It’s Lonely Out in Space

It was December of 2019, one month after our official ALS diagnosis from Hopkins. Chris and I had just gotten home from a neighborhood Christmas party, and he was a little drunk. He sat on the side of the bed in his boxers, hands on his knees, head hanging low.

“You okay?,” I asked as I walked out of the bathroom.

“I feel…,” he began as he choked up, “I feel like I am floating in space. And you are all here on earth and I don’t think I’ll ever get back to you…”

I walked over to him, and wrapped my arms around him tight.

“Oh, honey…” was all I could utter, before the tears came streaming down my face too.

I could have told him that he wouldn’t be alone on his journey, but I knew that wasn’t true. There are certain things in life that you have to face by yourself, and dying is one of them.

Grieving, I’m learning, is another. Facing depression is also on the list.

I’m not saying a person can’t be supported while going through these things, but just that ultimately the experience is yours and yours alone. They are all Big Things to deal with, and sometimes make it hard to relate to the people around you.

Ella is still struggling with crippling depression. She’s been accepted into the day program at the local mental hospital, but she’s on a wait list.

A wait list. For suicidal teens. If that concept doesn’t punch you in the stomach with our mental health crisis, I’m not sure what will.

So she’s been home. And while she is concerned about missing this much school, she also doesn’t have the motivation or the ability to do anything about it. She’s fighting a very large demon, and that’s taking up all of her energy and brain power right now.

She told me last night that she hates being alone because it gives her time to think too much. Unfortunately it’s tax season so I’ve been working almost every day, but I know that I can make some adjustments to be home more. I can go in early while she’s still sleeping, and then bring work home by 10am to finish up. It’s not that she wants me to do anything for her, but having me in the house with music on and sitting nearby is just enough of the distraction she needs.

We are also working on getting her physically healthy. When we got her lab results back, she was critically low in all things iron related. She’s taking an awful tasting supplement at night, and eating Total cereal for breakfast every morning, and after two weeks, is feeling a little less tired. Not great, but better. I’m looking into getting her an iron infusion to speed things along as low iron has also been linked to depression and I want to attack this beast from all sides.

But while we wait for her turn in the day program, she’s facing her grief, her apathy, her deep dark thoughts…. alone, without the tools to fight. It’s a tough road. And as a parent, it’s excruciating to watch.

Which probably explains my own sudden rise of depression and grief. I keep having dreams – stressful, not happy dreams. Often my kids are little, and Chris is in them and he’s still sick. I dreamt about my 95-year-old grandfather (who passed 17 years ago) driving my babies, and then I even had one about Jurassic park type dinosaurs chasing us. I am clearly trying to keep everyone safe and I can’t.

As absurd as the dreams are, I often awaken confused. Then it hits me.

Right. Chris is gone. And Ella’s depressed. Gotcha.

I was expecting the grief to hit me at some point. It’s like trying to outrun a tidal wave and at first it was easy, but now it’s creeping up my ankles and making me stumble.

I am way more teary than last month. Well intentioned people ask how I am, and I suddenly choke up at the question. Yes, I still see my therapist and have a ton of good friends around to support me, but ultimately this experience is all mine. It’s just hitting me a little more each day.

Like when I took the girls out to an early dinner last night and there were cute groups of old couples everywhere. Just reminds me that I won’t get to grow old with Chris. Or when I spend time with some of Chris’s friends and think how much I know he would love to see us together. Or when I get into bed at night and can still see him sitting there on the edge in his boxers, hands on his knees, heading hanging low.

He felt like he was floating in space. In a vast darkness. Alone.

I get it. And so does Ella. It’s sometimes hard to feel connected to the outside “normal” world when you have these sorts of battles raging in your soul. We had to let Chris go into that darkness. The difference for Ella and I is that we are tethered here, and we can hopefully find our way back soon.