A few weeks ago, at the beginning of March, I was feeling quite unwell with a chest and sinus infection, for which I’d had three courses of antibiotics from my GP. It was pretty unpleasant but compared to what I was about to experience, it now looks trivial. Around the 7th March, 2016 I started to go into a series of hemiplegic migraines in which I would lose feeling down the left side of my body accompanied by awful visual aura and a headache sensation afterwards that made me just want to hide and cry. It was extremely uncomfortable and given that I was also losing sensation in my arms, legs, and face, I decided to call 111; the intermediate emergency medical service in the UK. They sent out a paramedic on Monday the 7th who didn’t think that I’d had a stroke at that time. On Wednesday the 9th March I had a recurrence again of this loss of sensation and my GP sent me for an emergency CT scan at Barnet Hospital. This did not show anything too alarming and I was told to rest for a few days and hopefully all would be resolved.
By Sunday the 13th March I was feeling much, much worse again and went to an emergency care centre, where I was prescribed a set of triptans to control the migraine symptoms. This may have been the first mistake but it also helped a great deal with the pain, so far as I could tell. On Monday the 14th March I went to my GP again who began a referral to neurology at a hospital since the migraine symptoms were not abating. By Thursday I was once more feeling absolutely terrible and my GP sent me to an accident and emergency department where they began to instigate further triptan treatment, along with other painkillers. Since that time I have been in hospital and MRI and CT scans have revealed several strange features of my neurological and vascular systems: I have been suffering, we suspect, from a cerebral vasculitis for some time. This has caused my carotid arteries to become blocked by inflammation but also caused my vascular system to broaden in another route. In other words, as one route to supply oxygen to my brain has been cut off, another has broadened. The MRI also showed that I have suffered from a small stroke (“acute ischemic infarct”). It is possible that this may have been caused by the triptans which can result in vasospasm if the patient has a history of vasculitis, which is what my team of doctors think they can see on the CT scan.
So, what will I do from here? Well, at one point last week the team of vascular surgeons came and scared the hell out of me by telling me that they thought they were going to have to stent my carotid arteries. They also told me just how difficult/risky this can be and told me at 2.30am, which I didn’t think was ideal. However, having reviewed the MRI and CT scans, the neurologists, rheumatologists and vascular team now all agree that we have to treat a chronic cerebral vasculitis using a course of drugs, not surgery. For that reason I will start a course of cyclophosphamide tomorrow. The stroke is small enough that I should be able to make a full recovery from this, the doctors tell me, provided that they can control the vasculitis. The usual length of treatment with cyclophosphamide is 6 months, once per month. It comes with a potential for nausea after I’ve taken it. I will also be prescribed a regular dose of blood thinners (to alleviate stroke risk) and amitriptyline (to prevent the debilitating hemiplegic migraines.
All in all, what was supposed to be a celebratory time of overcoming(!) has not been a good few weeks. I wrote, just last month, of how I had coped for 10 years with a chronic autoimmune condition. I feel I might now have tempted fate by writing that post, although the number of people who wrote to thank me for doing so makes it worthwhile nonetheless. I also feel that my identity is somewhat under scrutiny. I am currently, so far as I know, the youngest (full) Professor of English in the UK. I worked pretty damn hard to get there and have a reputation for being a prolific author and for building large-scale projects like the Open Library of Humanities. What does it mean to have a potential problem with your brain – through a blood-supply inflammatory condition and through a stroke – but to be an academic? I’m lucky and am hoped to make a good recovery but it does bring to mind, for me, Joss Winn and Mike Neary’s critique of academic identity. How tightly do I tie my own worth to being able to think, move, and exist in a way that can be thrown out of the window in a few minutes? How will my friends and colleagues react to me if I am not the “same person” that I was before I had my stroke? (I think I’m going to be fine, provided we control the vasculitis, but is this the right way to be considering this? Wouldn’t it be better to instead begin recalibrating what I value in myself and in others?)
In any case, I hope to make a good recovery and will keep everyone posted. In the meantime, my colleagues are covering for me on the Open Library of Humanities and I am particularly grateful to Caroline Edwards in the meantime who is taking on most of my duties. There’s quite a long way to go and I won’t know what my recovery looks like for a while. At present, I was able to write this post but I feel fairly nauseated and tired, probably because my brain is being starved of oxygen. I’m also still very migrainous. So far, Birkbeck has been very supportive and, as ever, I am very grateful for everyone at my institution and everywhere else who has sent kind wishes.