Comedian, wife, caretaker

I try to keep laughing and not freak out while I take care of my disabled husband.

[itscsterling]

Accepting illness

Ug, what a piece of shit title that is.

I don't accept illness. I really don't. But I have to say that I do, so that eventually, maybe I'll accept that my husband always feels sick.

It sucks to accept anything that's shitty. My instinct is to change it, to fix it, to make it GONE.

Which is what I've done for about 17 years now, and while I know it helps, it hasn't made my husband's chronic pain go away.

So yes, I have a little bit of a control issue. And yes, being married to a disabled man tries my patience and challenges me every day.

I haven't accepted illness. I say that I have, because I want that to be true, but I'm lying. Here's how I know:

Friend: What does your husband do?

Me: Do? What does he do? NOTHING!

Now what is that? Anger? The most pathetic attempt at a joke ever? Avoidance? Low blood sugar? All of those things? Probably.

I want to accept this life with him enough so that when people ask me where he is or what he does, I can just say it, act normal, field questions, move on, and accept it some more.

So I'll work on that.

[itscsterling]

My husband's fine!

Today, as I was walking in the bright midday sun around the track at the high school next door to me, I listened to this moth story.

Storyteller Mark Lukatch tells his story of taking care of his disabled wife. They met when they were 18. They fell in love and the future was bright. He talked about that moment he knew she was sick, the moment he decided he'd stay even though it was so so so hard, knowing it'll never end, and choosing to stick around.

There were so many similarities I couldn't help it. I started crying as I listened. I felt self conscious crying out in public, even though no one was around. Because I don't cry much these days. I'd love to think it's because I'm so very strong, but no. I've accepted a lot, but I've also made myself numb to a lot. So I felt self conscious.  I was wearing sunglasses, but they felt like ugly tears. I knew I was scrunching up my face and my chest hurt so much. 

I met my husband when I was so young - 11. I always thought he was beautiful. I was not - I was awkward, chubby, loud.  We were friends for years and finally got together when I was 18 and he was 19. 

We dated for 7 years before we got married. He was probably sicker than usual when we got married. He's 6'1" and I'm 5'4" and we were just about the same weight. And when he started getting sick, I worked right away at fixing it. I talked to the doctors, the lawyers, his family. But it didn't fix him.  He stayed sick. 

Now that we were married, though, my health insurance would fix it all, I was sure of it. 

Nope. 

It's 11 years later, and he's still sick. After working at getting Disability Insurance for him 4 times over 10 years, he was finally awarded with it about a year ago. Mainly because it meant he'd have health insurance. He'd be looked after. As his wife, I am responsible for ensuring his care. I was laid off, and we had no insurance for almost a year. Now he'd be able to see all the doctors he needed. I cried and hugged the lawyer. He was 36. It was bittersweet - I was happy that my 36 year old husband of 10 years had been labeled "Disabled" by the government.

Here's what he has:

Celiac Disease, damage to his digestive system due to years of undiagnosed celiac disease, herniated discs in his lower back that required surgery, ridicular nueropathy, huge amounts of pain from his broken back, osteoporosis, lots of broken bones and microfractures that never healed properly, migraines about 2 times a week (on a good week), pain in all his joints - knees, shoulders, all of them, inflamed painful skin issues that all dermatologists do not understand, inability to gain weight, muscle pain, jaw pain, digestive issues, GI problems that have required surgery many times. 

So he's had lots of surgeries, and lots of tubes in lots of places. And I've been there, probably so worried and scared that I just added to his suffering. He goes to various specialists many times per week and they are constantly taking his blood. 

Here are things I say all the time.

"He has his good days and his bad days."

"What does he do? He's a musician. I do comedy. We're screwed."

"Sorry he couldn't make it! He has a migraine, he says hello."

"How is he? Good! Good! He's good."

"What wrong with him? A lot - um, like, chronic pain? It's just a lot."

And I hate saying these things, because I feel like I'm lying. And I am.

Here are things I'd say if they didn't make me sounds like a piece of shit debbie downer.

"I don't want to be here because my husband is at home in pain and I want to be with him."

"What does my husband do? Mind your own fucking business. He's sick and I don't want to talk about it. Unless you're Dr. House. Or if you want to give me all the money in the world to hire medical experts to fix him, because yes I'm still holding out hope that could happen."

"What did my husband get me for Christmas/my birthday/Valentine's Day/whatever the fuck? He's sick and he can't work, and I don't make much money, so we didn't spend money on each other, but we hung out, stared at each other, laughed, ate good food we made ourselves because eating at a restaurant is certain death for him, and watched TV. He got me that. Also we made out and he told me I'm pretty."

"Why isn't my husband ever out with me? He's disabled and in tons of pain every day, dealing with what we most certainly would consider absolute hell while we hang out and drink and take our health for granted."

I love him. He's so sweet and patient and gorgeous. And I come with my own issues, and he's healed me from so much.  But of course I wonder what our life would be if his illness wasn't such a life cockblocker.

What we do with our days? Would he be able to work? Would I be more motivated to make money? Would we have a house? Kids? Go out to eat at restaurants? Entertain at our home? Go on double dates? Office parties? Would we just go out into the fresh air of the day, without plans and end up at the beach, or on a hike, or at a flea market? Would we shop for cars together? Would we meet at a bar after work and have a drink together? Would we work out together? Do partner yoga? (probably not - he likes team sports.) Would he play football, baseball, basketball, hockey? Would I be cheering him on at his games from bleachers? Would we go to the movies? Would we travel, would we go on road trips? 

We don't do that stuff. We just love each other and lay low. 

It's not easy, but just writing those questions above made me angry, so fuck it.