from the VAULT
It’s funny. I started this project wanting to publish something every Friday, and when I looked ahead to this week’s piece, I realized: oh shit, it’s my wife’s birthday.
And I can’t think of a better way to spend this one than giving it up to my wife, Natalie.
Because after 17 years of living with MS, there’s something she has gotten very, very good at.
She knows when to kick my fucking ass and when to give me a hug.
And sometimes that is the most important thing in the world.
I write a lot about agency. About still wanting ownership over how I do things. About still wanting to struggle sometimes, even when struggling would look completely unnecessary to somebody else.
I still want to participate in my own life.
I still want to be a husband. A father. The guy who figures shit out around the house. The guy who makes the phone calls. Deals with the insurance. Figures out what the hell is going on with the roof or the windows. Notices when one of our daughters is having a problem and tries to help.
Some days I do not want to do any of that.
Some days I would very happily sit in a chair, stare at the television and disappear for a while.
My wife does not always let me.
Not because she doesn’t understand that I’m tired.
She understands better than almost anybody how tired I am.
She just also knows that sometimes the thing I need most is not somebody telling me, “Oh baby, I know. It’s so hard.”
Sometimes I need somebody saying, “No. You can do this.”
Or, “Can you deal with this?”
Or, occasionally, probably some version of, “Stop feeling sorry for yourself and get your ass moving.”
That matters.
Because there is a fine line between helping somebody and slowly removing them from their own life.
And Natalie has spent 17 years learning where that line is.
A while ago, I had family visiting from Trinidad. My cousin and her husband were here, and we had everybody over for a barbecue.
For some reason, I had decided I was going to barbecue 50 pieces of chicken.
I knew it was going to kick my ass.
Natalie knew it was going to kick my ass.
And she let me barbecue the fucking chicken.
My back was destroyed afterward.
My hands were screwed up.
I burned through a ridiculous amount of energy.
And I was, frankly, pretty grumpy for an hour or two afterward.
There were easier solutions.
We could have bought the food.
She could have cooked it.
Somebody else could have handled it.
But I wanted to barbecue the chicken for my family.
That mattered to me.
And she understood that protecting me from the consequences was not necessarily the same thing as caring for me.
Sometimes caregiving means letting somebody struggle.
Sometimes it means letting them pay the bill for something they decided was worth doing.
Then there are the other days.
We were in Quebec City this summer. Heat. Cobblestones. Scooter. A whole bunch of stuff that does not exactly combine into the perfect environment for somebody with MS.
But I wanted to go out.
So we went out.
And at some point she looked at me and said, “Babe, how are you doing?”
And I said something like, “Yeah, I think I need to go back to the hotel.”
And that was it.
No disappointment.
No speech about pushing through.
No trying to squeeze one more thing out of the day.
Just, “Yeah. You need to get yourself back to the hotel. Rest. You can come back out for dinner.”
Go try.
Can’t do it?
Okay.
Stop.
Rest.
Come back when you can.
That’s caregiving too.
Sometimes dignity means letting somebody fight through something.
Sometimes dignity means helping them stop.
And the person beside you has to know the difference.
Natalie is not perfect at it.
Sometimes she can be a little overbearing.
I am also not exactly the easiest patient in the world.
I can be stubborn.
I can push too hard.
I can decide I am going to barbecue 50 pieces of chicken even when everybody involved knows exactly what is going to happen afterward.
But somewhere inside all of that, we figured out a rhythm.
She helps me when I need help.
She leaves me alone when I need to figure something out myself.
She tells me when I am done.
And she still expects me to show up.
I think that last part matters more than people realize.
She still expects me to participate in the life of this family.
She still needs things from me.
She still asks me to handle things.
She still treats me like a husband and a father and a partner, not just somebody who needs to be looked after.
And I think that is a huge part of how I have made it through 17 years of this bullshit.
Not because somebody carried me through all of it.
But because somebody learned when to carry me, when to walk beside me, and when to tell me to get up and walk my own damn self.
So happy birthday, baby.
Thank you for the hugs.
Thank you for the kicks in the ass.
Thank you for letting me barbecue the fucking chicken.
And thank you for knowing the difference.