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.


(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.)


  1. Three things:

    1. brilliant post
    2. i want to move to Canada
    3. can you figure out a way to distribute Tim Horton's coffee to the US? Do that, I bet you'd make a bloody fortune. Seriously.

  2. 1. Thank you.
    2. Husband, wife or does it matter?
    3. There are over 400 US locations. This will help you find the location closest to you.

  3. 1. You're welcome!
    2. None at the moment, but my bf is way too much of an ex-military, gun-loving Republican (yes, he voted for Bush twice) to ever consider living in a country with *gasp* government-run medical care. The fact that his own medical care is through the government-run Veterans Administration...nevermind...I'm not going there.
    3. Thanks for the link. I'm going to call Kentucky and see if I can get them to ship a case to Georgia. Wish me luck!