What's that over there?

Things get better.  Not always, of course, but lately there has been a 'getting better' trend here. Hopefully I didn't just jinx myself.

Swallowing practice is one of the hardest things I have ever done.  You would think something you have done  instinctively all your life would be easy.  Oh, not so.  Tilt your head this way and that way.  Hold your airway closed.  Don't tip so far the water goes up your nose.  Don't gag.  Thus far I've had three successes in roughly 15 tries.  Not that great an average.  Since I have no tongue to trigger swallowing, I have to get those muscles to work without that cue.  I'm also fighting against the tide of the fluid going the other direction. I am thankful for my text message nudge -- she knows who she is -- because sometimes something this difficult is hard to make yourself practice. I used to think sounding crappy in a practice room was embarrassing; not nearly as bad as spitting water all over yourself, or worse, someone else.

The doctors all seem secure that the swelling will go down eventually.  It seems like forever to me.  It isn't so much what it looks like as what it feels like.  So tight.  Hard to turn my head. Stiff.  It doesn't really hurt, although on occasion my slowly wakening nerves have given me a taste of what it will feel like.  Fortunately I've been through this before.

I am slowly adding activities back into my life.  I'm back to the gift shop, with Lesley's and the crew's capable help.  Since some of the vendors only take orders by phone, Lesley is still going to have to do some purchasing.  Most housework is in my range of abilities.  Lifting is still somewhat hard as I don't have a lot of strength.  Also reaching over my head is iffy.  I can't put my head back to see what I am reaching for.  This makes for some interesting choices when pulling clothes from the top of the closet.  If you see me in sweats and a sweater, just know that is what fell first while I was groping blindly.

Much of what I used to do was on the computer, such as sending out reminders, newsletters, and information, so none of that really had to stop for long.  I do have to resist the temptation to take on more of that just because I am capable of doing it.  Sometimes I find myself at the computer way too long.  I don't need another excuse not to exercise.

As far as other things that involve more speaking, I may have to wait until the Dynavox returns.  I do well in small, quiet situations, only needing a little notepad support. However, in a larger group I believe I will need more support to get my message across.  Some things may just have to transition to the written word, period.  I used to speak passionately about topics; education reform, for example.  However, my speaking is not clear enough, nor detailed enough, to deliver these messages, and the Dynavox, while an impressive piece of machinery, speaks devoid of emotion.  Commander Data has all the facts and figures, but sometimes it is emotion that seals the deal.

There was a moment on Tuesday that I felt almost completely normal.  Not your normal.  Maybe not anyone else's definition of normal, but I felt like me for the first time in many months.  I am not the same person I was before surgery, yet I am.  The physical modifications did not change the person I am inside.  Except for the surgical clips, the inside of the feeding tube, the missing lymph nodes... well, mentally I am the same person.

My vegan friend says that vegan pizza is very good, but not if you've had regular pizza recently.  You need to let that memory fade a little bit to recognize the vegan pizza on its own merits.  I think tube feeding is something like that.  It was really hard at first for me watching everyone else eat, but now that I haven't eaten by mouth for almost three months, it isn't as bad.  Blending the same meals my family has and eating at the table with them really helps.  Not only was the formula not satisfying for me, being hooked up to the pump was isolating and it all made me just want to hide at meal time.

I am still holding out hope that I will eventually take some food by mouth.  I'm not confident that I will be able to eliminate the feeding tube, but I do not hate it.  Some people really do despise it for whatever reason and will struggle with malnutrition and aspiration rather than have the tube.  Unless I become a grand champion eater, I think I'll keep it.

So, back to normal.  I'm not there yet, but for the first time in a long time I can at least see it from here.  I have my amazing husband, family, and friends all pointing the way.  It is almost like that tunnel that football players run through onto the field, except my loved ones are the tunnel, there is no colored smoke, and no pom poms.

Don't get any ideas, though.  I'm not feeling so much better that I can clean cat litter.  That day is far, far in the distance;)