THE BROKEN BRAIN

The serious brain fog began five years ago – long before my diagnosis.

I kept telling my friends, family, doctors, “It feels like my brain is broken.” I had no other way to describe it, but those words felt right: Yes, my brain is broken.

And everyone said I was just depressed. “It’s natural you’re feeling depressed right now... You just lost your mother, you had to move, and you had to shut down your business.” All of that was absolutely true, so maybe they were right?

Now I began to doubt my own instincts. Okay, “Brain not broken; brain just… depressed”.

The death of my mother, with whom I was so close and who had lived with us for 25 years, our son moving away from home, and then the need to move from the gorgeous old home we’d been renovating for 32 years but couldn’t afford to live in anymore - all legitimate reasons to be depressed!

Truth is, I had an inkling our son would move soon, but my mother’s death was so sudden, and I really had no idea that, after she passed, we would have to move. But within 6 months, I had to shut down my highly successful production company (the one whose recent work was leading to incredible things - another story, entirely) and pack up that beautiful home with all its memories.

Depression.

But, wait… could depression have this much power over my ability to think? I’m a writer and a producer, and there were now times I actually could not READ a sentence, let alone write one. And there were times I couldn’t speak clearly, either. Could depression alone do all of that?

Or was I going crazy? Could crazy do this to your brain?

Brain broken. No. Brain depressed.

Well, you’d be depressed, too, if your thoughts no longer walked in a straight line.

Then one night I stayed up eight hours at my desk. My husband was shocked to find me there in the morning - hunched over my computer.

“Have you been there all night?!”

“Yes”, I said.

“What are you doing?”

“I can’t get these sentences right.” I had been re-editing the same two sentences… all night long.

Clearly something was seriously wrong with me – more than depression - but Chuck had no idea how to help me, and neither did I. Meanwhile, there were things to do, boxes to pack, a house to sell, and a life to move forward.

But one day I began to cry hysterically. I couldn't stop. It was terrifying. Chuck was on his way to work, but I desperately needed to make him understand how little I could function - that I finally, literally could not think. I called him and could only say Help me, and, feeling completely desperate,, “Don’t make me hurt myself to prove to you I need help!”

Let’s just pause and let me make this clear: No, I was not suicidal. I was desperate.

My brain – that thing other people called clever, well-organized, and highly creative – simply didn’t work anymore. People couldn't trust it, and neither could I. How do you explain anything to anyone when the correct words just won’t come to you anymore?

Thank heaven Chuck took me at my word, and we went to Urgent Care. I then spoke to a psychiatrist who suggested I go to the hospital for further study. Yes, I said. I’ll do anything to try to understand what’s happening to me.

And so I went to the Pysch Ward of a hospital where people walked the hall like Zombies. Yes, I have memory issues, but, oh, I remember that: people walking the halls, and my rolling passed them in the wheelchair as they brought me in.

These people didn’t appear to be having their brains 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, now – beginning with the crying jag and ending that afternoon, when my husband came to see me, and I told him, “I don’t belong here. I want to go home. Right now.”

My poor husband.

All I knew was my brain was broken… but not "walking zombie" broken. Whatever help they gave there was not going to help me. 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.

So, I had one more long year of brain fog and sorrow and doctors constantly sweeping all of it 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. My procedure was scheduled in the early morning.

I remember that night before bed: I could see something like death walking toward me, ready to take me with him. And I felt strangely calm about it. I was glad of it, because death would mean peace.

I did not share these thoughts with my husband. What would be the point? There was nothing he or I could do.

So 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.

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.

Apparently further 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 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 – men - lifting me up and removing a bedpan, while one said, “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 then, “Now that’s service”, as the bed pan was taken away.

Odd. They didn’t laugh.

See, I thought they were the ones who’d done my colonoscopy, and that the medication caused me to forget the morning. But I did think it was strange that I couldn’t remember anything about how I got there...

Once they left the room, my husband sat down and explained.

And, you know what? The first thing I felt was relief! My brain had finally given a huge, very tangible, very measurable sign of its brokenness. I could shout at my doctors, “See! I TOLD you my brain was broken!"

And this event did wake my doctors. They cried as if as one, “AH! She really is physically sick! Look, here is something we can treat! Maybe even diagnose!”

And then it was my turn to feel relief. I finally knew what was happening in me. I 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: Anti-phospholipid Syndrome. It’s a tendency to blood clot - the thing that made my having children so difficult.

And eventually I got the right anti-seizure medicines and got back to life. Brain fog still came and went, but never like it was during those 2 years.

My brain no longer felt broken - just sprained. I hobbled as I walked about.

And now, a few years later, they’ve begun to focus on the fact that I have Hyonatremia – chronic low salt. In fact, low salt could be the ONLY reason I have seizures (my salt level was 122 when I first seized and 125 after my next big seizure), and now – 6 years later - we’re 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's doing a nice job.

And when I have memory issues – can’t remember a certain word, flip words or suddenly can’t recall the name of someone I’ve known 30 years – my friends will say kindly, “Oh, 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? Have you ever forgotten your own birth date?”

And, salt or not, if I allow myself to become too stressed, I can have a Focal Seizure, which I think is best described as "zoning out". I can be conscious or unconscious, but I'll talk through both and make no sense whatsoever.

So what did I take 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. From huge events to little words…

I’ve been a storyteller from the day I could talk. My life and life’s work – all of it - depends on memory. It’s what you need to be able to write.

Before the 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. But 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 un-clearly, 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 at age 64 – 6 years after that first Grand Mal - working hard to stay grateful for every minute on the planet... and getting more and more used to surprises.