The Reality of a Broken Brain
For years I’ve described myself as having a broken brain. Some people have taken umbrage with it however I see it as a true thing — I have epilepsy and depression and as such have medical proof that my brain doesn’t function correctly. Something that doesn’t work properly is therefore is broken, simple as that. There is a solid connection between the two conditions which is why I chose to list them side by side, one can (and often does) adversely affect the other and make one or both conditions worse at any given time. It’s in large part down to brain chemistry as well as external factors.
I’m not a neurologist and my aim here isn’t to teach you the science and medical terminology, that information is out there online, easily accessible to anyone who can use Google. My aim is to put a personal touch on it, especially as I’m having some problems at the moment and people have been asking why I’m not online much. There are a few reasons for that, but mostly I’m just tired and being online still requires thinking. My brain hurts and I’m not a glutton for punishment enough to want to cause myself more pain, physical or otherwise!
I made a couple of posts on social media on International Epilepsy Awareness Day earlier this year (26th of March) giving some examples of what it can be like overall, though different people experience slightly different things, for example my symptoms, triggers and auras may differ from the next person. There are things that people don’t automatically think of as being part of living with the condition which I’d like to raise awareness of, but before I do, I feel like I should say that I consider myself to be one of the lucky ones. My epilepsy is under control 90% of the time, I know my limits and triggers and I live my life with epilepsy as a part of it — there are some out there who aren’t as lucky.
If you ask the average person in the street what comes to mind when you hear epilepsy, you’re guaranteed to get a reply of “seizures/fits”, with the person having a picture in their mind of someone unconscious on the ground, foaming at the mouth with jerking limbs, right? This is obviously true for some, but what does it mean for that person?
I found this picture a few years ago and reading it made me so emotional, anxious and also grateful because it’s so accurate. I’m not ashamed to admit that it made me cry, those feelings stemming from my own memories and experiences plus those from other people I know with the condition. Now that may sound silly to some, but like with any condition, unless you have some insight it can be difficult to see it from someone else’s point of view and understand the impact it can have one someone’s life — here’s hoping I can give you a little food for thought.

How much of that did you think of as being obvious? I dare say the parts about body jerks and medication, but how about the rest of it?
Some of the the injuries/after effects that I have personally experienced over the years because of seizures (both before and after) are:
• Headaches, confusion and memory loss
• Temporary (partial) loss of speech and/or sight
• Dislocated shoulder, sprained wrist, fractured jaw
• Biting my tongue so deeply on one occasion that it had to be stitched up which was not only painful but fucking gross!
• Cuts and bruises from banging into things when still dizzy, or during a seizure where I stay conscious
• Burns and scalds from cooking/making hot drinks when not fully recovered — even when I felt like I was, but proven painfully wrong!
• Crawling to the bathroom immediately after coming around because my legs are too shaky to get there by walking — some people lose control of their bladder (or worse, bowels), I’m very thankful that’s not something I’ve experienced in my adult life
• The ache in your entire body meaning that sometimes something as simple as lifting a drink can feel like the world’s biggest task
• Not being able to have a relaxing bath to soothe aching muscles for fear that another seizure might happen — you can drown in an inch of water, so a bathfull doesn’t bare thinking about!
• The feeling of being a burden to the person/people who are looking after you because you know they can’t relax, so in turn neither can you
• The guilt you feel for worrying people despite it being out of your control
• The constant battle to stay awake and concentrate when you have to go to work no matter how shitty you feel, because eventually your employer will begin taking disciplinary action for your absence from work. The DDA only covers so much, essentially you’re still absent from the business and eventually they’ll take action despite assurances they won’t!
• Loss of earnings when you do miss work
• The embarrassment of waking up and seeing the scared look on people’s faces, when you yourself are scared, confused and disorientated
• Having to cancel plans last minute if you fall ill
• The sense of dread when the warning signs start happening and you know that a seizure is inevitable
• An overwhelming sensitivity to noise and light, such as being able to hear a clock ticking from the next room, or even the slightest ray of light shining into the room making your head feel like it’s about to explode
• The panic when you’re away from home and need to get back quickly to be in a familiar environment, knowing you’ll either soon be unconscious, or need to lie down and rest from a partial seizure
• The unfortunate knowledge that should you go dizzy and stagger in the street, many people around you won’t ask if you’re OK because the first thing they think of is that you’re drunk — this is only made worse if you’ve had even the smallest amount of alcohol because people smell it and don’t consider there to be another cause
• Weight gain/loss, depression and anxiety due to medication side effects
• The worry that you’ll be treated like something fragile, or a freak — I’ve lost count of how many times I’ve heard the words “I’m sorry” on telling someone I have epilepsy, like it’s the worst thing in the world
• Feeling like you’ve wasted your time off work by resting and doing as little as possible because it’s the only way you know you can get through the next few days without being ill.
I’m sure there’s probably more but that’s all that came to mind as I was typing. Remember earlier when I said I’m one of the lucky ones? Even with all of this, I still consider myself lucky because there are people out there who deal with this on a daily basis, and that, dear reader is frankly an absolutely shitty way to live. It’s no quality of life at all. The only time I had a real insight into what this might be like long terms is when I spent almost 4 months in this situation a few years back when I was going through a really rough time physically, mentally and with my seizures which weren’t being controlled by the meds so we had to change. Nothing with meds affecting the brain (for any condition) is simple, neither was this, especially when I had an allergic reaction to the meds they initially put me on making things worse and putting us back to square one all over again. For almost a month I was seizing every day, having to sleep a minimum of 14 hours a day and not able to leave the house, cook or bathe without someone around in case I collapsed. It was awful, and on a daily basis I felt like if I went to sleep and didn’t wake up, that would be OK.
Now I’m managed by two sets of regular meds, three when the need arises. It’s far from ideal, especially when you throw depression and the minefield that is anti-depressant meds into the mix — all of which carry potential side effects of seizures — but you learn to live with it because … well, what other choice is there? In my late teens and early 20s I’d have given a simple answer of end it all, but now, well I just refuse to let it control me. There are allowances I have to make, things I have to be careful of, such as not getting overtired (over long periods), try to keep stress levels down, not getting drunk (though merry is fine!), not doing things like have a bath or go to the gym when I’m not feeling 100%. All common sense, but things that can be a buzzkill, nevertheless.
Most people with epilepsy don’t want your sympathy, we want education and a wider understanding of the condition. Unlike conditions such as cancer, Parkinson’s disease or diabetes to name a few, epilepsy is rarely talked about, research is poorly funded and it can also be a killer. I encourage you to ask questions of people with the condition as well as those who also live with it as it affects partners, family and friends as well, not just the individual. Some people will always be embarrassed and not want to discuss it, and that’s fine for them, however like mental health conditions there’s still a massive stigma attached … and that can be changed with the right action!
Thank you for reading.
