One of my new year’s resolutions (made in April or thereabouts) was to keep in touch with people more; become a little bit less of a hermit, and generally be more sociable. Those of you who know me well, might think that a bit of a tall order, but I figured the COVID lockdown hadn’t really affected me much, and that was probably indicative that I should put myself about more.
Also, working from home and finding any excuse to contact colleagues or attend virtual meetings made me realise I was probably less of an introvert than I thought.
So, I decided to investigate volunteering, and not the sort of volunteering where you sit behind a till in a charity shop, but volunteering in ways that would be of unique value; somewhere I could bring something purely Dave to the table. If this could be in a way that fitted in with my ideals and values as well, then that would be perfect.
So, to me, apart from work-related skills, the obvious thing was to put the MonSter to good use. He’s generally well behaved after all; he’s mostly house-trained, but still sufficiently interesting in the right circles.
I can no longer give blood because of the MS, and hopefully it’ll be a good while until I can donate my organs to the NHS and my brain to a medical school brain bank, so I wondered if I could contribute to medical science while I was still alive. The ideal opportunity came-a-knocking when I saw an advert from my local hospital looking for volunteers to help in their brand-new education unit.
After a couple of telephone chats, and a quick medical exam, I was placed on their books, and a couple of weeks ago they called me up for my first mission.
I’ll mainly be working with undergraduate medical students, for a day here and there, but it could also be with hospital management, nurses, junior doctors, or consultants. Students need practical hands-on experience of dealing with real (living) people with real medical issues and because I have such lovely examples of nystagmus (shaky eyes) on extreme left and right gaze, fasciculation in the calf muscles (twitchy legs) and my legs sometimes spasm after I sit down too long, they thought I’d be a good test subject.
I also display another symptom that I’d demonstrated to the facilitator, Dr W, in our initial chat, something that I knew was pretty darn cool, and something she said she’d only ever seen a couple of times in her career, but more of that in a bit.
And so, it has come to pass. I’ve finished my first morning as an example patient, literally having my head examined by ten students from a university hospital in the midlands. After an hour listening to a rundown of head wiring, I took part in ten cranial nerve examinations split into two sessions. Each student took their turn with me one-on-one for about ten minutes while the others watched.
Because you have someone’s full attention and they have yours, it reminded me of the time when the artist Marina Abramović sat and stared at people individually, one after the other; giving them the full eye-to-eye across a table.
So, for the cranial nerves: I made a grin, I screwed my eyes up; I stuck my tongue out, saying “aaaah”; I had my uvula examined to see if hung normally; I had my pupils looked at while they swung a pen torch into each eye; I resisted having my eyelids pulled open; I turned my head left and right while they tried to stop my head turning left and right, and I shrugged my shoulders and resisted them being pushed down. I said whether I could feel my face being touched in six different places corresponding to trigeminal nerve endings; I had a ringing tuning fork placed behind each ear and then placed in front and asked which was louder; I recounted numbers whispered into each ear while a noise was made in the other; I had my field of vision tested and probably some other tests I haven’t remembered.
The students were all a little awkward and shy, and no-one easily volunteered to go first. They varied in ethnicity and background; they were eighty per cent female; some knew their stuff; some needed prompting, and some had to be shown the correct way to do something, particularly for the field of vision tests which are a little bit tricky to coordinate.
And it was following a finger left and right with only my eyes moving where I truly shone.
I still get a bit of doublevision looking left which can’t really be detected externally, but when I get the lateral nystagmus on extreme left and right gaze, it is a bit of a textbook example, so they were all glad to uncover this. I’m fairly normal with my other head functions, so this was such a good thing for a medical student to find and they were all rightly proud of themselves to unlock this particular trait. It is a low hanging fruit for someone on the hunt for visible symptoms, but it’s a good one to discover, and they each had their moment of “aha!”.
Eventually, each session ended.
“So… What do you think the patient has?” asked Dr W.
The room fell silent, everyone focused on a spot on the floor in front of them.
“Anybody…?”
There was one guy who’d answered all his questions correctly in the lecture room, and had been a little more confident than the others, volunteering first to do my exam. “Erm, when I watched his eyes move, I think, erm… one of them stopped where it was for a fraction of a second while the other carried on moving.”
“VERY good! You only ever really see that with one condition.” said the doc, and then, annunciating each syllable: “It’s called inter-nuclear opthalmoplegia. It’s a bit of a smoking gun. Do you care to hazard a guess at the condition?”
“Erm… is it… MS?”
And now for the big reveal, a ‘ta-da!’ moment like you get on the telly.
“Dave, what condition do you have?”
“I have… MS!” I replied smiling at the guesser.
I then answered a few questions about my diagnosis journey, and I recounted how important it was to piece together a medical history. What might, in isolation over a period of time, be diagnosed as a potential detached retina, an inner-ear infection, and a mystery virus causing a debilitating lack of energy, could actually be optic neuritis, vertigo and fatigue: three pillars of an MS symptom-portfolio.
And because everyone else had been too wrapped up in the nystagmus to notice the more subtle elements of my eye movements, Dr W gathered everyone round and made my eyes do the left-right one more time, illustrating the blip in movement with both her index fingers, so even I could understand what had happened.
Chatting with her afterwards, she told me they were all third-year medical students and none of them had really practiced on a real living person until now. “Every year, I tell them they really need to get over their fear of touching a stranger and being one-on-one with them. It’s an essential part of the jobs they want to graduate into after all. These barriers need breaking down, so having someone such as yourself volunteering is really valuable, thank you.”
I thought with a smile of the time an initially chatty student had fallen silent, unable to make eye contact after they’d watched a rod being inserted somewhere very private to inflict Botox into my bladder wall.
I enjoyed the morning too and I really felt like I had been of real use. One of the students had stayed to chat with me for fifteen minutes in the tea break. She had had a squint corrected as a little girl, so could relate to my doublevision and eye problems. Also, she had recently been diagnosed with ADHD, so I asked her questions about that and her career ambitions, and I learned something from her too. I said it must’ve been like jigsaw pieces falling into place on diagnosis like it had been for me, and I just provided a listening ear while she bounced from one thing to the next.
I’ve spent most of my adult life losing contact with people and regretting it, and I think that’s where the new year’s resolution came from. Just days before my fiftieth birthday last year, I’d bumped into an old school friend, completely by chance, at a family wedding reception of all places, fifty miles from where we’d both grown up.
This was someone who I’d hung around with a lot as a teenager, and had been very good friends with for a couple of years. Seeing her again was like the intervening thirty-five years hadn’t happened and we both remarked on the other members of our little crowd and who we’d lost touch with since we’d seen each other last. I reflected afterwards that I need to value the people around me more. In another thirty-five years, chances are that I’ll be dead and buried, and becoming a gift to medical science all over again.
Dave's Magical Brain 