#28: What Remains

Last week you sat at the table with tears in your eyes. You looked at the kids sitting at the island and said, your voice trembling with sadness, “I’m sorry guys. A dad is supposed to be big and strong.”

Our 8-year-old climbed down from her stool and walked over to you. She put her arms around your skeletal shoulder blades, pressed her little forehead against yours, looked into your eyes and said, “You are strong Daddy. You have a hard life. All we need is you here with us. That’s all we need.”

We cried. You frowned. What a cruel thing that the only expression your face can still make is one of sadness. 

After two weeks in the intensive care unit and two times on life support, you made it home for Christmas. 

I was so glad to have you back that I didn’t think about how sick you’d still be, that it takes about one week of recovery for each day someone is on a ventilator and you were on a ventilator for six days, that while you were in the ICU your ALS sped up and ate away at the good arm you had left.

I didn’t realize we would both be awakened by constant nightmares — you of the vent and ICU trauma, me of the night you were intubated and I slept through two phone calls and seven text messages begging me to wake up, of how I spent two days while you were unconscious staring at the last text you sent me, wondering if I’d ever have the chance to say how sorry I was that I missed your calls. 

“Being intubated,” you wrote. “Tried to call. I love you and the kids so much.”

Before the ventilator, you were still so capable. Now, we can’t tell where the ICU weakness stops and the ALS weakness begins. Now, we are scheduling meetings with home care and respiratory therapists. We wondered if you’d ever drive again, but we didn’t, really. We knew the answer. You tried one afternoon. The kids were so excited to see you pull into the garage in your car. Later that night, after they’d gone to bed, you looked at me and said softly, “It didn’t feel safe. I can’t do it anymore.”

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Now we will sell your car and say goodbye to a future where two parents shuttle their kids around, where life is beautifully, blissfully busy, where we kiss each other goodbye at the door and go in different directions in order to get it all done. 

Now, everything that makes our family go runs in one direction — through me. 

In a span of three months this disease we had outrun for three years caught up with us. 

We ran so far ahead at the beginning that at times it felt like we would never slow down. Then went your smile and your swallowing. Slowly but steadily, we knew we were losing ground. In October you ended up with a cold that turned into pneumonia and 10 days in hospital. The disease crept closer. With every little thing that got harder — pulling up your pants, putting on your shirt, brushing your teeth, doing your hair — we could feel it behind us, breathing down our necks. 

Finally, in December, you caught a flu that led to pneumonia that led to life support, and the disease overtook us.

People keep wondering if you are “better.” We don’t know how to answer. Sure? Maybe? Not really? With this disease, there are, hopefully, degrees of recovery from a crisis. In other ways, there is no coming back.

When you came home from the hospital you needed my help with everything. In a miraculous turn, your lungs healed quickly. The healing stopped there. ALS decimated your already-ailing left shoulder and took out your left bicep and tricep as well. With this disease, those losses are permanent.

“How is Chris?” people want to know.

I stumble over the same question I ask myself a thousand times a day. What they want to hear and what they don’t understand about this disease hang in the space between their words and my response. 

“That’s complicated,” I want to say. “That’s a loaded question. How much time do you have? Do you really want to know?”

Here is the truth: you’re sad. We’re scared. This is lonely. Many days it feels like there is no light at the end of the tunnel. There is no winning against this disease. There is only learning how to live with all the loss. You are facing a lifetime — however much longer that lifetime is — of getting worse, of being able to lift a glass to your lips one day and not the next, of taking sips of water one day and not swallowing anything again forever the next, of adjusting your pajamas in bed one night and asking me to do it for you the next. 

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People don’t want that truth, and to be honest very few of them deserve it. While my brain spins through all of those thoughts I usually offer a small smile and say, “He’s OK.”

“Chris made it home for Christmas,” they say. “That must have been so wonderful.”

Here is the truth: it was the hardest two weeks of our lives. Harder than the ventilator, harder than the ICU. We didn’t celebrate Christmas. We survived it. There was no energy for cooking a big meal or baking and decorating cookies. We were together and, yes, that was a gift, but we were barely holding on, hardly keeping our heads above water. 

After every single impossible-feeling day we went to bed and I stared at the ceiling and wondered, “Is this life now? Is this all that remains for us?”

I’ve never seen you as shattered as you were during those weeks. Grief and loss hung so heavy in our home. The air was stale with it. I wanted to run away so I could take a deep breath. So did the kids, begging for playdates and errands and anything for even a brief reprieve. We wanted to escape, but we couldn’t bring ourselves to say what that really meant.

We wanted to escape from you. 

There are times when it is impossible to separate the disease from the person it is happening to, and we were in the thick of one of those times. The guilt that surrounds that feeling, the one of wanting to get away from the person you were so terrified of losing only weeks before, is confusing and consuming. 

For years after your diagnosis, I would catch myself saying, “Oh, Chris never gets sick.” Now, you were. You — the person in our family who has always pushed for adventure, for playing in the snow, for trying something new and seizing the day — laid on the couch without even the energy to turn on the tv and watch hockey. Just waking up in the morning drained you for the day. 

You wanted to escape, too, of course, to run away from what this disease has done to you, to escape to the time when you could brush your own teeth and put on your own deodorant, sure, but, really, you wanted to go back to the time when you walked in the door from work every evening and scooped up one kid in each arm as they screamed your name and you laughed and I laughed and we all hugged and in our minds we thought, “Look at this life we will have together so long as we both shall live.”

Back to that time. Back to when you were whole. Back to when we were whole.

For the first week you were home from the ICU, as you called to me for help, as our kids grappled with misplaced anger and my own grief spilled out in misguided ways, I wondered if I could handle this life. I stood in the shower and cried. I sat in my car and cried. I cried alone and I cried with you and I cried with the kids. I sat and thought about our future and couldn’t see anything that wasn’t overshadowed by desperate, crushing loss.

Then, one day, I heard our daughter giggle.

I looked up and saw you standing behind her, your arms on her chest, dancing her around to the song she was playing. I thought about how bleak it all seemed only days before, only hours before, how it felt like this life would be too much, too hard, too sad, too impossible, how it felt like the disease had taken so much that I wondered what good could possibly still remain.

“What is left of the life I thought I would have?” I wondered when we sat and talked about how you would work now that you cannot drive or put your coat on or attach your feeding tube or button your pants.

“What remains of the life you thought you would have?” I wondered as I watched you try to lift a cup to your mouth, as your body fails you so constantly but your brain remains so sharp.

I watched our little girl giggle and dance with you, and I thought about what could have been only a couple of weeks before. I remembered picking up my phone and seeing those texts, those missed calls with no voicemails, my mind spinning, my body shivering even though I was tucked into our warm bed. I called the hospital and talked to one of your doctors. He started to explain what happened. I interrupted him. 

“Is he alive?” I said through sobs.

Later, when I wanted to crawl out of my own skin because the sadness and fear made my own body feel uninhabitable, I picked up my phone and wrote to you.

“We are so sad Chris. Please wake up. Please don’t die. We need you. I don’t know what to do without you on the other end of this message. I feel lost. Please, please, please love. Please wake up.”

No one survives ALS, but you survived six days on a ventilator. You woke up. You didn’t die. You came home. 

I watched you dance with Willa and remembered what she had told you: “We just need you.”

What remains of the life we thought we’d have? 

The most elemental part — you. 

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The world kept spinning and we kept going and, as the days turned into weeks, this new way of life started to feel a bit less overwhelming until one day I woke up and I knew I could fight against this reality or I could surrender to it. 

I choose surrender. I choose you.

How will you work now? How will you exist in this life? You’ll do it with me by your side. It will not always be pretty or smooth or full of grace and unwavering patience. There will be those things, to be sure, and there will also be frustration and curse words muttered and hurtful things said in the middle of the night when we are exhausted and coming apart at the seams, but when the morning comes again, we will start anew, together. 

Together we make one fully functioning human. 

Together is the only way, but, really, hasn’t it always been?

I have been wrestling the last few months with the notion of hope. 

When you were diagnosed 3.5 years ago and we joined this clinical trial, hope meant stopping this disease. Hope meant a miracle that would allow us to be the first family to stare ALS in the face and say, “Yeah, we’re opting out, thank you very much.”

Hope meant outrunning ALS.

Then I walked into the ICU that morning last month and you were there but you weren’t. A tube was sticking out of your mouth, your eyes were closed, your body didn’t move or flinch, and I knew everything had changed. I went home that night and picked up my phone to tell you how the kids were doing, and I remembered you wouldn’t answer. 

There had been times since you were diagnosed when you were away on a trip and the kids and I were doing things without you, and I thought to myself, “This is what it would be like.” Until I sent you those first desperate text messages knowing you would not reply, that you were not on the other end of the line and that I was now completely untethered, I never truly understood.

At 8 years old, Willa understands. All we need is you.

I stepped out of your room when the doctors rounded that first morning you were unconscious and the doctor with the kind eyes looked at me and, in describing your condition, he said, “For someone on life support.” I felt like I’d been hit in the chest with a sandbag. I tried not to show that I couldn’t breathe. I tried to stand there and look like this wasn’t a revelation to me. 

Life support.

How was it possible that 3.5 years after you were diagnosed with a terminal illness, I hadn’t realized, until that moment, that you were dying?

When the doctors moved on to the next patient I walked back into your room and closed the curtains and held your hand and cried. 

Earlier that day, when I drove the kids to a friend’s house before school, with the seemingly endless darkness of the winter morning making it feel like maybe the world had stopped, too, when your lungs quit working on their own, our son asked me, “Will Dad’s breathing get better? When will Dad wake up?”

I reached for his hand and looked in his eyes and told him the truth, because what else is there? 

“I don’t know, buddy. I hope so, but I don’t know.”

In all of this there has not been a more painful realization than this one: we cannot actually protect our children from the most painful parts of life. We hope we can, but we can’t.

Hope. There’s that word again. In the darkness that swallowed us up after you came home, hope was on my mind so much. I have put so much stock in hope. In messaging with our friend Steve Gleason, who does not ascribe to hope, he told me that the opposite of hope is fear.

He was, as usual, exactly right. The other side of my hope that the clinical trial drug would stop your disease progression was fear that it wouldn’t. The other side of my hope that you would be strong enough to come off the ventilator was fear that you wouldn’t. The other side of my hope that you won’t die is fear that you will. 

At its most elemental definition, hope is just a response to fear. We hope good things will happen to us because we are scared of the bad things.

Still, in the years since you started the clinical trial, in the losses we have endured and in the acceptance I have worked toward, my definition of hope has broadened.

Hope, for me, isn’t just about fear. It’s also about understanding and accepting the full scope of what is happening to us and still finding the good in life. It’s in that bible verse from Psalms that I love so much: “Even in laughter the heart may ache and joy may end in grief.” It’s in hearing our daughter giggle as she dances with you and in watching our son score a goal and look into the stands at you as he beats his fist against his chest. It’s in the people who show up and lift us up, the ones who drop off meals and run errands and walk beside us and cry with us and don’t turn away from our pain. 

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Your recovery from the ventilator wasn’t linear. You were extubated and then had to be re-intubated because your lungs weren’t yet strong enough to breathe on their own. 

The morning after you’d been put on life support for the second time, I woke up and told the kids. We cried together and held each other. They asked questions and then they brushed their teeth and packed their backpacks and got in the car to drive to school. My eyes were puffy and swollen from lack of sleep and so much crying. My body ached with physical manifestations of grief, but when I backed the car out of the garage and saw the world waking up around us, I surprised myself with the words that spilled out of my mouth. 

They were words you would have said. They were perspective you taught me. 

“Oh,” I said, “look how beautiful the sky is.” 

And then, maybe for them, definitely for myself, I added, “The world is still beautiful, even when it’s sad.”