Category Archives: Positivism

HSP Funny of the Day

#HereditarySpasticParaplegia

We have a running joke around the house about my voice.

You see, when my muscles tighten, they tighten everywhere. This causes some weird things to happen. Now, we can choose to laugh or cry. Frankly, to maintain (in)sanity, we choose to do the former.

In a long conversation with my daughter, she explained the physiological changes that were going on in by body during the compression. My oldest daughter is not only band director, but someone that has had a number of collegiate-level choir courses (she loves music), and knows how to control the linguistic qualities of her voice exceedingly well.

I explained to her that I believed the compression affected my voice in three areas: 1) the voice box, 2) chest and 3) diaphragm. The pharynx is compressed, giving a larger opening of the flaps as they could no longer close tightly. 2) The chest became solid. This made moving air a challenge. The result was a long steady exhale. 3) Similarly, the diaphragm sinks low and I must work hard to fill my vital capacity and control the flow the best I can. However, there are occasional spasms which momentarily expel a considerable amount of air through the column. This results in a rather loud burst.

My oldest, suggests the characteristics of the even are very similar to what a bass oral perform does to sing very low notes. And, indeed, I can go about 1/2 octave lower, or more, than normal when I go into my compression.

The overall tonal quality is humorous. However, I must apologize. The fact that we giggle about me sounding like our beloved LSU Coach Ogeron, is not a slight. Coach O’ is an awesome coach for a wonderful institution. I am not. I’m just me…. sounding like his distinctive voice. Indeed, we can listen to my voice transform from a semblance of normal to that wonderful man’s linguistic style.

Everyone near, generally rolls with laughter, once my inner circle begins giggling. We generally have a lot of fun with it as I reach for my Lortabs and Zanaflex.

There are many silver linings. Occasionally, we just have to frame them the way we want to see them.

Life is a many splendored thing. We need to learn how to love it in all of it inglorious idiosyncrasies to respect and enjoy the glorious nature of the day, when He gives us.

In Christ’s name!

Jay C. Theriot

Why Not to Despair

A recurring comment I receive from acquaintances is that I am so positive for all that I’m going through, and that I am an inspiration to them.

My response is a chuckle to myself and then to them, I explain:

  1. The disease my wife and I am fighting is not supposed to reduce my life expectancy.  However, it is progressive.  This means, that as bad as it is now, the disease will irreversibly  get worse as time goes on.
  2. I am approaching 50 years old.  I should have between 30 and 40 years left of this life.

If those two facts hold true, then I have two choices:

  1. Focus on the negative.  In which case, my body becomes my prison.  I live the next 30-40 years in a cell focusing on things that I wanted to do, but can’t, and never will be able to do.  My life will be miserable, not for a short time, but for decades.
  2. Focus on the positive, and take enjoyment in the simple things.  Nothing matters.  I can find beauty in the simplest things.  The shape of a petal on a flower, or the reflection of the world on the droplet of water or the way my wife’s eyes sparkle green when she smiles will bring an intense sense of joy.

I choose #2.  I’m not saying that there are not occasional visits to #1.  There are.  When I talk to the insurance companies and have to recount the laundry list of my issues, I fall.  That, is a guaranteed fall back into #1.  I give myself time to grieve and then put an end to it.

I have a sufficient lack of physically good days that I must make the most of every single one.  My “most” is considerably less than a normal persons even on the best days.  However, I look at what I can do.

I recently had a string of 6 days in a row!  I then proceeded into a spasmodic event that lasted over a dozen hours, pulled many muscles, slightly tore a couple more and left me reeling from the pain.  My statement to my wife during the ordeal was…. “I had 6 good days in a row!!! Wow, that hasn’t happened in a long time.”  I know the efforts we are taking are going to allow me to have good days again.

I willfully chose to believe that.  My choice allowed me to spend 36 hours of intense pain…in a good mood.  The attitude made the time not so bad.

My life changed radically with this disease.  I was engaging in activities I had waited all my life to be able to do.  And, in a very short time, all of the life I built was wiped away.  I was given a path of torment.  I spent in excess of three months in extreme pain, reaching dizzying heights at points.

The disease is progressive.  It is not a matter of if, but when the next set of destructive spasms occur.  I can either focus on the spasms, or catching the photo of the elusive chipping sparrow that is making a liar out of me.

I wholeheartedly choose, the chipping sparrow.  I pray you do the same.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity  You will need an IRC Client such as HexChat to connect.