Thursday, October 17, 2013


When my husband walks past the right side of my bed on his way up the stairs, I like to stick my leg out and stop him, and he leans his buddha belly on my bare foot.  For completely inexplicable reasons, this makes me ecstatically happy.  I'm giggling like a school girl while I press my toes against his soft t-shirt, his warm body filling the arch of my foot.  When we connect in that way it's like I'm grounded, my roots go through his strength and into the earth and I find my peace when I've lost it and become frazzled.  I don't know if it's partly because I'm so happy that I can feel some things with the skin on my feet (even though they aren't 100% normal in nerve perception yet) or if it's just the fact that he used to tickle them all the time and now I like it when he gently cradles my foot against his strong trunk, but whatever it is, I absolutely adore it, and I don't care that it makes him laugh at me, not at all.  In fact making him smile when I do it makes it even better.  "Honey, my foot needs your tummy," is not an uncommon phrase in our lives, and I'm okay with that.


"You can skip this song, honey," I said as the first few piano notes came out of the speakers.  It's my playlist, I like all the songs on it, but some are more mood-specific than others.

"No," he replied, and my mouth fell open.  I can't remember him ever refusing to skip a song before.  In fact, I often have the impression he's not hearing them completely, like the music and our singing in the car is just background noise for his non-stop brain, which is okay by us.  The kids and I sing.  We do it for ourselves, because we like singing; it's okay if he's daydreaming while we do it.

"What do you mean, 'no?' It's a sad song, I don't wanna hear it right now," I countered, sure that he would shrug and comply this time.  Why would it matter to him that much what we listen to?

"I like this song," he said mildly.  "I like to hear you sing it," and I felt myself blush.  Still, after sixteen years of knowing each other, he can bring the hot flush to my cheeks with the simplest of compliments. 

I was stunned.  Of course I have my own favorite songs to sing, the ones I really feel in my heart, and seem the best suited to my vocal range and style.  And the ones that have a nice easy warm-up range, and the ones that really challenge my pitch and control.  I feel like I'm a decent singer, for the most part not unpleasant to listen to, and I love it so much I had to get over my fear of singing in front of others in order to get my "fix" when other people are in my car with me or while I was in the hospital.  I had to learn to let strangers hear me sing, but I mostly sing for myself. 

I guess it's not always background noise for him, though.  Sometimes, he's really listening, enjoying my voice.  I was pleased as punch about it.  "Oh," I said with my shy smile.  "Okay."  So we let it play, Adele's sadly defiant "Someone Like You," and I made it as good as I could make it.  Who wouldn't love a man who loves to hear you sing?


In the next few months, Medicare will become part of my life.  This is one of those milestones I had hoped never to reach.  I wasn't supposed to stay disabled and on Disability benefits long enough to qualify for Medicare.  I was supposed to have completely recovered and gone back to work by now, in that secret inner progress chart of my control-freak life.  I am disappointed, nervous, worried, and hopeful all at once.  How much paperwork will this involve? How much will it complicate my private insurance benefits?  Could this possibly result in my having more or better benefit coverage than I had with just private insurance?  Or could this possibly relegate my private insurance to a secondary role with fewer benefits?  I have a lot of research to do.

Tuesday, October 15, 2013

Everybody Poops (but not like me)

This topic has become so painful, I almost can't write it.  In fact it's been sitting as a draft for weeks.  But when I set out to chronicle this beautiful mess, I said I would tell the truth, and not hide things that are uncomfortable because someone else out there could be feeling like they're the only one.  And because I do not want to be the only one.


Everybody poops, but not like me.

Most people poop so regularly they don't even think about it.  They never ask themselves, did I go yesterday?  How many days has it been since I pooped?  But spinal cord injury has given me what is politely called "bowel motility" problems, which means sometimes I don't poop.  I'm putting the food in, and instead of hopping on the first flight to Colon International (Exit-only) Port, the food is lounging around for an extended stay in the Intestinal Hotel.  Sometimes exercising helps move things along, but not always.  Sometimes I take a stool softener/laxative, and sometimes doing so causes me equal and opposite problems.  Sometimes my medications or diet cause plumbing problems, too.  Sometimes... okay, a lot of times, it is not safe for me to permit even the tiniest flatulence to pass, because doing so might soil my clothing and bed.  You know how it is when you're stuck in a social situation where you absolutely can't fart no matter how badly you need to, and how painful and miserable that built up gas pain is?   I'm like that all the time, Steven Wright used to say.  I'm not like that all the time, but often.  Often is bad enough.

Other people have tough poop days too, sometimes.  Usually experienced in the privacy of a bathroom, though.  Other people don't evacuate their bowel problems into a trash bag-lined bucket, and then have to ask someone more able-bodied to dispose of it.  Other people have never had to work through the transition from diaper to independent toileting while they were old enough to remember it.  We mercifully forget what it was like to have our parents wipe our bottoms, unless they are having to wipe our bottoms when we're in our thirties.  That is unforgettable, for both parties, no matter how necessary and appreciated it was.  And it was definitely appreciated.  I have never before or since been in a situation where I felt so much gratitude and such devastating humiliation, all at the same time. At least I've moved beyond that stage.

Still, there's a lingering odor of embarrassment around here.  I've made the leap to total independence during the day, graduated out of the fantastic daily assistance of the loving family member who's been helping me for more than a year.  But it's not safe for me to dispose of my commode waste myself, so it has to be stored for disposal later, when my husband comes home.  I try to manage the odor with Febreeze, but it's still a constant reminder that things are definitely not normal around here yet.  I wonder when they ever will be.