Wednesday, January 28, 2015

A Lame Respondant

No excuses. I can honestly say I've been absolutely awful at responding to correspondence recently.

I have easily had over 25 personal messages, each as deserving of a response as any other.

I haven't sent a single response.

Sorry to everyone that's written. You deserve a response.

The problem is that your message discussed or hinted at one (or more) of these topics; my early demise, poignant moments in life we've shared, or what a role model I have been to you or people you know, or it just whiffs of nostalgia.

I don't know - at the moment - how to respond to that

I mean, thanks for the gesture of working on a message, but i haven't figured out how I feel about those types of messages.

(If I don't explain this perfectly, I'm going to sound like a complete dickhead.)

The messages are all very nice and say very complimentary things about me, but to truly soak in their entire meaning, their intent...well, it feels as if I'm conceding defeat.

And I'm not ready to throw the towel in yet.

So, to recap; they're all really nice messages, but I'm not going to read them at the moment.

Here's what I'll do; I'll save every message and I'll treat the collection of messages like fuel for my motivation.

When the time comes, when defeat seems inevitable and imminent, then I'll read them all, and bask in your friendship.

I'm basically playing a mind game with myself.

Am I making any sense?

Either way, thanks for all the messages.

Friday, January 23, 2015


To be transparent, I've asked Amanda to look to restart her career away from much as I may rant about extended leave.

But Amanda loves teaching, and seems determined to return.

Thursday, January 22, 2015

Change Down a Gear

Most people that have driven a car with a manual gearbox will be familiar with the sound the engine makes when you drop down a gear and release the clutch. In a regular car it can sound like quite a racket. In a good car it sounds like a beast, screeching and roaring, struggling to stay in control.

In a '78 Tony Conway...changing down a gear is a wheezier affair. 

I have had a noticeably harder time with my breathing. Maybe its the cooler temperatures and drier air that have triggered some respiratory distress. Then again, maybe it's just ALS.

I have some new medical equipment now; a nebulizer, a suction machine, and my own supply of oxygen.

My medicines have changed too.

I tried a small dose of morphine today. Apparently, people can have an adverse reaction to morphine, so I had a small test dose in the  presence of my hospice nurse to make sure I could tolerate the drug. I'm disappointed to report that I did not gain the ability to fly, but I suppose that means I can tolerate the drug.

This all began when a routine examination discovered a little congestion in my throat, but my lungs were clear. I was introduced to the nebulizer in the hope it would relieve some of my throat congestion. Fixing that problem creates another; after clearing my throat I'm not always in a good position to get the crud out of my mouth. That's the reason for the small suction machine.

Earlier this week, I went through what I can only describe as an asthma attack, at 3am. If you want to know what that feels like, I recommend you try breathing through a thin straw. You'll quickly realize that you aren't getting enough air in your lungs, so you modify the way you breathe to gasp in air. Except you cant gasp in air, since you windpipe is still constricted. Add the fact that I'm working with lungs that function at about a third of what they should, and I'm sure you can get a sense of my level of anxiety.

I have new medical gadgets now. I also have a much better way to tackle any future breathing problems. And while that may be reassuring now, I find it hard not to think of the struggle that lies ahead for my lungs.

How many gears are in a '78 Conway anyway?

Wednesday, January 21, 2015

Extended Leave (Open letter to J. Donald)

I'd like to personally thank the Superintendent of Rockbridge County Public Schools for denying my wife's request for a third year of extended leave to be my primary care-giver.

I certainly understand that policy only allows for two years of extended leave, and that any deviation from the published policy would be catastrophic to the integrity of the entire school system. Your adherence to this policy in the strongest manner is to be lauded, in  light of what must be a constant stream of feeble excuses and pathetic tales of woe.

I would like to expand by adding that my wife has always thought of teaching as her dream job. Furthermore, she took great pride in doing her job to the best of her ability; she's her own worst critic. I've heard her lament, one more than one occasion, that she is struggling to get student X to perform in the classroom. She always makes it her responsibility when a student underperforms, regardless of the circumstances.

In short, she has always been a responsible, dedicated, and knowledgeable teacher. She has approached her role as a teacher with a tremendous amount of professionalism, compassion and passion...

...and you just basically told her to shove it.

It was nice to hear your assistant superintendent make assurances that my wife will be a priority to hire once I'm dead. However, I would hope you can understand why we would rather have the assurance of a third year of extended leave.

Putting my grievance aside, I can't imagine anyone would like to be forced in to asking for extended leave, let alone abuse the policy somehow.

Surely the school division can find a compassionate answer to enact as policy.

While they're at it, perhaps the school board could reconsider the policy on employees transferring their sick leave or personal days to another employee. Unsurprisingly, quite a few colleagues wanted to help my wife in this way while we were burning a trail between here and Johns Hopkins...I'll let people reading this guess what the policy is in regard to that.

Thursday, January 8, 2015

In the Eyes

Close up photos make my nose look like a big ole' wedge of cheese, but I love some of them.

Wednesday, January 7, 2015

My Tobii

Ive had a quiet festive period. That's due in large part to the power connection on my Tobii computer going on the fritz. With no power supply, I was down to the charge on the batteries. To be fair to Tobii, the battery life lasts pretty much all day.

To their credit, Tobii, so far, have been great about fixing my Tobii. They sent out UPS to pick up my broken computer, and sent me an older model to use while mine was being fixed.

That's where we ran into a snafu. The older computer they sent wouldn't start!

That happened right before New Years...which meant the shipping department was my replacement for my replacement only just arrived today.

Time without Tobii felt very repetitious; I'd just watch TV, struggle to communicate, eat, and sleep.

It's good to have  my digital voice back.