Stage Fright

Ahhh. Even if you’re not one for being very bashful, stage fright can strike when you least expect it. Most guys dream of being in the position of having an attractive young lady handling “Mr. Happy”. But when that handling is for the sole purpose of being properly aligned for a portable urinal, shrinkage, nay, abject fear strikes the unsuspecting corpora cavernosum and reduces you to a five year old straight out of the swimming pool.

Tommee Tippee

All of us have had to learn to drink from a cup or glass. Many of us or our children had the benefit of beginning this learning process with a Tommee Tippee cup. They work really well and generally prevent meal time disasters. As we progress through our teens and become adults, our prowess at handling various drinking vessels becomes second nature no longer requiring conscious thought.


When you drop your first glass of that really expensive libation, you are faced once again with serious thought about beverage control. Not only do you want to avoid wasting expensive beverages, you want to make sure you’re not receiving an impromptu bath. So, back to Tommee Tippee we go. Yeah, you’ll take good-natured crap from family and friends but the adult version of this venerable tool will afford you some independence for a little while longer.

Halloween

Always a great time of year given to really fun parties. When you are basically at the mercy of your family members and caregivers for your costume, boy are you in trouble.


Remember when your girls were little and they would play dress-up and get into mom’s make-up and “unmentionables”? Well, being a captive participant you can pretty much expect to be wearing clothing and make-up that would NEVER have seen the light of day in your former life.


But there is a silver lining: you don’t have to participate in some of the more inane games. Oh yes, did I mention you’ll take ten tons of crap from your buddies for your costume? Yep, no way to escape. And who knows, maybe you’ll take a liking to the red finger and toe-nail polish!

Read my lips

Everytime I hear this phrase, for some reason I think of George H.W. Bush and the 1988 Republican Convention. I’m not sure why, but that’s what pops into my little brain. Certainly, in 1988, I never thought that this phrase would become so important to my ability to communicate. But then I never dreamed I would have to have a tracheostomy either. Something about having a big-ass hole in your throat is a little disconcerting. But then maybe it’s not so bad since you no longer have to worry about choking.


Everyone in my support network is trying very hard to read my lips as the trach precludes my ability to speak. Truth be told, I think there are some people who are quite happy I’ve been shut up. But little do they know that I will speak again and then it’s payback time!

Bed snake bat

This little jewel is a 12-inch long wooden baseball bat with a small tether so it can’t be dropped. This was something we received, excuse me, my wife received as a wedding gift. In some countries, this is an acceptable form of birth control. Go figure. It was “lost” for the longest time and then somehow “magically” reappeared about the same time that I started needing to wear condom catheters to manage fluid output. I think my wife, knowing that someone else was going to be touching Mr. Happy, thought Mrs. Bat should make a return engagement to assure there was proper behavior.


My caregiver had the biggest giggle about this and threatens me regularly, regardless of the infraction, saying “don’t make me get the bat.”

Continuing Change

Just when you thought things might be slowing down, Uncle ALS throws you another curveball. Since my swallowing has been slowly copromised, fear of choking has been in the forefront. After a recent episode that required a trip to the emergency room, we decided to bite the bullet and get a G-tube placement. For those of you not familiar with a Gastric tube, it is a small tube that is in direct contact with your stomach. So all my food is now liquid and delivered throughout the day with no more worries about choking. The peace of mind this has brought has been well worth it. Onward and upward!

Hurt me, beat me

When you get far enough along in the adventure, your caregiver takes on the role of being the Mistress of the Tower, you know, as in the Tower of London. Being confined to a wheelchair all day, because you have lost the majority of your ability to move your limbs, requires someone to move them for you to help your circulation. Sometimes, this is uncomfortable because your muscles have decided they’re not really interested in moving. So hurt me, beat me, takes on a new connotation and one that is absolutely necessary: You gotta keep movin’.