Tuesday, October 27, 2009

Listography 3 - List places you have lived.

1. Peterborough, ON. I was born at Peterborough Civic Hospital (now Peterborough Regional Health Centre) I lived there for most of the time between 1974 and 1992 and then off and on for periods of three years to 8 months from 1993 through 2000. Most of my memories from this time in my life are unpleasant, either because someone was treating me badly or I was treating them badly.

2. Oshawa, ON. From 2000 to 2001 then to Whitby, ON until 2002. From 1998 through this time I would also stay for prolonged periods with friends in the village in Toronto. It was during this period that I came to embrace my inner fabulous and seize the powers of my Urban Diva-ness. Sadly, those powers were nothing against the Kryptonite that was...

3. Trent Hills, ON 2002 to 2003. The place made me damn near suicidal, and I was happy at that point in my life. Everything that was at least 90 mins away.

4. Belleville, ON Three months in 2003, between the end of my relationship that had me living in Trent Hills and my move to...

5. North Vancouver, BC I lived there for 6 months.

6. Vancouver, BC I moved back in with the man I lived with in Trent Hills only this time in the People's Republic of East Van. We were not romantically involved, but we didn't break up because we couldn't live together, we broke up because we were both headed in different directions.

Oddly, that direction was west to Vancouver, in the same apartment.

*shrug*

In September, 2005 I moved three doors down from that place in advance of Joe moving to Canada and us getting married.

I love our converted storefront. Small enough that the rent isn't outrageous. Large enough that we can both get our own space. It's cool. Ground floor, no stairs so even when my MS is bad I can still get from my living room to my bedroom with little trouble.

Thankfully, this list wasn't a list of addresses where I had lived. The internet might run out of space.

Friday, October 23, 2009

Listography 2 -List your closest friends

(I stopped having "best friends" when I was 20. So this is a list of the people that I enjoy spending time with for various and sundry reasons.)

1. Joe - he's my husband, the only person in my life I see daily, and I think he's hot.

2. Simon - he's my upstairs neighbour, the only person in my life I see 3 or 4 times a week, and I used to be his live in girlfriend. I've learned to edit what I say to him much more than I did when we were together, and he's not attractive to me anymore since he grew the beard back.

3. Donna - she's my boss lady, and I find her funny, engaging and I agree with her more often than I don't. She's also got a killer smile.

4. Erin - she's my friend because she is funny and I disagree with her more often than I do. She's also a good sport when my husband man-handles her. (That's his way of showing affection. He only man-handles the ones he loves.)

5. Jeanine - she's the best person to watch hockey with and I don't do it nearly enough.

6. Sam - he's the sweetest fellow I know, a wonderful influence on Joe and I don't get to spend nearly enough time with him. If he convinces John Waters to adopt him, I hope he'll find a way for me to become his sister.

7. Sarah - she's my peer support volunteer from the MS Society of Canada - BC and Yukon Territory. She's really good at reminding me that I have limits but not limitations, though sometimes I think she isn't comfortable with how able I am and she is not.

8. The Fox - a new friend via the internet, it is really interesting and comforting to find that there are other people in the world who understand the basics of where you've been and where you want to go.

Like the late 70s, early 80s sitcom

Eight is Enough

Hey...

Happiest of Happy Birthdays, B.

Tuesday, October 20, 2009

ANNOUNCEMENT.

1. I have given up eating Skittles (or microwave popcorn) and Coke for dinner. I still eat mostly snack foods, but those foods tend to be fruit plates and selections from the olive bar.

2. While "athletic" will never be a word used to describe me in this life of mine, I ran today. I never was a sprinter or anything, but what I did was as close to those institutionalized torture sessions they used to make me do in grade 8 as it has ever been. I made the bus too. (Which other than an ice cream truck is the only vehicle I've ever found it necessary to chase.)

Thursday, October 15, 2009

Anniversaries & Listography

I quit smoking two years ago today. It is (unfortunately?) how I remember my friend Erin's birthday. Happy Birthday Erin, Happy Smokefree Days to me.

A while ago I got a book called "Listography" from Chapters or some such thing. Turns out the author of the book also runs a website called listography.com which is kind of neat. I bought it because I thought it would be blogger fodder but ignored it... for more than a year.

Now I've decided that every 5 days or so I will do a list from "Listography: Your Life in Lists". This is today's list.

List the Pets You've had & Their Names

1. Puff - german shepherd/husky cross who died when I was around 5, I think. I've been told that I was with her when she was hit by a car, but all I remember is a strange lady taking me to the Gunter's house and asking them if they knew who I was and where I lived. I was more than a block from my house and the only possible way I could've got there was to run through the woods and down the hill through someone else's back yard on to Water St.

2. Wendel - a goldfish named after the star of all the sports pages during a time that I flirted with being a Leafs fan (like my dad would've let *that* happen). Wendel met a tragic end when the neighbour we had entrusted to watch all three of our goldfish (Julie & Tracey each had their own) when we were on vacation left them in a sunny window on a sunny day and made goldfish soup. (I forgave you a long time ago Mrs. Ralph)

3. Sadie - border collie/something-or-other cross that was our early Christmas present in 1986 (man, if I got that year wrong, mum's going to have words with me) She was a good dog, who loved mum and dad totally differently, could hog a bed like you wouldn't believe and loved to play "goalie". She would lay in front of the fridge, we would sit at the opposite end of the kitchen and we would roll pieces of kibble at her and she would "stop" them by eating them... except when she missed. I wonder how many peices of abandoned kibble were found when mum & dad replaced their fridge a while ago. It still breaks my heart to think of the last time I saw her.

4. Bast - completely grey with yellow eyes short-haired domestic who lived with me on McDonnell street. When my crazy live-in brought a dog home, she chewed her way through a screen that night, and was never seen or heard from again.

5. Casper - actually Simon's border collie/something-or-other cross with blue eyes that was part mine when I lived with Simon. He was a great dog. Did weird, flaked out things, was overly devoted to Simon but was just so happy to be anywhere, except when Simon was being boring. Which was a lot of the time. He died in May 2008. It still breaks my heart to think of the last time I saw him too.

6. Lemony - completely grey with yellow eyes whose ears had fallen off because of frostbite short-haired domestic who lived with me in Belleville. When I decided that I was going to move to Vancouver, my roommate said she couldn't come to her house, so Finn made arrangements to have her stay with friends of his until I got "settled". When I finally got settled the people with the cat had moved and I wasn't speaking to Finn. When I finally figured out who had the cat it was more than a year later and she was really, really happy ruling the roost over three other cats and having the run of a very, very cat friendly home (it had a kitty hamster trail and I just can't compete with that). I miss her and look for her doppelganger at least weekly. Well, except her doppelganger has ears. I hope she's okay.

It appears that I am bad luck to dogs and fish, and cats would rather live than anyone but me.

Weird.

Sunday, October 11, 2009

Fear and my Soapbox

MS scares the shit out of me every single day. As I type this the last two toes of my right foot are moving in spasm and the big toe feels as though a very low electrical charge is flowing through it. It's taking every bit of my rational mind not to panic and just start crying because the treatments haven't worked and this is just a sign that things are getting worse. Again.

I'm working my ass off trying to get my life and my body back and it just feels like nothing is working. I still get foot drop when I walk too far and "too far" is highly subjective from day to day. Sometimes it's an hour, sometimes it's to the end of the block and back. Most of the time it's 30 or 40 minutes, but that's not consistent.

What drives me nuts the most is that I never know how much I can commit to on any given day. Some days I have way more hours in the day than I have stuff to do and some days making one plan is more than I can handle. I just don't know how I'm ever going to be able to get right with my life and my future if I can't fix this. It feels like this is killing my will to live one little tiny disappointment at a time. How am I going to live like this, given all the things that I have committed to? The following might explain where I am going with this.

After watching snippets of President Obama's speech to the Human Rights Campaign this morning I realized how fortunate I am, again, that I live in Canada and that Joe made the choice to move here rather than me moving to the US.

I am in a heterosexual union with a partner who immigrated from the US after I sponsored him to come here. I have MS (duh) that was diagnosed after that marriage and sponsorship happened and lost my job because of it. My spouse is a full-time student at one of the best comprehensive universities in the country while I look for work.

If we were a same sex couple, I still could've sponsored him for immigration. He still would have been covered under my extended health care coverage offered by my employer. He still could've had me covered under the plan he now has from the university. He still would've had the right to make medical decisions for me, help manage my care, and have the right to get updates and notification about my situation if I were hospitalized. It would just happen. There would be no debate. He is my spouse, and it doesn't matter what our biology is.

My entire adult (post my 18th birthday) life I have had the following:

1. Unfettered access to a publicly funded health care system.
2. Unfettered access to no cost birth control, reproductive health advice and care and abortion if necessary.
3. Access to unemployment benefits and sick leave.
4. The right to have any relationship recognized by the state as valid with all the same the rights of a common-law relationship, which have the same legal rights as marriage. Since just before my 29th birthday the right to marry that person without it being separate but equal in both provinces I have lived. Since just before my 31st birthday that right was granted nation-wide.
5. The right to serve in the nation's military, regardless of sexual orientation or gender identity. And as such, if I can pass the same training as everyone else I could be combat infantry, even though I have ovaries.

(Side note: There have same sex marriages in both the Canadian Forces and the Royal Canadian Mounted Police force. In 2008, CF members marched in the Pride parades in Toronto and Vancouver, and in 2009 the Pride parades in Toronto, Vancouver & Montreal. Pride festivals are now a part of the Forces annual recruitment efforts.)

6. As Canadian citizen, the right to vote in every election, regardless of previous criminal history and, in the case of long term incarceration since 2002, to vote from inside prison.
7. Lived in a country that does not have state-sponsored murder.

I have said before that Joe and I would be bankrupt if I had got sick in the US. I have said before that to consider gay marriages an aberration against nature is to consider my heterosexual marriage one too because we aren't having children "naturally" either and our vows were purposely not religious. I have said before that anyone who wants to sign up to defend my nation's sovereignty should be allowed to do that. I have said before that if you stop treating people like animals they will stand up like men and women. I have said before that equalizing access to opportunity will do more to further women's equality than all the quotas in the world.

I suspect sometimes that my life is easier than the lives of many of the women I know in the US. I suspect that, even though I live in a country with limited access to firearms and has hate speech/crime laws that are enforced, I have more personal freedom than many of the people I know in the US. As Joe gets closer to graduation, the lingering question of where we will live in the next phase of our lives hangs over my head like cloud of uncomfortable uncertainty. I am not sure that I am okay with the idea of moving to a nation where the very laws of the nation clash so completely with every notion of civil liberty that I have known my entire life.

How can I even expect that that government would let me in, given my long-term chronic illness and unknown prognosis?

How can I expect Joe to give up his dreams or possibilities because of my unwillingness to pay taxes into a system I disagree with at best or their denial of me because of my broken body at worst?

I don't want to use MS as an excuse for not doing something, but I do it all the time. I've given up on the idea of going to school because the province has gutted the financial supports for students with disabilities, I'm not sure I could keep up academically with my intermittent ability to walk, the potential for crushing fatigue and the fact that most disability support programs aren't designed to deal with someone who's well one hour/day/week/month and then unable to function the next hour/day/week/month.

I know I told Joe from day one that I wouldn't live in the US under any circumstances, but I softened on that because in marriages you make compromises. I'm not sure that I can compromise on this, and I'm not sure the US government will let me anyway.

After typing all this I realize that I am probably worrying about nothing. Joe and I aren't going anywhere for the time being. I haven't got a job yet, so I don't know what kind of options I'm going to have personally. Everything is just up in the air, and until I have a better idea of what kind of future I am going to have in this body, things are just too unsettled for plans.

Next mitoxantrone (Novantrone) treatment is this coming Thursday. MRI is Nov. 23. Neuro follow up is December 17. Will I know better where I stand at that point? I don't know. I'm not sure that there's anything that she can say or do that is going to make me feel better about my future or the choices I will have to make, given that MS is going to affect every decision.

MSucks.

(Unrelated PS: I prefer Starbucks' new VIA Ready Brew instant coffee to their regular stuff. It's not the best coffee I've ever had, but in a pinch for either coffee or time, I'd take this stuff over their store beans or brew any day.)

Saturday, October 10, 2009

Anniversaries

(a photo of us during our fifth date, I think)

Almost five years ago I made the acquaintance of a man online. It seemed like a fairly harmless flirtation.



About month later Joe had flown from half way across the continent and kissed me in my kitchen in front of my fridge. I was smitten.

Six weeks after that, he met me at the arrivals area at the Humphrey Terminal of the Minneapolis-St. Paul International Airport. It was March. I knew that if I was leaving British Columbia in March to visit a man in Minnesota he must have been special indeed.

Two days before I left the Twin Cities he said to me, "So I guess we're going to have to get married, right?" If we were going to be able to live in the same place with each other, yeah, that was the only way.

In late May I flew to Cincinnati, Ohio for me to meet his family and we drove to points across Eastern Ontario to introduce him to my family. He had a lot going on for him that summer. Quitting his job, moving to Ohio, donating his mom a kidney, moving to Canada and getting married. All that went down for him between July 7 and October 8. He totally kept it together.

We were married at moonrise on the BC Ferry Queen of Capilano during its 17 minute sail from Horseshoe Bay to Bowen Island. The bride and the groom wore black and red. We stopped for a drink, got back on the next ferry, and headed to North Van for a night of oversized tiki drinks at Raglan's. It was low key, perfect and cost less than $500.

Around our first anniversary I was pretty convinced that if we weren't married and/or were both from the country we lived in we wouldn't be together anymore.

Around our second anniversary I think we both had learned a lot and were starting to consider the long term benefits of pairbonding.

Around our third anniversary I was so tired and so weak, I don't remember if there was any sort of celebration at all. We had a small thanksgiving with Simon and Ben, our best men, and called it a night.

Yesterday when I woke up he had been awake for a while. While I was pulling on some clothes to guard against the morning chills, he came into our room, put his arms around me, kissed me and wished me a happy anniversary. He didn't let go for quite a while. I told him I love him, and he said it back. And then we carried on with our plans for the day.

If there's one thing that this fourth year of marriage has taught me its that the world and its problems are easier to deal with in pairs. I also keep thinking about the two things my grandmother told me about marriage.

1) Remember that all the things he does today that annoy me will be the things that I will miss when he is dead.

2) Character is more important than personality.

Joe is a man of good character. Our relationship is very different than the one we had in those heady days of trying to deal with a cross-border, long-distance relationship as we prepped a wedding and the paperwork for his move to Canada.

We've become boring. We have different priorities; because we're older, because we've both put on a little weight, because I'm sicker, because he's a student, because I'm unemployed. It's his good character that has allowed him to roll with these changes and not act like he's been short changed. If he feels that way, I can't tell from the way he treats me and he's never said so.

I can say, without hesitation, that I love him differently than when we married, but definitely more. I have been (I am so not comfortable with this word) blessed by this man. Not that I think some super-natural force put us together, but because our accidental meeting on forum board in the middle of the internet has brought gifts and good fortune to my life. Things I would not have found with anyone else, I know for certain.
"Do you want me to tell you something really subversive? Love is everything it's cracked up to be. That's why people are so cynical about it... It really is worth fighting for, being brave for, risking everything for. And the trouble is, if you don't risk anything, you risk even more."

Erica Jong - How To Save Your Own Life

If you're reading this Joe, know that you are "the mutha fuckin' love of my LIFE". No question, no doubt. Lets hope that next year is better than the last.

Thursday, October 8, 2009

Thursday, October 1, 2009