Thread by @RachelMcGonagi1

I decided, a week ago, not to tell my husband this most dire part of the heart transplant visit. I told him about *needing* a heart, but not being able to *get* a heart until I took care of those 2 main problems: BMI & Support Network.

But I didn't want to unduly worry him.

https://twitter.com/RachelMcGonagi1/status/1232682208546058240

He has MS, as most long-time readers will already know, but he's also on the spectrum--Asperger's--and his way of dealing with the world isn't the same as everyone else's. But for twenty years, I've been his whisperer. I *grok* him, like no one, he says, ever has before.

My being able to help him in social situations, and "interpret" for him--when I know what he meant to say, or what he actually wants--with doctors, friends, family, store clerks, etc., has been like a lifeline to him, he tells me.

He's terrified of losing me.

I told him a couple months ago that I was putting things in place, via lawyers, etc., in case I died first, so that he would be taken care of. Because right now, I do the household management stuff: paying bills, scheduling appts, dealing with insurance companies, all that fun!

None of those are things he can manage anymore. The MS has eaten away at his short term memory and graced him with processing issues to top it off.

He basically will need a guardian.

This news was unwelcome, but he understands, if he wants to stay in our home, it's gotta be.

Still, when I told him that, I'd naught but the prognosis was, ohhhh...not probably more than 5 years, or which I'd already done 1. But 4 years is still a good long time.

"Less than a year" is considerably...well...less.

I didn't want to add to his burden.

Felt like I was doing him a good turn, really.

But when I saw my New Therapist yesterday and told her about the Portland visit, and then said I hadn't told Husband about the prognosis...she was extremely surprised.

Agog even.

She didn't ask too much about my reasoning, but her reaction was sharp enough that I marked it.

Today, I spoke with the Social Worker Goddess of the megalopolis health center, who is amazing and my savior in so many ways, catching her up.

Told her the same thing.

Her immediate reaction: "Ohh, Rachel, NOOO! You HAVE to tell him!"

I was surprised and said so, and we spoke for another quarter hour. Her main point, which I now agree with, was: by not telling him, I was denying my husband the chance to be WITH me during this time.

The chance to explore his feelings, talk with me about what was happening, what his fears were, what would come afterwards, if anything at all...and most importantly, where to meet, on which car, on the Express Train to Hell.

All that kind of thing.

I realized I was doing to him the same thing my Dad had done to Mom before he died: cutting him out of necessary conversations about death and what lies beyond

Mum was FURIOUS w/Dad for not talking with her while he had the chance. For 3 years, she railed against the unfairness.

I did not...do not want to blindside AND infuriate my husband.

Just one of those is plenty enough to be going on with.

So, tonight, I told him.

His reaction was...measured. Considered. And very supportive. As empathetic as he could be. He held me for a while. Promised he would do whatever he could to help me in my quest for New Heartdom.

I think he's gonna be all right.