Can I be a good academic if I have MS? And what do academics do, anyway? More reflections on work and health

In September 2023, I wrote for the first time about my experiences with Multiple Sclerosis (MS). A year on, I offer a bit of an update and some thoughts about life as an academic.

This time last year

Just over a year ago I wrote a blog in which I told the world – well, whoever stumbled on the blog – that I have MS. The reaction to it was amazing – very humbling, both in terms of many, lovely, positive comments that so many readers made (thank you!), and in the way it prompted a number of people to open up about their own or their loved ones’ health issues.

I concluded that piece by saying, “if I don’t let [the MS] bother me (and I’m not afraid to ask for help), it won’t be a bother.” Unfortunately, just a couple of days after publishing it, it was a bother: it landed me in hospital for a week.

I’d started seeking out advice on ways of managing various aspects of my condition. One thing was quite regularly making me anxious before leaving the house, especially if it would be a while before I next had access to a loo. After a bit of an investigation, a particular intervention was recommended, on the grounds that it would both help me feel less anxious and reduce the chances of getting what can be rather a nasty infection. As luck would have it, the first time I used this intervention, I got exactly that infection.

As the infection took hold, my immune system went into overdrive – something that can happen with an autoimmune condition like MS – accentuating my MS symptoms and leaving me completely immobile. A call was made to the overnight NHS helpline. After some discussion, they sent for an ambulance to take me to A&E where they pumped me with strong antibiotics plus fluids to boost my blood pressure. They then kept me in, dignity out of the window, until the infection died down, my blood pressure was sufficiently restored and I’d regained enough mobility to get to a bathroom and have a shower.

Did I have a good trip?

Fast forward to the present day. Although I can still do the walk to my local station – just – the walk back again at the end of a day is beyond me. The first time I thought, “I need another approach”, the one I tried was to walk up the other side of the main road where, halfway, there’s a bus shelter with a bench. I could stop there and rest. One downside is that it’s a busy road; walking up the far side means not making use of the pedestrian crossing outside the station.

When I got to the bus shelter that first time with my new tactic I thought I was feeling ok and carried on. That day, I was actually careful in properly following the ‘green cross code’: stop, look, listen. There was a gap in the traffic coming up the hill but it wasn’t a big one. I needed to walk briskly. So I did..., and tripped and fell after two or three paces. “Shit! I’m on my back in the road. Can I get myself up?” Rather than even try I frantically shuffled to the pavement on my rear end; luckily, I had time before any cars arrived coming down the hill. As I lay on the ground wondering how to regain my feet, I heard a voice from across the road: “Are you ok?” A woman who was driving up the hill had seen me topple and hastily pulled in to the side. “Yes, thanks. Nothing broken”. She waited. “Are you sure you’re ok?”

By this time another car had stopped and a man had got out and was now by my side. “Can I help you up?” I hesitated and then said, “Yes, please”. He took both my shoulders. I could do very little with my legs and needed to trust him to take my weight. Luckily, I don’t have very much weight – even less than I used to have – and he hauled me up. “Thank you!” “Can I give you a lift?” My first reaction was to say no. “No, it’s fine. I live close to here.” “No, it’s ok,” he insisted, “I can take you”. “OK, thank you. That would be great”.

The woman who’d first stopped – now the traffic flow had entirely stopped in both directions and a bit of a queue had built up – helped me into the chap’s car while he put my rucksack and walking stick in the boot. “Thank you, everyone. Thank you”. I felt quite pathetic and that I’d been a burden, but what had happened had happened. No lasting damage had been done to anyone, just a few grazes to my hand, elbow, hip and knee and chips off my pride. As the chap dropped me off round the corner, I thanked him again. “It’s fine; I was just going down to the village [as some people call Milngavie]. We need to look out for each other”. He’s so right, and it’s good to be reminded that there are a lot of nice people around.

I wrote that a few weeks ago. Ironically, the event I described happened just a couple of days after I’d been telling someone how long it had been since I last had a fall. I really must stop tempting fate.

Things don’t always get better

Looking back over my history with MS, in the last few weeks it feels like I’ve reached another threshold, the newest in a sequence that felt, to me, like another significant step downwards:

• when I playing football;
• when I stopped walking up big hills;
• when I started taking daily medication;
• when I started using a walking stick all the time;
• when I first used a taxi instead of walking;
• when I started sitting while giving lectures.

The new one is my inability to walk all the way back up from the station. How am I going to get in and out of the city centre from now onwards? There are a couple bus routes that are slower, quite infrequent and still involve walking, but less. The main impact is probably more psychological than practical.

Over the past year or so, I’ve done quite a lot of travelling, usually down to London but sometimes further afield including, at the start of June, to a week-long conference on the southern edge of Paris (the Power Systems Computation Conference , PSCC – I was speaking in two sessions and am on the PSCC Executive Board) and then to a big research meeting at the Danish Technical University (DTU), some miles outside of Copenhagen, for which some meetings and a social event had been scheduled over the weekend.

Up to that big trip, I’d felt pleased with how I’d coped over the Autumn and Winter and into the Spring, especially given the chastening experience at the end of the summer of getting to know what it’s like to be a hospital inpatient for the first time since I’d had my appendix out as an 8 year old. (There were lots of very kind nurses. The doctors all seemed in a big hurry but a couple of them found time to show kindness as well. But: the food! There’d be a scoop of reconstituted mashed potato in so many meals it was a surprise it wasn’t served up with the cornflakes at breakfast. Fresh fruit was almost never seen. And how did one get to have the more aromatic smelling food that some patients seemed to be served? Perhaps it was all part of the plan to minimise bed blocking: you couldn’t wait to get back home to some half-decent grub).

It had taken a few weeks after being discharged to get my previous level of mobility back. I’d been nervous before my first trip away from Glasgow but, looking back, I think just getting on with things over the Winter and not feeling held back helped a lot in preventing me from slipping into sloughs of despond. However, after my most recent big trip, I felt particularly physically tired and my daily walking budget just a bit reduced.

A jolly decent show

FOMO. One of my daughters posted that on the family whatsapp group. I had to ask her what it meant. Fear of missing out is a real thing, and not just for Gen Z. (I had to look that up, too). I feel it, too.

This summer, for the first time, I made a conscious decision not to go to one of the big conferences I usually attend – the CIGRE Session in the centre of Paris. Although it might have been the right decision (how would I have coped with the 33°C heat in that week at the end of August?) I also had to make a conscious effort not to regret that decision, something I found very difficult when seeing posts from the conference on LinkedIn and getting some messages from friends suggesting meeting up. For perhaps the first time, I felt that I’d made a major concession to MS. I felt not just physically weak but also mentally weak.

Conferences must seem strange to people who don’t go to them. They’re just big jollies, right? Sure, you visit nice places and can sometimes get a free glass of wine or a free lunch. They can be quite fun. But are they worth it? The best ones are, I think, with the most important benefit being networking. But why does that matter? For me, that’s to do with hearing what’s going on and being able to share what I’ve heard from others, and having the chance to chip in some of my own thoughts with fellow attendees. (In my most recent annual performance review, my Head of Department told me, “you’ve always got something to say.” I think he meant it in a good way).

Often, these conversations are quite high level, broad and approximate. Does that matter? There’s a danger of the knowledge being exchanged just being hearsay or chat. A basis in solid evidence matters if good decisions are going to be made for things that matter. That depends on experience of real events, rigorous modelling or experiments and solid theoretical underpinning. It also depends on creative but not fanciful interpretation that doesn’t limit itself to accepted wisdom, but is prepared to accept that wisdom if it seems closest to the truth or most useful.

To get value from conferences, I need to be a networker. As an academic, I should also be able to generate solid evidence and help with the correct interpretation and application of it, throwing all of that into the mix at conferences and in academic journals. Am I, or my group, able to do all the above?

At PSCC, I was reminded that there is a lot of theoretical underpinning of, for example, control of grid-forming converters (technology that looks increasingly important for low carbon power systems) or the advanced mathematics that goes into optimisation (essential for ‘smart’ system planning and operation), things that I don’t fully understand. I don’t spend enough time – or, to be honest, any time at the moment – reading the relevant literature. Like foreign language skills that go unused for years, my ability to read and assimilate such material is in danger of withering away.

What else do I do with my time? I hope I understand enough to get a feel for what these specialists are doing. Is that ‘feel’ good enough to be useful, and how do I use it? I try to make sure I spend enough time talking to electricity sector industrialists, policy makers and regulators to understand their challenges. How much does my own knowledge and understanding actually help them? It only helps if I can go beyond the superficial to something that’s actionable such as a change to industrial practice or commitment to development of ideas that might become new practices, or articulation and delivery of a new research project. (There are particular challenges around the latter that have always been things have kept me awake at night since I became an academic. They’re difficult to talk about. I’m not ready to do that in public yet!)

With a little help from my friends

A number of colleagues have been great: solicitous of my needs but still making me feel that I have a contribution to make and that I’m very much part of the team, such as thinking specifically about how I’ll get from one place to another or suggesting somewhere to go to eat that they know I’ll make, offering a lift to and from the local station or asking, simply, “shall we go and sit down?” If other people are not so solicitous, I’m sure it’s almost always because they’re just not aware of what I’m able to do or find difficult. If I’m struggling, it’s not up to them to do something; it’s up to me.

In any case, how can they understand what I’m going through? There’s a former colleague who has MS and who has much more limited mobility than I do and what seems like almost constant pain. I have no real comprehension of what that’s like. One thing he’s done has been to agree with his university that he can work 100% from home and do all his teaching online. However, he still writes and contributes to research albeit not, I suppose, via conferences.

I knew someone many years ago who had been born with a severe physical disability due, I think, to a rare genetic disorder. It left her dependent on lots of care and regular medication. Before that, I met someone a couple of times who is completely blind. I have no idea how they managed. I’m sure there were times when they became frustrated or angry with the limits their disabilities placed on them and the lack of adaptation in the world around them. When I was in their company, they seemed entirely unselfconscious or self-pitying and just appeared to get on with things. I’m left feeling in awe of their fortitude.

Keep calm and carry on

Assuming I can keep myself together mentally, what sorts of things can I get on with as an academic?

I sometimes feel that I spend too much time engaging with too broad a range of applications and end up skimming all of them and not going deep enough to make a difference in any of them. (It could also, with some justification, be argued that I’m too slack about admin and that I don’t make enough time for some of my students). I feel fortunate that various colleagues and collaborators often say nice things about me – the most honest of them also highlight my “areas for development” – so I’m genuinely not fishing for compliments when I mention how much I do across different areas. I’m just trying to reflect honestly. Most particularly, I’m also trying to think ahead to what I should dedicate my professional life to when I find it hard just to get out of the house.

If – or, as currently seems likely, when – I mostly give up travelling, what kind of academic will I be then? How can I continue to add value and justify my salary?

There was a nice paper from the RAEng a few years ago outlining different kinds of engineers. One of them was “integrator”, which I think is a word that best fits how I’ve seen myself as an academic over these last few years. (Another was “change agent”). As my mobility decreases, can I continue to be that, or do I need to change my main focus?

I can’t see myself being a conventional, research-focused academic who churns out academic papers. Like some friends who feel the same way, I’m quite tired of that whole game: the palaver, working with your post-docs or PhD students, of teasing out some mathematical or methodological niceties, framing them to please an anonymous set of reviewers who give the strong impression in their comments that they’ve never been near a real power system, waiting months for their comments on algorithm details, expecting to get some about applications and not getting them, piecing together updates to the papers and detailed responses then waiting more months for news of other ways in which you haven’t satisfied the reviewers. All the while ‘real world’ problems continue to emerge and not get solved.

Are you experienced?

Maybe there’s something useful that comes with experience, a seen-it-before distillation of the main point, insight through analogy with a phenomenon that might only be partially understood or dimly recalled but still helps to illuminate. I hope so. I don’t rate my chances of learning a lot of new maths, control theory or AI techniques at this stage of my life.

While on the subject of AI, I attended a tutorial on “trustworthy AI ” at PSCC. One of the presenters at some point said, “Of course, AI in power systems is a very new application”. I’m not sure how new he thinks “new” is. I happened to be sitting in front of Louis Wehenkel whose papers on AI applied to assessment of power system stability I remember reading in the early 1990s. I turned to him and asked when he started using AI in power systems. I knew the answer. “In the mid 80s, but already there was work in the 70s”. My own PhD thesis is from 1995 and entitled “Artificial Intelligence and Uncertainty in Power System Operation”. And, incidentally, I do think we’d generally be better off talking about “data-driven methods” to reduce the hype and misunderstanding that comes with the term “artificial intelligence”, to contrast with methods that try more explicitly to capture the physics of systems and the equations that describe them. (Perhaps I should come back to that in another blog).

I want to make use of my experience but avoid being the boring old man in the corner who insists that there’s nothing new and everything’s been done before. I couldn’t possibly know everything that’s going on now, what new things have emerged, even if I was getting around to lots of conferences. I need to listen and ask respectful but searching questions, to try to help the youngsters move the community’s understanding along. I like to think I do that quite well, but how well can I continue to do it – in particular, to know what are the good questions to ask or suggestions to make – if I’m not attending the best conferences? (And, by the way, how many international conferences should any of us be attending given the climate impacts of flying?)

The roles of academics

There are, perhaps, four main roles that academics play: ‘scholar’; educator; manager; and ‘marketer’. We don’t all do all four; some of us only do one (albeit perhaps extremely well). It might surprise you that, in my experience, not every academic is a good educator or devotes a lot of time to it. Often, the other roles demand so much attention that teaching gets squeezed out. To be honest, that’s how it’s often felt for me. If, largely as a result of losing touch with things due to reduced networking, I get to the stage of not writing so many learned papers myself (not that my conventional academic output is anything like prolific anyway), or failing to win lots of big grants, the thing I ought to be, and try to be, is a good educator, to go back to the basics of what a university is about: a place where people and their learning are nurtured, for the good not just of students at both undergraduate and postgraduate level but also younger members of staff. God knows, we need a lot more people with good electrical knowledge and power systems knowledge than the pipeline is currently delivering.

Right now, I don’t know how close I am to a change of role or emphasis in my working life. I still think I’ve got a lot to give in terms of research and ‘knowledge exchange’ with industry and policy makers – among other things, there’s a new UK Government to get to know. Let’s see how things develop. I’ll let you know how I get on.

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If you’re interested, there are various places online where you can find out more about MS, such as via the MS Trust or the MS Society . If you live in the Glasgow area and want to do something to support local people with MS, please consider making a donation to Revive MS .