Tuesday, May 25, 2010

About Our Life

What is it to live with someone with the kind of disability my husband has?

There are, literally, hundreds of things I think of, notice, or do every single day that I never considered before I started to live with Brian's injuries.
I am painfully aware of the location of handicapped parking, associated ramps and crosswalks. Curbs frustrate me. Stairs are obstacles to avoid, while everyone around me trods upwards without a second thought.
Restaraunts become obstacle courses. Hotels are potential nightmares. Car shopping takes on an entirely different light. Furniture shopping is never the same.
Can Brian get out of this chair when he has his legs on? Is it comfortable enough to sit in but stiff enough to lever himself out of? Can he transfer in and out of this chair if he's in his wheelchair? Where exactly will we put it? Will I be able to arrange the house if this chair is in it? Will it get wrecked if his wheelchair tires rub on it?
White trim in houses is a pain for that last reason... and the guys who built my house gave me prepainted trim in every last room. I have layer after layer of wheelchair tire scuffs on most of the doors and doorframes, with really no way to stay ahead of them. Give me a nice stained hardwood anyday, those are easier to clean (or easier to hide stains on).
Is the carpet too plush for him to wheel around? Can he get the bathroom door shut behind him? Does the door swing out or in? How sturdy are those handgrips? How sturdy is that shower bench? Is the shower really nonslip, or are they lying? We found out the shower bench in our own home wasn't nonslip the hard way - Brian shooting off it like a greased pig when he was covered with soap in the shower.

Did you know you remove most of your excess body heat through your head and your feet? Its a surface area-to-volume idea with your feet; all that skin and not a lot of substance. Without feet, Brian's body temperature runs a full degree higher than mine all the time. He constantly overheats. Overheating means a lot of sweating. Sweating means he loses the air seal on his prosthetics, his legs start moving around on his stumps, and he starts getting chafed and blistered. He literally can't function if he gets just a little too hot.
So our air conditioner breaking is cause for extreme, immediate alarm. Booking-an-emergency-hotel-room kind of alarm. We have a second air conditioner, a tiny one, that services only our bedroom. I'm learning what kinds of bedding keep him cool and me warm. I'm also collecting a strategic reserve of socks I'm comfortable sleeping in, and I have a heating pad that hangs on my headboard all winter, in case Brian gets too hot and cracks a window when its below freezing outside. Which is almost every night - I put out a lot of BTUs.
My heat output means we can't snuggle in the summer. Not without a $400 electricity bill to cool our room down to like 60 degrees every night, at least.

We never fight over the thermostat in the winter - I like to conserve energy (and save on heating costs), he likes to be cold. So 65 or so isn't so rare at our house. My office is kept a bit higher, but only because I hide in here. Our bedroom is never above about 60 in the winter. Getting out of bed is a bitch.
The summer is a constant battle. I don't want to impoverish us, he wants to survive. Our middle ground is far closer to his ideal than my own, but that's a lot of the reason we live in New England and not, say, Texas.

We can never live near my family. The summers are too hot there. We can scarcely visit in the summer, and when we do, Brian hides indoors the entire trip.

I live for pyrotechnics.
The only full-on PTSD flashback I've ever seen him have was triggered by fireworks.
I am no longer working towards my pyrotechnician license, to put it lightly.

We always get hassled in airports. He can't get thru security without a full patdown and explosives check, just because his feet are metal. Airplanes are hell, because he can't bend his knees a full ninety degrees with the prosthetics on, so the limited leg room is a huge issue.
Ditto with stadium seating in concerts and sporting events. We don't go to many, simply because we end up in standing-room-only (not gonna work, he can't stay standing that long without moving), seats without enough legroom, or we spend a fortune on roomier seats. A fortune we don't have, because we're on a very fixed income. I will probably never see a game in Fenway.

If he runs out of TP while he's sitting in the bathroom, I get paged - he can't get up and do the spraddle-walk with his pants down the way I can. And he sure isn't getting into the wheelchair with a dirty bum. Ew.
With his massive supply of feet and legs and sleeves and liners and extra components, he needs more closet space than me. If he needs to put on nice shoes, he has to spend a good ten to fifteen minutes adjusting his ankles for the new sole depth.

I could write this forever. Ingrown hairs become life-threatening. Visiting family becomes a nightmare (Auntie, I can't fit in your bathroom, we can't come to Thanksgiving). Friends start shopping for houses with your occassional visits in mind, which is flattering and horrifying and embarrassing all at once. Doctors visits are never ending, and the doctors are 45+ minutes away at the VA hospitals.

TBI means you lose impulse control and memory. He doesn't always remember the stupid shit he buys. I ask him about a charge on the card and he doesn't remember it, so I go on full fraud alert to find out it was a TShirt he forgot ordering.
I would love to work. Love to. We could use the extra income, too.
But I need at least one full week day off every week, to stay on top of bills and budgets and home repairs and legal concerns and managing Brian's schedule. And by managing his schedule, I mean people wanting him to come to this parade and that fundraiser and throw out the first pitch at a little league game and come to this state on this day to meet that person for whatever it was they did that we apparently have to congratulate them for. People send us random things - artwork, red-white-and-blue blankets (which totally don't match my decor), gifts and random offers that I long ago gave up on writing thank-you's for or even accepting. Everybody wants something from Brian, everybody needs him to validate them somehow, and I'm the one who sorts thru it all.
I also need at least half my weekends off, to do the fun things. A friend's Alive Day celebration. Rockaway's water sports festival. Vail Veterans program. Special Olympics. Weddings. Weekend escapes. The rest of the world plans things on weekends, so if we want to go, I need my Saturdays and Sundays free.
I have yet to find a job that offered that sort of schedule, and I was even remotely qualified for.

So I spend my time on repairing our house, escaping into books, and slowly becoming a decent knitter.

I don't have a 'Someday' anymore. There isn't some magical day down the road wherein Brian is completely well again, has a perfect memory and unlimited physical abilities. No, as my beloved husband gets older, he will need more from me. I will be glad to give it. This is my life, and I love it. I love Brian to distraction, and I would do anything in the world for him. I will continue doing everything he ever needs me to do, and I will continue to love it. It's far better than the alternative.

1 comment:

  1. I enjoyed reading your post ... It always amazes me there are people out there who are willing to go above and beyond for love instead of bailing (like so many peeple do). God bless you.

    And brrrr, 65 is cold!