#11: A Post I Hoped I’d Never Write

Dear friends,

For so many months now I have updated you with two words that have meant everything to us — no change. Being able to say that for so long has truly been a dream.

But today I’m coming to you with a different message.

About a month ago I took a photo of Chris and our daughter when we were outside sledding, and I noticed his smile looked different. I mentioned this to him offhand, thinking it was just the photo.

Unfortunately it wasn’t.

Chris has experienced a slight droop on the right side of his smile. If you know him well and you’ve talked to him recently or if you talk to him in the coming days or weeks, you might notice it, too. Chris is a genuinely happy and positive person who loves to laugh and smiles easily, so a change in that smile can be hard to miss.

We have spent the last weeks sitting with this and trying to sort out what it means. The likely answer is that it is some slight progression of the disease. If so, it is the first progression he’s experienced anywhere in his body outside of where his symptoms first presented in his right hand and forearm more than one year ago. And that would make two things true.

The first truth is that people with Chris’ very aggressive form of ALS die, on average, 6-18 months after being diagnosed. That this is the only progression he’s seen 11 months since diagnosis is a true miracle. We know we have already been given the gift of time, and we are grateful for every single day.

The second truth is that, despite the miracle already working in Chris’ body, this has been a crushing development. As the weeks and months since Chris started the trial have moved along and his health remained so stable, we had started to let ourselves believe that maybe this drug would really be the magic bullet that would stop Chris’ ALS in its tracks, that he could live the rest of his life with no further losses to this disease, and so this has taken us back to where we were one year ago.

As Chris said to me, “It feels like I’m being diagnosed all over again.”

This is the reality of living with an illness like this.

The other reality, and one that we happily accept, is that Chris remains a walking science experiment. This change could be just a blip, a small bit of progression that will stop where it is now. After all, the most likely thing to happen after Chris’ hand and forearm atrophy, doctors tell us, would have been progression into his right shoulder, but that hasn’t happened. If anything, Chris believes his right shoulder is stronger today than months ago.

And that’s the thing — no one knows what this means, or if it means anything at all, in regard to his illness or how the drug is working in his body. What we do know is that we have doctors with decades invested in this field expressing to us genuine excitement that this medicine exists and that Chris is receiving it.

We also know, after navigating this last year, that there are two ways to live life. One is focusing on everything you have, right here and right now. The other is focusing on all you have to lose. It is easy to slip from the former to the latter, but we continue to remind ourselves to stay present and grateful and — above all else — hopeful.

Chris and I talked about whether to share this development and what we decided, really, is that we will not hide from ALS. We will walk straight at this with our shoulders back and our heads held high, with the words of love and support from so many of you propping us up.

We are brave enough. And we fight on.


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