The serious brain malfunction began when I was 56. Not just, "Oh, I'm having a bad day", but a "Oh, I can't read English for 3 hours" day. I began telling my friends, family and doctors that it felt as though my brain was broken. Yes. That seemed right. Because up until that year I'd been a high-energy, multi-tasking little success story who'd been a published author, an award winning historian, and a prize-winning playwright who loved the challenges each day brought me.
Their response? They just told me that it was natural. I was depressed. "You just lost your mother, your son moved to the west coast, you've had to move from the beautiful home you spent 32 years restoring (another story, entirely) , and you had to shut down your highly successful business in order to pack things up.” Well, I had an inkling our son would move soon, but my mother’s death was quite sudden, and I had no idea that, after she passed, we would suddenly have to move. Just never occurred to us to plan for that.
Yes. All worthy of severe depression. But could depression have this much power over my ability to simply think? I’m a writer and a producer, but I suddenly had days I could not READ a sentence, let alone write one. And at other times I couldn’t speak clearly.
Could depression do all of that? Or was I going crazy. Could crazy do this to a brain? I kept trying to tell myself "Brain depressed". And my mind kept saying, "Brain broken".
And then there was the morning my husband found me hunched over my computer - just where he'd left me the night before.
“Have you been there all night?!”
“What are you doing?!?”
“I can’t get these sentences right.”
I had been re-editing the same two sentences all night long.
So I went to the doctors again, and they said, "Nothing more than depression. Would you like anti-depression medicine?" "No," I said and when back home to things to do, boxes to pack, a house to sell, and a life to move forward any way I could.
Then one day I began to cry. I began to cry hysterically and couldn't stop myself. I could not think. I was terrified. My husband, Chuck, was driving to work, and I called him.
I said "Help me, please. Don’t make me hurt myself to prove to you I need help!” (Let’s just pause and let me make this clear: I was not suicidal. I was desperate).
My brain – that thing other people once called clever, well-organized, and highly creative – simply wasn't working anymore. I couldn't trust it, and neither could anyone else.
And how do you explain what you're dealing with when the correct words won’t come to you anymore?
Depressed? Well, yeah. You’d be depressed, too, if your thoughts could no longer walked in a straight line.
Thank heaven Chuck took me at my word, turned around and came home to drive me to Urgent Care. There I "spoke" to a psychiatrist who suggested I go to the hospital for further study.
"Yes," I said. "I will do anything to try to understand what’s happening to me"
And they sent me to the Pysch Ward of the nearby hospital.
I remember the trauma of being rolled into that ward in a wheelchair and riding passed people whose eyes stared straight ahead at nothing and whose feet shuffled aimlessly. These people were zombies.
This was where I was coming to have someone look at my brain and help me? These people didn’t appear to be having their brains evaluated and fixed. They looked like they were having their brains permanently fixed in one position.
And is this what I would become?
The rest of the day is a vague memory that ended in the afternoon when my husband came to see me. Right away I told him, “I don’t belong here. I know I don't belong here. I want to go home. Right now.”
My poor husband.
But because I’d signed in voluntarily, I was able to sign myself out, and we went home.
After that, I made myself be calmer. I would do whatever it took to avoid going back to the place where the zombies walked.
There was one more long, terrifying year of coping with a broken brain and with doctors who constantly swept it all aside before I finally had the Grand Mal seizures.
I’d been prepping for a colonoscopy – dreaded things – with a 2-day liquid diet that apparently depleted whatever I had left that was fighting this thing. I went to bed the night before with the colonoscopy scheduled in the early morning.
When I was starting to fall asleep, I remember seeing something like death walking toward me, ready to take me with him. And I felt a strange calm. Death would finally mean peace.
I did not wake my husband and tell him any of this. What would be the point? There was nothing he or I could do.
Instead I told myself, I’ll go for the procedure in the morning, and then I’ll feel better and perhaps this will pass. But if death takes me tonight, that's all right, too.
I can only remember one thing about that night: violently throwing off my covers and jamming my husband in the back with my hand – something I’d never done before and never done since. I apologized. He mumbled it was alright.
And apparently later in the night, I swung violently out of bed with my first Grand Mal Seizure. The thump of my fall woke my husband, and he called the rescue squad. I had one more seizure at home and the last one at the hospital before they finally did an MRI to try to evaluate my brain - my broken little brain.
When I woke up late the next morning - flat out in a hospital bed - I assumed I'd had the colonoscopy. There were people – male nurses - lifting me up and removing a bedpan from under me, while one was saying, “I hope you don’t mind the lack of privacy". My cheerful, highly medicated self replied, “No problem! You’ve all already seen everything!” And as the bedpan came away I added, “Now that’s service!”.
But they didn’t laugh.
See, I didn't remember anything about the seizures. I decided these nurses were the ones who’d done my colonoscopy, and that the medication caused me to forget getting there that morning. But I did think it was strange that I couldn’t remember anything about getting there.
Once they left the room, my husband came in and explained. He told me how he was wakened by the sound of my fall. Described my first Grand Mal to me, and my second as the ambulance came to get me (But he was kind and did not describe them in great detail).
And, you know what? The first thing I felt was relief. My broken brain had finally given a huge, very tangible, very measurable sign of its brokenness. I could finally shout at my doctors, “I TOLD YOU MY BRAIN WAS BROKEN!"
And, yes, the seizures did wake up my doctors. I never had to hear the words "You're just depressed" again. Instead they cried as one, “AH! She really is physically sick! Look, here is something we can treat! Maybe even diagnose correctly now!”
And I was so relieved. I finally knew what was happening. Still didn’t know why, but… that would come in time.
Oh, and it did take time - a long time. But the doctors finally figured it out: first they said it was because of my autoimmune disease: Antiphospholipid Syndrome. It has a tendency to cause blood clots (the thing that made my having children so difficult as it created blood-clotting in the placentas). But they couldn't find any blood clots in me. Hmmm....
And, sad to say, my first Neurologist was an idiot who put me on the standard anti-seizure medicine Keppra, gave me a 1-hour EEG 30 days after my first Grand Mals, and said, "You like fine!" So he took me off the Keppra, and I woke up in the hospital 2 days later after another Grand Mal.
I was put back on Keppra as we went looking for a Neurologist who knew something - someone who focused on Epilepsy. We found a brilliant Doctor who's an Epileptologist, and I got back to most of a life. Brain fog still came and went, but nothing like it was during those 2 years.
My brain no longer felt broken, more like... sprained. I hobbled as I walked about.
But over time I learned Keppra can give some of us hideous side effects: mood swings that'll have you crying one minute and screaming the next. And since my husband had already gone through enough hell - after I put a serious dent in our dishwasher - I asked my Neurologist to switch my meds to something less damaging. I've been on Lamactil (Vimpat) 7 years. It gives me headaches, awful rashes and it's still possible for me to have Focal Seizures, but I'll live.
And my new doctor began to focus on the fact that I have Hyponatremia – chronic low salt. Truth is, if anyone's salt becomes severely low - any one in the world - they can have a seizure. Acceptable low salt level is 134, but my salt was 122 the night I first seized and 125 after my next big seizure a month later. I'm 65, now, and still trying to get the right balance between my low salt, water, and the anti-seizure medicatoin (which can damage me if I don’t have enough water). My GP finally said "Try Gatorade instead of water", and that was doing a nice job... until I had a Focal Seizure. We switched to Liquid IV instead of water, which was fine but bloody expensive. Now I just have water and then one bottle of Liquid IV a day
I still have memory issues, but the misfires are due partly to anti-seizure med and mostly due to flat out having Epilepsy.
Seizures do damage and some of it is permanent. My friends try to be nice. When I can’t recall a certain word, flip words or suddenly can’t remember the name of someone I’ve known 30 years, my friends will say, “Oh, that happens to all of us!”, I just smile. I’d rather have them chalk it up to something they can relate to and what’s the point of my saying something snappy like, “Really? Ever forgotten your own birth date?”
The bad news is I have second trigger for seizures: stress. I don't have Grand Mals. I have these smaller things called Focal Seizures and they are purely due to Epilepsy. Unlike Grand Mals, focals do not cause physical jerks. More like having your mind just up and walk away from your brain.
If I can feel it coming on and think clearly enough, I'll take an Ativan (A peaceful little drug).
But one time I felt my brain disassociate and got to a chair just before I blacked out. When my husband came home, apparently I began talking to him (I don't remember any of this). I made no sense. Eventually I came back to full consciousness, and we set up an appointment to see my Neurologist. He explained to us that stress - pure stress - can cause seizures, and I needed to change my lifestyle. I'd been stressed out doing Board work for a nonprofit board, so I pulled myself away.
Oh, and in my state - Virginia - you can't drive a car for 6 months (for obvious reasons). So that was another reason to stop what I was doing. But I kept my production company. I wasn't ready to give it up. I loved it too much.
Another small focal showed up the day I woke up and my husband and I began to make the bed. I would begin a sentence. The first half would make sense, but I could not make the second half make sense. The words I went looking for simply weren't there for me. They were replaced by nonsense. But this was a tiny incident past, and I didn't bring it up to the Neurologist. Next focal seizure was a big one, and for that I was once more completely conscious. And it scared the hell out of me.
Here's my summary of the experience:
September 10, 2021 –
Been a hard week. I contracted a stomach virus and had diarrhea for 3 days. Then, just as I was getting over it, I had a Focal Seizure. Hadn’t had a seizure in a year and a half!
Chuck and I had been watching “The Guernsey Literary and Potato Peel Pie Society”, and I fell asleep or lost consciousness for a bit. Then I heard Chuck ask me a question about the scene we’d just watched, and I wanted to answer him.
Here’s how it went (From Chuck’s MP4 video). Apparently, this was about half-way into the conversation:
I said, "That was part of the original thing about the area" when I was trying to say, This is the kind of thing that happened during World War II.
"She’s the woman who’s out of person is saying bad things about the stuff," but I meant, Elizabeth is tending to the young woman dying and showing how horrible things were - to have a young woman die of wounds while having a baby.
"But we don’t know what she’s basing it on" (We don’t know if it’s a true story). "She was talking to us to… she was important on this" (The woman who died was important to the story, but – and I never got this part out - she was not Elizabeth, the lead, so we don’t know her name).
Then Chuck began to stop me and tell me I sounded like I had the other time I wasn’t making sense.
"What are you talking about, Charlie?" At that point, I couldn’t remember what a Focal Seizure was or that I was capable of having one.
Chuck explained I’d been talking around and around in circles.
"Well, I got very sleepy and I went out of sleep" (I was trying to explain say I’d just been sleepy, and I spoke to you right as I was coming awake).
Then he reminded me about the last seizure I’d had that was like this and asked me if I felt okay.
"I… don’t… I, I think I am." (I actually wanted to say No)
And this is where the video stops. Soon after, I became fully conscious and able to speak clearly, again.
The next day I took this event apart. Here goes:
During the last part of this seizure – probably around the time I realized Chuck was filming me - I knew I was trying to find the words and couldn’t reach them. I would begin a sentence and hear that the words coming out of my mouth were not the ones I had in my head.
I was having a Focal Seizure, where the brain waves that connect the part of the brain that stores words with the part of the brain that puts sentences together wasn’t working (as explained by my Neurologist). The bridge was broken. When you have a seizure, it shows up on an EEG via brain waves that go crazy. No peace. No way to connect.
And during the seizure, I eventually realized something wasn’t working and that it was that condition I had. I wanted to remember the name of that condition but couldn’t think of it.
Around this time – as I was coming into consciousness - I also became terrified, because I had no idea when or if the disconnect would end.
At that point, I’d only had one Focal before, and I couldn’t remember much about it other than the speech problem. I started worrying what would happen if my ability to speak never returned. Was my life over? Would I need to be put in full-time care, because I could no longer communicate?
In the video, it’s obvious I’m scared. My brows are furrowed in confusion. My eyes would go wide. At one point I flail my arms a bit. At another time, I curl my hands. I think I was seeing if these movements would help me find the words. They didn’t. But, when I did the curl, I remember thinking something along the lines of, “Okay, I can still make my hand do this if I want! I can control it!”
When I began to remember more about my problem, it occurred to me I had two problems; two names? But I couldn’t ask Chuck ‘cause I couldn’t make sense, and I thought maybe I could work this out myself. Maybe I could look them up somehow. Maybe the act of typing would bring it to mind (Hey, it’s happened before when I’m at a loss for words!). So I looked at my iPad and knew I could do research there – somewhere in that blank top line (I must have had Google up).
But I didn’t even know how to start typing. And my ability to research was wiped clean. My brain was empty.
But I kept “coming to” (The neurons between word storage and sentence generation began to calm down and reconnect).
Finally occurred to me one of my conditions was called APS. I was able to type APS on the top line of the iPad and found it meant Anti-phospholipid Syndrome. Okay. But I knew that wasn’t why I was having trouble speaking. Then I remembered seizures – Oh, right. I have Epilepsy. Okay. Got it. Got them both, now. And I’ve had another Focal Seizure, and I’m coming out of it. I’ll be okay.
But all that took a long time to remember, damn it.
As an aside, while I was trying to answer Chuck, at some point I became aware he was videotaping me.
And that was... incredibly creepy. He was smiling slightly – like he was amused by my incoherence. And the film felt like an intrusion. But I did not tell him this. Looking back on it, I think his smile was a coping skill. I realize this is an awful lot to deal with…
I later appreciated having the video. Not that it’s going to change anything about my situation, but I do like knowing what I’m experiencing... and what Chuck’s experiencing (poor guy). And I liked figuring out how what I said related to what I tried to say. It was kind of a fun exercise. So, “Coming out of sleep” means “waking up”. Okay, that almost makes sense.
The weirdest thing was knowing exactly what I wanted to say, and having everything coming out of my mouth pure babble. That just wasn’t as clear on my first Focal. During my first Focal, I really thought I was making perfect sense!
Looking back on all this, I realize I’ve actually had a third incident - after my Grand Mals but before my first big Focal. Chuck and I had just “come out of sleep”, and we were making the bed. I was joking around and began to realize the first half of my sentences made sense but the second halves made none. The whole thing passed very quickly, thank God, and we laughed about it. We just chalked it up to my weird, new brain due to Grand Mals. And I've had a few smaller ones since then, too.
But after "film night", I had to decide whether to tell Dr. Kurukumbi and risk being unable to drive for 6 months. I hadn’t lost consciousness, and it was just my language, so….
Then my son (who lives with us right now) suggested perhaps I’d had a Focal, because, after 3 days of pure diarrhea from the stomach virus I was just getting over, my body had not been able to process enough of my anti-seizure medicine. Also wasn't able to retain the salt I needed!
Bingo. He was absolutely right.
And then a big decision: to be safe, I shut down my business entirely. This was to keep myself from constantly feeling like I should be DOING SOMETHING. That I needed to get better so I could back to work. And made me feel incredible stress.
And sorry as I am to be in forced retirement, I am so thankful I don't have anything to do any more.
So, I don't have Grand Mals. But, given stress or illness, I can have focal seizures - conscious or unconscious - and I can speak through both and make no sense whatsoever.
So, after all this, what have I taken away from my two years of brain fog and the next 6 years of learning to deal with Epilepsy?
In dealing with all of the above, I’d say the very worst thing about having epilepsy is losing memories. That's a loss I do mourn over quite a bit. I'm glad I've always kept diaries of one sort or another, and I'm glad I've kept thousands of photos. It helps... quite a lot.
But I also mourn the fact that I no longer speak and write with ease. I’ve been a storyteller from the day I could talk, and my life and life’s work – all of it - depends on memory. It’s what you need to be able to write.
My stories that always start from my memory are hard to come by, and I mourn the loss of the success I was about to have.
Before seizures, I spent two years in confusion, unable to write or organize anything. And I had just written the libretto for a critically acclaimed opera. My opera – the one for which I wrote the concept, story line and libretto after years of research, and everything about the work was excellent. Lucky enough to partner with the brilliant composer David E. Chavez. And the ability to do something like that was suddenly gone.
Now I could barely write a sentence.
And I had no idea whether any of it would come back. It slowly did. Not all of it. But most of it – enough to function and restart some of my writing, play writing, and marketing, etc. … because I learned how to help it come back.
Then losing weight, eating properly, and daily exercise have all helped sharpen things. In fact, when I’m thinking a unclearly, I’ve learned to ask myself, Have you exercised today? More often than not, the answer is No, and I get up and start walking (Now I’m addicted).
And here I am, working hard to stay grateful for every minute on the planet... and getting more and more used to surprises.