Tuesday, August 7, 2018


There are two men in my heart, and I’m torn between them. 

One is a man I met when I was 18 years old and just peeking around the corner that separates childhood from the adult world.  When we went on our first date, he was so naïve that he invited his best friend along.  I was so naïve that I didn’t know that wasn’t typically the way dates worked.  Our love is built on hundreds of hours of late night phone calls and whispered promises and memories of who we were before we became who we are. 

He is the man I agreed to marry.  When I gave my vow that no other man’s lips would ever again touch mine, I was holding his hand.

My children are also his children.  In them I see his influence.  My son’s charisma.  My daughter’s almond-shaped green eyes.  Their intellect.  Their energy.  Their sensitivity.  Their deep capacity for love.

The other man I didn’t meet until I was well into my fourth decade of life.  I didn’t plan to love him.  In fact, I resented his intrusion.  From the moment we met, my every thought and action was dedicated to moving my life as far from his as possible. 

But he didn’t leave.  And over time, my feelings toward him gradually shifted to resignation, then to acceptance.  I found his bright, child-like grin endearing.  His silence was a soothing counterpoint to the never-ending chaos that lived in my brain.  His embrace felt so familiar, but one look at his face reminded me that he was different from anyone I’d ever known before.

Many people struggle to find one all-consuming love in this world, and yet I’ve been fortunate enough to experience it twice.

They don’t know about each other.  In fact, I can guarantee that they’ll never meet.  No matter how many times I measure them against each other, there’s no chance that they’ll ever stand side by side.

One of these men is my husband.

The other is who he was before his massive stroke on February 15, 2009.

A time was noted on the back of her hand in black marker.  A time written in a hasty scrawl:
8:35

I watched as that hand grasped my shoulder and pulled me past the locked doors that separated the waiting room from the Emergency Department.  That hand swiped an access badge and opened yet another set of doors.  That hand motioned me around a corner and into an exam room.

My husband’s exam room. 

J.J., my 33 year old husband, had an exam room to himself in this bustling ER.  When I arrived, though, he wasn’t in the room.  The nurse who had escorted me asked me to sit down while she notified the doctor on call that I was waiting to talk with him.

While I waited, it hit me:

I knew the significance of 8:35.

8:35.  That’s the approximate time that J.J. collapsed on the stairs in our home as he was walking our kids upstairs to put them to bed.  Their faces were so agonized as they watched him fall and slide from step to step on his stomach. 

At 8:35, J.J. reached the bottom of the stairs and began to rub his right calf.  I thought he had a muscle cramp, so I calmly walked past him and got the kids settled for the night.

At 8:35, my biggest worry was a muscle cramp.

When the paramedics rushed him out of our home on a gurney, one of them had called back over his shoulder.  “What time did his symptoms start?” 

8:35, I answered.

Now it was nearly 11:00, and I wanted nothing more than to go back to 8:35.
My house was quiet when I stumbled in, leaving keys, gloves and shoes in a trail behind me through the kitchen and up the stairs.  It wasn’t the stillness of a house filled with a sleeping family.  I often woke before everyone else on the weekend to savor those moments and how they seemed to quiver with a contented hum that was just barely pitched too low for human ears. 

No, this quiet was different.  It was an absence of sound so complete that it was loud.  It made my head ache and my ears ring.  The air was so stagnant that it had a noticeable weight. 

I was all alone.  It was 2:30 AM, and I was all alone.

The bottle of Tylenol PM on my desk called to me, and I replied by dry-swallowing two tablets.  Then I lay down on the bed without changing out of my clothes and piled every blanket in the room on top of me.  I prayed that I would sleep and when I woke, I’d find J.J. tucked in beside me, this entire episode just the product of an overly anxious brain.

Somewhere around 4:10, I dozed off.  I jerked awake a few minutes later and eagerly reached across the bed, certain that I’d be able to touch J.J.’s back.  I’d leave my hand there long enough to feel his pulse against my palm, to feel my arm raise and lower with his breath, and then I’d roll back over and sleep until it was time to start another typical Monday morning.

My hand outstretched, I reached so far that I had to roll onto my side.  My hand fell on the cool, hospital-cornered sheet on J.J.’s side of the bed.

He wasn’t there.

I hadn’t been dreaming.

This was really happening.
  *********************************************************************************
In the early evening hours, just after the dinner trays have been picked up and most visitors have said their farewells for the night, the ICU’s frenetic pace slows and the noise level drops.  It was during this time on the first day after J.J.’s stroke when I made the phone call I had been dreading all day. 

Eli answered on the first ring.  “Mom, what’s wrong with Dad?  Is he okay?” tumbled out in a rush.  I could tell from just those few words that my super sensitive firstborn was so worried.  I paused for a moment before responding.  How do you explain a stroke to an 8 year old?  I felt like I barely understood it myself.

“Yeah, buddy.  Dad’s okay.  He’s going to be in the hospital for a little while, though.  The doctors are taking really good care of him.  You know how you got a scab when you skinned your knee last week?  Well, scabs are usually a good thing, because they keep us from losing too much blood and they keep dirt and germs out until your skin can heal.  Dad’s blood formed a scab while it was still inside him, though.  This scab made it hard for the blood to get to Dad’s brain, and that’s what made Dad fall on the stairs.  His brain wasn’t working right, so it couldn’t tell Dad’s legs to work either.
The doctors are giving Dad some medicine so he won’t get any other scabs in his blood, and they are doing everything they can to help Dad’s brain heal.  While he’s healing, he might not be able to walk or talk for a while.  He might even walk or talk differently from now on.  The important thing, though, is that he’s going to be with us and we all love each other, right?

I know you probably have questions, baby.  You can ask me anything.”

Eli didn’t speak for a few seconds.  “Is a scab going to happen in my blood?”

“Sweetheart, we’re going to have a doctor look at you to make sure you’re okay.  But this is not something that happens to most people, and if the doctor feels like it could happen to you, you’ll get medicine to keep your blood from scabbing.”

“Can I talk to Dad now?”

“He’s asleep.  His medicines make him very sleepy.  But you will be able to visit him when Gram brings you home in a few days, okay?”

“What am I going to do about school?  I have to do my homework or Mrs. Seabrook will be so mad.”

“I’ve let the school know what’s going on, and they are going to have me pick up your homework tomorrow.  I’ll email it to you once I have it.”

“Mom, Pap taught Mikey a new trick!  He will dance if you hold up a treat!”

I smiled.  He was going to be okay.  I had tears rolling down my cheeks and my hands were shaking, but Eli was fine.

“Wow!  I bet that’s really funny.  You’ll have to take a picture so I can see it, okay? 

I’ll let you get back to Gram and Pap.  It was good to talk to you, bud.  I love you so much.”

“I love you too, Mom.  And Dad.  Oh, and Zeke.  Tell Zeke I love him!”

“I’m sure Zeke knows that he’s your favorite kitty, but I’ll tell him.  Be good now, okay?”

“I will!  Bye!”

I hung up the phone, laid my head back against the back of the chair and closed my eyes.  Eli had no idea how much the fabric of our family had been torn.

In that moment, I knew: if I had anything to say about it, he’d never know.    
I was shocked at how calm I was as I started my day, this first day after the world ended.  I made the bed and reset the alarm clock, just as I did every day.  I poured a soda into a glass and sipped it while 

I checked my email.  I mentally patted myself on the back as I laid out my clothes.

And then I stepped into the shower.

Somehow, all of my worries and uncertainties and fears and anxieties cascaded down on me along with the water that streamed from the showerhead.  I desperately cleansed my body, but what I wanted to do was cleanse my mind. 

What was going to happen to J.J.?
Would he ever come back home?
Would my children have a father?

As my thoughts swirled, my eyes began to tear up.  Suddenly, I felt my grief rise through my body in a wail that left me bent at the waist.  I crouched in the corner of the shower and sobbed until the water ran cold.  At the end of that shower, I washed my face again, dried off, and resolutely set about getting ready for the day.

I’ve told so many people about that wave of sadness—how it shocked me with its intensity, how I felt completely powerless to control it, how it switched off as suddenly as the water did when I turned off the shower.

What I’ve never admitted is this: I wasn’t sad for J.J. or our kids.

That paralyzing grief?  It was selfish.

That was my mourning period for my old life.
My mother-in-law and I have not always seen eye to eye.

This is an understatement. 

J.J. is an only child, born to a teenage mom and a father who was in the military.  Since J.J.’s dad wasn’t around as much during his early years, J.J. and Linda almost grew up together.  She dotes on him and is fiercely protective.  It was always the two of them against the world, and I think she has resented my intrusion into his life.  We’ve never been openly hostile to each other, and I truly do enjoy her company.  However, there’s just a certain wariness that is always lurking just beneath the surface during all of our interactions.

Which is why it must have been especially scary when she answered the phone at 1:30 AM to hear my voice.

I began by telling Linda that J.J. was safe, but quickly had to follow that up with the news that he had been admitted to the hospital.  The worse news was in the next sentence: he was in the ICU, and he had apparently suffered a stroke.   I hadn’t even finished forming the word ‘stroke’ when she stammered, “Hold on.  Hold on.”

For the next two minutes, I clutched the phone and listened to my mother-in-law’s anguish.  I don’t know if she cried.  I don’t know if she screamed or cursed or threw things; these are all sounds that are easily described, and I can’t easily describe what I heard. 

Once I read a book of old Scottish poetry, and several times, someone or something’s cries were described as “keening”.  When I inquired as to the meaning of the word, I was told that it described a wailing lament for the dead that was commonly performed by Scottish and Irish women as part of the funeral ceremonies.  My academic curiosity satisfied, I didn’t question the matter further. 
But if you were to ask me now to describe keening, my mind would snap back to that early morning call and to a muffled sound that didn’t even seem to come from a human throat.  It was the sound of a mother’s heart breaking.  The sound of an animal in profound physical pain.  A sound that catapulted across the phone line to raise goosebumps on my arms and to leave a lump in my throat.  Terror given voice—that’s what keening is.

When she returned to the line, Linda’s voice sounded unsteady but recognizable once again.  She told me she would make the three hour drive to the hospital once the sun was up, and I provided the logistics she needed to know.  We quickly concluded our conversation, and I disconnected. 

I’ve known Linda for nearly twenty years now.  We’ve spoken hundreds, perhaps thousands, of times.  We even lived in the same house for one short stretch.  I’ve heard her angry, sad, happy, calm, excited and anxious on many more occasions than I can count.

But when I think of her voice, the keening still echoes in my ears.
Before I called 911, I walked to the other end of our house.  I didn’t want J.J. to have to hear what I was going to say.

I’ve heard it said that the major things that happen to us in our lives become the way that we tell time.  I’ve certainly caught myself talking about high school graduation, or my wedding day, or the births of our children to explain when something else took place—“We moved there three weeks after Eli was born,” for example.

I now think of most events in my life as occurring either pre-stroke or post-stroke, but in reality, the exact moment that divides my life was a mere second long.

It was the breath that I took before I began to speak on the 911 call. 

The first thing I told the dispatcher was that I thought my husband had suffered a stroke.  Although I didn’t work in a medical profession myself, I interned in a hospital inpatient psychiatric unit when I was in college.  A few of the patients I saw there were stroke survivors, and I recognized many of the symptoms.  There was no doubt in my mind about what was happening with J.J.

With only a few words to the dispatcher, any trace of what we knew as normal was obliterated. 
The paramedics arrived within ten minutes.  When I opened the door and gestured for them to come in, the paramedic looked at J.J., who was by now sitting in an armchair in the living room, looking quite healthy.  He whirled around and asked me, “Ma’am, I don’t mean to be funny, but…why did you call?”

Then he took J.J.’s blood pressure.  That first reading was 176/128, when normal is said to be 120/80.

The next few minutes aren’t very clear in my memory.  I know that they must have checked J.J.’s other vitals, and I know that I must have given them other information. 

But I remember everything about kissing J.J. while he was strapped on that gurney.  I remember that he was only wearing one sock, as he had lost the other during his fall downstairs.  I pulled it over his toes and straightened the leg of his pants so it fell to cover the top of the sock.  I moved to his left side, leaned in, and kissed him gently on the forehead.  I told him I would be at the hospital as soon as I could be, and that I’d bring his shoes and coat with me.  I brushed a kiss across his lips and whispered in his ear that I loved him.

Then he was gone.

So was my pre-stroke life.
 He was so sleepy.

He had so many other signs and symptoms of the stroke, but I remember the sleepiness the most.  The ICU is not a good place to try to get good-quality, uninterrupted sleep.  His room was in the middle of the hallway, and the shrill beeps of monitors were nearly constant.  Periodically, a code would be called and a stampede of medical personnel would race past J.J.’s room.  The phone at the nurses’ station rang incessantly. 

Amid all the chaos, J.J. would no sooner drop off to sleep than he would be startled awake again.  He needed a rhythmic, familiar sound to drown out the invasive hospital noises—and I knew what to do.
I pulled the single, rickety straight-backed chair as close as I could get to J.J.’s ear, took his hand and started to sing.

About halfway through the first song, I felt him relax.  By the end of the second song, he was softly snoring.  I continued singing without a shred of self-consciousness, undeterred by concerns of what any passers-by might think.  When the ICU was especially noisy, I sang louder.  I sang every song I could think of.  As I reached the end of my repertoire, J.J. was still asleep.  I started again from the beginning.

I sang for over three hours while I watched him sleep.

Some months later, J.J. would ask me why I didn’t visit him at the hospital.  He had memories of some of the visitors to his ICU room, but he had no recollection of me being with him during any of that time.

I don’t mind that he doesn’t have conscious memories of my visits.  Somewhere in his brain, he recognized me and knew he could relax and trust me to take care of him, and that means more to me than I could ever put into words. 

There are some losses that cut so deep that even our language recognizes that your role in the world has changed. If your spouse predeceases you, you become a widow or widower. When your parents die, you are an orphan.

But there’s no word for you when part of your husband’s brain dies due to a stroke. No term that sums up that experience of looking at a man who looks like your spouse, but whose personality is totally different. No easy way to say that everything you knew about the person you once knew best is gone and that you are trying to find the strength to live with a stranger who inhabits his body.

The emotions you feel have words, though. The guilt that you aren’t happier to have him beside you at all, that you dare think about what you lost when so many widows would love to be able to hold their husband’s hand and to have one more kiss. The anger that you have to go through this when you are 30 years old and didn’t expect the “in sickness and in health” part of your vows to flip so suddenly at such a young age. The resignation that you probably would never have been interested in even dating this man who is your husband, that you have to find a way to love him or tear your family apart in even more ways than those that the stroke accomplished.

Because the truth is that there are days when you want to be anywhere but here. Days when you are driving home from work and you seriously consider just driving on past your exit and running away. 

Days when you look at your life insurance coverage amount to make sure that your kids and husband will be financially covered if your biggest wish comes true and the ground just swallows you up. 

Days when you hate your husband so much that it feels like it doesn’t all quite fit inside your skin. 

Days when you hate yourself.

Lots of days when you hate yourself.

It's a different pain than those experienced by others who grieve, because you're grieving someone who is right in front of you. It's a loss like no other: simultaneously more complex and more simplistic than those that fit into words like widow or orphan...and a million times more shameful than those losses. Who could you possibly open up to without immediate judgment, when even your own brain tells you how awful you are to feel like this?

Maybe that's why there's no word for you when part of your husband's brain dies--there's no need to name a grief that will never been spoken aloud.
It was February 15 when J.J. had his stroke.  On March 4, we celebrated our nine year wedding anniversary. 

8 years and 348 days.  That’s how long I was married to my husband.

As I write this, it’s been 8 years, 363 days since the stroke. 

Although parts of J.J. remain the same, he’s so different now that I often think of pre-stroke J.J. and post-stroke J.J. as different men.  My first and second husbands—only one of whom I chose to marry.
I love post-stroke J.J. so much it takes my breath away…but I’ll never stop thinking about the first man I married. 

I’ve now been married to my second husband longer than I was my first.  And as time marches onward, someday I’m going to get to the day when I’ve been married to him twice as long, and then three times as long.

But I’m never going to get to 8 years, 349 days with the J.J. whose presence with me still has a physical weight, who casts a shadow beside me no matter where I am.

I miss him so much.  
She dropped it on the table at Eli’s high school graduation dinner.  Three pages torn from a yellow legal memo pad, covered in the tight script I hadn’t seen for so long, big red ink blotches dotting the page from where he had scribbled out errors as he wrote.  Mailed to the apartment I lived in during the summer before my senior year of college, the letter was dated August 3, 1999.  Although I didn’t need to do so, I flipped the pages ahead to look at the closing.  All my love, J.J. 

I looked at my mother.  “Where did you find this?” I asked, still resting my fingertips lightly against those pages.  “Your dad has that old desk from your first apartment out in his woodshop, and when he pulled out a drawer the other day, that fell out.  He didn’t read it, but since it was addressed to you and signed by J.J., he thought you might like to have it.”

I very much like having it, I thought to myself as I folded the letter and placed it in my purse.  Its presence felt like a tangible weight for the rest of the night, as I waved to Eli as he marched in with his class, as I cheered when the new graduates threw their caps in the air at the end of the ceremony, as I posed for the obligatory family photos outside the theatre.  Soon, I promised both the letter and myself.  Soon I’ll be able to read you, but not yet.

The next morning I sat down with a cup of coffee and unfolded those pages.  I scanned those pages, smiled and refolded the letter.  I tucked it back into my purse and sighed.

The content of the letter isn’t important, and it’s not mine to reveal anyway.  That letter was written 
by a man who died, to a woman who doesn’t exist any longer, either.  Those were the shared jokes that made them smile.  Those promises of never-ending love belonged to the past.

But for just a minute, I remembered what it was like to be that girl, so madly in love with that boy, poised on the threshold of a future that contained nothing but possibility, barely older than Eli is now.  If she had known what was ahead, would she have traveled this road?  I wondered.  If she knew that never-ending love had an expiration date less than ten years in the future, and if she knew that she could save herself from the grief that nearly broke her, would she still have chosen him?  

My eyes locked on J.J.’s back as he sat at his desk at the other side of the room.  There’s no question.  
Of course she would have. 

After all, every single day…I’m still choosing him.