The first clue brushed past me so gently I couldn’t have recognised it.
We were sitting at the dining table at my brother inlaw’s house in England. It had been 8 years since we’d seen them. My husband Bob was telling them about the flight over and how we had bought a digital game, a DSI, for our youngest child to play with to help get us through the 30 hours of travel. “It worked quite well, didn’t it?” he said to me. “What game is that?” I replied. He said it all again. I denied any knowledge of such a game. It must have been something he got her that I didn’t know about. I dismissed the discussion and we all moved on. Bob gave me an odd look.
Later that evening he asked me what all that nonsense with the DSI had been about. I replied in total agreement with him. What had that been about? In retrospect, of course I knew about the game. It was just, at that time, in that conversation, I really didn’t know what he had been talking about. I did now, so we both shrugged it off as some weird anomaly of memory.
The next episode was more extreme, yet somehow still dismissible after the fact. We were still in England and I was driving to the supermarket. I came to the sudden realisation that I had no idea where I was, or where I was going. I pulled over to the side of the road and sat there asking myself these questions. First off, what country was I in? I really didn’t know, I had a feeling that I had seen Granny recently so perhaps that meant we were in England? Where was I going? I had no idea on that one. Whose car is this? Nope, nothing. Day of the week? Time? This road? All of it, I had nothing. As I sat there concentrating, trying to remember, it slowly came back to me, bit by bit until it was clear again. Oh well that’s alright then, I turned the car around and headed to the supermarket as I had intended.
Looking back, I find it remarkable that I just accepted the recovery of my memory and carried on. But at the time, it seemed the most natural thing in the world to just think, OK then now I know, and carry on with my day.
The next time was different, and more concerning. We were out shopping with friends who we had also missed so much for the past 8 years. Standing in a bookshop with one of them, as Bob and the other stood waiting for us outside, I simply lost consciousness. I fell straight back, like a tree, my head banging loudly as it hit the floor. I came to with my friend’s face hovering above mine, calling my name and also calling out to Bob. What happened? You just went over. Well I’m fine now, let’s get going. So we left the shop and headed home. I can tell you now, from bitter experience, the back of the head is extremely tough. Comparatively, those type of falls barely hurt, at least not for long.
Our family trip over all too quickly, we headed home. We didn’t discuss my weirdness, not that I recall anyway. Soon we were back to real life, our holiday becoming a distant memory as holidays always do, far too quickly. Then it started happening again. Apparently they are known as absence seizures, where you are fully aware and awake, but something has just disappeared from your memory. In my case it was usually where I was. It was frightening not knowing where you were. Not just lost, but literally not knowing what country you were in, what city, where you were headed or why. I remember walking to school to meet the kids when one of these episodes happened. I stopped and tried so hard to think where I was. I looked at my feet and thought that as they were pointed this way, if I just kept going maybe something would start to look familiar. I made it to the next street sign, and it meant nothing to me. Still absolutely no idea.
Sometimes however it was specific items that disappeared. I walked into my son’s bedroom one day and wondered where that set of drawers had come from. I thought they were lovely, I wonder what he keeps in there, and looked through each drawer to see. So odd, I had bought and even painted those very drawers. I put his clean laundry away in them every day. As more absence seizures became a presence in my life, I decided it was time to talk to a Doctor. I saw my GP and tried to explain what had happened to me. He said first step was blood tests, and when they came
back showing I was extremely low in iron, things were dismissed as we dealt with that issue instead. The very idea that severely low iron levels could cause such symptoms seems ridiculous now, but back then I just trusted doctors. I have learnt to question everything now.
In the meantime, as we all talked at home about our UK trip, I realised that I had big holes in my memory. I didn’t remember half of what my family were talking about. I had forgotten which friends we had managed to catch up with in England. This was too much, we had saved for 8 years for that holiday and now I didn’t even remember it.
I saw my GP again to tell him about these holes in my memory. He looked at me oddly and said that I had told him this last time. He clearly wasn’t distinguishing between the two memory issues. So I saw another GP. This one immediately said they sound like a type of seizure, and that I needed an MRI. There it was, we were off on this awful journey.
In some way I still wasn’t thinking this was a big thing. I’d get the MRI, and we’d just fix me up. I drove to the medical centre, had the MRI and then went to finish some shopping. As I was about to head home, I had a call from the medical centre, could I come back so they could run another MRI (a somehow different one). Even I was questioning by now. I went back and lay in the machine again. Afterwards the radiologist spoke with me. He said that they had found something in my brain. Just a little thing, “like a tiny beauty spot” he said. He actually said that. I can only imagine he meant it to be comforting rather than patronising.
The process continued. I was referred to a neurologist. This was to be the beginning of a long, and still ongoing relationship.
As I sat with the Doctor, she explained to me that what they had found in my brain was a “cavernous angioma” – a small tangle of tiny blood vessels that had formed a ball. This turned out to be completely incorrect, but it was the diagnosis we had at the time and the one we all worked with. She said they are not uncommon, in many cases they are only discovered after death (unrelated death) as more often than not they caused no symptoms,and therefore did no harm at all. Mine could well have been sitting there quietly my whole life. But now, it would appear I was just unlucky that it had started causing these symptoms. Unlucky indeed.
The one point she made that sticks so strongly with me, is that she could absolutely guarantee that now that these seizures had started, they would only get worse without treatment. That diagnosis, the key one, was bang on.
She talked me through the different types of anti-seizure medications there were. And there are a lot. The basic principle was, we try one and see if it works. If it doesn’t we try another, and another, and another until something does work. Spoiler, nothing did.
Then she dropped the big one. I would no longer be able to drive. It was simply too dangerous. I tried to argue this one; the episode I had while driving was OK, I just pulled over to the side of the road. Quite rightly of course, she pointed out that every episode could be different and I may not have that chance next time. She would allow me to drive home from the hospital that day, but then it was over. No more.
This one was a life changer, I have three kids who need to get to and from school, to and from after school activities, friends houses, etc. How would we cope? Turns out, you just do. It’s that simple, you do because you have to.
Oddly, although it was the thing that hit me hardest on the day, stopping driving was something I adjusted to quite quickly. I think because it was so absolute. There was no “oh it’s just down the road, it’ll be fine”. It was total, I couldn’t even move the car in the driveway. I simply could never be in that drivers seat at all. I haven’t driven since that day.
It was also the thing that at first affected my family the most. The kids had to drop their after school activities (swimming, gymnastics etc), as I just couldn’t get them there. I juggled between friends and taxis to get them home from school each day. It would have been a long walk for the little ones, with some very dodgy roads to cross, so that was not yet an option. As the years went by, it became the option of course.
Quite quickly over the next few months, my ‘absence seizures’ at first alternated with, and then were completely replaced by ‘blackouts’. I would drop to the floor in an instant. A complete loss of consciousness (LOC). This is how we would live for the next two years.
Clearly those first medications weren’t helping. We added in another one. Something else you learn in this process. Because from a medical viewpoint, you only want to change one element at a time, each time you try a new medication, it is added to that old one. It does not replace it. So my daily intake of tablets grew and grew.
My Neurologist asked that I keep a diary of all the episodes; time, duration, recovery. As the holes in my memory grew, this turned out to be invaluable.
An example from my diary, from about 4 months after diagnosis:
(date) LOC in kitchen making a cup of tea. Dropped to the floor, came round quite quickly but was very confused. Took a while for me to remember why it had happened. Then later I had no memory of the 10 min or so after the episode.
I broke my two favourite mugs in that fall.
As you can imagine, injuries became a part of my life. I had numerous black eyes, fat lips, cuts and bruises, even a broken nose once. But especially, and frequently, lumps on the head. My poor husband was given some rather dark looks when we were out together. I became an expert on bangs to the head.When you lose consciousness, the head – being the heaviest part of your body – tends to hit the floor with the most force. Back of the head; not too bad. Side of the temple was the worst. Painful spot, and the pain continues as there are muscles there that you use regularly. Even for eating.
For me, the worst part was not the fall, but the coming round and having no idea what had happened or why. I would often ask if this had happened before? Was there something wrong? Each time I was told the answer, it was like hearing about this thing in my brain for the first time. I had to process it all again. Frequently I didn’t believe what I was hearing. Something in my brain? Don’t be ridiculous! It was traumatic each time I learned it anew. Each time I had to come to terms with the restrictions in my life I was dealing with.
For everyone else however, it was the other way around. My family were the ones who saw me fall. Who had to pick me up and get ice packs for my head. For them, the fall and resulting injury was of course the worst part. They all started living on tenterhooks. They would jump in alarm and come running at any loud noise. I always felt that it was worse for them than for me. They had to see me fall, again and again. They were ones who had to look at me each day and try not to see the black eye or fat lip. They had to tell me once more why I was falling like this, and see my distress as I listened. For some reason, it was my sweet middle child who happened to see the most of them. The most sensitive one, that always seemed so unfair. And of course my husband lived in fear each time he (or I) left the house.
But despite it all life went on. There were chores to be done, children to be looked after. Day to day, you simply had to carry on. I remember being down at the mall one day, and I had stopped for a coffee. A friend’s husband walked past and we waved hello. When I saw that friend a few days later, she told me he had come home and said to her that he was amazed I had been in
the mall just acting normally. If it were him (or her apparently), they would be sitting in an emergency room refusing to leave without answers!
In truth we had answers. We knew what the process was, it simply wasn’t working yet. We had not found the magic medication we needed. Each time we tried something new we had to give it time to work. I saw my Neurologist regularly and this was always the advice. Wait and see. My life became a montage of waiting, falling, seeing. Change meds and repeat.
I lived every day with the guilt of what I was putting my family through. One time at home I tried to whack a fly with a cushion as I sat alone in the living room. The sound of that cushion hitting the sofa brought my entire family running. I’m so sorry I scared you, it was just a fly, I didn’t think. I felt terrible at the panic I had caused, again. Another time after an LOC when I came to, I didn’t recognise my cousin as she was trying to help me. I couldn’t apologise enough later, what an awful thing for someone so loved. The guilt weighed on me constantly.
I had a great deal of support from both my family and some wonderful friends. Some offered regular rides home from school for my kids. One dear friend, who ran her own business, managed her diary so that she would always have one morning a week free to run me around. A quick dash to the hardware store or anywhere that was difficult without a car, then some time to chat and maybe have a coffee together. Another amazing friend, who, when things started getting worse, insisted on paying for a cleaner and some personal treats for me to take the pressure off. To all of these and so many more, I will be eternally grateful.
Whenever I was out and about with friends, they were always slightly on edge. What should I do if you black out? Nothing, assuming no serious injury, just wait for me to come back so you can explain to me what happened. Everyone thinks they will be able to catch you when you fall. That you’ll be fine as long as you’re with me, I’ll catch you. I have news. You won’t. Ever. The LOC happens so suddenly I am on the floor by the time you’ve turned around. Even later, when Bob used to walk with his arm around me, tensed and ready, he would still struggle to prevent me hitting the floor. It was just a more gentle landing.
If I had a bath, Bob would insist on me having a little bell in there that I had to jingle every few minutes so he knew I was still OK. I laughingly told my Neurologist about this one day, suggesting that surely the shock of water over my head would bring me round anyway. It wouldn’t, she said. I stopped taking baths.
Eventually my Neurologist decided we needed to know more about the seizures. In particular why they were causing me to black out. So she booked me for a week in hospital to try and capture a seizure for analysis. I was to have electrodes attached all over my scalp and be monitored 24/7. At the same time, my meds would be drastically reduced in the hope that a seizure would be triggered.
Hmm, a week away from home, tethered to a bed. That would take some organisation at home, and some patience at the hospital. I set to work on logistics at home first. An after-school carer for the kids, who could also do their meals, and keep the household running. Advance planning and shopping for meals. Then I created a ‘Household Notes’ document for Bob. This detailed the minutiae of our lives. The bank account details, the mortgage payments, the bill payments, and direct debits etc. As well as telling him where the wills and important documents were. Just in case.
Not surprisingly the majority of the week in hospital was rather dreary, with very little to tell. The tether attaching all my scalp electrodes to the machine was just long enough so that I could make it to the bathroom on one side of the room, and a small kitchenette on the other. In those two places only, I was out of camera range. Unfortunately the one blackout I had in hospital, was in the kitchenette. So the fall was not actually seen, but it was captured through the electrodes. This brought a new piece of information. Turns out, the seizure was relatively normal in itself, the problem was that the seizure was causing my heart to stop. Just completely stop, assystole is the medical term. That was why I dropped. A stopped heart will do that to you.
This made everything look a bit more serious than it had previously. There may come a time when my heart didn’t just re-start upon hitting the floor. Everything stepped up. It was time to start looking at the surgical option. Meetings were arranged with a Neurosurgeon, and the process of planning a potential surgery began. In the meantime we went back to our lives.
As the blackouts became more frequent, they also developed a pattern. It would seem that mornings were prime time. The chances of me making it from my bed into the kitchen each morning grew smaller every day. In the end, we put strict protocols in place. I would prepare everything for the next morning the evening before. In the morning, Bob would support me all the way to the sofa and I would shout instructions to the kids from my perch. Finish your breakfast, get your teeth cleaned! School bags ready.
Then Bob would drop them off at school and head to work. I was under strict instructions to stay put until at least 10am, then I could get on with my day. In general, all this worked quite well. Oh, he missed me once or twice, but more often he could at least guide my fall away from the glass coffee table.
Needless to say I still blacked out, but whilst sitting on a sofa instead of standing in a kitchen. Much less painful. Except for the time I did it whilst sitting cross legged holding a cup of tea. Nasty burns to the inner thighs – not pleasant. I was more careful with my sofa positioning, and my tea after that.
Eventually a date and a plan for surgery was agreed. This one would take a bit more logistical planning. I would be in hospital for at least a week, and in recovery for any number of weeks. It was time to bring in the big guns. Favourite Aunty and Uncle from England came over for a month. I am still in awe of the kindness and support they provided. An entire month of putting their lives on hold for the sake of our children. What more could anyone ask from family?
This also meant that rather than worrying about what was happening to their mother, the children were all kept busy and happy.
As with the last diagnostic visit, the time in hospital was for me rather dreary and uninteresting. However for my friends and family, this was the worst of times. Brain surgery is serious stuff. In terms of surgical interventions, this was the big one. I had to not think about that and just focus on the little things, pain management, being woken by surgical residents at stupid hours of the morning. But for my family, that morning when I went under the knife, time stood still.
Everyone waited for that update from the surgeons. That promise fulfilled. That it was over and I had come round OK, without any obvious complications. Eventually it came. The lead surgeon was extremely pleased with the procedure. Almost euphoric in fact, he was so pleased with himself he was positively bragging. They were quite certain they had removed the entire tumour and the area was clear.
The one slight fly in the ointment; it wasn’t a cavernous angioma at all. In fact they weren’t sure quite what it was. After the hospital failed to identify it definitively, samples were sent to University hospitals in California and Australia. Eventually an agreement was reached, it was a ganglioglioma. Effectively a low-grade cancerous tumour. So low grade in fact, that along with the surgeon’s certainty of complete removal, no further treatment would be necessary.
It seemed that we were on the other side of it all. That perhaps it would be all clear sailing from here. As these things tend to go however, although we were most certainly over the worst of it, clear sailing was somewhat overstating it.
Sooner than we expected, I was allowed home from hospital. I had been in barely a week. We had been warned about what I imagine were the usual after effects of brain surgery, pain – of course – tiredness, sensitivity to light, avoiding excessive stimuli such as crowds and loud noises. I came home expecting to be in bed sleeping a lot. I soon found however, that lying down was really not the most comfortable position. I had a large wound on the back of my head and fluid would gather and create pressure if I lay down for too long. Instead, I found myself back in my familiar pre surgery position perched on the sofa where I could once more watch the household activity.
We were all surprised by how quick the recovery was. After only a week or two the pain had all but gone, I had normal mobility, and the tiredness was quite manageable.
I had three clear months until my brain let me down again. I didn’t black out, but went back to the absence seizures I had started with back in the UK. Over the next three months I had six more. Each time, I once more had to be told about the entire ordeal, and I once more didn’t really believe it. Only now I just had to feel the back of my head for the circular hole of skullbone and the staples holding it in place to be convinced. We were all happy to put it down to the residual effects of surgery at this point. You know, swelling and all that, and slowly, very slowly, things began to improve. The gaps between episodes grew, and our optimism grew with them.
It has not left me unaffected. My memory is completely unreliable. Often when friends ask if I have seen a certain movie for example, I will look to Bob to check the answer, as I have no idea. I have found that I can go through my Kindle and re-read many of the books on there, as I have no recollection of doing it the first time round. So there’s a nice little benefit. Sometimes it concerns me that I may have forgotten more important things. Milestones that my children have hit, experiences enjoyed but now gone. Nothing to be done though.
A year after the surgery, I went back to the hospital for a follow up MRI scan. The results were at first ambiguous. There was certainly something there, in my brain again, but there was some discussion as to whether it was scar tissue from the surgery, or a part of the tumour that had either been missed or had returned. The radiologists argued amongst themselves. Eventually it was agreed that it was a small residual portion of the ganglioglioma. The surgeon and I discussed this, and I pointed out that it really didn’t matter which it was as long as wasn’t falling down anymore, right? Agreement all round, and another follow up MRI to come a further year down the track. This is where we are now.
I suspect that once an event like this takes a hold of your life, it never really lets go. There will always be further checks. Possible medication changes. A certain amount of risk lives with you forever. Much like any life.
I have been allowed to slowly – oh so slowly – reduce my medications over the last year. I am now only on two, and likely to remain so for the rest of my life. A small price to pay for the opportunity to live that life I think. Soon I may even be allowed to drive again. To gain back a level of independence I had lost, and thought I may have lost forever. I have a while to wait on that one, but I remain hopeful.
After all, that is the best thing we are all left with in the aftermath. Hope. I hope to take this opportunity to make a change in direction for my career. My family hope that all of this is behind us. Smaller goals matter; we hope to have a nice Christmas together. Bob and I hope our kids will pass their exams this year. There is a lot to hope for, and a joy in being able to embrace that hope. And if another clue ever brushes by me, I will be ready for it, and we’ll fight once more.