Today marks Richard's 65th birthday.
In his last birthday post (HERE) he wondered if he would make it to 64, seeing as he'd already beaten a few odds by lasting a couple of years longer than expected.
Regrettably, he did not make it to 64.
Since his diagnosis, he tried to live as though every day was his last, and 'the gang' had a great time doing it with him.
We know he had a good time during those last couple of years - we know all too well, he had some bad times, too.
But if I learned anything from his ALS days, it's to enjoy the moment, whatever that moment is offering.
Happy Birthday, Big Guy!
Tuesday, 21 July 2020
Monday, 26 August 2019
Reflections on Road Trips, Part Deux
Hi again - it's David...
I have arrived home today, after a little travelling the mid-USA, visiting parents in Ontario, and covering some of the ground that Richard and I never got around to.
As noted in prior posts, I have decided to post here, those trips or facts of interest that would have Richard in my thoughts. I hope you don't mind.
If you were a reader/friend of Richard's, you'll appreciate some of my day-tripping journals over the next few days.
If you've arrived to this blog for the first time - you are probably new to ALS and found it through a web search or reference; Richard is no longer with us, but you should go back to the very beginning of his blog and read through it. Inspiring, real, sometimes gritty; he never pulled his punches when talking about it. Since he passed away in Sept/2018, I have posted a few things here & there, essentially on his behalf, but wholly in his memory.
Facebook has reminded me that today marks the 5th anniversary of Day One of Richard's and my FIRST road trip (see Richard's post from that day here - https://richardislivingwithals.blogspot.com/2014/08/not-this-trip.html).
It seems a lifetime ago.
Once I catch up on some sleep, I'll talk more about the last 5 years, and the last 18 days.
I have arrived home today, after a little travelling the mid-USA, visiting parents in Ontario, and covering some of the ground that Richard and I never got around to.
As noted in prior posts, I have decided to post here, those trips or facts of interest that would have Richard in my thoughts. I hope you don't mind.
If you were a reader/friend of Richard's, you'll appreciate some of my day-tripping journals over the next few days.
If you've arrived to this blog for the first time - you are probably new to ALS and found it through a web search or reference; Richard is no longer with us, but you should go back to the very beginning of his blog and read through it. Inspiring, real, sometimes gritty; he never pulled his punches when talking about it. Since he passed away in Sept/2018, I have posted a few things here & there, essentially on his behalf, but wholly in his memory.
Facebook has reminded me that today marks the 5th anniversary of Day One of Richard's and my FIRST road trip (see Richard's post from that day here - https://richardislivingwithals.blogspot.com/2014/08/not-this-trip.html).
It seems a lifetime ago.
Once I catch up on some sleep, I'll talk more about the last 5 years, and the last 18 days.
Thursday, 30 May 2019
Betty's Run... Walk... Hop, Skip, Jump... Wheel, Skate, Drag or Roll... is here again!
It's almost June, and that means it's almost time for Betty's Run - Calgary's annual ALS Society fundraising charity walk.
For awareness, thanks if you share with your friends, and more thanks if you donate to the cause - here's the link to my (David's) fundraising page for this year's run
Summer is almost here - 3 weeks, according to the Farmer's Almanac and most modern calendars.
Summer means different things to different people - to some it's 3 months away from school, to others it's a period of swimming, backyard BBQs and sunny road trips.
I'm planning my next road trip for late-summer - most of August, actually.
I'll be crossing from Calgary into Montana and heading eastwards across the northern US - a route that Richard and I didn't make the last time we tried it - we'd had 18 or so days together, and that last morning, with 4 days remaining in the plan, we decided that the snow & cold (it was Feb 2017) was just a bit too much to spend 3 more days doing the Dakotas. "We can always do them next time," we agreed.
Well, next time came the following year, and somehow we traded the Dakotas for the Isles... the British Isles... and instead of Mount Rushmore's Presidential heads, we visited the Loch Ness Monster, the Titanic and the birthplace of Richard's grandfather & family.
So in August I will do the Dakotas - much of it in Richard's memory.
It won't just be for him, though - I'll spend a few days in southern Ontario (Toronto-area) visiting family, before heading back - about 3,000 miles each way.
I hope to find a good travelling companion for the trip, or at least part of it - 3 weeks off work doesn't come easy to many, and I expect to work a day or two during that time, remotely from wherever I am.
But it will be a road trip - a road trip that encompasses the final bit of 'unfinished business' in the road trip draft plans in my files.
I feel somewhat obligated to post here about it, as he would have done.
So touch base here around Labour Day - I should have something written about the trip and how Richard might have felt about it.
In the meantime, enjoy your summer, whatever you're doing!!
Tuesday, 30 April 2019
Delight Mid the Doughty
"The Seafarer"
An Old English poem giving a first-person account of a man alone on the sea.
Considered a reflection on spirituality.
Written a millenium ago, it was first (known to be) published in the Exeter Book, a manuscript of Old English poetry, recognized as one of the "world's principal cultural artifacts," dating from the late 900s AD.
Translations abound, the last century seeing many poets referring their own comprehension of its meaning - many words' true meanings being lost to history, and phrases sounding nonsensical to the modern ear.
I don't know if Richard knew the verse verbatim - it wouldn't surprise me if he could recite it - possibly some in the original Old English; I'm certain he was familiar with it, though.
He loved the sea, and loved being on it.
It is fitting, then, that on Saturday his ashes were scattered to sea, in Horseshoe Bay, Vancouver, as he had always wanted.
His pals Chris and Chris took Richard's four kids - Meghan, Mary, Kate & Rick - out around noon and said their last goodbyes.
Richard passed away 7 months ago.
Time does not dilute the memories; if anything, it brings them more in focus, recalling the good times, and the bad, reflecting on the changes to one's life that another person's simple existence can make.
His existence changed me, that's for sure- for the better, I like to think.
His truck was sold this week, almost the last of his affairs now put in order.
The Seafarer. Ezra Pound translation, 1911.
"May I for my own self song's truth reckon,
Journey's jargon, how I in harsh days
Hardship endured oft.
Bitter breast-cares have I abided,
Known on my keel many a care's hold,
And dire sea-surge, and there I oft spent
Narrow nightwatch nigh the ship's head
While she tossed close to cliffs. Coldly afflicted,
My feet were by frost benumbed.
Chill its chains are; chafing sighs
Hew my heart round and hunger begot
Mere-weary mood. Lest man know not
That he on dry land loveliest liveth,
List how I, care-wretched, on ice-cold sea,
Weathered the winter, wretched outcast
Deprived of my kinsmen;
Hung with hard ice-flakes, where hail-scur flew,
There I heard naught save the harsh sea
And ice-cold wave, at whiles the swan cries,
Did for my games the gannet's clamour,
Sea-fowls, loudness was for me laughter,
The mews' singing all my mead-drink.
Storms, on the stone-cliffs beaten, fell on the stern
In icy feathers; full oft the eagle screamed
With spray on his pinion.
Not any protector
May make merry man faring needy.
This he little believes, who aye in winsome life
Abides 'mid burghers some heavy business,
Wealthy and wine-flushed, how I weary oft
Must bide above brine.
Neareth nightshade, snoweth from north,
Frost froze the land, hail fell on earth then
Corn of the coldest. Nathless there knocketh now
The heart's thought that I on high streams
The salt-wavy tumult traverse alone.
Moaneth alway my mind's lust
That I fare forth, that I afar hence
Seek out a foreign fastness.
For this there's no mood-lofty man over earth's midst,
Not though he be given his good, but will have in his youth greed;
Nor his deed to the daring, nor his king to the faithful
But shall have his sorrow for sea-fare
Whatever his lord will.
He hath not heart for harping, nor in ring-having
Nor winsomeness to wife, nor world's delight
Nor any whit else save the wave's slash,
Yet longing comes upon him to fare forth on the water.
Bosque taketh blossom, cometh beauty of berries,
Fields to fairness, land fares brisker,
All this admonisheth man eager of mood,
The heart turns to travel so that he then thinks
On flood-ways to be far departing.
Cuckoo calleth with gloomy crying,
He singeth summerward, bodeth sorrow,
The bitter heart's blood. Burgher knows not --
He the prosperous man -- what some perform
Where wandering them widest draweth.
So that but now my heart burst from my breast-lock,
My mood 'mid the mere-flood,
Over the whale's acre, would wander wide.
On earth's shelter cometh oft to me,
Eager and ready, the crying lone-flyer,
Whets for the whale-path the heart irresistibly,
O'er tracks of ocean; seeing that anyhow
My lord deems to me this dead life
On loan and on land, I believe not
That any earth-weal eternal standeth
Save there be somewhat calamitous
That, ere a man's tide go, turn it to twain.
Disease or oldness or sword-hate
Beats out the breath from doom-gripped body.
And for this, every earl whatever, for those speaking after --
Laud of the living, boasteth some last word,
That he will work ere he pass onward,
Frame on the fair earth 'gainst foes his malice,
Daring ado, ...
So that all men shall honour him after
And his laud beyond them remain 'mid the English,
Aye, for ever, a lasting life's-blast,
Delight mid the doughty.
Days little durable,
And all arrogance of earthen riches,
There come now no kings nor Cæsars
Nor gold-giving lords like those gone.
Howe'er in mirth most magnified,
Whoe'er lived in life most lordliest,
Drear all this excellence, delights undurable!
Waneth the watch, but the world holdeth.
Tomb hideth trouble. The blade is layed low.
Earthly glory ageth and seareth.
No man at all going the earth's gait,
But age fares against him, his face paleth,
Grey-haired he groaneth, knows gone companions,
Lordly men are to earth o'ergiven,
Nor may he then the flesh-cover, whose life ceaseth,
Nor eat the sweet nor feel the sorry,
Nor stir hand nor think in mid heart,
And though he strew the grave with gold,
His born brothers, their buried bodies
Be an unlikely treasure hoard.
Amen."
An Old English poem giving a first-person account of a man alone on the sea.
Considered a reflection on spirituality.
Written a millenium ago, it was first (known to be) published in the Exeter Book, a manuscript of Old English poetry, recognized as one of the "world's principal cultural artifacts," dating from the late 900s AD.
Translations abound, the last century seeing many poets referring their own comprehension of its meaning - many words' true meanings being lost to history, and phrases sounding nonsensical to the modern ear.
I don't know if Richard knew the verse verbatim - it wouldn't surprise me if he could recite it - possibly some in the original Old English; I'm certain he was familiar with it, though.
He loved the sea, and loved being on it.
It is fitting, then, that on Saturday his ashes were scattered to sea, in Horseshoe Bay, Vancouver, as he had always wanted.
His pals Chris and Chris took Richard's four kids - Meghan, Mary, Kate & Rick - out around noon and said their last goodbyes.
Richard passed away 7 months ago.
Time does not dilute the memories; if anything, it brings them more in focus, recalling the good times, and the bad, reflecting on the changes to one's life that another person's simple existence can make.
His existence changed me, that's for sure- for the better, I like to think.
His truck was sold this week, almost the last of his affairs now put in order.
There's no more to do at his apartment now - it stays on sale in a soft market - but I have nothing to offer on that front; the realtor is the last man standing in this case. In fact, one more check for un-forwarded mail, and I'll be dropping off the keys with the building super.
We will always miss him; those who knew him, up close, from afar, and online as many of you.
The Calgary 'Gang' will gather now & then, raising a glass to his memory. He was the glue that held us together. We needed him then, and in some ways, need him now.
So we will do the annual Betty's Run (the local version of the annual ALS fundraising walk/run) in June, as we've done for 6 years now.
But without Richard leading the pack, there will be two differences:
First, we'll move faster!!
Second, there will be more pizza for the rest of us when we have food & drink afterwards.
I hope we will continue this tradition - both the walk, and the pizza!
The Calgary 'Gang' will gather now & then, raising a glass to his memory. He was the glue that held us together. We needed him then, and in some ways, need him now.
So we will do the annual Betty's Run (the local version of the annual ALS fundraising walk/run) in June, as we've done for 6 years now.
But without Richard leading the pack, there will be two differences:
First, we'll move faster!!
Second, there will be more pizza for the rest of us when we have food & drink afterwards.
I hope we will continue this tradition - both the walk, and the pizza!
I don't know if any particular words were said at Horseshoe Bay.
There would be reason to say something deep and meaningful; but also reason to stand in silence for a moment.
I took a moment to reflect, and raised a glass myself that night.
The Seafarer. Ezra Pound translation, 1911.
"May I for my own self song's truth reckon,
Journey's jargon, how I in harsh days
Hardship endured oft.
Bitter breast-cares have I abided,
Known on my keel many a care's hold,
And dire sea-surge, and there I oft spent
Narrow nightwatch nigh the ship's head
While she tossed close to cliffs. Coldly afflicted,
My feet were by frost benumbed.
Chill its chains are; chafing sighs
Hew my heart round and hunger begot
Mere-weary mood. Lest man know not
That he on dry land loveliest liveth,
List how I, care-wretched, on ice-cold sea,
Weathered the winter, wretched outcast
Deprived of my kinsmen;
Hung with hard ice-flakes, where hail-scur flew,
There I heard naught save the harsh sea
And ice-cold wave, at whiles the swan cries,
Did for my games the gannet's clamour,
Sea-fowls, loudness was for me laughter,
The mews' singing all my mead-drink.
Storms, on the stone-cliffs beaten, fell on the stern
In icy feathers; full oft the eagle screamed
With spray on his pinion.
Not any protector
May make merry man faring needy.
This he little believes, who aye in winsome life
Abides 'mid burghers some heavy business,
Wealthy and wine-flushed, how I weary oft
Must bide above brine.
Neareth nightshade, snoweth from north,
Frost froze the land, hail fell on earth then
Corn of the coldest. Nathless there knocketh now
The heart's thought that I on high streams
The salt-wavy tumult traverse alone.
Moaneth alway my mind's lust
That I fare forth, that I afar hence
Seek out a foreign fastness.
For this there's no mood-lofty man over earth's midst,
Not though he be given his good, but will have in his youth greed;
Nor his deed to the daring, nor his king to the faithful
But shall have his sorrow for sea-fare
Whatever his lord will.
He hath not heart for harping, nor in ring-having
Nor winsomeness to wife, nor world's delight
Nor any whit else save the wave's slash,
Yet longing comes upon him to fare forth on the water.
Bosque taketh blossom, cometh beauty of berries,
Fields to fairness, land fares brisker,
All this admonisheth man eager of mood,
The heart turns to travel so that he then thinks
On flood-ways to be far departing.
Cuckoo calleth with gloomy crying,
He singeth summerward, bodeth sorrow,
The bitter heart's blood. Burgher knows not --
He the prosperous man -- what some perform
Where wandering them widest draweth.
So that but now my heart burst from my breast-lock,
My mood 'mid the mere-flood,
Over the whale's acre, would wander wide.
On earth's shelter cometh oft to me,
Eager and ready, the crying lone-flyer,
Whets for the whale-path the heart irresistibly,
O'er tracks of ocean; seeing that anyhow
My lord deems to me this dead life
On loan and on land, I believe not
That any earth-weal eternal standeth
Save there be somewhat calamitous
That, ere a man's tide go, turn it to twain.
Disease or oldness or sword-hate
Beats out the breath from doom-gripped body.
And for this, every earl whatever, for those speaking after --
Laud of the living, boasteth some last word,
That he will work ere he pass onward,
Frame on the fair earth 'gainst foes his malice,
Daring ado, ...
So that all men shall honour him after
And his laud beyond them remain 'mid the English,
Aye, for ever, a lasting life's-blast,
Delight mid the doughty.
Days little durable,
And all arrogance of earthen riches,
There come now no kings nor Cæsars
Nor gold-giving lords like those gone.
Howe'er in mirth most magnified,
Whoe'er lived in life most lordliest,
Drear all this excellence, delights undurable!
Waneth the watch, but the world holdeth.
Tomb hideth trouble. The blade is layed low.
Earthly glory ageth and seareth.
No man at all going the earth's gait,
But age fares against him, his face paleth,
Grey-haired he groaneth, knows gone companions,
Lordly men are to earth o'ergiven,
Nor may he then the flesh-cover, whose life ceaseth,
Nor eat the sweet nor feel the sorry,
Nor stir hand nor think in mid heart,
And though he strew the grave with gold,
His born brothers, their buried bodies
Be an unlikely treasure hoard.
Amen."
Monday, 4 February 2019
Reflections on Road Trips
Reflections on Road Trips
Road Tripping without Richard - it’ll never be the same…
***I must apologize for the awful formatting of this post. Photos don't sit well on this platform, and the result looks NOTHING like the even, neatly-laid-out columns I painstakingly created. :) ***
I took a road trip in January - the first road trip without Richard as my co-pilot.
I had intended to post this on my return, but realized that if I waited for (today), it would be exactly 2 years since we set off for Louisiana to see his brother Adam. I thought it fitting to post this today, as you'll see shortly.
My mother just turned 75.
I took a road trip in January - the first road trip without Richard as my co-pilot.
I had intended to post this on my return, but realized that if I waited for (today), it would be exactly 2 years since we set off for Louisiana to see his brother Adam. I thought it fitting to post this today, as you'll see shortly.
My mother just turned 75.
Naturally, she being halfway across country, I planned to make the trek to be there for her birthday.
The question was; do I just fly back or take a road trip/vacation? Richard and I had spoken of driving down there for the birthday - they'd spoken a couple of times on the phone - with a live-in caregiver aboard, taking half the driving off my shoulders, it would have been a nice trip, for the both (or maybe, all) of us.
I didn’t want to reach out to friends for a road trip, during which I’d be taking off on my own for several days; and besides, I got a new car just a few weeks before - it was a good opportunity to run it in & see how it travels.
So with a little Travelocity searching, I found reasonable airfare to Toronto from (of all places) Boise, Idaho the day before her birthday, and worked out a road plan to get there just in time.
It’s somewhat bittersweet that the route I chose would take me almost entirely over roads that Richard and I had driven in the past - we scoured the western US in August of 2014, and much of the western third of the US in February of 2017 (this is the trip we began 2 years ago today); and this trip would cover just a few new roads for me.
But part of this decision was to reflect on the good times, and good drives, that Richard and I had done before. Memories of stops we made then, coupled with some new memories of stops I could now make on my own, gave me both familiarity and comfort, and new discoveries.
 |
Just across the border that afternoon, I detoured to Cut Bank to see the “Coldest Spot in the Nation” - a claim hotly (or coldly?) disputed by at least a few other US towns - but none of them have a talking penguin, so I found this a two-for-one stop to make!
Richard wouldn’t have cared for a Penguin selfie, but I would have driven the vehicle around to get him beside it, like it or not!
Further south, into Bozeman, MT towards day’s end, I found (we both WOULD have agreed) the brewery district where we could get a sampler flight of good craft beer and a really bad burger.
 |
The Lewis and Clark Motel would have thrilled Richard’s sense of history - being along their Trail and all - and he’d have enjoyed the sizeable rooms & quaint lobby area.
 |
Here, Richard would have loved the various sci-fi icons around the walls, and technology on display.
Nearby, a Mexican restaurant's mascot, the Red Iguana "doesn’t care for selfies" as he glowers disapprovingly from the parking lot. But he was behind a fence, so I felt safe enough.
Then on to Salt Lake City, UT - where we had spent a couple of days previously - I spent some time at the Mormon’s Family History Library doing some family history research - and the rest just driving around as a restful do-nothing-specific kind of stop.
At an ungodly hour for a vacation day, I rose to drive the nearly-2-hours to Bonneville to get a sunrise photo at the Salt Flats, before testing the upper limits of the RAV4. Regrettably, the big winter blizzard that tore down
the region several days before had left enough water to make them
un-driveable, and I couldn’t* test the performance - although we did so with Richard's truck last time.
The sunrise was un-spectacular in photos, but the 10-minutes before shots seem to have turned out quite nicely.
North from Bonneville, through the NE corner of Nevada and into Idaho, to Twin Falls - home of Evel Knievel’s Snake River Canyon Jump attempt. Unfortunately, the road down to the actual location seems closed in winter, as we didn’t make it 2 years ago, and I couldn’t get there this time either. Perhaps the next summer trip.
This time, I made do with a quick stop at the Visitor's Centre, next to the Snake River Bridge, where I saw the last couple of a group of base-jumpers tempting fate by dropping off a perfectly good iron railing & into thin air with nothing but a strip of fabric, string & a lot of hope, to keep them safe.
One
last trek for this leg - to Boise for the night, then an uneventful
morning flight to Chicago, where the next leg saw a jet fuel spill on
the gateway next to us, delaying our departure by an hour. It looked
like a scene straight out of Die Hard 2!
 |
| David's delay in Chicago |
 |
| Die Hard 2: Die Harder |
However, I got home just fine - and thanks to a silly time-zone mis-calculation, arrived exactly when I had intended, stayed with a friend that night, got to Mom’s the next morning, and a good weekend was had by all.
It's very different driving alone than with a friend - I suppose I expected as much - and it will never be the same with anyone else.
It's not, of course, just the drive time. I'd done much of the driving 2 years ago, and all of it on the summer trip to the UK. It's the quiet, the lack of conversation, that got to me this time.
Richard always had something to say - sometimes useful, sometimes not, sometimes entertaining, but I was never really aware of how quiet it could be until I told myself (sometimes out loud!) "Oh, right, this is where so-and-so got scalped" or "I remember this plain from that trip" or even "Oh, yeah, that place had good french fries" because I recalled these Richard had said or done, from the last trip down here.
One unexpected smile was when I passed this sign in Idaho on the last leg home - Richard had nicknamed the wheelchair van "Lucille" in a nod to B.B. King's guitar (the story of the name here - https://www.wikiwand.com/en/Lucille_(guitar)), so happening across a roadsign, I had to stop, turn around & get a pic! Richard WOULD have loved it.
It's not, of course, just the drive time. I'd done much of the driving 2 years ago, and all of it on the summer trip to the UK. It's the quiet, the lack of conversation, that got to me this time.
Richard always had something to say - sometimes useful, sometimes not, sometimes entertaining, but I was never really aware of how quiet it could be until I told myself (sometimes out loud!) "Oh, right, this is where so-and-so got scalped" or "I remember this plain from that trip" or even "Oh, yeah, that place had good french fries" because I recalled these Richard had said or done, from the last trip down here.
One unexpected smile was when I passed this sign in Idaho on the last leg home - Richard had nicknamed the wheelchair van "Lucille" in a nod to B.B. King's guitar (the story of the name here - https://www.wikiwand.com/en/Lucille_(guitar)), so happening across a roadsign, I had to stop, turn around & get a pic! Richard WOULD have loved it.
A world away from New York, I also happened across Lady Liberty (of the Lake) in Idaho; an impractical rush for a wheelchair across a frigid park & out on a concrete pier though, but he would have wanted me to go, so I did.
On the final stretch, back in Canada, in Sparwood, B.C., I discovered something I doubt either of us knew about (else we'd definitely have stopped on one of the several Vancouver trips) - the "World's Largest Truck" (I think its record been superseded since it was parked, though).
I'm glad we had the times we did - good and bad - and that we did the things & went the places we did - this trip is dedicated to Richard and his great sense of humour. I hope you enjoyed reading about it, as I enjoyed writing about it.
You can reminisce on Richard's musing about our Louisiana road trip by starting on Day One here - https://richardislivingwithals.blogspot.com/2017/02/road-trip-advice.html
Friday, 4 January 2019
The next road trip will be a little bit lonely
***This is David writing, under my own profile now.***
I'm going on the road again.
My mother's birthday is next weekend, and I'm off to Toronto to visit.
I don't have a blog myself, but feel it fitting to post my stories here, as it was Richard who brought the love of the road, into my life.
I have a new car and want to test its mettle by giving it a good drive.
Richard had seen this car in the summer, and approved, so it's fitting I initially write about it here.
It's just too bad he couldn't come with me this time - but I have a piece of him along for the ride... no, not an actual PIECE of him, but one of his annual ALS Walk (in Alberta, it's Betty's Run) participation medals. It's too big for the rear-view mirror, but it's hanging on the back of the driver's seat. So at least in some way, the big oaf is along for the ride.
I scouted the trip as the next trip Richard & I were planning to take - through the northern states (we called it 'the Dakota Trip') to Montana, Wyoming, the Dakotas & areas nearby.
I thought I would extend it to Chicago & around the lake to Toronto.
However, many of the sites-worth-seeing along the way, are closed during the winter months, so it would be basically 3,600km (2,250 miles) of straight-through - not even Richard, who loved the road, would likely be ready for a bare-bones drive like that with nothing planned to see or do along the way.
So I scouted possible locations a few days' drive from Calgary (in all directions!) and what airfare to Toronto was like from those areas. For this month, Salt Lake City won out as the place to visit, with Boise, Idaho as the airport of choice.
I'll drive 2-3 days to Salt Lake City, spend a few days there, zip up to Boise & fly out to see Mom for 3 days, then return & finish the road trip back home.
Much of this trip will be repetitive - Richard & I have covered the first 3 days' drive, and most of that distance we've done twice(!).
But this time, I'll do some of the things we didn't do before - either because he had zero interest in somewhere that I wanted to go, or because time didn't allow for the detour.
Richard didn't get much into taking photos; he wanted the memories and the experience. But with the ALS giving him an expiry date, I made it a point to get LOTS of photos of him, so his family & friends could remember his experiences even if they weren't there with him,
I'll share some of my photos here - specifically those where I know Richard would have enjoyed something - and hope you will laugh along...
I'm going on the road again.
My mother's birthday is next weekend, and I'm off to Toronto to visit.
I don't have a blog myself, but feel it fitting to post my stories here, as it was Richard who brought the love of the road, into my life.
Richard had seen this car in the summer, and approved, so it's fitting I initially write about it here.
It's just too bad he couldn't come with me this time - but I have a piece of him along for the ride... no, not an actual PIECE of him, but one of his annual ALS Walk (in Alberta, it's Betty's Run) participation medals. It's too big for the rear-view mirror, but it's hanging on the back of the driver's seat. So at least in some way, the big oaf is along for the ride.
I scouted the trip as the next trip Richard & I were planning to take - through the northern states (we called it 'the Dakota Trip') to Montana, Wyoming, the Dakotas & areas nearby.
I thought I would extend it to Chicago & around the lake to Toronto.
However, many of the sites-worth-seeing along the way, are closed during the winter months, so it would be basically 3,600km (2,250 miles) of straight-through - not even Richard, who loved the road, would likely be ready for a bare-bones drive like that with nothing planned to see or do along the way.
So I scouted possible locations a few days' drive from Calgary (in all directions!) and what airfare to Toronto was like from those areas. For this month, Salt Lake City won out as the place to visit, with Boise, Idaho as the airport of choice.
I'll drive 2-3 days to Salt Lake City, spend a few days there, zip up to Boise & fly out to see Mom for 3 days, then return & finish the road trip back home.
Much of this trip will be repetitive - Richard & I have covered the first 3 days' drive, and most of that distance we've done twice(!).
But this time, I'll do some of the things we didn't do before - either because he had zero interest in somewhere that I wanted to go, or because time didn't allow for the detour.
Richard didn't get much into taking photos; he wanted the memories and the experience. But with the ALS giving him an expiry date, I made it a point to get LOTS of photos of him, so his family & friends could remember his experiences even if they weren't there with him,
I'll share some of my photos here - specifically those where I know Richard would have enjoyed something - and hope you will laugh along...
Tuesday, 1 January 2019
New Year, New Writings
***This is David writing again***
I wasn't sure how or if we should continue working with this blog; most of Richard's friends & family are on board with occasional posts, to remember him by and to laugh about the good times.
His family held a memorial service in November in White Rock, BC, where friends & family gathered to share stories, tell tales & raise a glass to him - it was a good afternoon.
Memories are made to be cherished, and many of those also to be shared.
Richard would want his memory both cherished and shared... and this is the perfect way to do it.
I cannot speak as a PALS, of course; the subject matter of any future posts would be of some other nature - Richard-related mostly - so I hope that those who have read his writings in the past, and who know some of the names of future writers - myself, his kids - will enjoy our posts like you enjoyed his.
So we will keep on keeping on, and post occasional musings, thoughts, and for my own part, road trip stories, remembering him as we go.
It won't be regular, but hopefully it will be worth checking in on once in a while.
-David
I wasn't sure how or if we should continue working with this blog; most of Richard's friends & family are on board with occasional posts, to remember him by and to laugh about the good times.
His family held a memorial service in November in White Rock, BC, where friends & family gathered to share stories, tell tales & raise a glass to him - it was a good afternoon.
Memories are made to be cherished, and many of those also to be shared.
Richard would want his memory both cherished and shared... and this is the perfect way to do it.
I cannot speak as a PALS, of course; the subject matter of any future posts would be of some other nature - Richard-related mostly - so I hope that those who have read his writings in the past, and who know some of the names of future writers - myself, his kids - will enjoy our posts like you enjoyed his.
So we will keep on keeping on, and post occasional musings, thoughts, and for my own part, road trip stories, remembering him as we go.
It won't be regular, but hopefully it will be worth checking in on once in a while.
-David
Friday, 12 October 2018
I miss my Dad...
**David writing again...
Richard wrote this back in July.
It is unfinished, and I don't think it was intended to be a blog post, but it's exactly the sort of thing he'd share, when he was done with it.
It is somewhat fitting that he writes of missing his Dad, as we miss Richard.
"
Richard wrote this back in July.
It is unfinished, and I don't think it was intended to be a blog post, but it's exactly the sort of thing he'd share, when he was done with it.
It is somewhat fitting that he writes of missing his Dad, as we miss Richard.
"
I miss my Dad. I remember so much about him
and often wonder what he would think of this or how he would handle that or
what he would say about the next thing. He was my Dad. He was not perfect; he
was deeply flawed, almost incapable of any emotional connection beyond anger.
Yet he was my father, my Dad.
Richard Thomas McBride was born in East
Kildonan, a part of Winnipeg, Manitoba, the center most province in Canada,
equidistant from all three Canadian oceans. Perhaps that is why he was destined
to join the Canadian Navy. Perversity was my Dad’s name just as often as the
name he acquired in the navy, “Mac”.
His birthday was, and still is, October 3,
1930. He was born between the two great wars of the twentieth century, too late
for World War One, where his father, uncle and grandfather all fought, and too
late for World War Two, where is older brother Adam fought. I would like to say
he was born in the sweet spot, at the perfect time, but that would be a
betrayal of his service in the Korean War. There were plenty of wars to go
round in the twentieth century and likely there will always be some place where
men can kill other men in the service of something they don’t understand and will
never reach.
My father spent his childhood years in
Winnipeg, living at the end of the streetcar line where the bright yellow tram
cars of the Winnipeg Electric Company turned around, taking the working class
from this outer suburb into the Winnipeg city center each morning and returning
them back each night. Like a great many cities in the depression era, the
streetcars ran to the very edge of the city. In his case it stopped near the
end of his street. At the other end of his street, off to the east, there was
nothing but open prairie and the rail yards of the CPR. The other side of his
childhood dominion was bounded by the sluggish and muddy Red River. He loved
his childhood time; the prairie was his playground and the Red River was his
personal Mississippi.
He was the second of four children. His
older brother, Adam, was born in 1925. Then, five years later my Dad came
along. Five years after that, in 1935, his sister Diane was born. Then, in the
mid-1940’s his brother, born with Downs Syndrome, came into his life. For the
whole of his life my Dad admired his older brother Adam in spite of his erratic
and unkind, sometimes criminal, behaviour. For the whole of his life, my Dad
doted on Ronnie, granting his every wish in spite of the damage to a man who,
due to his incapacity to understand, would often ask for the very things that
were worst for him; more food, more candy, more beer, staying up late. My Dad
would not say “no” to Ronnie, and he could not say “no” to his older brother
Adam.
The Great Depression hardly touched my
father. He once said to me that if it weren’t for the neighbours and others
around him, he would never have known there was a Depression. His father, my
grandfather, worked for the railroad all through the 1930’s. While the pay was
not great, there was always money for the family, albeit often subsumed with my
grandfather’s prodigious ability to consume alcohol.
"
-30-
Monday, 8 October 2018
I have lots to give thanks for this Thanksgiving, really.
**David again... (I feel the need to keep stating this... just in case... :) )
Today is Canadian Thanksgiving.
Richard often gave thanks for having so many people in his life, who cared, who shared, and who occasionally put him in his place when he acted up.
He acted up a lot after the diagnosis. Wouldn't you?
"Hi, I'm your neurologist. I hope your credit card has a 4-year expiry date on it, 'coz you don't! LOL"... <sigh>
Richard would have thought that was funny. I'd admit it if not...
He got angry. That's part of life. Often, it's a passing issue, like missing the last train, not having enough cash to buy lunch with, or being 20 minutes late for a movie.
With ALS, you have a lot to be angry about. Life, the Universe, and Everything, can be blamed for it, but you still have to deal with it. Having ALS steamed him up.
He blew off that steam with this blog, and more than a few of you, his readers, have thanked him for it.
He never felt he was a spokesperson, an advocate, a role model, or an inspiration.
His personal, real, day-to-day life, didn't seem that special to him.
Many agreed, and didn't think him that special... he was just being himself.
But there really WAS something special about him.
His ability to laugh at his terminal illness.
His ability to laugh at him peeing on himself.
His ability to laugh at anything, really.
It might take an hour, a day, or a few stiff drinks, but eventually, he'd be able to laugh at pretty much anything life threw his way.
Any time there was another bump in the road, friends around him would help remind him that "things could be worse," to which he inevitably replied with a smirking shriek, "I have ALS. How, exactly, could things be worse?!?" Often, the reply was "You could be out of Scotch."
He'd give Thanks for a stocked bar.
Then he'd give Thanks for a stocked fridge.
For a roof over his head.
For friends & family to keep him centred.
He had a lot to be thankful for.
So did we, who knew him.
Today is Canadian Thanksgiving.
Richard often gave thanks for having so many people in his life, who cared, who shared, and who occasionally put him in his place when he acted up.
He acted up a lot after the diagnosis. Wouldn't you?
"Hi, I'm your neurologist. I hope your credit card has a 4-year expiry date on it, 'coz you don't! LOL"... <sigh>
Richard would have thought that was funny. I'd admit it if not...
He got angry. That's part of life. Often, it's a passing issue, like missing the last train, not having enough cash to buy lunch with, or being 20 minutes late for a movie.
With ALS, you have a lot to be angry about. Life, the Universe, and Everything, can be blamed for it, but you still have to deal with it. Having ALS steamed him up.
He blew off that steam with this blog, and more than a few of you, his readers, have thanked him for it.
He never felt he was a spokesperson, an advocate, a role model, or an inspiration.
His personal, real, day-to-day life, didn't seem that special to him.
Many agreed, and didn't think him that special... he was just being himself.
But there really WAS something special about him.
His ability to laugh at his terminal illness.
His ability to laugh at him peeing on himself.
His ability to laugh at anything, really.
It might take an hour, a day, or a few stiff drinks, but eventually, he'd be able to laugh at pretty much anything life threw his way.
Any time there was another bump in the road, friends around him would help remind him that "things could be worse," to which he inevitably replied with a smirking shriek, "I have ALS. How, exactly, could things be worse?!?" Often, the reply was "You could be out of Scotch."
He'd give Thanks for a stocked bar.
Then he'd give Thanks for a stocked fridge.
For a roof over his head.
For friends & family to keep him centred.
He had a lot to be thankful for.
So did we, who knew him.
Sunday, 7 October 2018
The party to end all parties?
***David writing again...
Last night we had a party. Perhaps the party to end all parties.
Not a wild, raucous, who-is-that-crashed-out-on-the-couch party, but the 'last party' at Richard's.
There isn't another like him; there won't be another party like his.
I posted on Thursday that we had already-in-motion, plans for a Thanksgiving dinner party at Richard's place on Saturday.
He would have wanted it done in his absence (he truly did want us to gather once he was gone - to empty the freezer and have one last evening in the place many of us came to know as our social centre), so it was a fitting tribute we shared drinks, good stories, bad jokes, a few tears, and lots of food.
It was a good party - considerably quieter than normal, but not from a sombre mood; it was from a lack of his deep voice taking centre stage, demanding attention, wanting to be heard.
We will miss him, but as he told us, and as one learns as one ages, life must 'go on'...
We remember, we smile, we move forward.
Many of 'The Group' were unable to attend last night.
People have their own lives, several were on vacation.
We will have another party, soon, so they will have a chance to catch up.
It won't be the same, as it won't be at the apartment, but it will be the people that matter - the people in his life, and the memories we have of him.
It will be hard to find another setting where everyone would be so welcome, so appreciated just for randomly dropping by. This was partly Richard being stuck at home a lot of the time because of the ALS, wanting people around him; but partly it was simply his way - he was a social animal.
He was a good host, and always worried about what to prepare, what to offer, what food or snacks to buy - even when struggling with a budget, and knowing full well that our potlucks inevitably ended with food to spare, he worried about being a good host.
Last night, he was a great host. We remembered the best things, and occasionally the worst, about him, and raised a few glasses to the simple grey urn with his ashes in it, resting on top of the bar - even in the afterlife, he probably wanted to be near his Scotch...
For the first time, though, the instructions were clear - empty the fridge & freezer, it wasn't needed any more. Lots of people took lots of food, so much that there won't be any Tupperware in the estate when time comes to clean out the apartment.
That's what he wanted, so that's what we did.
It was a good party; he was the guest of honour, a role he often just plain expected us to give him. This time, it was true. It's just too bad he missed it. He'd have had lots of fun.
Last night we had a party. Perhaps the party to end all parties.
Not a wild, raucous, who-is-that-crashed-out-on-the-couch party, but the 'last party' at Richard's.
There isn't another like him; there won't be another party like his.
I posted on Thursday that we had already-in-motion, plans for a Thanksgiving dinner party at Richard's place on Saturday.
He would have wanted it done in his absence (he truly did want us to gather once he was gone - to empty the freezer and have one last evening in the place many of us came to know as our social centre), so it was a fitting tribute we shared drinks, good stories, bad jokes, a few tears, and lots of food.
It was a good party - considerably quieter than normal, but not from a sombre mood; it was from a lack of his deep voice taking centre stage, demanding attention, wanting to be heard.
We will miss him, but as he told us, and as one learns as one ages, life must 'go on'...
We remember, we smile, we move forward.
Many of 'The Group' were unable to attend last night.
People have their own lives, several were on vacation.
We will have another party, soon, so they will have a chance to catch up.
It won't be the same, as it won't be at the apartment, but it will be the people that matter - the people in his life, and the memories we have of him.
It will be hard to find another setting where everyone would be so welcome, so appreciated just for randomly dropping by. This was partly Richard being stuck at home a lot of the time because of the ALS, wanting people around him; but partly it was simply his way - he was a social animal.
He was a good host, and always worried about what to prepare, what to offer, what food or snacks to buy - even when struggling with a budget, and knowing full well that our potlucks inevitably ended with food to spare, he worried about being a good host.
Last night, he was a great host. We remembered the best things, and occasionally the worst, about him, and raised a few glasses to the simple grey urn with his ashes in it, resting on top of the bar - even in the afterlife, he probably wanted to be near his Scotch...
For the first time, though, the instructions were clear - empty the fridge & freezer, it wasn't needed any more. Lots of people took lots of food, so much that there won't be any Tupperware in the estate when time comes to clean out the apartment.
That's what he wanted, so that's what we did.
It was a good party; he was the guest of honour, a role he often just plain expected us to give him. This time, it was true. It's just too bad he missed it. He'd have had lots of fun.
Thursday, 4 October 2018
I'm hosting a party!!
*This is David writing once again...*
Richard loved a good party.
Richard loved a bad party.
Richad just loved parties!
He loved throwing them.
He loved going to them.
If there was a party somewhere, he wanted in.
I heard recently, that while in the US on a road trip, he discovered a (unrelated) McBride wedding taking place in his hotel... naturally, he wormed his way in & had a great time. A party where none was expected? Perfect!
He missed the housewarming party of Dan & Anisa this past weekend, something he was very much looking forward to.
He would have brought a bottle of his own home-made wine - a Barolo, a Cabernet... whatever would be appropriate for a housewarming. I'm a beer drinker, so what do I know of wine?
I know that I will take a bottle home from his wine rack this weekend, let it age - a year, five, ten perhaps - and then enjoy it with someone I care about, as I cared about him.
This weekend, there will be another party.
We had a Thanksgiving dinner potluck planned for Saturday, once again at Richard's place.
It was decided to continue with the plan, as he would have wanted.
He didn't want anyone to mourn his passing.
He wanted people to 'eat the food and drink the booze' and remember the good times they had with him.
There were plenty of good times.
And they WERE good times.
There were some bad times, of course; like the 'Weekend of Crying', that first weekend after his diagnosis at the rental cabin (bad reason, but good weekend); the day he finally accepted he could no longer drive his pickup truck; the last road trip we took when it became clear he would need a professional caregiver to travel with him to care for his 'personal needs'.
But even with ALS, they were mostly good times.
Richard's Calgary social life started in September of 2010, when he first came to a pub trivia event at the Unicorn Pub downtown. I was an organizer in a social group, and a dozen members came to that event with me.
This was an ongoing, mostly-weekly event at the pub, and a small core group of us had begun to attend regularly.
Then Richard walked in... Immediately, I could tell he'd be trouble <laugh>.
All but two of that original attendee list are still in 'the group' of friends, eight years later.
Most of us see each other fairly regularly, but usually surrounding Richard.
As we are very different people, with very different lives, it pains me to acknowledge that we won't likely be seeing each other as often in the future - Richard was the glue that held 'the group' together.
We will try.
Over time, 'the group' grew larger, people came & went (as happens in life), but the core dozen or so have remained.
On Saturday, most of 'the group' will have one last party at Richard's place, to celebrate his life & the good times.
We will share stories, play a little trivia, do a few rounds of Cards Against Humanity (https://cardsagainsthumanity.com) or Exploding Kittens (https://explodingkittens.com), two of his favourite games, and of course, we will eat the food and drink the booze.
We will laugh, cry, maybe sing & dance (it depends on how much wine there is).
We will enjoy. He would want that.
After all, it's a party.
Wednesday, 3 October 2018
A poem
**David writing...
Richard loved this piece...
Do not go gentle into that good night
-Dylan Thomas
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning
They do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Saturday, 29 September 2018
A 1600-year-old joke
This is David writing once more...
Richard and I both liked Monty Python.
One of Richard's most-oft quotes (as it is for most Python fans) would be hauled out for any appropriate (and often, inappropriate) occasion:
"He's not pining! He's passed on! This Richard is no more!
He has ceased to be! He's expired and gone to meet his maker!
He's a stiff! Bereft of life, he rests in peace!
If you hadn't nailed him to the wheelchair he'd be pushing up the daisies!
His metabolic processes are now history! He's off the twig!
He's kicked the bucket, he's shuffled off his mortal coil, run down the curtain and joined the bleedin' choir invisible!!
THIS IS AN EX-RICHARD!!"
'Dead Parrot Sketch', Monty Python, 1969 (modified)
I don't know if Richard knew this, but the concept behind the skit (that a dissatisfied customer is returning a parrot to the pet store on the basis that it was dead when he bought it, but the storekeeper keeps making excuses for the parrot's lack of response) goes back as far as 400 AD, documented by Hierocles and Philagrius in a compilation of jokes titles "Philogelos: The Laugh Addict".
In this Greek version, a man complains to a slave-merchant that this new slave had just died. The merchant replies, "When he was with me, he never did any such thing!"
I think this is therefore, very fitting to apply to Richard's life - he loved humour and history, and this combination suits him very nicely.
See https://www.telegraph.co.uk/news/newstopics/howaboutthat/3454319/Dead-Parrot-sketch-is-1600-years-old.html
This information relates to a 2004 BBC poll on comedy sketches, where the Python Parrot Sketch took more than double the next highest number of votes as the Number One best sketch.
The Python's "Four Yorkshiremen" was #2 ('you had a house?? Luxury... when I was a lad of 3, I'd have to get up in the middle of the night, lick the road clean around the garbage bin where 12 of us lived, scrounge for food for my 27 siblings, work 19 hours at the mill for tuppence a month, then Dad would thrash us to death before bed. I'd have given my left arm to live in a house..." "Well, by 'house' I meant the cardboard box we lived in - it were a house to US!"), etc...
See https://www.youtube.com/watch?v=1by0-nkKOTs
And then, perhaps fittingly, #3 was the Little Britain characters Lou and Andy (Andy was disabled & in a wheelchair). Everytime Lou went to some extreme to make accessible arrangements for a hotel or access to a movie theater or something, Lou, in the background, would just stand up, walk around & do some stuff, like go for a swim in the pool - or just pee into it - before returning to the chair as Lou turned around to further assist him.
See https://youtu.be/rxFyzbiIVMI
I felt like a Lou more than once while Richard and I were travelling... :)
Richard and I both liked Monty Python.
One of Richard's most-oft quotes (as it is for most Python fans) would be hauled out for any appropriate (and often, inappropriate) occasion:
"He's not pining! He's passed on! This Richard is no more!
He has ceased to be! He's expired and gone to meet his maker!
He's a stiff! Bereft of life, he rests in peace!
If you hadn't nailed him to the wheelchair he'd be pushing up the daisies!
His metabolic processes are now history! He's off the twig!
He's kicked the bucket, he's shuffled off his mortal coil, run down the curtain and joined the bleedin' choir invisible!!
THIS IS AN EX-RICHARD!!"
'Dead Parrot Sketch', Monty Python, 1969 (modified)
I don't know if Richard knew this, but the concept behind the skit (that a dissatisfied customer is returning a parrot to the pet store on the basis that it was dead when he bought it, but the storekeeper keeps making excuses for the parrot's lack of response) goes back as far as 400 AD, documented by Hierocles and Philagrius in a compilation of jokes titles "Philogelos: The Laugh Addict".
In this Greek version, a man complains to a slave-merchant that this new slave had just died. The merchant replies, "When he was with me, he never did any such thing!"
I think this is therefore, very fitting to apply to Richard's life - he loved humour and history, and this combination suits him very nicely.
See https://www.telegraph.co.uk/news/newstopics/howaboutthat/3454319/Dead-Parrot-sketch-is-1600-years-old.html
This information relates to a 2004 BBC poll on comedy sketches, where the Python Parrot Sketch took more than double the next highest number of votes as the Number One best sketch.
The Python's "Four Yorkshiremen" was #2 ('you had a house?? Luxury... when I was a lad of 3, I'd have to get up in the middle of the night, lick the road clean around the garbage bin where 12 of us lived, scrounge for food for my 27 siblings, work 19 hours at the mill for tuppence a month, then Dad would thrash us to death before bed. I'd have given my left arm to live in a house..." "Well, by 'house' I meant the cardboard box we lived in - it were a house to US!"), etc...
See https://www.youtube.com/watch?v=1by0-nkKOTs
And then, perhaps fittingly, #3 was the Little Britain characters Lou and Andy (Andy was disabled & in a wheelchair). Everytime Lou went to some extreme to make accessible arrangements for a hotel or access to a movie theater or something, Lou, in the background, would just stand up, walk around & do some stuff, like go for a swim in the pool - or just pee into it - before returning to the chair as Lou turned around to further assist him.
See https://youtu.be/rxFyzbiIVMI
I felt like a Lou more than once while Richard and I were travelling... :)
Thursday, 27 September 2018
Wow, yesterday REALLY sucked...
Friends of Richard McBride;
This is David writing on his behalf.
This is David writing on his behalf.
It is with great sadness that I must announce Richard passed away suddenly on Wednesday afternoon, at his home in Calgary, as he wished.
This was not ALS that got him! He beat that, at least… he passed quickly, likely from a heart attack.
He did not want anyone to be sad for him being gone; he wanted everyone to be happy for having known him, even from afar.
I for one, would not be the person I am without having met him, and will always treasure the times we had together – whether in a group at trivia nights, in clumps of people at his apartment for dinner & parties, and mostly for our time spent on the road, exploring strange new places, seeking out new things and new friends, and boldly going where no wheelchair has gone before!
He will be missed – his wit, his wisdom, his sense of humour – all words to be polite when I can’t write the real stuff here.
There will be a few informal gatherings in the near future – specifically, no funeral service – but will allow his friends a couple of opportunities to get together and toast his newest adventure.
More news to follow in the next few days, as certain things are decided & plans worked out.
Just remember, Richard was LIVING with ALS, and not DYING from it.
Your condolences are appreciated, and know that he cared about everyone who cared about him.
As for this Post's Title: he would have loved it!
 |
| Stirling Castle, Scotland, 2017 - A rare photo where I got a smile out of him! |
Tuesday, 25 September 2018
Memory Loss
What day is it today? Oh, my computer says Tuesday. I used to have a snap sharp memory, carrying dozens of details and dates, phone numbers and email addresses. These days I have trouble remembering what day it is, sometimes even what month it is. I lay this loss of short term, and even long term, recall is due to the complete shift in my lifestyle, aging, and, to some degree, ALS FTD. Regardless of the reasons, the memory is gone.
If you had asked me a decade ago things which I thought were important in my personality, good in my person, I would have said things like generosity, helpfulness, accepting, flexible. Those things are still within me today, unaffected by ALS. Memory, on the other hand, is a mental muscle. It is not something you list as an important personal trait, as far as I am concerned. Having a good memory reflects neither well or poorly on your personality. It simply reflects where you focus, and how you focus on the things around you.
Except I hate this loss as well, this missing mental acuity. I dislike that I am so unbusy that I forget what day it is. I hate that I miss things, even when I have them in my calendar, because I forget to check my calendar, and I miss the reminders, or forget them as soon as they have played. I hate that I miss my children's birthdays, depending on Facebook to remind me, as unreliable a source as there ever was. I hate that I can't remember what I bought at Costco today without doing a fierce mental grilling.
My Dad's mind was fairly sharp until he died, but nearing 80 had its impact on his short term memory. My Mom is dealing with the early stages of Alshiemer's, so her short term memory gets a pass. Yet she was sharp as a tack right up until 80. Then there is me, failing in body and mind, at the ripe old age of 63. I'm an easy 20 years off the pace, growing old and weak before my time. The loss of short term memory is only one thing; there are many others these days. All of them leave me worn and wondering. Is this really worth it? For now, maybe. Maybe I forget what makes it matter, or not matter. Maybe I just go on without thinking, without remembering.
If you had asked me a decade ago things which I thought were important in my personality, good in my person, I would have said things like generosity, helpfulness, accepting, flexible. Those things are still within me today, unaffected by ALS. Memory, on the other hand, is a mental muscle. It is not something you list as an important personal trait, as far as I am concerned. Having a good memory reflects neither well or poorly on your personality. It simply reflects where you focus, and how you focus on the things around you.
Except I hate this loss as well, this missing mental acuity. I dislike that I am so unbusy that I forget what day it is. I hate that I miss things, even when I have them in my calendar, because I forget to check my calendar, and I miss the reminders, or forget them as soon as they have played. I hate that I miss my children's birthdays, depending on Facebook to remind me, as unreliable a source as there ever was. I hate that I can't remember what I bought at Costco today without doing a fierce mental grilling.
My Dad's mind was fairly sharp until he died, but nearing 80 had its impact on his short term memory. My Mom is dealing with the early stages of Alshiemer's, so her short term memory gets a pass. Yet she was sharp as a tack right up until 80. Then there is me, failing in body and mind, at the ripe old age of 63. I'm an easy 20 years off the pace, growing old and weak before my time. The loss of short term memory is only one thing; there are many others these days. All of them leave me worn and wondering. Is this really worth it? For now, maybe. Maybe I forget what makes it matter, or not matter. Maybe I just go on without thinking, without remembering.
Monday, 24 September 2018
Sleep Day
I've been sleeping all day. That's what can happen when you take a Zopiclone. You get knocked out, staying there until the full effect of the pill wears off. The funny thing is that sometimes they don't work at all, while other times they work as if taken in industrial strength.
This does not mean I did not go through the homecare process of getting up and dressed. I have no choice in that matter. The HCA called from the front door. I woke up and let him in. He came into my apartment and into my bedroom; I was sound asleep. He gently tapped me on my hip. I woke up and dozed my way through the morning process until my shower. We did exercises, which added to my exhaustion. Then he woke my up even more when he put me in my wheelchair.
All of that didn't matter. I told him to skip breafast; I wanted to sleep. I even passed on coffee. Instead I leaned my wheelchair back and went to sleep until 5:00 pm. I am now awake. I am not hungry. I've had a bit of water to drink. And I am ready to go back to sleep.
This does not mean I did not go through the homecare process of getting up and dressed. I have no choice in that matter. The HCA called from the front door. I woke up and let him in. He came into my apartment and into my bedroom; I was sound asleep. He gently tapped me on my hip. I woke up and dozed my way through the morning process until my shower. We did exercises, which added to my exhaustion. Then he woke my up even more when he put me in my wheelchair.
All of that didn't matter. I told him to skip breafast; I wanted to sleep. I even passed on coffee. Instead I leaned my wheelchair back and went to sleep until 5:00 pm. I am now awake. I am not hungry. I've had a bit of water to drink. And I am ready to go back to sleep.
Sunday, 23 September 2018
Mess
Rough night last night, after a very busy day yesterday. There are all kinds of unhappy little things happening to me these days, the kinds of things that can really grind you down. You would think I could get over some of these things, recognizing that they only exist because of ALS. Unfortunately it's the reverse, that they remind me of what it was to not have ALS.
When I eat these days, I put as much on my shirt as I do in my mouth. Unless it is something I can clearly stab, like a piece of meat or a solid vegetable, or perhaps bread if it's got gravy on it. I can do soft stuff that clumps together, like mashed potatoes, but it's a 50/50 shot at getting it to my mouth. My best chance of eating a relatively mess-free dinner is to lean back in my chair so I am not lifting as high with my fork. As to a spoon, the odds go way down. I spill with every lift.
I ate my dinner in the living room last night, a nice green salad with taco beef, cheese, and lots of lettuce. Mostly the lettuce was stabable. It was the taco beef and cheese which were problematic. So now I have this awful mess of dried up beef and cheese, alone with some escaped greenery, crusted onto my living room floor. I'm going to ask my morning HCA to clean it up. I just hate the mess in the first place.
Then there is the spillage from my wine, water, or adult beverages. I simply cannot lift any beverage container without my shakiness creating waves in a glass, most of which splash over the edge, either on to me, or onto the floor, or, when I'm in bed, then onto my sheets. I have reverted to straws now, yet even they can be a challenge, wiggling about in the glass as they do while headed mouthward.
It's all the latest level of frustration. I have to live with it. I don't have to like it. I don't have to apologize for it. It's just the latest part of living with ALS.
When I eat these days, I put as much on my shirt as I do in my mouth. Unless it is something I can clearly stab, like a piece of meat or a solid vegetable, or perhaps bread if it's got gravy on it. I can do soft stuff that clumps together, like mashed potatoes, but it's a 50/50 shot at getting it to my mouth. My best chance of eating a relatively mess-free dinner is to lean back in my chair so I am not lifting as high with my fork. As to a spoon, the odds go way down. I spill with every lift.
I ate my dinner in the living room last night, a nice green salad with taco beef, cheese, and lots of lettuce. Mostly the lettuce was stabable. It was the taco beef and cheese which were problematic. So now I have this awful mess of dried up beef and cheese, alone with some escaped greenery, crusted onto my living room floor. I'm going to ask my morning HCA to clean it up. I just hate the mess in the first place.
Then there is the spillage from my wine, water, or adult beverages. I simply cannot lift any beverage container without my shakiness creating waves in a glass, most of which splash over the edge, either on to me, or onto the floor, or, when I'm in bed, then onto my sheets. I have reverted to straws now, yet even they can be a challenge, wiggling about in the glass as they do while headed mouthward.
It's all the latest level of frustration. I have to live with it. I don't have to like it. I don't have to apologize for it. It's just the latest part of living with ALS.
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