Friends.

Hi, folks, it's David again!
Richard should be home tomorrow (Friday), but without a working laptop (we'll work on it), asked me to post again for him today.

His thoughts for today: how have others been affected by this disease?  Not other pALS, but those around the pALS - family, friends, colleagues, and even anonymous viewers of blogs & such?

Always happy to help (and having so rare the occasion to do more than just snipe at him jokingly with Facebook quips), I took on this challenge.
I said I'd take this matter seriously today, and write as myself, giving my own point of view on how ALS has affected me.
A couple of hours later, I'm not happy with that approach, so I've changed direction a bit.  Prepared to write about this next time (if there is one).  But for now...


It's funny how people fall into your lives, how they 'fit in' with you (or not), and how they become friends, or more, and what that can do to you & your life.
I organize a social club in Calgary, and was arranging for our group to gather at a weekly pub trivia night.  Week to week, different people came & went, as it was a casual, random, but regular gathering.
One day, in walks Richard - and, being himself, sort of took over the spotlight, as he tends to do.
Over several weeks, a 'core group' of people formed, partly around the trivia, but very much around Richard.
As he was in town doing project management work, coming & going to various glamourous world destinations... and Vancouver...  his social sense made his apartment the central gathering place outside of Tuesday nights downtown.
And to most of us, he became a friend.

He had been a friend for a couple of years when he received the ALS diagnosis.

I think the fact that Elizabeth & I were there in the hospital room visiting with him at the time, solidified that friendship in a way transcending the typical 'just-hanging-out' type of friends.

Some of 'the group' took unkindly to the ALS; mostly the younger folks who were now looking at a peer (if not in age or life experience, then at least in trivia interest) facing the road to the end.  Unable to handle the emotional roller-coaster that they'd normally expect to ride in another 40 or so years, they drifted away.  Friends still, but at a distance.

Soon after the diagnosis and the 'weekend of crying' (go back to posts in November 2012 for more), symptoms of the disease & the attitude about it, started becoming obvious - minor clumsiness at times; discussions about how long he had to live (initially in jest but with that pinch of reality); the chair was the kicker for me.

The chair.

The goddamned chair.

I hate that chair.

I hate seeing Richard in that chair.

I hate PUSHING Richard in that chair.

Why do "I" have to do the work if we're out & doing something together?

I hate ALS.

I hate everything about it.

I hate that a friend of mine is going to die.

I hate that a friend of mine simply won't BE HERE any more.

I hate that, now & then, I get a call asking for a favour.

I hate that I'm a 40-minute drive away, and a favour... any favour... likely means a couple of hours out of my day.

I hate that there are more favours these days than there used to be.

I hate that, when we've travelled together, I've had to manage most of the luggage.

I hate that, when we've travelled together recently, I've racked up double or triple my average FitBit points because I'm working so physically hard doing work for two.

I hate that, when we've travelled together recently, I've been half nursemaid, half chauffeur.  Where's my time off?

I hate that, when I'm working so hard pushing him around, carrying bags, running back & forth, and so on, I find I'm working just as emotionally hard keeping it together.

I hate when I think to myself, "Why am I doing this?  This is vacation time for me!  Why am I offering my leisure time to do this?  What do I get out of it?"

And then I think to myself: "Because he's a good friend, and he doesn't deserve this shit.  Nobody does."

You don't get 'time off' from friends.  If you did, they wouldn't really be friends.

A friend is there when needed.  A friend does what's needed.  A friend doesn't care what's needed.

I think to myself: "So much of what I've experienced in life the past few years, would never have happened without him.  Good times, good food, travel, laughter, more (not to mention having buckets of ice water dumped on me on several occasions).  He has changed my life, and for the better."

That's why I do this.  That's what I get out of it.

I take a deep breath, close my eyes, count to ten, and go back to whatever work I'm doing to help him enjoy himself.  When he's enjoying himself, I'm enjoying myself.

And that's what friends do.