This letter came to me last week, and I had to ask Kristen if I could post it. Read it and you’ll understand why.

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Confession: I feel super awkward writing to someone I don’t know. This is the first time I’ve ever done it, and I wish it didn’t have to be because of ALS, but here we go. ALS is making me do things I’ve never done before, and I’m not even the one who’s got it.

I’m Kristen, from Canada…living in England…with my German husband. At 40, he was diagnosed with ALS. Lower-limb onset. Slow progression. That was about a year and a half ago.

Most people can remember the exact day of diagnosis. I can’t. We had a 3-year-old and 6-month-old twins. I was so utterly sleep deprived that I can’t tell you anything about that day, other than I was convinced that my husband was absolutely fine, and didn’t even go to the doctor’s appointment with him. That’s how confident I felt that he was dealing with a quirky neurological situation, rather than a diagnosis with a “life expectancy” attached.

I hate that day, whenever it was.

And so. Despite the world having turned upside down, diapers needed to be changed, bedtime stories read, and bandaids applied to scraped knees. We have no family in the UK, and had recently relocated to a new city. There was no one we could drop the kids off with while we crawled into our bed and bawled. I don’t even know what we ate for meals…there was no one around to feed us. Maybe we ate a lot of chocolate. Or lost our appetites completely. See? It’s a total blank.

It was a surreal experience…carrying on with the routine, singing along merrily to “If you’re happy and you know it, clap your hands!” at playgroups, making small-talk about potty training or breastfeeding in the playground with other moms (or “mums” as they go by here), then going home to another reality which involved hours of online research about life expectancy, the crippling costs of care, and clinical trials (most of which were not happening in the UK).

We don’t talk much about that post-diagnosis time. It still feels fresh, the horror and disbelief.

In all honesty, my husband doesn’t talk much about ALS, period. We have these short, terse conversations where ALS is related, but what I presume to know (if anything) about what it is like to have ALS is based largely on what others have shared about their experiences. Meanwhile…we find ourselves not knowing what to do. Life as an international couple living in a third country was already more complicated than we would have liked. But now, ALS has added a new dimension of complication. We do need to move…as in relocate to either Germany or Canada…but much of the reason we are currently living in the UK is because neither of us really wanted to live in the other’s homeland to begin with. *Awkward*.

The logistics behind a move to either country are mind-boggling. In addition to the routine considerations about employment, moving companies, house-hunting, and educating ourselves about health care, insurance, finances, schools…we have all these immigration applications to complete, and really specific ALS questions about issues such as communication and voice banking. Can my bilingual husband make recordings in two languages? Is one country better equipped to support families like ours? Ultimately, how do we even choose a country? With either location, one of us loses a crucial network of beloved friends and family within close proximity.

Some days it feels like we are standing on a beach, and there is a tsunami coming our way, just on the horizon. We know it’s there, and we’re at the point where we know we can’t actually run away from it. But we’re slightly paralyzed. Kind of shocked that THIS IS HAPPENING. Kind of overwhelmed. Kind of hoping that a helicopter is going to turn up with a rope to lift us up and away, and the whole thing will no longer apply to us. And kind of just wanting to keep standing there, holding hands a bit longer and squinting slightly…because in the right light, we don’t notice the tsunami and we’re just a couple on a beach, enjoying the sunset.

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