Mental health and MS: An emotional balancing act

In his latest blog on mental health and MS, Will Berard writes about how MS can affect your balance emotionally, as well as physically. 

A corollary of Joni Mitchell's law ("you don't know what you've got 'till it's gone") is that you don't know how complex and interlocked a system is until it starts to fail. Before this lesson became painfully manifest to all of us - as the social, economic and political aftershocks of the COVID-19 pandemic start rattling through civilisation - it was taught to me by multiple sclerosis, which, when I have a relapse, often affects my balance.

Balancing 70 kilograms of mammal, along the long axis, on a contact area smaller than two square feet is no small feat. Particularly with only two lower limbs, a single spine and those unreasonably high centres of gravity. Hominids, amirite? 

Balance requires the integration of information coming from touch (the pressure on the soles of the feet), proprioception (the sense of the muscle tension, and the body's position in space), vision, and of course the inner ear. Inner ears, plural, actually, which complicates things further. A person with a clock can always tell the time. A person with two clocks is never sure. 

The cerebellum looks at all those incoming signals to figure out, literally, which way is up. This information is fed back to the body, in the shape of postural reflexes. So we can stand, walk, hop, dance, or do that crazy parkour thing. There is also a direct connection between the inner ear and the extraocular muscles (the vestibulo-ocular reflex), which, in normal mode of operation, allows you to keep your eyes on the proverbial prize even as you crane your neck around.

When MS affects this system, those postural reflexes work against you, giving you a gait "like the village drunkard in some early Irish novel"*. Or your eyeballs start moving on their own accord: nystagmus and vertigo go hand in hand. Presumably they're holding onto each other because they're feeling dizzy.

Balance issues are my most visible symptom - and 'village drunkard' is hardly a good look. Emotional balance issues, however, are my most invisible. They were invisible to me for a long and troublesome time: I only twigged once the chaos they were causing around me was impossible not to notice. 

I was able to experience first hand the disparity of esteem between those two types of balance trouble. Should someone assume drunkenness rather than disease (an assumption sadly understable, though maybe rather unkind, on a Tuesday at 9am in Sainsbury's) an explanation, or, as I discovered later, using a walking stick, will set them straight. Mood swings, mood roundabouts, and mood playground slides are harder for observers to ascribe to MS, even when it has been explained to them. Repeatedly, in some instances.

The limbic system is rightly said to be the seat of emotion, but emotional self-regulation also involves the prefrontal cortex, equally widely acknowledged to be the locus of executive function. Normal emotional function is a balancing act between those two forces: the emotions, and their conscious, rational regulation. Losing balance here can range from subtle emotionalism to full blown pseudobulbar affect.

Lesions near the amygdala can be expected to result in impairment of social cognition - the ability to read other people's emotions on their faces, and correctly interpret social cues. The executive regulation of emotions is the remit of the ventral prefrontal cortex in particular. The dorsal prefrontal cortex, conversely, handles cognition and attention, with corresponding MS symptoms, which are outside the scope of this essay, but both cognition and attention have a role to play in emotional self-regulation.

These are all little known, under-publicised, invisible symptoms of MS. Often invisible to the people with MS themselves, self-awareness being an aspect of executive function. A combination of poor social cognition and loss of inhibition is a destructive mix for people around you, and it would be hard to blame them for assuming this behaviour is deliberate, somehow part of your personality. After all, we are, when all is said and done, defined by our behaviour. It has been hard to explain all the above without sounding like I'm making excuses, or playing the disability card. I cannot find words strong enough to capture how existentially distressing it is to alienate yourself from your support network when you need them the most.

Also disheartening is that all the standard advice on this family of symptoms boils down to warning the people likely to witness them. Ideally before they do, for obvious reasons. There is little for the people with MS themselves to do. I remember feeling more robbed of agency by this advice than I ever felt by MS itself. But I believe there is something to be learned from the parallel with physical balance. 

Dizziness only leads to loss of balance if acted upon. Equally, emotional dysregulation is subjective, and its consequences only happen once emotions get acted out. Acting out emotions is an instinct as deeply ingrained as postural reflexes: the evolutionary purpose of the limbic system is, ultimately, to drive motor output. But acting out from a place of disequilibrium only results in moving further out of balance, be it emotional or physical.

I have found yoga to help with physical balance - amongst many other things. A deliberate effort to become consciously aware of the interplay of sole pressure, proprioception, vision and inner ear signals, repeated daily, promotes neuroplasticity: the creation and strengthening of new neural pathways to supplant those damaged by MS.

Meditation, specifically mindfulness of emotions, serves the same purpose. Should emotions arise,  I simply attend to them, their subjective experience in the body, the way they arise, move through, then fall away. Doing this on the cushion gives me a setting where it is safe to experience even very strong, sometimes distressing, feelings, without any risk of them being acted out. This is why meditation is often described as "the yoga of the mind": the claim that meditation "centers", or "grounds", its practitioner is more than just an image.

There is another leaf we can take out of Mrs Mitchell's book (her libretto, as it were), and it is to look at symptoms "from both sides now". First, to encourage parity of esteem from the people around us. But also because, be they physical or mental, our symptoms are, in the final analysis, neurological, and looking at the commonalities in the ways they manifest might help us discover a thing or two about the ways we can manage them.

* Hunter S. Thompson

• Pseudobulbar affect (pathological laughing and crying) - information from the MS Trust
• MS and your emotions - information from the MS Trust
• Depression - information from the MS Trust
• Mental health and MS: Understanding your mind - blog by Will
• Mental health and MS: Managing anxiety - blog by Will
• Mental health and MS: Dealing with my black dog - blog by Will
• Will's vlog (YouTube) - more musings from Will on life with MS