Everything is exactly as it was, business as usual... Right?

Earlier this year I was diagnosed with Epilepsy. I have a small angioma, a cluster of blood vessels, that have formed in my brain. Lots of people have these, most have no idea they are there. Mine however is in an awkward place which seems to trigger some seizures. 

The Dr's and awesome epilepsy nurses are helping me to make some lifestyle changes to make it safer for me to keep being me so why do I find it so hard to admit to others that things are not as 'business as usual' as I would like? 

There are some practical changes I have had to make: 

Before the diagnosis a night in, home alone, would mean a nice relaxing bath with bubbles and candles. Now it can't mean that. The risk of having a seizure in the water is too high, so whilst I can still bath (fear not) it needs to be whilst someone is home and without a lock on the door. 

Easter Sunday I had a seizure in the kitchen so cooking has also required some adjustments I hadn't foreseen. Pans have to go at the back of the cooker. I am mindful about moving hot water, we have one of those water boiler machines that pours me one cup of water so I don't use the kettle when I am home alone.  

I travel a fair bit and I like travelling but I am no longer allowed to drive. Handing my licence back to the DVLA was one of the hardest steps on this journey. I have worked hard to carve out my independence having been a single teenage mum. So the freedom to get in a car that I own and drive away has always been liberating for me. But for the foreseeable future that has gone. Once I am seizure free for a year I can have my licence back so my car remains on my drive. Awaiting the magical day I can drive again. And I am working hard at taking the medication, managing my self (workload, rest, eating regularly) so that I have the best chance of this happening sooner rather than later. For now though I have a Freedom Pass (free tube and bus) and a Disabled Rail Card (1/3rd off my train fares), every little helps. Thankfully I live in London so public transport is the best here you can get! 

But all travel comes with seizure risks. As such I'm trialling a new app on a new watch that monitors my movements and heart rate. If it thinks I am having a seizure it alerts me and I have 60 seconds to either cancel it or send an immediate alert. If I don't do either of these things then after 60 seconds it sends the alert anyway. An alert then goes to my emergency contacts, this can be in the form of a text, or a phone call, or an email or all three. It tells the contact that my seizure alert has been activated and gives GPS co ordinates so they can either come to me or send help. Just a few days in this is taking some getting used to. I appreciate though that it helps my loved ones to know I am safe and if that means they get peace of mind then I'll keep going with it. The trial lasts for two weeks so I'll report back after that. 

Crossing the road has even changed. I am way more mindful to use crossings, particularly in central London. This way drivers are more expectant of pedestrians, well they should be at least. 

Staying away from home has been part of my rhythm for the last few years. Now I make more of an effort to make sure my loved ones know what my travel plans are, checking in with them along the way with text messages. Making sure I say goodnight and good morning so they are not left hanging. The new watch is supposed to help with that too as far too often my phone is in my bag so I don't appear to be rude but this can mean I don't check in at times when I should have. Again this is a difficult aspect to navigate as someone who is independent and has carved that out within my identity. 

Church life has shifted a bit in all this. It has to. Whilst I haven't had a seizure at church I am mindful that I am often in the building on my own (the app should help with this). I am also mindful that as the worship leader and preacher, should I have a seizure, others worship halts. With this in mind my tablet contains all the notes and prayers for some one to carry on around me. I appreciate this might seem odd but in all seriousness the best thing you can do is move anything that might be a danger and leave me to it. Carrying on with the service would detract attention away from me and thats perfectly fine with me!   

I.D has also shifted a bit, I have a medical alert on my bracelet and in the back of my clear phone case is a note that clearly says 'I have Epilepsy' inside the note is my in case of emergency contact, medication and how seizures affect me. Of course I have input my medical id into my phone too but I know in the first instance people often do not look here. This isn't because I am a massive risk. This is more because for those that don't know I have epilepsy a seizure is scary (don't get me wrong it is scary for those that do know me too) and strangers do not know what to do. The first instinct is to call 999 but this would be an absolute waste of resources for me. I could actually be in A&E before I could communicate that I have epilepsy and then before you know it £500 or NHS resources have been used only to send me home to sleep it off.  So for the sake of the NHS, which I love dearly this is a must. Even though I still feel odd with them visible.

Bigger questions I am asking myself are why do I feel a sense of uncomfortably? Well I'll be really honest in the world we don't handle difference very well. I know people who have been cautious about booking me for things like I have some contagious disease and need to be in isolation. I can understand why people might feel uneasy but as you can see from the above, I am a grown up who is taking responsibility to maintain a life. I can not and will not sit at home for fear I might have a seizure, most of the time I am not having them. So what a waste that would be. 

The other thing is my ministerial world comes with some complications. No point in denying that. 

Some people see sickness or illness as a punishment for some form of sin. It isn't but some people think it is. In addition some translations of the bible talk about seizures as a manifestation of a demonic possession. This is not the case either. As I have outlined above it is, for me, a result of an angioma. Most people quote the story in the gospels of the epileptic boy (Matthew 17:14–18Mark 9:14–29Luke 9:38–42). 

There are many reasons why someone might have epilepsy. In Matthew 4:23 - 25 we see Jesus journeying through out Galilee teaching in the church of the day, speaking good news to those he encountered and healing all sorts of sickness. In 4:24 it talks about how people brought their loved ones to Jesus, in this case Matthew lists epilepsy as a separate condition as 'various diseases and pains, demoniacs, epileptics and paralytics' (NRSV) so I hold firm to the reality that yep God could heal my Epilepsy. If that was their will, but they also have created Dr's and pharmacists and research teams who are now able to give me the gift of medication. My Dr is literally an angel, he has been brilliant at explaining, loving and helping me to find ways forward and all with gentleness and kindness. 

One day perhaps my angioma will leave, maybe it will grow. Either way God is still God and I am not seeking out 'healing ministry'. I believe in a God who hears the whispers of our hearts, already knows all about my epilepsy and still loves me and invites me into a wild adventure. There really is no need for you to tell God about it. 

Since all this though, I have also seen the power of God at work, in speaking about epilepsy with boldness, and not letting shame silence me, I have met others who also have epilepsy. Some of which have been struggling more than me to get their head round it, some who are not yet in a place to be proactive at trying to manage it as the Dr's and Nurses advise and some whose families feel a little like mine, constantly anxious of what could, might or might not happen every single second of the day. Together in our shared experience I believe Christ is present, speaking good news, reminding us that we are not alone, that shame is not a coat for us to wear and ultimately that with our epilepsy we are still fearfully and wonderfully made.  

Truth is everything is NOT exactly as it was. 

But it doesn't mean life stops. Life is an ever evolving state. As they say the only constant is change. 

Adventures await even if we have to adjust the plans and even if this means you have to join me when it's skinny dipping time!* 


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* Jokes as if you can skinny dip in the Thames! 

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