I wake up sad lately.
I open my eyes and the summer sun is pouring in the windows, and Chris is in the bed next to me. But for the first hour or so after waking, I can’t shake the feeling that something bad has just happened to me. I can’t find my way out from under the weight on my chest.
It was the same in the weeks after Chris was first diagnosed. Sleeping was the escape, waking was the nightmare.
The other day, near the end of a session, my therapist very generously told me, “You are doing everything right.”
It was kind of her, and I am really, really trying every single day to be present, to be grateful, to focus on all I have. I read, I meditate, I go to therapy, I go outside — all things I know help me when being in my own head doesn’t feel good. But the reality is that permanently living on the edge of loss, that having mortality constantly in the forefront of your mind, that seeing your husband play with your kids and feeling your heart swell with love and break from fear at the same time is, as I told my therapist, really fucking hard.
And now I’m back to waking up sad, and after a few weeks I figured out why — I am terrified Chris will lose his voice.
This hit me hardest after I listened to the wonderful hour-long conversation Chris had with Craig Custance on Craig’s podcast The Full 60 back in June. I listened while painting our bedroom (I did the entire interior of our house because busy hands equal a quiet-ish mind) and when the hour was up, I sat down on the floor, roller in hand, and cried and cried.
Chris has spent a lot of time talking about ALS in the last months, about his diagnosis and his family history and what this disease has done to us and what we are trying to do to it. He talked about all of those things with Craig, too.
But then, after they touched on all those hard topics, he just talked.
He was just Chris, not Chris who has ALS. He laughed and told stories that I’m so familiar with that I said the punchlines along with him as I listened. And when it was over I felt buried by the fear that someday he might not be able to tell those stories, that someday I might not hear his voice, his laugh, the way he says my name.
I have grieved the idea of loss so much in the last year, and within my fear of the greatest loss — the loss of Chris — have come these microcosms of grief. The idea that he might lose his voice has been one of the hardest yet.
When Chris’ smile started to change in April it forced us to start preparing for a worst-case scenario. Since he was diagnosed we have lived with the mantra that we would believe in the best and plan for the worst — believe in the drug completely but also live with a very real awareness of this disease.
That led us to meetings about wills and financial plans and conversations about who would take the kids and where we want to be buried and everything that makes you want to stick your fingers in your ears and run away.
I’ll never forget the meeting with the financial planner where we looked at a chart that estimated Chris would die at 42 years old, and I would live until 80. It showed what losing Chris would mean for me and the kids financially, how much I would have to save, when I would have to go back to work and how much that job would have to pay in order for me to make ends meet and send the kids to university and so on. It was all logical and necessary, but when I saw where Chris’ life ended on the chart and how much of mine, potentially, remained afterward, I couldn’t breathe.
There were all my years without him, laid out on a computer screen, and when Chris’ smile changed it felt like a distinct step closer to all those years where I exist as a solo line on the chart.
We don’t know for sure what the change in Chris’ smile means, but we know what it could mean. When ALS progresses to your face, the fear is that it will continue to your tongue and your throat. And when you lose function there, you lose the ability to talk and to swallow.
So we knew our next step was to preserve Chris’ voice.
We do that through voice and message banking, which means recording Chris saying common words and phrases, along with longer sentences and sayings that are unique to him, in order to create a digital voice. That way, if Chris should lose his physical voice one day, he can use technology to “speak,” digitally, in his own voice. In other words, he would be his own Siri.
That this technology exists is amazing. That this medicine has slowed Chris’ ALS down enough that we have to time to record and preserve his voice is a miracle. And that we are doing this at all serves to elevate our already-constant awareness of what’s at stake.
And so, to be honest, these last months we have both been sad. Every hard day is made harder by the knowledge of what might lie ahead, and every good day is made bittersweet by the same threat. We try to grieve what we’ve lost, but the reality of ALS is that loss is not static. This disease is always there, threatening to take away more.
It’s hardly taken anything from us compared to what others have gone through, compared to what we might face in the future, but some days I still feel totally trampled by it.
What will our lives look like if Chris can’t talk? If he can’t swallow?
I’m not sure exactly. I know it would be hard, but I also know that it won’t happen today, and it won’t happen tomorrow.
So for now we will keep doing the only thing we can do, the same thing we’ve done these last 14 months — we will wake up each morning and look for the good, knowing that if we are diligent, if we don’t give up and don’t give in, we will always, always find it.