Hoping for Normalcy

My husband David has had seizures since his teens. We have been together for a quarter-century which gave me a front seat.  The most dramatic experience was the life-threatening Status Epilepticus he went through.  I hope that this will give you a glimpse into what it’s like for those of us who get to only watch.  It is quite long but then so was the experience.

I have seen a tremendous amount of seizures. Countless became appropriate many moons ago.  If I saw that many, then there were even more.  Those I wasn’t there for and those happening right next to me but silent, invisible.

I was vaguely aware of status epilepticus.  I had read about it, was told about it but couldn’t possibly prepare for it. Ever.  

I knew it as a seizure lasting thirty minutes which at some point was lowered to twenty minutes.  As many seizures as David had, he never had a three-minute-one let alone one that was twenty minutes long.  The Latin name helped appear more impossible than improbable.

I would like to tell you that David had an uptick in seizures before IT happened.  He certainly did but it never registered with me.  I saw him in the evenings after work.  He often had a seizure right as he was falling asleep. This seems no different.  After the fact,  he spoke with several colleagues.  He was far from fine.  I used to get very angry that not a single person reacted appropriately.  They could have at least gone to HR.  Most of them were quite young and none of them were prepared to recognize the severity of what was happening.  Neither was I and I should have known better.

That day I came home from work as usual and so did David.  He was not feeling well and his eyes were getting glassy.  He looked like he was tipsy.  Normal. 

So he went and laid down on our bed.  Shortly thereafter he had a seizure. Normal.

I double checked that he was physically safe.  We specifically picked our bed and nightstands making sure he can’t easily get hurt while having a seizure.  I always checked regardless. Things could have shifted. He could be laying down in a way that a seizure is likely to toss him off the bed.  Then I walked away. Normal.

I peaked in a few times.  He was sleeping. The sleep of the dead as the physical  exhaustion of all those muscles seizing had set in.  Normal.

Our home is neither big nor does it have insulation in the inside walls. I heard noises. Very familiar noises. Ran to the bedroom. Yep, another seizure.  These two are kinda close.  Normal.

The third one was loud.  Different parts of his body were repeatedly launched into space. Normal. However, three seizures in a row is decidedly not normal and they are close. Way too close.  Not Normal.

I am standing at the foot of the bed. I am watching this happen and my mind can’t  process it.  I am extremely worried at this point.  I think about calling 911. It seems appropriate yet too extreme.  I sit there staring as David’s body violently convulses. Time stretches out and I am planted there for an eternity. I finally decided that I will call if he has a fourth one.  Not Normal. Decidedly Not Normal.

Why wait so long to call the people who can help him?  For 21 years, I was told by doctors that a seizure just ends on its own. Calling an ambulance is unnecessary. It would do no good. Normal.

After midnight David had a fourth seizure.  I still can’t process that this is happening.  It helps that I have already made the decision to call.  I have my cell already. Standing at the bottom of the bed, I dial.  The operator asks some medical questions and confirms our location.  I am told the fireman will arrive first then the ambulance. Fireman, really?  Yes, and there will be no sirens.  Not Normal.

Shortly after the firemen show up.  They do not use the sirens as promised. The red lights are flashing in quick short bursts.  I open the door and the dance of red hits me. The whole culdesac is illuminated.  It takes a moment to focus on the two firemen standing in front of me.  Not Normal.

They are dressed as one would expect. No hats as you would expect. Yet my mind goes “Hum”.  They have to ask if they may come in?  Of course as I move aside. The bedroom is down the call to the right.  There are two firemen in my house. One carries a clipboard.  Not Normal.

 The one asks a lot of medical questions in rapid sequence and takes quick notes. When did it start? How long? Explores the symptoms. Is this normal for David?  No, Not Normal.

There is another knock at the door. I closed the door out of habit. More firemen with gear. The medical kind. They follow the voices down to our bedroom.  I am not sure if I never understood what was happening or have blocked it out.  What I do remember is way too many firemen in our bedroom. One would be too many.  Not Normal.

Shortly after the paramedics arrived. The firemen exit.  The one with the clipboard stays behind. He reads off the information he collected while the paramedics work then leaves. 

The paramedics make quick work of it. They tell me he is going to the ER at Good Samaritan Hospital.  I can follow in my car.  I know how fast they will drive. I can’t do that legally so I leave immediately.  It didn’t occur to me that following my husband’s ambulance at high speed is perfectly normal.  What is worse is that this just occurred to me right now in 2020 or 5 years later. My thinking – So Not Normal. 

When I get to the ER David isn’t there yet.  I’m surprised but I don’t think much of it and sit down in the waiting room. Time goes by. I start checking with the front desk. 10 minutes. 20 minutes. 25 minutes. Half an hour. I am past concerned and now fully worried.  No, they don’t know why he is not here yet. They are sure he will be here, shortly.  Finally, 35 minutes after I got here the ambulance arrived.  I can’t see him yet.  They have to unload him.  Shortly after I am able to join him.  I do so as they are wheeling the gurney into the ER.  He is tied down. Later, we found out that after I left he wanted to get off the gurney.  He put up a fight.  For years, I felt responsible.  If I hadn’t left in such a hurry, I would have talked him down. Over the years, this has become a maybe.  

David gets a large dose shot of whatever anticonvulsant he was taking at the time. Long black foam pads line both sides of the gurney.  There is a message on each.  Something about not removing them.  The letters are large and handwritten.  

By the time he is fully settled and sleeping it’s 3 am. I won’t be at work tomorrow. I need to text my boss but certainly can’t do it that early.  I don’t trust myself to remember. I type it all up and will hit send at a more normal hour.

A nurse asks if I have a moment to give some history.  Of course. I stand next to her in the middle of the ER and answer question after question.  Midway she stops and tells me how impressed she is at my composure.  I am surprised.  Why wouldn’t I be?  Is there any other way? She usually deals with distraught loved ones who can’t answer much this soon in the process. I shrug it off at the time but it has stayed with me.  My reaction.  Not Normal.

I sit next to sleeping David.  He doesn’t look peaceful.  It’s the slumber of the exhausted but he is now safe. I don’t think past this moment.  I couldn’t  process any of it even if I tried.  It’s surreal.  

It’s now Wednesday.  David will stay at the hospital for 1 to 2 days for observation.  They are not sure when they will move him from the ER.  No one tells me that he would have died if I hadn’t made the 911 call.  Only later, much later, a doctor who is probably a neurologist utters the words. The meaning didn’t penetrate and still hasn’t. I plan to not let it. Ever. There is a lot of life left to live.

Before they move him, I go home to shower and change in a suit, do my hair and make up.  I am going to work for about an hour and a half. There is a photographer coming to take our team picture.  The kind clients get to see for a minimum of a year.  It’s not a team if all of us aren’t there.  My boss tells me there is no need.  I should stay with David.  I chose to go anyway.  David is safe and will be in the hospital awhile longer.  At the time, it felt like something I just had to do. Today, I really think I was looking for some semblance of normalcy.  It worked.  I didn’t have to look at a photo without me and relive why I wasn’t there.  Normal.

When I came back to the hospital, David was in an actual room.  He looks beyond exhausted.  As if every cell in his body is beyond tired.  He is smiling, he is conscious and alive.  That is all that matters.

I took him home the next day.  This was the beginning of many tests, doctor visits, and lab work but that’s another story.

Oh, I forgot to tell you.  When this all happened I was pregnant.  We had tried for 6 and a half years. It finally took. Her name is Emma and she is fabulous.

Svetla Vavova-Clifford married David Clifford in 1998 fully aware of his seizures. As a matter of fact, he proposed between two seizures. There was just enough time.  So she walked into it fully aware.  Her level of awareness has expanded every single day since then.