THE BROKEN BRAIN

The serious brain malfunction began when I was 56. Not just, "Oh, I'm having a bad day" brain fog, but a "Gee, I can't read English for 3 hours" type. I began telling my friends, family and doctors that it felt as though my brain is broken. Yes. That seemed right. Because up until that year I'd been a high-energy, multi-tasking little success story that loved the challenges each day brought me.

But, when this heavy fog began, people simply told me this it was natural. I was just depressed: "You just lost your mother, you had to move from the beautiful home you spent the last 32 years restoring, your son moved to the west coast, and you had to shut down your business for a while in order to pack things up and move.” 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 have to move. And in order to move, I'd have to to shut down my highly successful production company (whose recent work was leading to incredible things - another story, entirely) and pack up that beautiful home with all its memories.

All worthy of severe depression, so...  were they right? Could depression have this much power over my ability to simply think? I’m a writer and a producer, but there were now times I literally could not READ a sentence, let alone write one. At other times I couldn’t speak clearly.

Could depression do all of that? Or was I going crazy? Could crazy do this to your brain?

Brain broken. No, I tried to tell myself. Brain depressed.

But then there was the morning my husband was shocked to find me hunched over my computer... just as he'd left me the night before.

“Have you been there all night?!”

“Yes."

“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 was terrified. My husband, Chuck, was heading to work, and I called him. I desperately needed to make him understand how little I could function - that I literally could not think.

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 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 to anyone when the correct words just won’t come to you anymore?

Depressed? Well, yeah. You’d be depressed, too, if your thoughts no longer walked in a straight line.

Thank heaven Chuck took me at my word, turned around and came home and took 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 a hospital. And, I remember the trauma of being rolled into the psych ward in a wheelchair and riding passed people whose eyes stared ahead at nothing, whose feet shuffled aimlessly. These were Zombies.

This was where I was coming to have someone evaluate my brain? 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.

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 want to go home. Right now.”

My poor husband.

All I knew was that my brain was broken… and whatever help they gave over there was not going to help. And, because I’d signed in voluntarily, I was able to sign myself out, and we went home.

Thank god.

After that, I was calmer. I would do whatever it took to avoid going back to the place where the zombies walked.

I had one more long, terrifying year of brain fog and sorrow and doctors constantly sweeping it all aside for this reason and that 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 that was busy breaking my brain. My colonoscopy was scheduled in the early morning.

Another traumatic memory I have was from the night before. I was in bed and saw something like death walking toward me, ready to take me with him. And I felt a strange calm, because death would finally mean peace.

I did not tell my husband any of this. What would be the point? There was nothing he or I could do at that point

Instead I told myself, I’m going to bed, now, and 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, 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. I apologized. He mumbled that it was alright.

And apparently later into the night, I swung violently out of bed with a 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 already 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!”.

Odd, though, that they didn’t laugh.

See, I had decided they 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/

But once they left the room, my husband came in and explained. Told me how he was wakened by the sound of me falling out of bed. Described my first Grand Mal. 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 from his descriptions was relief.  You see, my 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, this did wake up my doctors. I never had to heard 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’s a tendency to blood clot - the thing that made my having children so difficult. But they couldn't find any blood clots. Hmmm....

And 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 focuses 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, just... 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 of that. After I put a serious dent in our dishwasher, I asked my doctor to switch my meds, and now I'm on Lamactil. It gives me headaches and awful rashes, but I'll live.

And my new doctor  began to focus on the fact that I have Hypnatremia – chronic low salt. Truth is, if anyone's salt becomes severely low, they can have a seizure, and what we found is that - without help - my salt is always low. Acceptable low is 134, while my salt level was 122 when I first seized and 125 after my next big seizure. I'm 65, now, and still trying to get the right balance between my low salt, need to drink less water, and the meds I have to take that will damage me if I don’t have enough water. My GP finally said "Drink Gatorade instead of water", and that was doing a nice job... until I had a Focal Seizure. And now we've switched to Liquid IV instead of water, and that seems to really be doing the trick but is bloody expensive.

I still have memory issues, but the misfires are because I just flat out have Epilepsy.

Seizures do damage and some of it is permanent. My friends try to be niece. when I can’t remember a certain word, flip words or suddenly can’t recall the name of someone I’ve known 30 years – they'll say kindly, “Oh, that happens to all of us!”, I just smile. I’d rather have them chalk it up to something they can relate to than not. What’s the point of my saying something snappy like, “Really? Ever forgotten your own birth date?”

The bad news is that, low salt or not, another seizure trigger is stress. That's just purely due to having Epilepsy. So I have an Ativan when I'm becoming a nervous wreck.

The stress seizures I have are referred to as Focal Seizures. Unlike my Grand Mals, they do not cause physical jerks. It's more like having your mind float away from your brain.

One time I felt my brain disassociate and was able to get to a chair in time before I blacked out. When my husband came home, I apparently began talking to him (I don't remember any of this), but I made no sense. Eventually I came back to full consciousness, and we set up an appointment to see my Neurologist. He explained that just stress - pure stress - can cause seizures, and I realized I'd been doing stressful work on a nonprofit board at that time, so I pulled myself off the board. Oh, and in my state - Virginia - you can't drive a car for 6 months (for obvious reasons).

Another small focal was the day I woke up and my husband and I began to make the bed. I would begin a sentence, and 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. They were replaced by nonsense. But this little incident past, and I didn't bring it up to the Neurologist. Next focal seizure was a big one, and I was again completely conscious.

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, last night 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 asked me a question about a 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:
 
That was part of the original thing about the area. (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. (Elizabeth is tending the young woman and it’s 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 that’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 the lead – not Elizabeth - so we don’t know her name).
 
Then Chuck began to stop me and tell me I sounded like I did the other time I wasn’t making sense.
 
What are you talking about, Charlie? (That was the first sentence I said that made sense, but I still couldn’t remember what a Focal Seizure was).
 
Chuck explained I’d been talking around and around in circles.
 
 I got very sleepy and I went out of sleep (I was trying to explain by excusing myself: Well, I’d been sleepy, I was saying, 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 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.

And today I took this thing 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 to the part of the brain that puts sentences together wasn’t working. The bridge was broken. When you have a seizure, it shows up on an EEG via brain waves that are just going 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, and I wanted to remember the name of that condition and couldn’t think of it.
 
Around this time – coming into consciousness - I also became terrified, because I had no idea when or if the disconnect would end.
 
Heck, I’d only had one Focal before this, and I couldn’t remember much about that one, 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. Then eyes would go wide. At one point I flail my arms a bit. Curl my hands at another time. I think I was seeing if it would help me find the words. It didn’t. But, when I did the curl, I remember thinking something along the lines of, “Okay, I can 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 (must have had Google up). But I didn’t even know how to start typing.
 
My ability to research was wiped clean.
 
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 Antiphospholipid 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. I did not tell him this, however – for obvious reasons. Looking back on it, I think his smile was a coping skill. I realize this is an awful lot to deal with…
 
But 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, what Chuck’s experiencing (poor guy) and figuring out how what I said related to what I tried to say. It was kind of fun. So, “Coming out of sleep” means “waking up”. Okay, that almost makes sense.

The weirdest thing was knowing in my head exactly what I wanted to say, and having everything coming out of my mouth be 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.
 
Well, last night was not funny.

Next 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 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.

But, just to be safe, I also shut down my business entirely to keep myself from feeling like I should be DOING SOMETHING. That feeling stressed me out quite a bit. And sorry as I am to be in forced retirement, I am so thankful I don't have anything to do.

I had another focal recently - conscious, but brain floating out of head and not being able to make sense. My Neurologist realized I had to go back on my full dosage of Vimpat (400 mg/day. Result? More headaches, but them's the breaks.

So, I don't have Grand Mals. Given stress or illness, I can have focal seizures. They can be conscious or unconscious, and I can talk through both and make no sense whatsoever.

And 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?

1. Practice gratitude. Brain doctors will explain that being thankful triggers our happy hormones. In fact, just trying to think of something to be grateful for triggers them. So work on being thankful.
2. To support your brain, you have to prop it up with a working body (Exercise, sleep, lose weight, eat right, manage your medicines, avoid stress, and, for me, get that salt business straightened out!).
3. No, you can’t have it all, so quit trying.
4. When you can’t trust your brain, trust your instincts.
5. Be careful with whom you share the full story (As Lou Holtz once said, “Never tell your problems to anyone: 20% don't care and the other 80% are glad you have them”).
6. Create a diary. Take notes on EVERYTHING, so you can re-read and re-teach yourself what you’ve forgotten until it’s as clear in your mind as it can be.
7. And make sure that diary includes medical notes as well, because you need to remember your reactions to medicines, procedures, and treatments and wether that doctor was any good! Everything that’ll help us next time.
8. And although anti-seizure meds work well to hold a seizure back, I have to remember I can still do things to put myself in the hospital. Yep. Me. My own bad decisions can make me sick.
9. Never be afraid to change doctors. Look for doctors who are specialists, who listen to you, who take your concerns seriously, and give you options, because the fact is….
10. You and you alone have to be your best advocate.

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. 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.