[The Life of Shaun #463] Live, Laugh, Love

Mom's decline from a surprising burst of energy Friday to today has been steep and sudden.  Friday night was family night, with Janine and my Aunt Judy (Mom's twin) coming over.  We had a great dinner, Mom ate pretty well, and we played cards (Mom kicked our asses, by the way - and we were not playing nicely!); Mom was alert, joking and smiling, giving us high fives.  It was a great night, but at the end Mom started to fade, and putting her to bed was the same choreographed traumatic dance it'd become in the days prior.

Saturday she slept more of the day than not, but was still up for dinner and cards, and even had part of a margarita.  But she barely ate and Lara did most of the work as Mom stared at the cards.  Sunday she only got out of bed in the morning because her sister was still here, and she wanted to spend some time with her before she left; that was just about 90 minutes.  We tried to wake her up at 5:00 for dinner time, and she wasn't budging.  Then again at 8:00 as she wanted to watch a movie, and she tried to be awake, but couldn't.

Today, Mom is nearly comatose, figuratively, if not clinically.  She's mostly asleep, only occasionally opens her eyes, and she is having delusions.  She'll smile at times when she recognises a story or someone she likes, and sometimes she tries to talk, but it's mostly unintelligible.  It's stunning to us how fast this happened, how quickly we lost the woman, the personality, that we knew as our Mom.

As discordant as it may sound, this rapid descent into an unaware state is a mixed blessing.  In the past week, it seemed as if Mom was approaching the edge of where the amount of good she was able to have each day would no longer outweigh the pain and indignity she was suffering.  We know from several experiences of friends the alternative path this story could take, the unknowable and unbearable stretch of time, bedridden as the pain grows and becomes ever more agonising.  

Our Mom's had a wonderful life, full of close friends, full of more joy than sorrow, and certainly full of love, given and received.  We want her to have as wonderful a death as she can.  These past six weeks, despite all the pain and sickness, have been wonderful.  Mom had her family, the thing that truly brings her joy, living at home with her to share and enjoy her life.  It may sound odd, but they have been some of the happiest days she's ever had.  Could anyone ask for a better way to go out?

Cheers,

Shaun

Mom enjoying a cigarette with her twin sister and Dad in the smoking lounge we built outside; this is the last pic we have of Mom from a good day.

Mom's life motto, hung on her wall.

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #462] Switch

Last Wednesday or Thursday, my sister called me up from my basement "office" to help Mom get out of bed.  She went from having had relatively good days to not being able to move one of her legs at all.  That day, and since, Mom's needed to pretty much be carried from bed to wheelchair and back.  Her days in the chair are punctuated by frequent dozes; except when she is directly and immediately occupied, she'll often have trouble keeping her eyes open, and her naps are longer than before.  She's also stopped eating as much, and fairly often throws up what she does.

Since it was such an overnight change, we hope it's just that she's caught whatever germ we've been passing around the family, which has laid us low in bed as well.  But we're also aware that these are all signs pointing towards increased deterioration.  Mom's lovely hospice nurse, Nishita, was on holiday last week and after seeing Mom today after a week's absence pulled Lara and me aside to discuss what she saw, too.  In addition to the familiar signs we'd noticed, she could see the weight loss in Mom that our daily contact has hidden from us.  Though no one can know these things with any certainty, she wanted us to know that it's likely Mom's good days are drawing short, possibly as little as another week or two, and she's increasing her visits to twice a week.

Seeing Mom the past many days, none of us are surprised; the change is marked.  But then again, at other times, she's quite peppy - nagging Dad and going out in subzero weather to smoke - the most positive signs Mom can show.  So we don't know - Mom's already doubled what they thought without much treatment - she could be kicking around for a while yet.  But we're carrying the knowledge she mightn't as well.

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #461] How are you?

It's a question I've been getting a lot lately, so I thought I'd answer more broadly.

I am however Mom is.  When she's having a good day, I am too.  About five days ago, Mom had a really bad day; she was trembling and sobbing from the pain, and we ended up doping her up pretty heavily to get her through it.  But since then, we've had pretty good days, at least with the pain mitigation.  We're honing in on a regular and (so far, touch wood) effective rotation of her meds that keeps the worst of the pain at bay.  Mornings are the worst, as she has the longest period without regular "top-ups", so we have a routine to get food, morphine and pills in her as quickly as possible.

The disease is definitely progressing, though.  She has several golf ball-sized tumours protruding from various places, and these have grown noticeably since I arrived a month ago, and we see new ones starting to rise.  They get red and sore, so we have to be careful to avoid putting pressure on them.  Mom's legs have continued to grow weaker and she relies on us fully to help her up from bed and to her wheelchair and back; she can't walk more than a few steps, even aided.  Amazingly, for a lung cancer patient, her breathing is still fine.  We have an oxygen tank on hand, but she's not needed it yet.

So how am I good these days?

It's odd how your perspective changes when caring for someone you love.  I don't think much about the big picture of what's happening, I just think about what Mom needs right now, and that's what I do - that's as big as my world is.  Every now and then, my perspective pulls back, usually when I am thinking about Mom when she was healthy, and that's when it can hit.

Mom's spirits are still high.  I don't know where she pulls that out from, but she laughs and jokes a lot, and loves playing cards with us and working on her puzzle.  She still goes through all the trouble and effort to go outside and have a cigarette, so we know she's OK!  So there's still life to be lived with Mom, and we are all enjoying living it.

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #460] Good riddance

Not sure how 2012 went for everyone, but I know I won't be sad to see the backside of it.  A lot of good things happened this year, but not a moment felt carefree and happy; it's been dispiriting and exhausting and I am ready for it to be done.

But as hard as it's been, it'd've been endlessly harder without the friends and family who've reached out with kindness and caring.  And to all of you, thank you for that.

I hope you all have (or had, for my antipodes) a great New Year's Eve.  Fortunately, Russ is visiting and will be doing his darnedest to help me ring in a better 2013, or at least to drown out 2012.  

And with that, as my friend Alan put it: "Die, 2012, die! I will dance on your grave tonight."

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #459] Coley Christmas Chaos

Christmas with the Coley clan has been great; typical chaos has ensued, but somehow it all came together.  We were a little sad because Mom had three great days leading up to Christmas Eve day, but yesterday and today haven't been as good (but much, much better than the bad days before her good triad; we're never sure what each morning will bring).

Lara, Lisa, Alberto and Mihalis made a fantastic Christmas dinner, ham and turkey, myriad sides, and Aunt Judy made her famous sunshine cake.  I've realised Christmas Eve is the best  day of the year when you have small children as it's the only night they want to go to sleep early.  We closed out the night with plenty of peace and quiet, and several hands of cards.

So a very nice holiday here in the Western suburbs of Chicago.  Russ is coming out for the weekend and NYE (look out, Chicago!), so the festivities will continue!

Cheers,

Shaun

Me and my cousin Janine getting things started.

The Coleys (and a sneaky grand daughter...).

Mom's twin, Aunt Judy, and Mama.

The whole clan!

Me  smiling - someone must've just offered me wine!

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #458] Aldwych

A couple of weeks ago, some friends and I embarked on what Richard called "the equivalent of going to Buckingham Palace for transport geeks": a tour of the disused Aldwych (né Strand) Station.  Aldwych was the Southern terminus of a short shuttle train that ran from Holborn to the Strand/Aldwych, and was the bastard stepchild of the planned tube routes and the ones that eventually emerged.  As this route can comfortably be walked in under ten minutes, it has always been more an expensive dedication to a plan than a useful transport link.

The station was in use until the mid-90s, when it retired and took on a more successful second career as a training centre, model for other station layout testing, and movie set (V for Vedetta amongst the recent examples).  The end came when a lift needed to be replaced and a £3m pricetag was attached to the project.  As the ridership was around 400 people/day at the time, the shutters were drawn on one of London's obscurest urban idiosyncrasies.

The six of us duly oohed and ahed at the disheveled station, the original wooden ticket booths, fading posters, sections of test tile; we chatted with other like-minded Londoners and tourists alike, all smiling and inexplicably happy in the way a kid is on Christmas day; we posed for pics, took pics for others; pontificated about the overground extension to Clapham completing the overground circular and other transport successes and follies -- and all the while it never escaped us that we'd each just spent £20 to look at a tube station.  Money well spent.

Cheers,

Shaun

An old tube map, showing the Aldwych appendage.

The lift that brought the demise.

Old tube posters.

My favourite of the old tube posters - I think people still haven't gotten the message, at least at Bank.

Appropriate.

Jim, me, Richard, James, Alexi and Javier in our glory.

Me surveying the older platform.

Way out.

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #457] Return to Naperville

Advent has brought me back to the Midwest.  I've agreed an arrangement with my manager to work remotely from here for a while to be by Mom for the holidays and after, as needed.

I arrived on Tuesday, after a two-day layover in New York to renew my driver's license, to a much-deteriorated Mom than I left a month ago.  When I saw her last, she was thin and walked slowly, but was good overall.  She's now so weak she needs help any time she moves.  We're getting ready to relocate her to the main floor of the house so she won't have to go up and down stairs anymore.  But by far the worst thing is the pain.  The cancer has spread everywhere; Mom has tumours all over her body - arms, legs, buttocks - everywhere.  One in her arm is pressing on a nerve, which causes her terrible pain any time she moves her arm, so much she screams out sometimes.  We have to be so delicate with every move with her, the slightest pressure causes her agony.  It's like moving delicate glass.

We're working with the hospice doctor to find the right combination and rotation of methadone, morphine and ibuprofen to mitigate the pain; some days it works, other days, like today, it doesn't.  And that's been the hardest thing - seeing my Mom crying from pain and not being able to do anything about it.  It's so awful.

There was a thought that I would return to London at the start of January for a few weeks if Mom were doing well, and then come back here later.  But she's too bad already, so I will be staying here into the new year.  I have some friends who'll be visiting the area over the coming weeks, so have myriad punctuations in my schedule to look forward to and distract me.  And Trader Joe's are doing a roaring trade in red wine with the Coley family.

But despite all the negatives, of course I am so glad to be here.  Our family haven't done Christmas all together in I don't know how many years, and it's really nice to be here all together. Stressful, at times horrible, but mostly nice.

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #456] New York, interrupted

Well, I'm about to head back to America, so thought I should write a little something about my last trip there, just a few weeks ago.

I planned this trip about six months ago: five days in Chicagoland to see Mom and family, a long weekend with Natasha and Mike McGirr in their new home, Asheville, NC, and then nine days in New York, a long overdue reunion with Manhattan and my friends, leading up to a wedding, and then working a few days in the New York office.

It didn't quite turn out like that, though.  Shortly before arriving, I got bad news from my sisters that Mom's taken a turn for the worse.  She'd had a scan and her tumours had grown and she was a lot weaker.  She's off her strict diet and ready to go to all her old favourite haunts,  so the timbre of the visit was very different than when planned.  We did have some really good times though; went to my Mom's favourite steakhouse, had awesome Chicago style pizza, White Fence Farm chicken (well, I had Taco Bell that night - we all have our guilty pleasures! [That's a lie - I feel no guilt.]), late nights playing cards and boozing, lazy afternoons trying to put together Mom's impossible puzzles.

Next in the grand tour was Asheville - my third time in the South (Florida doesn't count - it's its own sort of evil).  It was an awesome weekend for so many reasons.  Most obviously was Natasha & Mike, who I hadn't seen in a long time, and who laid out the red carpet and cruise directing.  From start to finish, we moved from one perfect spot to the next - drinks, food, views and gay bars.  Asheville is quite a gem, too: it's liberal, Democratic, gay-friendly, organic-local-foodie, beer heaven, laid back, walkable, pretty.  It belongs in Northern California more than North Carolina, but that foible of geography means that you can enjoy all the good of the Napa Valley lifestyle without the pretence or crushing expense.  We went to so many great restaurants, but still we walked by so many others I'd like to try, and I'd go back anytime.  If I were a small city guy, it'd be an ideal place to call home.

New York came on the back of Sandy and just before a nor'easter.  (That bitch knows how to welcome you back.)  Due to the downed L, housing had to be rearranged and my friends Niels and & John stepped up and let me stay at their place.  The first night followed tradition, a gaggle of gays (and Rachel) at Pongsri Thai, and the next day Obama smacked Romney down.  But as great as it was, my mind was still in Naperville.  So the next day, after talking to my sisters and hearing Mom had some bad days, I bought tickets and headed out of the Big Apple and back to the Midwestern plains to spend more time with Mom.

And I'll be heading back to Naperville a week from Sunday to stay with the family some more.  I'll be there at the very least to the new year, but indefinitely, depending on how things go.  I am very lucky that work's letting me work remotely from there, despite the fact that I can't possibly work full London hours.  They even offered a leave of absence, but my bank manager declined on my behalf.  But I can be there as long as I need to be, and just not having to worry about that is great.

Cheers from London, for the last time for a bit,

Shaun

Mom and her monster steak at Jack Gibbons.  It was an awesome place - straight out of the 20s, I expected Al Capone to walk through the door.  Loved it!

Mike, Natasha and me on the bank of the French Broad (the river that runs through Asheville).

The Grove Park Inn - one of two competing Gilded Age masterpieces in the area.  Unfortunately, didn't get to see Biltmore; but I'll be back.

Asheville from the Grove Park Inn.  A bit hazy in this pic, but it's nestled in the Blue Ridge Mountains.

Asheville's turned its once derelict riverfront into the River Arts District, full of studios, galleries, restaurants, bars and hippies.

This pic tells you just the kind of place Asheville is (the only pic that would have been better would have been of a white guy with dreadlocks).

Asheville's very own flatiron building.

A typical cute street in Asheville's very walkable downtown.

Old piano and piano garage door on Chicken Alley.

9/11 Memorial looking towards the WFC and the new One World Trade Center.  After a decade of wrangling and heartache, I think they've done a really good job.

Look at me being a tourist!  In New York!

My old home!  278 W. 19th St.  Rent-stabilised at $950/month for a one-bedroom.  One reason I could never move back: I'll never get that kind of deal again.

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Shaun H. Coley | Shadwell | Tower Hamlets | London E1 | UK | www.nocirc.org

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[The Life of Shaun #455] Bratislava

A few weeks ago, one of my most regular travel companions, Mary Keany, and I took another trip together.  This time our destination was Eastern Europe (i.e., behind the old Iron Curtain - don't get snippy with me, "Central" Europeans) to Bratislava.  Within the Soviet satellite state, Bratislava was the second city of Czechoslovakia.  However, after the conjoined twins were separated, Bratislava became the preeminent and capital city of newly independent Slovakia.

I was always interested in Bratislava because it sits so close to the border of Austria, you can see into it.  Much like the fantasy in my mind of East Berliners peering into a strange world they couldn't enter, Bratislava spreads tantalisingly across the river that should separate Slovakia from The West; an iron thorn in the West's rump.

Overshadowed by Prague in the region, Bratislava did not become known to Brits until RyanAir opened a route there, allowing the masses of hens and stags who'd had their first does in Dublin the ability to celebrate their second/third/fourth marriages somewhere a little more exotic.  Though a local taxi driver complained the prices have risen to Vienna levels (Vienna is just a short ride up the Danube), it was very affordable on the pound (even though they're in the eurozone - who knew?!), and the city seems to have managed the influx of low-end tourists quite well.

Bratislava turned out to be really, really nice.  I didn't know too much about it - just had heard it was "pretty".  But I've been to plenty of pretty and disappointing cities.  It's not somewhere for a massive gaycation, but it's a proper city for a good time with a friend.  The city is walkable and charming, big enough to keep you engaged, but small enough to get the feel of over a weekender.  Crucially, everyone speaks English and, thankfully, everyone we encountered was friendly.  The food was good, veggie-friendly, and wine very reasonably priced.  Add in a camp gay bar and viable gay club, and you've got yourself all the ingredients for a good weekend away.

Cheers from Naperville during some rare quiet time,

Shaun

Our hotel had a photography conference on the same weekend we were there.  I found this one the most... erm, interesting.

MK with the classic Bratislava view.

Bratislava's main street in the old town.  It's lined with restaurants, bars and cafés.  Though they of course cater to the hen/stags, they are not charmless or overpriced.

Mary and I found this charming: the Slovaks, realistic about their geography, provide blankets in addition to heat lamps for their outdoor space.

The main square.

On one end of the New Bridge is the "UFO Tower", which of course I was immediately drawn to.

Once inside you can see the Soviet-era blocks spreading out from the city centre (new shopping mall to the fore).  Just beyond the blocks is Austria.  In fact, a lot of what you can see from the tower is Austria.

Old Town from the UFO Tower.  An interesting anecdote is the highway driving down the middle of the city, passing immediately in front of Bratislava's main church.  The Soviets did this purposely to show their disdain for religion.  They also paved over the former Jewish quarter to build this highway.

This is either a mural to the glory of the proletariat or an example of pre-internet gay porn, not sure which.

Me at one of the many street cafés; this is how Mary found me most of the weekend.

Map showing how Bratislava abuts the former Iron Curtain.  Light pink shading shows the city limits; where it lines up with the dark grey line on its left, that is the border with Austria (oddly not following the Danube as it it does in most of the region).

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Shaun H. Coley | Shadwell | Tower Hamlets | London E1 | UK | www.nocirc.org

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[The Life of Shaun #454] Naperville redux

Hi all,

Just thought I would send a quick update.

I am currently nearing the end of a two-week trip to America.  Original plan was to see Mama and the family for about a week, then some friends in Asheville for a long weekend, then New York for a week for visits, a wedding of Rahul's friend, and working from the New York office for a few days.  

First part worked out, but the last bit has had to be altered.  After a few days in New York, I spoke with my sisters to see how things were, and Mom had had some hard days, especially on the day I had called.  So I truncated New York, which means I will miss the wedding, and have come back to Naperville to see Mom some more on this leg of the trip.

Back to New York on Sunday and then London on the 13th.  Planning on coming back for 2-3 weeks in December.

Those who know Mama and would like to call/say hello, she doesn't check eMail very often anymore, so it's best to call her @ 630-995-3198.

More details on the rest of the trip and Bratislava from a couple weeks ago soon, but for now just wanted to let everyone know what's up.

Cheers,

Shaun

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Shaun H. Coley | Shadwell | Tower Hamlets | London E1 | UK | www.nocirc.org

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