Alone In The Wet Spot

 

What I’d give for one more high note and a squeeze of her hand 

I never imagined that wiping someone’s ass would be an honor. It became one.

Although Karen and I weren’t married, she was my best friend for more than two decades. We raised kids at the same time, each experienced divorce, and cared for aging parents. Through life’s twists and turns we always had each other.

When she got sick, I was the only one who didn’t run away. I didn’t need to stay and watch the ugliness. I chose to.

The guy she was dating didn’t take time to listen to the news. He cared more about having her as arm candy at an office party than about her diagnosis. Her parents wanted a note from the doctor confirming the test results.

Karen called me the day after diagnosis. She needed me to help her understand the news. It took fifteen minutes to convince her to come stay with me and we’d fight the disease together. Three days later Karen was sitting on my deck, overlooking the water, eating the only dinner entree I could make well.

She told me there would be an eventual loss of body control. Essentially her body would stop working but her brain would remain intact. What we wouldn’t know was how fast things would deteriorate. That part of the conversation was dessert.

Twenty years before her diagnosis she was a flautist with the New York Philharmonic. She was among the best in the world. The flute is the only instrument that can be heard above the entire orchestra. With a single breath Karen’s flute told the audience, “You’re hearing something rare. Pay attention.”

That was her super power – getting people to pay attention with her breath, charm, kindness, empathy, humor or a note you never knew existed.

Lou Gehrig’s Disease is a different kind of note. It also makes you pay attention.

I realized early on our journey that I could resent the thanklessness of caregiving or I could consider myself lucky that Karen and I were doing it together.

I chose the latter.

The changes in the first eighteen months were negligible. She experienced some pain, needed minor help walking and there was a consistent parade of doctor appointments. Aside from that, things were fairly normal.

At the doctor’s office Karen and I spoke in Morse code. We held hands and as patients arrived we’d squeeze – one grasp meant, “We know this guy, looks like everything is ok.” Two squeezes meant, “We know this guy. The wheels are starting to fall off.”

What I didn’t know in those early days was there would come a time when other patients would grasp hands when Karen arrived. They would recognize the pretty lady and notice her decline.

Karen spent a lifetime being heard and honored for her genius, not for how she entered a room.

She never wanted that kind of attention.

At home the struggle began with stairs and hardwood floors. The fire department gave us a rope to tie ourselves together when she was going up or down the stairs. I’d be her anchor at the top of the staircase.

Each time we tied ourselves together I prayed that I’d be strong enough to hold on if she fell.

I became an expert at giving morphine shots in the ass. I actually enjoyed this because we were still able to make love and giving her a shot was a twisted brand of foreplay. If you’ve never rubbed alcohol or stuck a syringe in the butt of someone you love, you haven’t lived.

Once I came out of the shower and she had sweated through her shirt. Neither of us could figure out whether it was menopause or ALS. It didn’t matter. I asked if she wanted a new t-shirt, a shower or both. She wanted both.

“Can I ask you a question?” I asked. “Why did you move to my side of the bed?”

“Because I’m caked in sweat and I didn’t want to mess up my side.”

That was Karen logic. Or maybe blonde logic. It didn’t matter. I followed instructions.

I got her into the shower and felt the toll that toilet and shower duty were taking on me. Lifting someone into the shower or off of the toilet was like performing with Cirque du Soleil.

Crawling on the shower floor was like trying to conduct surgery under a waterfall – my vision was blurred, my hands were soapy and trying to lift her was dangerous.

By the time we’d reached this point I knew that the safest thing to do was put her in a nursing home. But every time I entertained the idea it became a non-starter. I refused to abandon her. She didn’t come to stay with me to be put in a home. She came to me because she trusted that I’d take care of her ‘til death do us part.

In a moment of bravery I broached the idea of moving to a hospital. The conversation didn’t go well. “You’re taking me to the place where I’ll die. You understand my disease better than anyone.”

She was right. I knew her needs just by hearing her breathe. In a hospital she’d be taken care of by staff who had other patients. At home I could give her my undivided attention.

I dropped the subject – until she fell down 15 hardwood stairs. She landed on her back in the position of chalk man, the guy the police outline at street homicides.

I didn’t know what to do so I asked Grey’s Anatomy questions – can you feel your arms, legs and neck? She answered yes to all. Then I drew a blank.

Karen called 911 and the EMTs got her to the hospital. Except for a bump on her head Karen was fine but the doctor said that going forward she needed to avoid the stairs.

The fall convinced me that I no longer had the skills to take care of her. I had to make the decision that I didn’t want to make. Her family wasn’t interested, and her friends were busy.

The decision was left to me.

I visited a handful of care facilities. They ranged from ok to pure shit. I picked one that was affordable and close to the house. It seemed obscene that the biggest decision of our lives would come down to money and proximity.

I delayed making the final decision for weeks. I thought if I tried harder I could meet her needs. At least that’s what I told myself. In reality, I wasn’t ready to let her go.

When it was time to move into the hospital I packed her suitcase as if she was going on vacation. I matched her pants and tops and threw in a few jackets to make the outfits look Karen chic.

By this point her ability to talk was minimal so I sat in the closet and held up her favorite outfits. We created a second form of Morse code – if you want to take this blink once.

The entire exercise was a farce. She would end up spending most of each day in hospital garb, which made the care facility experience even more humiliating.

There’s nothing worse than having your ass hang out the back of your gown, especially when you can’t ask for help or cover yourself.

Admissions day was the worst. I wasn’t taking her to a care facility, I was taking her to her death home. She’d never return to our bed to watch movies and eat popcorn.

She’d never cuddle so close that I could feel her breathe.

I’d never get to wipe her ass again.

We were met at the hospital by a porter who took her to her room. It had crappy tan walls with one picture that was so badly faded you couldn’t tell what it was.

I wondered who had been in the room before Karen and how long they lasted. You think this way when you’re surrounded by people who don’t have long to live.

Our third dialect of Morse code was one blink for “Hi babe” and two blinks for “I love you.” How do you blink twice knowing you’re going to leave the love of your life in this dump?

I wanted to hear her talk to me. I wanted to hear her flute soar above the orchestra telling me to pay attention – that she had something to say.

I couldn’t blink. Instead I cried. I had failed. When she came to me I promised to take care of her. Now I was going to leave her behind to live in a world where her brain worked but everything else was broken.

If she could talk I know she’d reassure me. “Babe, you didn’t do this. It’s not your fault.”

That was her kindness.

I sat for a while and debated whether I should suck it up, take her home and try one more time to take care of her.

Who was I kidding – I didn’t have the skills.

I visited her every day. Each time I walked into the room I’d blink once for “Hi babe” then blink again to tell her “I love you.” This routine was absurd because I could talk. But blinking was my way of communicating in our language.

I’d look at her every day and although her body was deformed she was still the most beautiful woman I’d ever met. Even through blinking she taught me to be kind, brave and to realize that when you’re playing the highest note, it’s not yours, it’s merely borrowed. This body wasn’t hers, it was something on temporary loan.

Each time I left the hospital, the passenger seat was empty. I didn’t have anyone to banter with. When I got home I ate dinner alone – usually a frozen dinner or pizza. There wouldn’t be any more meals where we’d talk about a story I was working on and she’d riff a new version that was better than mine.

There was no laughter.

After she died I didn’t know what to do with the stuff in her closet. The pamphlets don’t teach you that.

When I was in the closet I noticed her flute case on the top shelf. I opened it. The flute was gone. There was an envelope with two pieces of paper – a bill of sale and an invoice from the health insurance company.

I wish there had been an IOU for one more high note and a squeeze of her hand.

I know there are a lot of silent readers out there. Don’t be shy — hit drop me an email and I’ll send you a free puppy. (Probablynot),