Wednesday, September 28, 2016

One Foot in Front of the Other

Adulthood throws curveballs, that much I've learned.

In my twenties I was naive enough to think that I had it all planned out, how our life would go.  And why wouldn't I?  I was doing everything right, checking the boxes.  Kids and job and health and suburbs and nice vacations - smooth sailing.

At first, blips in my steady line would literally sweep me off my feet.  Family turmoil, peanut allergies, post partum depression, sudden deaths in relatively young relatives - it would all become overwhelming in a way that I could barely cope, for the short term.  The loss of control over my life trajectory, and the reminder that I really had no control, would send me into a tailspin, complete with insomnia, anxiety attacks, and a general malaise.  I like to think, thanks to therapy, medication, and just the wisdom of getting older, that I can now handle these blips better - that I am more accepting, more in the present moment, more at peace.

My husband had a seizure last October while he was on a jogging trail, and it came out of nowhere. He was discovered by fellow joggers and taken away on a stretcher, when he called me from the ambulance.  My first view of him at the hospital was jarring - he was out of it, bloody, and bruised.  No, no, no, I remember thinking, This is not our life.  This is not how it goes.   MRI's, CT scans, and EEGs followed, all coming out normal.  I impressed myself with my sense of calm throughout the whole ordeal, and had an odd sense of confidence that everything would be fine. And it was. After six months, we exhaled.  He started driving again.  Onward and upward.

My husband was drowsy and a bit detached on Sunday night, but after some marathon conference calls, I couldn't blame him.  He was stressed, and hadn't gotten much sleep the night before, thanks to a law firm cocktail party, where both of us had indulged in one too many.

Was that what did it?  The alcohol?  The lack of sleep?  The stress?  

We both got into bed at 9pm, and engaged in the bad habit of scrolling through our phones, eyes scanning the electronics.  The TV was also on - lights flashing, noises coming from all sides.

The flashes?  The sound?  

I showed him a political quote someone posted about Donald Trump - "If you ever wonder what you would have done in 1930s Germany well then my friend here is your fucking chance to find out."

I don't get it.  He said.

Annoyed, and convinced he just wasn't really paying attention to me, I tersely responded, What don't you get about it?  

And that's when he left.

He let out a loud groan and his eyes rolled into the back of his head.  His muscles tightened and he rolled into the fetal position, then quickly straightened out, and started shaking.

I think I called out for him.  I think I put my hands on him to try to rouse him.  I'm not sure.

But I know what I did next.  I ran out of the room.  It was a pure fight or flight response.

I wanted out.  I wanted to disappear, I wanted him to disappear.  I didn't want this to be happening.

I stood outside the room for 5 seconds, came to my senses, and ran back in.  There he was, still convulsing on the bed.  His face was beginning to turn white.  I picked up the phone and called 911, and clearly remember saying: My husband is having a seizure.  Send someone.  Please.  

Later, numerous doctors would ask me how long the seizure lasted.  I can honestly say I don't know. Two minutes?  Ten minutes?  Time stopped and then moved slowly and then quickly again.  I know I turned him on his side.  I know I went downstairs to unlock the door for the paramedics, put the dog in a closet so she wouldn't run out, and closed the children's bedroom doors so God willing, they wouldn't wake up when the ambulance got there.  I remember continually asking the 911 operator, Where are they? and then apologizing for my hysteria.  I remember crying.  I remember my heart racing out of my chest.  I remember feeling faint and willing myself to remain calm.  I remember the immense feeling of relief I felt when the paramedics arrived.  By then, he was starting to rouse.

What is your name?  What day of the week is it ? Who is President of the United States?  

He could not answer any of their questions.

They carried him downstairs on a stretcher.  I had the wherewithal to give one of the paramedics my husband's phone, knowing that when he came to he would want it, and it would be a way to communicate with him.  I closed the door, texted our babysitter, and then waited, in a quiet house, for her to arrive so I could go to the hospital.

I called my sister in law.  I paced.  I dry heaved in the bathroom.   I gathered some clothes for my husband to bring to the hospital, since he was carried out in his underwear.  I ordered an uber, because I didn't trust myself to drive, and thanked God that my children slept through the whole incident, and would be none the wiser in the morning.

When I arrived at the ER, I was directed to his room, and realized it was the same room he had been in 11 months prior, when he experienced his first seizure.

I was blissfully ignorant that first time around.  Convinced that this was a freak accident, a blip, something to get through and deal with and then put behind us.  I was stoic and calm then, having had the benefit of my own ignorance of what it exactly was that my husband had just gone through.

This time, I had seen it with my own eyes.  He was there, talking to me.  Then he wasn't.  His mind - the essence of who he is - was taken over by electrical impulses in his brain that went haywire, taking him away from consciousness, from reality, from me.  The fact that he came back from that, from the involuntary writhing body I saw lying on our bed, is a miracle in and of itself.

I wrote a post last year about my husband's first seizure, and in it, I quoted a non-fiction book I had just recently read, Do No Harm - Stories of Life, Death, and Brain Surgery, authored by a neurosurgeon.  Having witnessed my husband literally lose his mind, it now takes on new meaning:

"In neuroscience it is called the 'binding problem' - the extraordinary fact, which nobody can even begin to explain, that mere brute matter can give rise to consciousness and sensation."  

As I sat in an uber on my way to the hospital, I couldn't get that sentiment out of my head.  All we are are our brains - and those brains are so vulnerable.  In an instant, it can be lost.  No matter how much we kid ourselves, we are not in the driver's seat.

I've been on zoloft for three years now, but there's no anti-anxiety medication that could have quelled my nerves that night.  And as I walked through the ER hallways and passed elderly people groaning, patients hooked up to machines, and heard the sirens wailing as another emergency patient was brought in on a stretcher, I don't think I had ever felt so unsafe in my own skin.

We're all going to die.  Someday.  When?  How will it happen?  Will these people die tonight?  Will I?  Will my husband?  What's to stop that from happening?  What's to stop anything bad from happening? Pain and death are inevitable, and I go through life pretending I'm invincible.  What a fool I have been.  Where can I go?  Where can I hide? How dare I bring my children into such a scary, ruthless, painful world? 

I've been through enough therapy to know that these thoughts were irrational, if not expected.  But as I watched my husband doze, passed out from the Ativan they had given him, my mind and heart raced in a well synchronized dance.  I willed myself to cry, knowing that crying helps release the anxiety, the pain, the fear.  I did a little.  Just a little.

The doctor put my husband on anti-seizure medication, and sent us home that night.  My sleep that night was fitful to say the least, and I was haunted by visions from the evening.  One vision in particular has been replaying through my head constantly - my husband looking at the computer. His blank stare.  His eyes rolling back into his head.  My slow motion realization that holy shit, I think he's having a seizure.  His muscles tensing up.  The moment I lost him.

I never, ever want he or I to go through this again.  But I am working on summoning the bravery to face the reality that more likely than not it will - statistics say that if someone has two seizures, they have an 80% chance of having another one.  

This reality has left my husband and I reeling over the past couple of days.  There are the practical implications - no more driving, and no more drinking.  But then there are the questions of how one lives a normal, predictable life, when in a moment's notice, it all can change.  My husband is at the whim of the electrical currents in his brain, threatening to go haywire and taking away his mind.  And so am I.

And so we embark on the quest of learning to live with uncertainty, knowing full well that in reality, life has never held any guarantees.  Coming to peace with that will be my work, and as a recovering control freak, it's work I need.  I know this.

But I'm not too proud to admit that I'm dejected.  I'm sad.  And I'm so, so scared.

For now, it's one foot in front of the other.   And finding grace, and peace, in each step.

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  1. I have two small children and have been dealing with anxiety issues too. I have visions of my husband dying and being left alone to raise them. I found your blog by accident and have been reading your posts, mostly because it feels like someone else is going through what I am going through. And it helps. I thought I would post this comment to let you know you are not alone, even if I don't know you, I am sending out prayers and good thoughts to you and your family in the hopes that you may find some peace. One step at a time is the way to get through this, one day at a time. Hang in there. You can do this.

  2. So sorry you are going through this. Hang in there--sending all my best wishes.

  3. Wow. that is so unbelievably scary and sad and shitty and so many other things. How are you right now? How is your husband?

    Thank you for the honesty of your words. Please keep us updated on how things are, as much as you are willing to share.
    - Trina

  4. I feel so much of your pain and fear. What a nightmare. I hope you regain your footing soon, and hats off when you do (I know you will).

  5. So sorry you are going through this. Have you thought about him leaving the law/being a partner and downsizing??

  6. I'm terribly sorry. I can only begin to imagine how scary that must have been.

  7. Whoa. That is a lot. Must be very scary for your husband & you. I see you both as very strong determined people - hope/imagine that will help you manage the fear.

    Very candid story - thank you for sharing

  8. Hi Shannon -

    I'm sorry to hear about your husband's recent seizure. You couldn't be more right, "In and instant, it can be lost. No matter how much we kid ourselves, we are not in the driver's seat. And the reality is life never held any guarantees."

    Like you, I too was a control freak. After about a month of up all night banging my head, spinning the drain, and down the rabbit hole, I was done. My counselor told me something simple. Something I use to this day, and that's to cross that bridge when I come to it. When I feel my thoughts twisting (and you knew from reading they would) I'd breathe, repeat the saying, and push them aside. As you know, we can help (medication, diet, etc) but the rest... out of our hands.

    And because the shift is life altering and hard never forget you have every right to feel what you're feeling dejected, sad, scared, and any other emotion you care to throw in. Never let anyone tell you different either ; )

    The interesting thing is this awful brain stuff can be beautiful too. In the shift there are pockets and pieces that wouldn't have happened had this not happened. Would we trade, to be naive? I used to scream of course! Now I question (I erased and re-wrote that a few times; ) But since this is the life we were given and no one promised us otherwise. I have to snatch every good that comes our way. What other option do we have, right?

    I'm holding you and your family extra close Shannon.


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