The Rev Lis Goddard, Vicar of St James the Less, Pimlico, reflects on her experience of ministry and epilepsy and the pathway to being able to celebrate who she is, a child of God, made in the image of God.
When I was a child, I thought it was normal to wake in the night with a part of your body shaking uncontrollably. It wasn’t until I went away on a school trip aged 12 and had a fit in front of all my school friends that it became clear that what I was experiencing was not normal. From then on my epilepsy got worse, impacted by puberty, and it became clear that I had more than one type of epilepsy, which made controlling it difficult.
My epilepsy manifests in three different ways:
· tonic clonic – the classic fit which everyone thinks of when they think of epilepsy;
· absence seizures, where one mentally disappears, staring into space for a few seconds,
· focal seizures, affecting just one side of the brain, which can lead to just one part of the body losing control or not being able to respond to questions, being confused in the moment.
Early on I decided that I didn’t want to hide the fact that I was, that I am, epileptic. I have always been open about it. Nor did I want it to define me, despite the fact that it impacts my life in really significant ways. I came to faith as a child and I always knew that I was a child of God first and foremost, that that was the most important thing about me. Therefore, I can remember, so clearly, in my early teens, making a conscious decision, that I would ensure that being a child of God would form how I responded to all the challenges which came with the epilepsy, and that I wanted the epilepsy to teach me more of how to follow Jesus. It has been a long journey.
I was ordained in my early 30’s but before I could get there, I had to go through a selection process in a church where not only were they debating whether women could be priests, but there was still a prohibition on people with epilepsy. My bishop, Richard Harries, was phenomenally supportive of my ministry, and challenged this ruling, getting it changed. I still needed, however, to go through a thorough and intrusive additional medical, before I could go to a panel.
I have loved being in ordained ministry, it is what God made me for. I have always been open about the challenges I face, and also those which those working with me will face. Perhaps one of the biggest ones is that epilepsy is invisible and so people forget that it is always there, lurking in the background, that I constantly have to be aware of it, and that it could affect me at any time.
This means that those around me will regularly not understand the impact my epilepsy, and/or the medication I am on may be having on what they are seeing and experiencing.
The medication has multiple side effects, including slowing down my brain function. I don’t think as fast as I would were I not dampened down by the drugs. Most of the time, this is OK. I have a pretty high capacity even when medicated, but it is really frustrating when you sit at your desk searching in your brain for something that you know is there, and you just can’t find it. I have to write everything down, everything I need to do, everything I have promised to do. There is no guarantee that my brain will retain it. Needless to say, in ministry this is complicated as things can be fast moving, with new things cropping up constantly and the context constantly changing. It takes real discipline to manage this.
If you are epileptic, you really need to sleep. I find that the more tired I get the more my epilepsy affects my capacities – especially thinking. When I am overtired, I get a form of aphasia – I lose words, I try to have a conversation, and I know the word I want is in my head but I just can’t find it. I have to be even stricter than others around time off, holidays and rest. Similarly, I can really struggle to think clearly when tired, brain fog is something I navigate regularly. If I have had a bad night’s sleep, my brain just doesn’t function properly, I can’t follow a chain of thought as effectively as normal. I recently had an interview after an unusually poor night’s sleep and found it really hard to concentrate, following the stream of the questions, the stream of thought.
Extreme tiredness is also an indicator of risk of Sudden Unexpected Death in Epilepsy (SUDEP).
Alongside this there is the need to avoid too much alcohol, which is also a risk factor – a bit of a problem when consuming the communion wine! I constantly have to remind whoever is setting up for Communion, not to put too much in the chalice. And I have lost track of the number of times I have explained why I can’t drink with parishioners in the pub!
Although, because I have been free of fits for over a year, I would be allowed a driving licence, I don’t drive. My medication slows down my reactions to such an extent that I wouldn’t take the risk of being responsible for several tonnes of metal going at 70 mph. This clearly has implications for the places I can work and the jobs I can do. Anywhere without good public transport or where cycling is not easy is just not an option for me. London, where I am now, works really well, as did Oxford and Bristol. But I am aware that I have to think really carefully before applying for jobs.
For a long time, absence seizures were the hardest to control and I would regularly find that I would just ‘disappear’ – or what my children called ‘going to Zog’. The strange thing about these (like tonic-clonic seizures) is that you have no idea that they have happened., It can happen in the middle of a conversation, you can be speaking, stop then start again, up to a minute later, exactly where you left off, with no idea that you left everyone hanging. For those who don’t understand what is happening, that can be quite unsettling, as the epileptic seems to just ‘disappear’ entirely, while the seizure is happening. I have once or twice been vaguely aware of people speaking about me during such a seizure, but unable to claw my way back to consciousness.
Finally, alongside all of these effects of the epilepsy and medication, there are also the impacts when the doctors decide that they need to change my drugs. I have never yet had this happen without it impacting my life and ministry. Once I ended up having to take six months off work as they transitioned me between drugs. Another time, I nearly ended up with serious liver failure, because of a reaction to the new drugs they had put me on. My drugs have consistently caused weight gain and seriously impacted other aspects of my health. But – and here’s the thing – without the medication I would not have been able to be in ministry at all. Without it, I would almost certainly not have had the full and fulfilling life I have had. 100 years ago, I would have been shut up in an institution. I am so very grateful to God for all that I have been given, for the gifts of life lived to the full, the woman I am, made in the image of God, even in this unusual way, with a brain which doesn’t always behave.
