoven, the arias of Freddy Mercury, the tiny sounds at the start of songs that draw you in? Only way to know is to try, I suppose.

And at least it gives me permission to shut off "All I want for Christmas is You!" with extreme prejudice...

Alexithymia in MS - or what am I feeling, anyway?

 Big word. Confusing to pronounce. SO what is it, exactly? 

Alexithymia (/əˌlɛksɪˈθaɪmiə/ ə-LEK-sih-THY-mee-ə), also called emotional blindness, is a neuropsychological phenomenon characterized by significant challenges in recognizing, expressing, and describing one's own emotions. It is associated with difficulties in attachment and interpersonal relations.

It's common in autism, depression, and brain damage. What does it look like?

- inability to identify or describe emotions; mixing up physical sensations and emotions

- difficulty understanding how others feel

- difficulty understanding social cues

- difficulty with self-assessment and introspection

- limited creativity, imagination, and fantasies

- focus on logical and matter-of-fact thinking

From my readings, it's one of those things that are common in MS, along with failing to accurately read facial emotions. (the "mind in the eyes" test).

This explains a lot of my interactions with life. I frequently feel out of step with social cues. Ask me how I feel and I'll struggle to describe it, which makes writing a bit of a challenge. It also explains my shift from creating stories to editing them.

But where it can wreak the most havoc is in relationships with friends, family, partners. How can you be understood if you don't understand yourself? How can you understand others if you are emotion-blind?

There has been a lot of research lately into this aspect of MS, but these are largely small studies and observational - and they say things like, yes, it's linked - but there's no indication of how to work through it, how to improve your emotional view, how to explain it to your near and dear.

There is some help through the already-overtaxed autism resources, as it and autism are buddies. How do you know if you are dealing with it, especially with lack of self-introspection and ability to describe how you feel? 

Well, as you'd suspect, there are helpful online tests! It's listed as an autism test, but this does not mean you have autism, just that the brain damage caused by MS is altering your responses. I found it revealing, if a bit disconcerting. Why not check it out: 

Toronto Alexithymia Scale

If nothing else, you can take it to your health care provider or show to your family to illustrate what you are dealing with. And in terms of working on things to make relationships better, it's a good place to start. 

We can all do with a bit more self-awareness, right?

Well, at least I can.