How soon is now?

I imagine doing all sorts of destructive behaviour these days. Every time Joe comes in from outside after smoking I feel envious that I am "not allowed" to smoke. I haven't smoked in over 18 months and I think about it more and more every day.

There's nothing that I would like more than to spend the rest of my life drinking, smoking and enjoying prescription medications. I believe the term is "Comfortably Numb".

Sadly, I don't have the budget for such an endeavour. Mayhaps I should start buying lottery tickets just to fund it?

Three words:

Re-prioritize
Redefine
Adapt

On one hand, I'm told that I need to do these things so I can be "happy".
On the other hand, I'm told that I have to go slowly, patiently and scale back my expectations or I'll never be "happy". Live in the now, she says.

NOW SUCKS. I don't want to live in this Now. I want to live in someone else's Now. I've been trying to live in some other Now for my entire fucking life, and now I'm told that I absolutely have no other fucking choice but to live in this one?

I give up. I can't live like this and I can't live the way that I want to. I will call the authorities that need calling tomorrow morning. I'll try to fake some sort of hope to save those around me from any sort of discomfort. Today is the last day I talk about anything negative in public.

Only sunshine, lollipops and rainbows for this woman... or she'll say nothing at all.

I am an Atheist

As part of OutCampaign.org's "I am an Atheist" campaign, Friday, March 20, 2009 is the first online "out" day for various non-religious/non-believers on Facebook. It's migrated to the blogosphere over the day and I'm pleased to be a part of it. In short:

"We rally for freedom of thought, the right to believe and not to.

We rally to erase the social stigma around nonbelief.

We rally in solidarity with those who live where freedom and equality for nonbelievers is only a dream.

We rally to tell the world: we are nonreligious, we are equal, respect us.

This is not a hate rally: we are against false beliefs, not those who believe in them. Intolerance will not be tolerated."

I didn't really take all of this too seriously until I saw Montel William's appearance on the Oprah show on Tuesday and had been evangelized to via email. And now my dander is up and my ass is chapped.

First off, MS is not a gift that has given my life meaning. I was not "given" MS so I would return to serving my lord and saviour. As a non-believer, I question whether there is an actual meaning or reason for existence at all. If there is a "greater meaning" it needs to happen in this life, now, rather than in some fantasy place after this life is over or in some future life where I try and work out the problems of this one.

To say that a disease is a lesson is to fudge the truth. Yes, there are problems in the environment, in the food systems and with lifestyle choices, but to act as though MS or cancer or HIV or whatever is divine retribution for the abuse of the planet or (more often) for the abuse of one's body is as bad as holding out an $85 a week colon cleanse as the solution to someone's problems. Or a vitamin, diet or exercise program as a cure-all to viruses and disease. Jesus/God/Higher Power are just as futile and false hope as any of the whack-job "cures" I've been offered over the past 40-ish days.

I know that in some circles, quoting Karl Marx is a conversation ender but here it is.

Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.

Marx, K. 1976. Introduction to A Contribution to the Critique of Hegel’s Philosophy of Right. Collected Works, v. 3. New York.

Offering me religious redemption is as offensive to me as offering me platitudes or junk science to treat my disease.

I've been accused of being miserable and not wanting help. That is simply not true. I want help I can use. I have no problem with having to adapt my life to my disease, but telling me that babies, disability pensions and volunteer work are "fulfilling" and meaningful is a slap in the face. That may be *your* life; it's great that you can find some contentment in that, but that is not what I want for *my* life.

I am an Atheist. It's funny that the Holy Roman Catholic and Apostolic Church, the 12-Step movement and neo-paganism helped me get there, because I'm fairly certain that wasn't their intent. I am also very against peer-support as a result of my attempts to deal with sexual assault, drinking and drugs, mental illness and quitting smoking. With my experiments in trying to find someone who isn't completely Pollyanna about MS and a fully functioning person with a life not defined by MS, I'm convinced more than ever that peer support is how you keep the sick, sick.

In summary, if you've got some useful and practical suggestions about how I can retain my sense of self, keep at least some of the things I love in my life, and how I can get and stay well, then I'd appreciate your peer support. I'm not getting any better. My condition has not changed since my first post about the improvements. I need useful solutions in order to deal with this.

But if all you've got is "you gotta change", "your life as you knew it is over, suck it up princess", and/or "pray ta Jeesus", you aren't my peer.

As a side note, I'm working on a project with the MS clinic's social worker to find something to be inspired by. Since personal stories don't really do it for me, I've decided to find inspiration in music. I've asked my friends who've expressed an interest in helping me to send me a single mp3 of a song that inspires them. Since last night I have collected four songs. As a result of this project I am now using my iPod as a defence mechanism. Here's the song of the day:

No way of knowing if she's ever coming back
No way of knowing if I care or not
No way of knowing if she's right or if she's wrong
No way of knowing if I'll carry on
And I'm alive
And I'm alone
And I've never wanted to be either of those

Alive Alone - The Chemical Brothers - Exit Planet Dust

The name of this blog.

12 December 2008 was the day that my life was changed forever.

That's the day I was told that all the strange things that my body had been slowly and steadily doing, making my life increasingly difficult had a reason.

Eighty days ago I felt my dreams for my future collapse and my hopes for my life as a woman, a spouse and a member society were gone.

Two months and 18 days ago, I was watching my body do things I couldn't understand. I was being disabled slowly, over a progression of days, not weeks, and the doctors that I talked to seemed to have very little in the way of answers.

There is no long term prognosis. There is no way of knowing if any of the treatment options offered to me will work. There is all manner of best guesses, statistical averages, choices being left to me because no one wants to take responsibility for something not working. I also cannot fail to mention the dozens of people who are this diseases' version of the "9/11" truthers. I have all the emails. Trust me.

My name is Lori. I'm 34 years old. I am the first (and hopefully only) wife of Joe. We're childfree. I had a job until the end of 2008, but that's gone now. In April I will start looking for a new one. I'm the oldest daughter of Kaye and Kevin. The oldest sister of Julie, Tracey and Steve. I'm the granddaughter of Helen and Evelyn. I'm the daughter-in-law of Linda and Jack. I'm the sister-law of Jeff and Lauren. I'm the aunt of Zack, Tyler and Alanna.

I have had the symptoms of my newly diagnosed disease since May of 2008. I have been told that I have a particularly "aggressive" course of disease.

I have Relapsing Remitting Multiple Sclerosis with residual deficits.

I used to care about a lot of things, but now I'm not so sure if any of those things matter. This blog came as an idea I had in the shower the night before last.

Maybe living out loud will help me find what matters to me and I'll find my reason for getting well.