The man behind the CAPOS…

Hello and how are you?

I think it is high time to tell you about my journey so far!

So the year was 1968, mid spring when I arrived.  It was a blessed day, Queen Victoria Day was in full swing!  Now, being Canadian, we celebrate Queen Victoria Day, not that you see any sort of celebrations, just the start of BBQ season!

I was born with an irregular bowel condition that needed to be fixed quickly.  I had Hirschsprung disease.  So, I was driven from my home in the backseat of a classic blue 1968 Volkswagen Beetle, to the hospital.  I was only 24 hours old!  The trip was uneventful, I am here now to tell you so.

The surgery was also a success!  I have scars to testify!

The doctor told my parent that this was a temporary fix and I needed a permanent replacement within a year.

During that year, I learned to walk, talk and control my bowels,  Meaning I learned to poop at the right time.  This was all mentioned to me at a later date, because I cannot recall that age.

So, things are going pretty good, soon, however the shit would hit the fan!

I was 13 months old when I went back to the hospital for this “routine” operation.  The operation went fine, but it was the recovery period that really set the stage for later issues, including hearing loss, vision loss and ataxia.

Being a 1969 hospital, all the beds were in one big room, I cannot recall if there were dividers between beds or were they like two feet apart, memory fails me.  And it fails me because I was in a coma.  The kid next to me had German Measles, which, needed a new host, that would be me!

I did get over those pesky measles, as a prize, I was enshrined with encephalitis.  Which, if you need to know, is an inflammation of the brain.  This encephalitis did not cause the CAPOS, but gave it just the slightest of nudges that would, four decades later, be rolling along just fine.

I had lost all of what I had learned during the first 13 months of my life.

My ataxia specialist mentioned that I would have still developed CAPOS if this episode hadn’t happened.  CAPOS would have found a different way to challenge my life.

Fast forward, let’s get to the 1990’s.  I learned ASL (American Sign Language) and was heavily involved with the Deaf-Blind community of Vancouver and then Canada.

In the early 90’s I started college, with the help of an interpreter or two.  Because I had just started to learn ASL (1989), the college forced me to take an introduction to ASL class, which I struggled with because I could not see the teachers, finally they set up an “Intervenor” for me, but it was still not successful.

The college forced me, if I wanted to continue using their interpreting services, to take another ASL class that was for interpreters.  I lobbied for myself and received two Deaf Interpreters to provide clear dialog of the class.  This class I passed with flying colours, even through I had a several creative (read arguments) discussions with the instructors!

After these mandatory classes that I had to pay for, I went on to receive interpreters without any challenges.  In fact, I was demanding interpreters now that I was enrolled to start University in the mid 90’s.

The first two years I did alright, squeaking by, using the interpreters they provided me.  Some were pretty good.  Others were lousy.  I applied for and was accepted to live on campus.

This would be both beneficial and disastrous.  I was closer to class, but I overloaded myself, overextended.  I was put on probation because my GPA fell below level due to one fail course and on late withdrawal.

So the next semester I came back with a vengeance, focused, passed and got myself out of the academic hole I put myself in.

I took the next two semesters off, traveled, and came back with better interpreters, I lobbied for better interpreters!  I was passing my classes with As now, and this is, yes because of the better interpreters, but also because I was only taking one class a semester!  That helped my focus!

I graduated in 2000, being the first Deaf-Blind from that university do to so!

Let’s fast forward to 2008, April.  I was married to my wife Carrie for 6 years, and had a 15 month old son.  About two days before this, we took Chase to get his MMR booster shot.  Little did we know that history was about to be repeated!

Chase was born just like any child, yet without a doctor present.  (That is a future story).  No complications or causes for immediate surgery.  During the first 15 months of life, he had done basically what every baby does, walking, sitting up, talking, etc.

Now the MMR shot was routine, and he didn’t even cry!

Two days later he developed a HIGH fever and we rushed him to the ER where he was admitted and helped to recuperate!  We learned later that he had developed measles from the MMR, which there is a very small chance of happening.

He survived, and was sent home.  To recover, and relearn everything!  Nod if you see a pattern!

I recall two things vividly after this episode, one, of holding Chase as you would a newborn, protective of weak neck muscles, and the other of him crawling on the floor after already learned to walk.  He went backwards a bit.

Fast forward to 2011, August.  We now had two beautiful sons.  We went to see a specialist for neurological disorders in Hamilton (We relocated to Toronto in September of 2008).  Having heard the both stories that I just told you, this doctor declared that I have Ataxia, and so does Chase!

Three years later, and many blood samples taken, plus from both parents, my doctor finally tells me that I have CAPOS.  A dental blood sample for Chase, taken earlier, confirms he has CAPOS as well!

Wow, what a journey!

As you can see, there are lots of gaps, and important things missing, like “How did he end up getting married to an amazing lady like Carrie?”, Europe 2000, Calyyb, just to name a few.  These gaps will be filled in upcoming editions!

Thank you for reading!


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The big five parts of capos

Cerebellar ataxia


Pes cavus

Optic atrophy

Sensorineural hearing loss


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