half of sunglasses lying on the ground. only left half is visible

When the world is tilting, put on sunglasses

As I mentioned before, my eyesight is dropping. Yet, that doesn’t happen on a daily basis but more in waves. It remains the same for a while and then drops, sometimes slightly, sometimes a lot. But I always know and not for the reason you think.

I actually don’t notice the difference in my eyesight unless I look to the past. For instance, while going through some of my childhood stuff, I found a book a few years back that I remember reading with only a magnifying glass. Now, I need my phone to read out the large print title.

But I still know because my body tells me when it’s happening. Stabbing pain in my right eye, pounding headaches, the sensation of having my head squeezed, nausea, dizziness and the feeling that the world is tilting are the usual subtle hints. These waves vary in intensity and length.

Not knowing when it ends is the worst

The most intense period I ever had was during my PhD – awesome timing. My eyesight dropped significantly. It dropped from about 5% to below 1%, earning me the new identity of no longer being visually impaired but registered blind – yes most blind people have some tiny bit of residual vision. I had what I coin my “eye headaches” for about six months, maybe a bit longer. During that time, I had bad days and horrible days. On horrible days, every step would reverberate in my head, every bit of light would create a stabbing pain in my eye, random dizzy spells would happen – only for a few seconds – but enough to make me stumble, and nausea, always feeling like I was about to throw up without anything ever happening. I would be teaching a class and would need to grab the table to assure myself that the world wasn’t actually tilting. I would forget what I was talking about, the topic or language I was supposed to teach in and on one glorious occasion even slurred my words.  

It has never been that long and severe since and I sincerely hope it stays that way. Yet, I have spent conferences entirely in my hotel room with a good friend and colleague bringing me food, I’ve missed deadlines or just mustered enough energy to finish teaching a class to then go home, sit in the dark and silence hoping it would only be a day or three until it stops again.

The power of sunglasses

Over the years, I’ve learned to recognize early signs and if I put my sunglasses on in time, the intensity and duration of any of these eye headache spells reduces quite a bit. To always be prepared, I always wear sunglasses at the top of my head – even when it rains. I might not wear them for days but if I need them, I need them right away – no time to even rush back to the office to grab them. Of course, I get snide remarks for wearing sunglasses indoors or people suggesting that I sleep, but I’ve learned not to care. It helps me and if others would experience the same level of pain, they wouldn’t even think about making such comments.

Why and how do I keep working?

So why do I keep working even when in pain, dizzy and nauseated? Well, I don’t—not  for the entire time at least. If it gets too unbearable, I stop, not least because my body leaves me no other choice. But just like millions of other disabled people I work while physically feeling crappy. It has to do with the tight rope I and other disabled people have to walk in this ableist world: to balance between catering to my disability and (over)performing to demonstrate to all those able-bodied that I am capable of doing the same: interestingly that usually means achieving more to be seen as the same. This is not me being cynical, this is me being realistic.  Believe me, I’ve had the questions, comments and all that goes with it. One day I’ll write about the performance pressure on the disabled in an ableist world, but not today.

So if I catch it early and the sunglasses work their magic – they don’t always work – and the pain is only a dull headache plus the stabbing pain in my eye with no dizziness, no nausea and no tilting world, I work. How? Practice. And music. Those who’ve seen me work, will have noticed that I often wear headphones. Certain music helps me concentrate when I have headaches or oncoming headaches. Don’t ask me why. No idea. But it works and that is key. While writing this, I have one of those dull headaches. And yes, wearing headphones listening to Ed Sheeran. His music helps me and I don’t care if you like his music or not. At this very moment, I’m listening to “I see fire”, the song he wrote for the Hobbit movie on loop.

However, as with everything, pain and discomfort aren’t bad in themselves. That episode during my PhD, the many before it, and those since have also taught me valuable lessons. I reduced my weekly working hours from about 95 on average to about 55 per week. But in a way that’s the smaller change.

I think the most important thing I took away is how important my surroundings are. If I’m feeling horrendous, I don’t want someone from work going on about how I didn’t deliver on time for a deadline or not at the level expected, I want collaborators who understand and appreciate that I’m doing my very best but that some things are just out of my control. My body does what it wants, not what my mind tells it to do. At this point, I’d like to just clarify something: I hardly ever miss deadlines. My point is that if I were to, I need people to understand that it was not due to laziness but simply because it was not possible.

In my field within academia, we are fortunate and can choose our co-authors, those we do our research with. Due to some bad experiences, I got picky. I make sure I personally get along with the person, which is something I recommend any of my PhD students who want to become academics. Don’t pick based on publication lists, pick a person who complements your skills but also one you can happily go out for a beer with (or in my case lemonade). On top, I try to work with co-authors who understand that there are times – days or weeks – when working on highly abstract research work is just not in the cards. And except for one occasion, I’ve been very lucky. I had co-authors stepping up and taking on parts we had agreed I’d do, so that we can submit or resubmit in time. In turn, I always do the same if needed. If they tell me that something keeps them from working on their research, I step up and do their parts. For me, finding co-authors who really and truly work in a partnership with you – through the stressful and more stressful times as well as through the good and bad – that is what collaborative research is about. We all need to look after ourselves and our family. For me, my experience of working with pain has taught me that.

If you’ve never had a headache, had to work despite any kind of bodily or emotional pain, or don’t know what it is like to have migraines, please bear what I wrote in mind. People around you who you work with might be in pain and physically unable to do more. Don’t pressure them, don’t push them, show compassion. At least in my case, if I take half a day or day when it starts it can keep some of the worst effects away. So please give us that space. We’ll pick up the work afterwards. Don’t worry it will get done. And if not, health and wellbeing should always come first.

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