I'm done being a caregiver. Therefore, caregiv'r is done.
When I began writing up the next entry, I kept asking myself *why* I was doing this. WHY am I peeling off the scabs of these wounds that had already healed?
To let people know what went on...? to let people know how hard it was, to give some voice to all those days when I answered that 'Things were going okay' when really, it felt like it was all falling apart.
What came after his initial month-long induction period in the hospital was the beginning of an incredibly dark couple of years, years that I am happy to now have as only fuzzy memory, when at the time I felt so overwhelmed by it all. I am still so tempted to go into more detail, to tell you all the crazy shit that happened & all the stuff I had to do, but really, this was never about me, how could it possibly be? I don't need to re-tell any of these stories, not here.
I've been reading Joan Didion's 'Year of Magical Thinking'. I read it years ago, when it first came out but now, given what has happened, it is a much different read. She, being her, very effectively put into words exactly how I feel:
"The way I write is who I am, or have become, yet this is a case in which I wish I had instead of words and their rhythms a cutting room, equipped with an Avid, a digital editing system on which I could touch a key and collapse the sequence of time, show you simultaneously all the frames of memory that come to me now, let you pick the takes, the marginally different expressions, the variant readings of the same lines. This is a case in which I need more than words to find the meaning."
This. This this this! This is how I feel. I wish I could take you by the hand & just fly you over to the events, have you stand for a moment in the room when certain things were happening, like the visiting ghosts did with Bob Cratchit. I'd put things in your hands, heavy things 'this is how it felt'.
Maybe I wanted to write the past out so that I wouldn't have to have these memories all to myself, so that at least you would be there with me. It was a really lonely, harrowing experience, but telling you guys isn't going to make it any different. The times have already been had. I've already done them.
I am learning to accept the past for what it was, learning now to thank those years for happening, as they have shaped who I am, which as it turns out, is a pretty tough (though compassionate) & capable cookie. The future is happening every minute. I am ready to push forward. I am more than ready to leave those nasty memories where they are now, which is in the back of my mind. The other day, during an awfully funny exchange at work (Yes! I am back!), I said 'Guys! Don't worry! I still tell jokes! I'm still funny!' and my co-worker said to me: "I think you're even funnier." I thought about it & agreed - and said that it's because I don't have anything to worry about anymore. I was always sad before. Maybe not outright mopey, but there was a grey gloomy cloud that followed me around for 4 whole years. Gloomy cloud is gone.
So thanks, I can't tell you how good it's been to have you reading along during these last 4 months. I've been really touched by all the nice things people have said to me, and pretty surprised by the response this blog had. I started this the day after Gord went back into the hospital after transplant. I remember telling him about it & he told me to send out the link to 'a couple of people'. Since then, there have been 25,953 visits to this blog. Amazing.
Gee whiz....so how do you end a blog? I'm reminded of marathon phone calls with friends when I was a kid. 'Okay....on the count of 3, we'll both hang up. 1.......2......3......
'Hey...you didn't hang up!'
'You didn't, either!'
'okay, for real this time.'
xoxo
Nicole
Saturday, April 21, 2012
Monday, March 26, 2012
admission
So where'd I leave off? Oh yes - diagnosis.
I can very clearly remember the day. I had not gone into work (I had been trying very hard to keep my normal 9-5 work schedule, since it was a new job & I didn't want them to think I was being dramatic or that I'd be a 'problem') I went to the laundromat to do the piles & piles of laundry that had built up. Then, I made my way to the hospital. I remember my hair being pulled back in a very messy ponytail. Gord's mom, dad, brother & sister in-law were in the room when I walked in. Gord was sitting up in bed casually sipping from a gigantic Booster Juice cup.
A couple of days before, we had to go to Princess Margaret for a bone marrow biopsy. That is when I started to understand things were serious.
So that day, when I walked in, they had received the biospy results: Acute Lymphoblastic Leukemia.
I cried. I cried & cried. I knew nothing about what Leukemia was, and I certainly didn't know anything about how they treated it. They told us not to google. Gord was sent home a couple of days after that. They told him he'd be admitted into PMH to begin his 'induction', which would last a month. They'd call us when a bed was available.
So he came home, and we hung out kind of like normal - just waiting for them to call us & tell us they had room for him. There were a bunch of appointments he had to go to - tests to make sure he could handle the treatment and one to get his Hickman line inserted. I had no idea what a Hickman was - and I don't think Gord did either. They can *tell* you they are going to insert tubes into your chest that go into your heart, but that's kind of hard to picture until you actually see it. The day I came home from work & he showed me.... I stared. 'Oh, so they LITERALLY inserted tubes into your chest?' 'Yeah, looks like it, huh?'
He was only home for about a week and a half before they called to say there was a spot. Saturday November 3rd, 2007.
The night before, some of his friends from work were gathering for drinks - someone's going away or birthday or welcome back, I forget exactly. But we went out. We went out & drank beer & he laughed & carried on with people & a bunch of them sat & talked to me about how much they liked Gord, about what a great guy he was. It was fun.
The next morning, he got all his stuff packed up & his friend Geordie came & drove us to the hospital.
Weekends at PMH are quiet - everything was so quiet, except for the sounds of his roommate throwing up on the other side of the curtain that separated their beds. The nurse gently told us that 'He's not having a very good day....'
This was going to be home base for the next 4 weeks or so - this room in this hospital that would become something of a second home to us. Geordie left, I went to pick up some things Gord needed, and I came back in the evening. The only other thing that stands out so incredibly clearly to me is that night, Gord was feeling good, he wasn't hooked up to anything, he had all his hair, he was wearing his normal clothes & we were just hanging out in this....this hospital. We found one of the quiet rooms & cuddled on the couch, just like at home. It was so hard for me to accept that he was sick because to me, at that time, he was still so strong, so healthy. We talked about what was ahead of us (or what we thought was ahead - they didn't tell us much) and he cried. I remember exactly what made him cry: "I love Canada so much & I haven't seen all of it". I promised him we would.
I can very clearly remember the day. I had not gone into work (I had been trying very hard to keep my normal 9-5 work schedule, since it was a new job & I didn't want them to think I was being dramatic or that I'd be a 'problem') I went to the laundromat to do the piles & piles of laundry that had built up. Then, I made my way to the hospital. I remember my hair being pulled back in a very messy ponytail. Gord's mom, dad, brother & sister in-law were in the room when I walked in. Gord was sitting up in bed casually sipping from a gigantic Booster Juice cup.
A couple of days before, we had to go to Princess Margaret for a bone marrow biopsy. That is when I started to understand things were serious.
So that day, when I walked in, they had received the biospy results: Acute Lymphoblastic Leukemia.
I cried. I cried & cried. I knew nothing about what Leukemia was, and I certainly didn't know anything about how they treated it. They told us not to google. Gord was sent home a couple of days after that. They told him he'd be admitted into PMH to begin his 'induction', which would last a month. They'd call us when a bed was available.
So he came home, and we hung out kind of like normal - just waiting for them to call us & tell us they had room for him. There were a bunch of appointments he had to go to - tests to make sure he could handle the treatment and one to get his Hickman line inserted. I had no idea what a Hickman was - and I don't think Gord did either. They can *tell* you they are going to insert tubes into your chest that go into your heart, but that's kind of hard to picture until you actually see it. The day I came home from work & he showed me.... I stared. 'Oh, so they LITERALLY inserted tubes into your chest?' 'Yeah, looks like it, huh?'
He was only home for about a week and a half before they called to say there was a spot. Saturday November 3rd, 2007.
The night before, some of his friends from work were gathering for drinks - someone's going away or birthday or welcome back, I forget exactly. But we went out. We went out & drank beer & he laughed & carried on with people & a bunch of them sat & talked to me about how much they liked Gord, about what a great guy he was. It was fun.
The next morning, he got all his stuff packed up & his friend Geordie came & drove us to the hospital.
Weekends at PMH are quiet - everything was so quiet, except for the sounds of his roommate throwing up on the other side of the curtain that separated their beds. The nurse gently told us that 'He's not having a very good day....'
This was going to be home base for the next 4 weeks or so - this room in this hospital that would become something of a second home to us. Geordie left, I went to pick up some things Gord needed, and I came back in the evening. The only other thing that stands out so incredibly clearly to me is that night, Gord was feeling good, he wasn't hooked up to anything, he had all his hair, he was wearing his normal clothes & we were just hanging out in this....this hospital. We found one of the quiet rooms & cuddled on the couch, just like at home. It was so hard for me to accept that he was sick because to me, at that time, he was still so strong, so healthy. We talked about what was ahead of us (or what we thought was ahead - they didn't tell us much) and he cried. I remember exactly what made him cry: "I love Canada so much & I haven't seen all of it". I promised him we would.
Wednesday, March 21, 2012
how/where am I?
I write a blog entry pretty much every day. The problem is, they are
in my head & by the time I sit down to actually write I feel so
overwhelmed by it all. My mind is constantly darting from one thing to another. Remembering. Things he said, the way
he did things, a conversation from the past will replay in seconds in my
mind. The smell of his cooking, the feel of his shirt on my cheek.
Kitchen hugs while waiting for the kettle to boil.
It's been two whole months. Things are okay, in general. I get up every single morning. I have Frankie to thank for that; I can easily understand widows who simply can't. Some days it takes a lot to push myself up. I make coffee - I have finally finally figured out the correct coffee:water balance to make it for just me. Ever since he went into the hospital in November (seems so long ago, doesn't it?) I had been making coffee as I always did. Two cups for each of us. I do find it a little funny to note here that I always insisted to him that you should let the coffee & the water mingle a little before plunging down the filter thing on the bodum, but he would pour in the water & immediately PLUNGE. I no longer let anything mingle. I go straight for the plunge. I make breakfast, we play, she naps, I putter. I knit, she explores, we walk. All day long I think 'I wish Gord could see this. I wish he were here.' In quiet times, when I close my eyes and try my best to communicate with him somehow, the thing that runs through my head is a constant stream of 'comebackcomebackcomebackcomeback. please. just come back.'
It's like half of my heart is this heavy gelatinous blob - jiggling, changing shape, unable to stay within the lines. The other half is light. It is gentle and hopeful and bursting with love. So much love for this man that made me the woman I am right now. Slowly I am going through his things & it's only making me love him more, making me realize what a gem I had in him. We all had.
I am doing much, much better than I imagined I would. I am incredibly pleased to discover that life goes on - I still tell jokes, I still dance and clap my hands, I am still able to do all of my *Nicole* things. I am keeping our life going. I will have sudden, very short bursts of tears or sadness at certain times (Frankie LIGHTS UP when she sees a picture of Gord and while this is a wonderful, wonderful thing & I am so thankful for some recognition there, it is heartbreaking. It is full on crackmyheartinhalf breaking.) but overall, generally, I am OK. And that is very reassuring.
I'll continue to talk about our 'journey' (Gord referred to it as his 'journey' very sarcastically while in the hospital before he died, and he rolled his eyes so much they practically fell out of his head) in the next post. I just wanted to come back, say hello, tell you that I'm still here. I am not curled up in a ball of grief. On the contrary - I take time to stretch every day.
It's been two whole months. Things are okay, in general. I get up every single morning. I have Frankie to thank for that; I can easily understand widows who simply can't. Some days it takes a lot to push myself up. I make coffee - I have finally finally figured out the correct coffee:water balance to make it for just me. Ever since he went into the hospital in November (seems so long ago, doesn't it?) I had been making coffee as I always did. Two cups for each of us. I do find it a little funny to note here that I always insisted to him that you should let the coffee & the water mingle a little before plunging down the filter thing on the bodum, but he would pour in the water & immediately PLUNGE. I no longer let anything mingle. I go straight for the plunge. I make breakfast, we play, she naps, I putter. I knit, she explores, we walk. All day long I think 'I wish Gord could see this. I wish he were here.' In quiet times, when I close my eyes and try my best to communicate with him somehow, the thing that runs through my head is a constant stream of 'comebackcomebackcomebackcomeback. please. just come back.'
It's like half of my heart is this heavy gelatinous blob - jiggling, changing shape, unable to stay within the lines. The other half is light. It is gentle and hopeful and bursting with love. So much love for this man that made me the woman I am right now. Slowly I am going through his things & it's only making me love him more, making me realize what a gem I had in him. We all had.
I am doing much, much better than I imagined I would. I am incredibly pleased to discover that life goes on - I still tell jokes, I still dance and clap my hands, I am still able to do all of my *Nicole* things. I am keeping our life going. I will have sudden, very short bursts of tears or sadness at certain times (Frankie LIGHTS UP when she sees a picture of Gord and while this is a wonderful, wonderful thing & I am so thankful for some recognition there, it is heartbreaking. It is full on crackmyheartinhalf breaking.) but overall, generally, I am OK. And that is very reassuring.
I'll continue to talk about our 'journey' (Gord referred to it as his 'journey' very sarcastically while in the hospital before he died, and he rolled his eyes so much they practically fell out of his head) in the next post. I just wanted to come back, say hello, tell you that I'm still here. I am not curled up in a ball of grief. On the contrary - I take time to stretch every day.
Wednesday, February 8, 2012
anniversary.
This last week was our anniversary. On February 4th, 2006, we were on my back deck smoking cigarettes & Gord asked me if I would want a boyfriend.
"Depends on who it was"
"It'd be me".
"Well then, I think that'd be great".
We had had our first date only 2 days before & I guess we both knew right away that we'd be a good match. After we became boyfriend & girlfriend on my back deck, we went to a show. His friend's band was playing. When we got there, I ended up knowing a lot of people since his friend's band was opening for my friend's band.
'You're out of my league' he said to me.
When he went to get us beers, I looked at him from across the room & wondered if I could 'date an old guy'. Thinking back on these two things now, knowing what I know about him, and about me, it seems pretty hilarious. HE was out of my league (but eventually I think our playing field evened out quite nicely) and yeah....for someone who would have made a terrific 'old guy' he wasn't there yet. Not at all.
From then on we became nearly inseparable. I'd go to his apartment & he'd cook dinner. We'd drink coffee & he'd make music while I sat on the floor knitting. We'd curl up on his futon & listen to radio... The Best Show or This American Life or The Great Eastern. We went for lots of walks & bike rides. We watched his fine collection of The Urban Peasant on VHS. We'd make plans - lots of them.
It's really crazy to think that we only spent 6 years together. It felt like a lot longer than that. He moved in with me June 2007. Very shortly after that he started getting sick - undiagnosed. He went to the Doctor right when things started. The problem with Leukemia I guess is that the symptoms are so random & of course checking for cancer isn't the first thing they do - he was put on an inhaler, he was given a prescription for physiotherapy, he was told to take advil 'as needed' - even if that meant all day long. After months of back pain, fatigue, excessive night sweats, body aches and vomiting we went to the ER. It was Sunday, October 21, 2007. I started my brand new job the next day. By the end of the week, he had been diagnosed with Leukemia.
And that's how it started.
"Depends on who it was"
"It'd be me".
"Well then, I think that'd be great".
We had had our first date only 2 days before & I guess we both knew right away that we'd be a good match. After we became boyfriend & girlfriend on my back deck, we went to a show. His friend's band was playing. When we got there, I ended up knowing a lot of people since his friend's band was opening for my friend's band.
'You're out of my league' he said to me.
When he went to get us beers, I looked at him from across the room & wondered if I could 'date an old guy'. Thinking back on these two things now, knowing what I know about him, and about me, it seems pretty hilarious. HE was out of my league (but eventually I think our playing field evened out quite nicely) and yeah....for someone who would have made a terrific 'old guy' he wasn't there yet. Not at all.
From then on we became nearly inseparable. I'd go to his apartment & he'd cook dinner. We'd drink coffee & he'd make music while I sat on the floor knitting. We'd curl up on his futon & listen to radio... The Best Show or This American Life or The Great Eastern. We went for lots of walks & bike rides. We watched his fine collection of The Urban Peasant on VHS. We'd make plans - lots of them.
It's really crazy to think that we only spent 6 years together. It felt like a lot longer than that. He moved in with me June 2007. Very shortly after that he started getting sick - undiagnosed. He went to the Doctor right when things started. The problem with Leukemia I guess is that the symptoms are so random & of course checking for cancer isn't the first thing they do - he was put on an inhaler, he was given a prescription for physiotherapy, he was told to take advil 'as needed' - even if that meant all day long. After months of back pain, fatigue, excessive night sweats, body aches and vomiting we went to the ER. It was Sunday, October 21, 2007. I started my brand new job the next day. By the end of the week, he had been diagnosed with Leukemia.
And that's how it started.
Sunday, January 29, 2012
first steps.
I'm counting today at the first day of the rest of my life.
My mom, after graciously dropping everything & basically moving in here for over 2 months, has gone home. Now Frankie & I officially embark on our adventure.
So far, that adventure has involved mostly eating snacks, naps, flipping through books & exploring. Every once in a while she stops what she's doing & just looks at me & smiles. She's never really done that & it's making me think....okay...yeah....her & me. We can do this.
The last 2 weeks have been weird - but not as weird as I thought they'd be. Really, I don't think it's all sunk in yet. Maybe it never will? It feels like I was in a 4+ year long horror movie where I could never, ever relax because the bad guy could attack *at any time* and now the bad guy is gone & never coming back, but he took my most very best friend with him.
Last night I went out - to a friend's house to eat (lots of) pizza & casually celebrate some birthdays & drink some drinks. I wasn't going to go, but my mom (bless her) told me I should. I went, I had fun. I laughed - I laughed for real. I was reminded that my life is going to go on. One night, about a month ago, as I was leaving the hospital Gord asked if I was reading & singing & playing with Frankie "Yes! Of course!" 'Good....keep our life alive.' I'm trying to - Gord, I'm really going to try. I want to make a happy, colourful, simple, creative, safe home for my kid. The same as Gord & I wanted to do together.
Re-reading through this blog now, I realize there are some holes that need to be filled. At the visitation, I was talking to a good family friend of the High's who came to visit Gord often while he was in the hospital & was there the day he passed. "I need to fill in the blanks - it's like one day he's sitting up in bed & everything's going so great & then the next day it's all dramatic & 'all treatment has stopped!'" and she said "well, that's kind of exactly how it went." And yeah, you know? That *is* how it went because everything was so up & down & all over the place. So, in a totally self indulgent way, if only to have it all written down somewhere so that if she's ever interested, Frances can read all about what a superhero her dad was, I'll probably start sharing my memories of Gord's illness.
My mom, after graciously dropping everything & basically moving in here for over 2 months, has gone home. Now Frankie & I officially embark on our adventure.
So far, that adventure has involved mostly eating snacks, naps, flipping through books & exploring. Every once in a while she stops what she's doing & just looks at me & smiles. She's never really done that & it's making me think....okay...yeah....her & me. We can do this.
The last 2 weeks have been weird - but not as weird as I thought they'd be. Really, I don't think it's all sunk in yet. Maybe it never will? It feels like I was in a 4+ year long horror movie where I could never, ever relax because the bad guy could attack *at any time* and now the bad guy is gone & never coming back, but he took my most very best friend with him.
Last night I went out - to a friend's house to eat (lots of) pizza & casually celebrate some birthdays & drink some drinks. I wasn't going to go, but my mom (bless her) told me I should. I went, I had fun. I laughed - I laughed for real. I was reminded that my life is going to go on. One night, about a month ago, as I was leaving the hospital Gord asked if I was reading & singing & playing with Frankie "Yes! Of course!" 'Good....keep our life alive.' I'm trying to - Gord, I'm really going to try. I want to make a happy, colourful, simple, creative, safe home for my kid. The same as Gord & I wanted to do together.
Re-reading through this blog now, I realize there are some holes that need to be filled. At the visitation, I was talking to a good family friend of the High's who came to visit Gord often while he was in the hospital & was there the day he passed. "I need to fill in the blanks - it's like one day he's sitting up in bed & everything's going so great & then the next day it's all dramatic & 'all treatment has stopped!'" and she said "well, that's kind of exactly how it went." And yeah, you know? That *is* how it went because everything was so up & down & all over the place. So, in a totally self indulgent way, if only to have it all written down somewhere so that if she's ever interested, Frances can read all about what a superhero her dad was, I'll probably start sharing my memories of Gord's illness.
Saturday, January 21, 2012
Service streaming
Since Gord's friends span the globe, there have been requests to stream the service. So, if you are unable to make the service on Monday, please feel free to tune in & join with us as we celebrate him.
Our friend Jeff has set up a justin.tv channel & will be streaming the service.
Here's his channel: http://www.justin.tv/jeffreymutch
You can go there on Monday a bit before 11am EST and he should have it up and running, barring any problems with a mobile connection. justin.tv does have ads in the stream, but from what he understands they are just at the very beginning, so maybe start it a bit early to avoid interruption.
You can go to this link at any time beforehand to make sure you have the right plugins/codes installed. Your browser should guide you through the instructions if you need to install anything.
Technology, eh?
Our friend Jeff has set up a justin.tv channel & will be streaming the service.
Here's his channel: http://www.justin.tv/jeffreymutch
You can go there on Monday a bit before 11am EST and he should have it up and running, barring any problems with a mobile connection. justin.tv does have ads in the stream, but from what he understands they are just at the very beginning, so maybe start it a bit early to avoid interruption.
You can go to this link at any time beforehand to make sure you have the right plugins/codes installed. Your browser should guide you through the instructions if you need to install anything.
Technology, eh?
Wednesday, January 18, 2012
from our family..
Dear
Friends and Family, we would like to sincerely and with heartfelt
gratitude thank all those who have through kindness and caring comforted
Nicole, the High and the Winer families in this time
of grief. Your thoughts and prayers are deeply appreciated.
Many have been asking how they can best help Nicole and baby Frankie in a meaningful way. The family is extremely grateful for this collective outpouring of concern and is setting up an Education and Care Fund for Frankie.
Those who wish to contribute to helping to contribute to Frankie’s future can make a personal donation to Nicole. All funds collected will be going directly to securing the well-being and care of young Frances. There will be an envelope located at the visitation throughout Sunday for convenience.
Again, thank you to family and friends who have expressed their condolences. Though we can never replace the loss of Gord’s light from our lives, we have a beautiful living reminder of the love he brought to us and to this world and for that we will always be endlessly thankful.
Visitation will be at the Cresmount Funeral Home, 322 Fennell Avenue East, Hamilton on Sunday January 22nd, 2-4pm and 7-9pm. Interment will be held Monday January 23rd, 11:00am, at Cresmount 322 Fennell Avenue East, followed by a celebration of Gord's life, friends and family at the 1020 Upper James St Cresmount location also in Hamilton. For additional information: www.cresmountfennellchapel.com/
With Love,
The Winer and High Families
Many have been asking how they can best help Nicole and baby Frankie in a meaningful way. The family is extremely grateful for this collective outpouring of concern and is setting up an Education and Care Fund for Frankie.
Those who wish to contribute to helping to contribute to Frankie’s future can make a personal donation to Nicole. All funds collected will be going directly to securing the well-being and care of young Frances. There will be an envelope located at the visitation throughout Sunday for convenience.
Again, thank you to family and friends who have expressed their condolences. Though we can never replace the loss of Gord’s light from our lives, we have a beautiful living reminder of the love he brought to us and to this world and for that we will always be endlessly thankful.
Visitation will be at the Cresmount Funeral Home, 322 Fennell Avenue East, Hamilton on Sunday January 22nd, 2-4pm and 7-9pm. Interment will be held Monday January 23rd, 11:00am, at Cresmount 322 Fennell Avenue East, followed by a celebration of Gord's life, friends and family at the 1020 Upper James St Cresmount location also in Hamilton. For additional information: www.cresmountfennellchapel.com/
With Love,
The Winer and High Families
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