It's a delicate issue, right? I don't want to spill the details and I'm sure no one wants to hear 'em. And yet, sex is important. Not only from a purely logistical point of view - I mean, if you lose your muscles, how do you HAVE sex? Always on the bottom?? Geez. I call unfair!! (I kid, a little...) But also from the point of view as a care taker. I just wrote how much I love Luther but when I put on my caretaker hat, sometimes it's hard to jump in to romance girlfriend mode.
We were at Snuffy's Malt Shop last night, having this sex discussion over burgers and, of course, malts. Last week, Luther lost three pounds without changing anything about the way he eats. So the dietitian said EAT. Eat a lot. Keep up your weight. (For my part, this is probably a whole 'nother blog post at another time....) So Snuffy's seemed appropriate.
The table behind us was having a discussion about math! The table next to us was on a date. We were talking about having sex with a disability. Those are the surreal times where you realize life just moves along no matter what your situation is.
The thing about ALS is that you do become paralyzed. However, many times being paralyzed also means a loss of your senses, too and you don't feel anything. In the case of ALS, you still feel stuff. If a mosquito lands on your arm, you'll feel the itch but you can't itch it.
This is a great description from the blog linked above by Tom Ohlson who has ALS:
In ALS, the motor neurons die, which in turn causes the muscles to waste away. For the most part, your senses, cognitive abilities, bowel, bladder, and sexual functions all remain intact, but the rest of your body wastes away until you are pretty much a complete vegetable.
As an example, you can smell the food near you, see and hear the fly buzzing around the food, feel the fly when he lands on you, and even taste the little bastard when he flies into your gaping, drooling mouth. Because you still have all of your mental faculties, you are really pissed that you can’t do anything about that damned fly.
To add to your frustration, you’re also very horny. The disease hasn’t affected your sexual desire or function, but because you now have the mobility of a potted plant, you can’t do anything about it. Even if someone took mercy on your condition, you are probably no longer in the mood because you can’t get the taste of that cursed fly out of your mouth!
So last night at Snuffy's, disabled sex talk. It felt weird and good and awkward but necessary.