Things That I Miss Being Able To Do

My understanding of ALS, and I could be wrong about it, is the nerves and the muscles they control stop communicating.  I am sure that is an oversimplification and some of you reading this may have a better understanding than I do right now.  I am sure that I will learn more as I progress and talk to doctors.  Having said all of that, there are things that I miss being able to do.  Here are just some of them:

1.  Curling my tongue to make a circle.  Seems simple right?  Well where my ALS is centered it has affected all of my mouth and lingual (tongue) muscles.  It has been something that I have been able to do all of my life thanks to my parents.  If you didn't know that ability is inherited.

2.  Turning my tongue upside down.  Yes, I mastered that skill.  I used to amaze little kids by doing that.  It also gave them something to try and do.  I am sure parents were so grateful that I had showed them that.

3.  Whistling.  I never did whistle a lot but I did at times to release tension or just because I was in a good mood.  I also trained a cat to come to me when I whistled.  Yeah I know.  Weird.  Of course cats are weird and the weirdest ones seem attracted to me.

4.  Blowing bubble gum bubbles.  Although I have not chewed bubble gum in years it still bugs me.  To blow bubbles is dependent on the next thing that I miss.

5.  Sticking out my tongue.  In our family we have kinda fallen into a thing when pictures are being taken and that is, in at least one we all stick our tongues out at the camera.  Don't ask me why, it's just one of those family things you find yourself doing.

6.  Speaking clearly and quickly.  There are certain sounds and words that I really have to concentrate on saying.  Not always the same sounds and words.  Different ones at different times and depending on how tired I am.  I have found that by bedtime I have a harder time.  When I want to smile and say something I can't.  I miss opportunities to make comments quickly in reaction to what some one else has said.  Besides it cuts down on my flirting as well.  :)

7.  Kissing.  Not the spit swapping, tonsil tickling kissing, but the quick peck on the cheek or the giving of "sugars" to the babies, kissing.  I have to really concentrate to make the smack.  Pressing my lips to skin doesn't quite have the same meaning.  Yes, it conveys to the receiver that I am trying and that I love them and they understand.  Yet, to me, it is a symbol of  defeat.  A small one yes, but an important one for me.

For all of these things that I miss I have discovered, or rather rediscovered, something else.  The intimacy of touching.  The largest organ in (on?) the body is skin.  It transfers thousands of little bits of information to the brain every second.  Hot or cold, soft or hard, pain or pleasure.  Doctors touch of a necessity to examine and diagnose.  Nurses touch to heal.  They know almost instinctively that a touch can do more to heal than the medicines or procedures that they carry out.  A touch on the arm or hand of a loved one calms and reassures.  A hug can transfer power and feelings more profound than words.

For me I touch my Angel frequently just to let her know I am there and thinking about and loving her.  I know that one day she will yearn for that touch and caress when I will be no longer able to give it to her.  Maybe, just maybe, she will have the memory of my touch and feel it again and some of the pain will go away.

Until next time..............