Words are flowing out...

I just read that Brooke Eby recently passed. She'd occasionally pop up on my FB reels. One of her many gifts was finding humor in any circumstance, especially with her own ALS. She did a ton of advocacy work with the ALS Foundation. Her reels taught what ALS is and how it deteriorates a once thriving, healthy body like hers while the mind remains intact.

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Youngest SIL's husband has ALS. We haven't seen him since January. The only reason why he’d made an appearance was because he was still mobile with the walker. He's in a motorized wheelchair now. They had to sell their house because the doorways were too narrow to accommodate the wheelchair as well as his other medical accoutrements.

Their older son abandoned his fledgling career to try out for a NHL farm team even though he did most of the literal heavy lifting caring for his father. This news from MIL sounded weird until we remembered that BIL’s unrealized lifelong dream was to play professional hockey.

Their daughter is a nurse and refuses to visit because she doesn’t want to see her father *like that*. She sees enough of it at work.

Their younger son is a college junior. He wants to be a professional hockey player but his numerous injuries over the years have probably backfired that dream.

Youngest SIL refuses to talk to anyone in the family save her mother because she neither wants questions nor advice, and especially not pity. MIL tells us SIL is petrified she won’t be able to work at some point. She drives her husband and MIL to Mass every Sunday in the specially equipped van. MIL becomes upset whenever the priest pays more attention to BIL than her.

MIL has never been adept at dealing with her adult children's emotions so whatever Youngest SIL tells her is automatically passed to the other adult children in varying degrees of Such a shame while clicking her tongue against her teeth and shaking her head. She once confided to me that she has no idea how to respond to SIL.

She just wants you to listen.

I can’t handle this.

You have to. You’re her mother. Who else would she turn to?

Nobody can predict how long BIL will remain on this mortal plain because ALS has its own timetable. There will be a day, though, where he will be bedridden, barely able to speak, much less breathe with the ventilator. At some point the ventilator won't be enough to sustain him.

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SIL hears the ventilator’s quiet, whooshy exhale as she nears the bedroom. She peeks in, then quietly approaches the bed as the ventilator whispers a soft inhale.

He’s asleep. Oh thank god!

She draws a deep breath, her shoulders releasing, then collapsing.

Tears puddle her eyes as she darts into the kitchen before sobbing. She picks up her phone and taps a number.

I don’t know how much longer I can hang on, Ma. I don’t know. I feel like I’m going crazy. I have to do everything by myself now, and that includes mowing the lawn and trimming the bushes in the front yard because I can’t hire anybody to do them because what if they see him? Then what? When I take both of you to Mass every Sunday I pray that God will take care of him, of me, of us. I pray that I can do everything expected of me because I am his wife.

You need to pray for hope because hope is the only thing you can hang onto.

How can I pray for hope, Ma? He’s going to die from this at some point. There’s no cure. How can I have hope?

You have to have hope. Hope is what you live for.

That doesn’t make any sense! How can you say that? How can you? Are you going to be praying for hope when you’re on your deathbed?

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We want to call Youngest SIL because we’re concerned. We know what it’s like taking care of a loved one, thanks to my mother who didn’t have ALS (she’d call it Lou Gehrig’s Disease) but whose intellect gradually vanished into the stratosphere. My husband is the only other local adult child.

If Youngest SIL sees our numbers pop up on her phone, she lets us go to voice mail.

We knock on the door at the new house and there’s no response.

My husband asks his mother how SIL is doing.

The same. Always the same. I don’t know what else to say. Did you happen to catch the Bruins game?