Done.

When you avoid the sun (and heat in general) and really have no interest in being outside, seeing the unofficial end of summer is kind of a relief.

That said, these are the things I wish I had done this summer:

1. Spent some time drinking wine on the beach at sunset.
2. Gone to Grouse Mountain just to see what the fuss is about.
3. uh... I don't think there is a number 3.

Goodbye Summer of 2012. I won't really miss you at all.

I don't have a lot to write about these days because what is on my mind has nothing to do with day-to-day life with MS or day-to-day life with me.

Since I went to the Underground Railroad Freedom Center, and have been reading news story after news about how people continue to be cruel to each other because of their race, class, ethnicity, sex, gender presentation, sexuality and/or disability, I've been looking at people differently.

My time in Ohio left me changed and I am not sure that I have the tools or the capital to make any kind of difference. The only thing that I can do is try to live differently, or something.

I have spent the past 30-40 minutes with my hands on the keyboard watching the cursor flash in anticipation of the next words to come out. I have nothing to add to this. 

Not sure where this is going...

I have been there, hating women because of the "girl way" they act.

I have also been there, being hated because I didn't act like a "good girl" or a "nice girl" or what that person thought a feminist should act like.

Gender norms fuck us all over.

Some days I wear lipstick, watch hockey and talk on the phone.

Other days I like football, shoe shopping and shooting guns.

Some days I'm overtly intelligent, sexual and neurotic. Other days I'm forgetful, quiet and self-assured.

All of these are the days I "act like a woman". I act like a woman because I am biologically and gender presentationally an adult female who doesn't know any other way to act than like a woman.

I don't want to perpetrate misogyny. The world is sexist and misogynist enough that I don't have to be part of it. I don't have to like what someone acts like, but I can also realize that maybe that woman doesn't know she has other options. Maybe she doesn't know why she makes bad choices. Maybe she doesn't know that the socialization of gender norms begins the second a parent is told "what it is" after a child is born, and maybe they don't know the bulk of that socialization is bullshit.

I really don't know where I am going with this... I just saw this quote this morning and it reminded me of how I used to treat women different. It reminded me how I used to perpetuate my own misogyny. I reminded me that I stopped hating myself right around the same time I stopped seeing other woman as a threat to my desires.

It reminded me that even though we are 51% of the population, we're still considered a "special interest group" who needs to be placated, pandered to and infantilized instead of being considered what we are - the majority. Part of the reason that this still goes on is that women are hating women with the same kind of gender socialization as men are. I can't be part of it. I can't do it and not hate myself.


I still don't know why I wrote this.

Current Events

The more time I spend online reading the news about the world, the more I am hopeful that the Mayans were right and it will all go up in flames in December.

I have been avoiding stories about the Aurora, Colorado movie theatre shooting last week. I have many thoughts about it being more difficult to get licensed to drive a car than it is to get an assault rifle and how no one from the NRA can tell me why it was right that the man who shot up this public space had access to that weaponry. But that's not the point of this post. I won't engage in any conversation about the 2nd Amendent (because I'm Canadian, and other than the basic constitutionality of keeping and bearing arms, I am not equipped with either the facts or the culture to engage in a debate).

But I do know that Caleb Medley went to see a movie with his wife and got shot in the face for his trouble. I know that he is (or was) a Wal-Mart employee without health insurance who lost an eye and suffered some brain damage a couple of days after he got the biggest break in stand-up comedy of his life and a couple of days before he became a father.

Caleb Medley is going to live through this, it appears. The hospital has told his family that his medical bills could be as much as 2 million dollars.

The part of Caleb Medley's story that hits home for me is that this person is chasing the one dream he's always had while trying to pragmatically do right by his commitments and then the world comes crashing in on him in one crazy moment, through no fault of his own.

If you can help Caleb Medley with whatever kind of help you can offer (there's a mailing address at http://www.calebmedley.com/help if you want to send goods or cheques rather than cash online) I am sure the Medley family will appreciate it.

Because as difficult as the the changes this month have been for me, they pale in comparison to being shot in the face at the midnight showing of the latest Batman movie.

The monsters are crazy.

I have assembled on my queen-sized bed the collection of every DIY, self-help, How-To and planning book I currently own.

This is a collection of 27 books. This does not include the countless books I borrowed from the library or the 10 or 15 books I put in a donation bin about a year ago. This also doesn't include the books that I have borrowed from friends or managed to leave somewhere on public transit. Nor does it include the 2 or 3 e-books I have stored on my hard drive, or my previous membership with Flylady.net and an endless browsing history of sites like eHow.com and About.com. These books are just the ones that I love and use as reference, the ones that I bought and haven't had a chance to read, and a couple that changed my life.


At the book store on my lunch hour, I considered what was in this pile of good intentions and "I had what alcoholics refer to as 'a moment of clarity'", which is kind of ironic since I did a few years in 12-Step recovery in my second attempt (at the age of 19) to fix my failing life. But in this moment today I realized that without order, I am batshitnuts. Love a numbered list, a colour-coded to-do list, a daily agenda of times, places and people, and a plan of attack that includes my personal affirmations:

1. If it will take two minutes or less, do it now.
2. If you take it out, put it back.
3. If not now, when?

(I have more personal affirmations, but those are the ones that are in the back of my head throughout the day.)

I go through what I don't know what else to call but a crisis of faith twice a year. Once in late December, as I realize that yet another calendar year has passed and I am nowhere closer to a fabulous life and again around my birthday, when I realize that yet another year of my life has passed and I am nowhere closer to the awesome life I want. I keep trying to ignore the fact that I don't exactly know what "fabulous" and "awesome" look like as a reality in my life other than to say that I will know it when I get it.


Getting diagnosed with MS has made these periods of crisis heavy. I feel that I must finally get it right this year because I might not be able to walk next year. I might go blind next year. I might lose my ability to think and reason next year. I might be any number of bullshit things that are possibly when you have this life sentence hanging over you.

I feel desperate to get it right. To find the order and the help in all these books and the internet and what I know to be true to make something worth living out of this life of mine.

Sidetracked

So Kimli posted this today. I laughed.

So I immediately thought of these lines from Margaret Cho:

"Because there is no such thing as a straight man with visible abdominal muscles. You have to SUCK COCK to get that kind of muscle definition.

It doesn't work for women.

You know I tried, okay?"

Then that reminded me of when Margaret Cho saved my life. So I started putting that in a post but it was a little heavier than I wanted to post today. I wrote something incredibly safe.

Then I remembered she said this:

Silence equals nonexistence. If I don't give too much information, if I don't go there, it's like I was never there in the first place.

So I wrote as much as I could so it wouldn't embarrass anyone else. I got angry about having to edit myself because of the world today and being unemployed and made some sort of "Why I oughta..." statement. And then I watched the A&F video again and laughed.

Now if I could only remember what I was doing before the visible abs happened.

And then there's this...

"Black bear attacks man in Whistler hot tub"

Canadian bears have gone completely rogue.

Everything in the woods wants to kill you and/or eat you.

Reference this story the next time you wonder if I would like to go camping with you.

This is why I don't leave the city unless out of absolute necessity and why I have no plans to survive the first wave of any impending apocalypse. OUTSIDE IS DANGEROUS!

Just World?

Insult to injury? I mean, you think that you can OD on drugs in your car in peace and NOT have your corpse dragged off into the woods to be snacked on and then saved for later.

Though I am sure that there are many who think that the bear was too good for the likes of him.

I hope Stephen Colbert is more fearful of Canadian bears. Our bears are extra bad-ass.

Having a Bad Week

I'm not sure what has to happen in your life that makes you kill and dismember someone and put their torso in a suitcase and then mail some of the parts to national political parties; including a note that there would be more deaths then bugging out to Europe - probably France. However, I hope that if I am ever the subject of an international arrest warrant, my wanted photos are as well composed and professional.

How bad does your day have to be that you walk into a local cafe, shoot five people then walk off to carjack and shoot a sixth person? Five of those people are dead, the shooter killed himself when the police confronted him.

I have never been angry enough to shoot my landlord and then have a stand-off with the police. Not ever. Or be suspected of killing two people in a suburban sushi bar before I shot my landlord.

I have never wanted to eat the face of a homeless man whilst naked. I have wanted to rip the heart out of a couple of my ex-boyfriends, but that was more metaphorically than literally. And it never included tearing tongues out, shredding faces, or removing eyeballs - especially when unclothed. Turns out, that happened in 2010. I should learn to read the dates on these things more closely.

I really don't have an explanation for any of this, so....









OMG BABY PLATYPI!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Almost Internet Famous

In having a look at my traffic sources (because I am a big nerd about such things) I found out that my post, Battles, was featured on Carnival of MS Bloggers last week. I am humbled that someone found something I wrote interesting enough to pass along.

MSbloggers.com is run by Lisa Emrich, one of the first people I met online when I was newly diagnosed. Her personal site Brass and Ivory was the first site I sat down and read after seeing some of the articles she wrote for HealthCentral.com on MS.

I like her style and the way she handles her dual diagnosis of MS and rheumatoid arthritis. She's out there every day advocating for patients and educating the public on these two diseases. As an MS patient, I'm glad we've got someone like Lisa in our corner.

I'm looking forward to her stories when she returns from Europe.

Thanks Lisa for doing what you do.

*le sigh*

I am slowly coming to accept that the job I have is the job I have. At this point I've been out of a resume worthy job for over a year, and the job I've got is probably the best I can do at this point.

This makes me want to cry, because everything I'm really good at doing is not a skill set my boss is looking for. It is the same thing every single day. Download and print his email, open his mail, transcribe the emails or letters he dictates, make his photocopies, file.

Lather, rinse, repeat.

I'm grossly underpaid for the kind of high maintenance this guy is, and he's acting like I should be glad to have his pittance. No extended benefits, not even an MSP kick-in, no extra vacation. I've been warned by the woman who works for the accounting arm of his company that he will try to pay me out the two weeks rather than give me the two weeks vacation I am entitled to under BC law.

Great.

At this point, this is it and it pays the rent and keeps the wolves at bay. But my goodness it's boring. The only thing that is good about it is that he doesn't dock my pay when I go to the doctor and I can wear yoga pants and baseball caps to work if I want to.

I haven't come to a level of acceptance that allows me to put this job on my resume yet, but I am sure as the fog of denial lifts it will come to be.

On the Copaxone front:

My Pharmacare coverage is in place leaving me on the hook for $1500. I want my extended medical to pay that $1500. My neurologist sent in all the forms (I know this because the insurance company called to confirm the DIN of Copaxone because it was missing).

It took them TWO WEEKS to send the forms to the Administrative Department that Signs Off on Such Things and now it has been another two weeks. Still no word. The last time Joe called (he is the primary, I'm the dependent.) they were very clear that when it was approved *THEY* would call *HIM*.

For my American readers, I got "government health care" in 48 hours. My private insurance company is still thinking about $1500 worth of $18,000 a month later.

The private sector is *so* much more efficient, my lily white ass.

Walk, walk, Fashion, baby.

This is my favourite piece from Alexander McQueen's Fall/Winter 09/10 collection. Fall/Winter fashion has always caught my attention because the clothes, the creations, are more substantial. As with many of AMcQ's fashions, this one looks almost architectural; like it was constructed not sewn.

Seeing this brings tears to my eyes. There will be no more creations like this. No more substantial garments that are works of art. No more couture skulls and bones. No more high fashion trainers/running shoes.

I've battled depression pretty much my entire life and I understand deeply what it feels like to be in that pit of despair. I never had the means or the bravery to do it and that's why I am still alive.

It bothers me, deep down inside, when people of talent, promise and riches kill themselves. If Lee McQueen can't find a reason to live through another day, where the hell am I suppose to get the motivation from? I don't have talent or prospects and I'll be lucky if I can still work a crappy 40k a year job 5 years from now, yet I manage to find *something* to get out of bed for. That reason might be one of obligation to the man I married, but its a reason.

It just seems like such a waste. People like me should kill themselves, not people like Alexander McQueen. He had so much more to give the world than I could ever hope to. He was special.

And now he's gone and I'm left here thinking, what is this all for anyway?

Projects and Impulse Control

The symbol is now official.

If your childfree and lovin' it this is for you.

It's for sale.

I like kids, really. I just don't know if I can eat a whole one.

Had my (what will now be) annual MUGA scan to check for heart damage due to 5 rounds of mitoxantrone. I don't expect anything interesting.

I am exhausted, not from MS, but from this day. Exercising this kind of restraint on a daily basis is really, reeeaaallly making my head feel 'splody.

Listography 9 - List the People You Love the Most

(Other than the first three the remainder of the list is random as long as its understood that I love Lady Gaga MORE than Simon, Finn and Virgil. Possibly combined.)

1. Joe Kidwell
2. My mum.
3. My grandma.
4. Erin
5. Drew
6. Joe's mum.
7. Lady Gaga
8. Simon
9. Smart people.
10. Mrs. Gillespie (though I'm pretty sure she's dead. What the hell, I'll add dead people to this list.)
11. Finn
12. Whomever created the Colagallo. (It's a cocktail that includes tequila AND Coca-Cola!)
13. Louise Arbour
14. Coco Chanel (see? More dead people!)
15. Virgil
16. Cathy Hickson (also dead, but most of you don't know her)
17. Sherry Trafford? Meuris?
18. Christian Louboutin
19. Oscar
20. Ben
21. Donna

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.)