Losing your voice
The Rogue and I regularly watch the Great British Bake Off. This year Nigella has joined the cast and it is awesome. Whenever we watch, we enact a little tradition where I sing the theme tune. It is a silly thing. But it’s ours.
Today I forgot to sing the theme and the Rogue looked at me with pointed expectancy. So I rolled my eyes, smiled, and began.
I tried, and I couldn't get the sound out.
I could speak without too much difficulty, but my abdominal control was too shaky to force the sound to stop and start on cue. The sounds blended, blurred, and were incomplete. I sounded like a child in a school play, off cue, off key, and apparently singing a different song to the rest of the choir.
I’m right in the middle of the Ocrevus ‘crap gap’, where dormant but familiar symptoms start to reappear. Ocrevus works by deleting specific elements of your immune system, like a good bouncer kicking out patrons too imbibed to know they’re causing trouble. But in the time waiting for the next dose these immune cells gradually reconstitute as more patrons start to enjoy happy hour, and until the bouncer comes back on shift glasses are getting broken, fights are breaking out, and someone has started riding the fruit machine like a bronco. These neurological falterings had disappeared into distant-if-traumatic memory and in Ocrevus’ absence they are flaring back to life like a seemingly extinguished fire suddenly gifted oxygen. Like neurological backdraft.
One of my bigger lesions is known as Jonathan and he sits somewhere in my thoracic spine, at a guess. We rarely MRI that far down my body owing to the brain and cervical spine needing greater attention from the machine and appreciating that completing three MRIs in one sitting might require me to order Uber eats from the inside of the big beige plastic tube.
Jonathan is large enough to function like a spinal cord injury. I mean he essentially is a spinal cord injury. Jonathan makes it hard for signals to reach my legs from my brain, and that weakens them considerably. In the throws of the ‘crap gap’ I can still walk a kilometre but by the end of that distance my body’s movements are slow and deliberate, lifting each leg carefully and planting it ahead of me consciously and heavily. When I haul my ass into my front door I look like I might be practicing to fake filming the moon landing and feel like I need to call all the ambulances.
Jonathan also impedes signals to my bladder. The bladder has standing orders to remain sealed and needs a message from central command to open. When these signals fail to arrive the bladder struggles to remain open long enough to empty, so I use intermittent catheterisation to help out. Ironically, Jonathan also periodically triggers spasms of the detrusor muscle, designed to squeeze pee out during urination. He particularly enjoys doing this during meetings, presentations, on the tube, while asleep… just not while on the goddamn toilet… Jonathan…
Jonathan also impedes the signals to my lower abdomen. This isn’t usually an issue, but when things are tricky I lose the ability to control my pelvic floor, which synergises really unhelpfully with bladder spasms. When Jonathan is like a new puppy wanting to play tug-of-war, but he has hold of your TV power cable, it’s really unhelpful to lose the strength you need to fight your end of that battle.
He also weakens my control of the abdominal wall. You know, the wall of muscle that keeps all your tummy organs in. What this means is that as the muscle control weakens, my lower stomach tends to bulge outwards. Now obviously this isn’t fun at the best of times and periodically really threatens to wreck my waistline and take my self-image with it, but there’s another issue. The diaphragm that manages your breath control relies on a certain internal pressure balance to function. It tenses, creates a vacuum in the upper chest cavity and that inflates the lungs. Lower pressure in the internal lower abdomen isn’t a problem here, it actually helps a little, but expelling air with force is harder. The diaphragm can’t forcibly expel air, the muscle tensing does the opposite and you can’t relax a muscle with greater force. Instead the abdominal wall tenses and creates greater pressure below the diaphragm, along with intercostal muscles creating pressure above, this forces the air out with greater expulsion.
This is how we sing, or shout, or hurl insults at the TV when favourite faithfuls get banished in the Traitors.
The weaker my abdominal wall becomes, the harder I find it to expel air forcibly. My singing, public speaking, and reading blog posts for RollingForInitiatitve (I do it all for you, my ride-or-dies), all become much more difficult.
I noticed it recently recording content over the summer for the University. As my recording sessions got longer on the warm summer days I found my intestinal organs periodically staging prison breaks. My usual frankly rippling six pack would start to slowly bulge into more of a keg, and gradually my intestines, backed by my liver and bladder and supported by my stomach and kidneys, all spread out to explore their newfound freedom.
My voice got tired and speaking started to require some more effort, then a lot more effort. I set my microphone up to amplify quieter sounds and that helped for a time, but gradually my teaching sessions were becoming less psychological education and more ASMR.
I have found one way to help, and that’s by literally holding my abdominal wall with my hands. If I use my arm strength I can manually exert pressure on the lower abdominal wall and restore pressure within the abdomen. Although literally holding in my gut with my hands when public speaking doesn’t look super effortless, it’s better than needing to use semaphore, or wild gesticulation, or flashing my phone light in morse code to communicate complex psychological theories.
There might be one other solution.
And I don’t want to consider it.
..
So I’m delaying even saying it.
…
A girdle.
I really do not want to try a girdle. Maybe it’s my own internalised ableism, or ageism, or maybe I just experience a guttural reaction to the word. Gird-le. Yikes.
But there is an alternative that is a touch more… fashion forward, let’s say. Shapewear. A totally reasonable option. Or if we want to be more radical, a corset.
I don’t know if I can wheel in a wheelchair wearing a corset. But shit, I’d look pretty great trying. I’m sure I could find a way to incorporate one into an appropriate-if-unreasonably-fashionable work fit. And if it grants me the ability to project my voice… maybe it’s worth a try.
Then there is the obvious alternative. Nerves dont have to work so hard if the muscles they are directing are really strong. So clearly we gotta do what we gotta do… and get ripped. I can see myself with abs like an egg carton. Crunching, then, is going to be our main method of managing this problem. The challenge with crunching is that it involves lying down, and getting up can be an interesting adventure, especially when I’m too hot. So I think I need to frequently crunch, but not do so many in one sitting (in one lying?) that my body temperature begins to escalate. So… lie down… crunch some times… then roll onto my front, and work my way back to standing.
Repeat as required.
This is multiple sclerosis. A series of fundamental, sometimes hilarious, frequently existential, pickles. And in the face of such problems we can either try to run from the threats they present, or we rise to their challenge. We creatively solve one problem, we solve the next, and then the next… and if we solve enough problems we get to keep thriving.
So when I’m out there rocking a new look, wheeling around in a get-up that looks like I might be heading to a romantasy ball, with abs that could bend rebar, and someone asks why I look so unreasonably outstanding today I will answer…