White Castle Fries Only Come in One Size

Things I have done because of the Beastie Boys:

1. Made my now-husband take me to White Castle just to see if their fries only came in one size like they said in "Slow and Low" on Licence to Ill. Since that was 2005 and not 1986, White Castle now has fries in three sizes and I was sad.

For the record, White Castle is kind of gross. And they are surprised when you say "I would like two cheese burgers." They expect you to get four.

2. Developed a pole-dance routine to "So What'cha Want" because I felt at the time (and still do) that that song was meant to be stripped to.

3. I hum "She's Crafty" almost every time I do x-stitch.

4. Every breakup I have had since 1995 has led me to play "Sabotage" over and over again at high volume.

5. I cried when I figured out this line in "Sure Shot":

"I want to say a little something that's long overdue
The disrespect to women has got to be through
To all the mothers and the sisters and the wives and friends
I offer my love and respect to the end."

6. Googled "Saduharu Oh".

Adam Yauch, a rapper and founder of the pioneering and multimillion-selling hip-hop group the Beastie Boys, died on Friday in Manhattan. He was 47.

I've posted a bit about MCA's passing a bit on Facebook, so I apologize for bringing this up once again if you're tired of hearing about it. I don't usually get so concerned for dead celebrities but I think I have to accept that the death of a Beastie Boy for me is kind of like having a Beatle die. They are a part of the soundtrack of my life.

Namaste, muthahfuckah. The likes of Yauch we will not see again.

Shame

Joe just said to me "I wanted to go for a walk with you today. It's beautiful out." and it felt like a punch in the gut and an elephant sat on my chest all at the same time.

A friend on Facebook pointed out that I seem to have a lot of time on my hands. That may be the understatement of the week.

I have a great deal of shame about not being able to work now that I've stopped feeling sick. ("Sick" is puking and/or pain. "Not well" is MS symptoms.) I'm still not well, and my future is too uncertain at this time for making plans, but man do I feel like shit about not being able to do much of anything.

I don't want to go outside of my house. I don't look good, I don't feel well, I have to use a cane in order to mitigate any balance or endurance problems I will most likely have, and my lack of abilities is really, really embarrassing.

If I don't have a new thing come back or an ability get stronger each and every day, I get disappointed and angry that I am not getting well. I am embarrassed that I can't do things and that leaving my house strikes fear into my heart.

I keep forcing myself to do whatever house work I can just to prove that I am still a living, capable human being. It doesn't work, but I can eat out of my bathroom sink.

Life is a constant trade-off, innit?

Due to other issues I've had over the years, I've learned to find other measurements of how I am doing other than my emotional state. I don't trust my feelings because they often lie to me. But by measuring how well I am taking care of my work life, my physical appearance, and the condition of my house, I can figure how much I'm caring about my life.

MS has taken away my meter sticks. I have no job. I am unable to fix my appearance. I have a difficult time completing tasks around my house. So all I have is my emotional state to guide me, and it's depressed, lost and without a rudder.

Joe asked me to wake him up from his nap to go for a walk with him. I've already put that off for 20 minutes so task avoidance shouldn't go on much longer. That's what shame does.

It cuts you off from the sun. I missed the sun because I couldn't go outside.

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

"I haven't been afraid of dying since I was 16...

With MS, for me it's the living part that puts me on my knees."

Woman's post on the internet

(From a cool forum site that did not originate the spam.)

What if I'm simply not interested in having a new "normal" life?

A life that doesn't include anything that I like, love, am interested in, or am good at doesn't seem like a life worth living.

I can't read a book for more than 15 minutes. I can't walk if my temperature reaches 99 degrees, so I can't exercise. I can't do my job because I can't work more than forty-five minutes without a rest. I can't remember what happened to me last week. I talk about BC when I'm telling a story about something that happened in New Brunswick.

My hair and skin are a mess. I can't wear any of my old clothes or shoes. I can't watch a movie on a large screen because it causes double vision. I can't stand in one place long enough to enjoy an art exhibit. I can't have more than one glass of wine in an 8 hour period. My husband and I might as well be roommates who give each other hugs, pecks on the mouth and pep talks.

MS has stolen EVERYTHING that I love and is important to me. It's stolen every dream and aspiration I had for the future. This is my new reality. I don't think, act or look anything like I did 6 months ago. I don't know the person I see in the mirror, and I want her gone.

I used to be fabulous. Now I'm not. What do I have to do to get the old me back?

Based on most accounts, there's nothing I can do. This is it. This is "me, with MS". I don't want to settle into a disability pension and a "fulfilling" volunteer job. I don't want to have kids and build a family. I can't and won't find meaning in serving the lord.

Everyday I look at job postings to see what's out there these days, and I realize that even if I improve I won't be able to do anything that I am actually qualified for and experienced with.

Where and with what does that leave me?

I fear a disability pension and a "fulfilling" volunteer job.

Judging

I try really hard not to judge days, feelings, emotions, activities and practices as "good" or "bad".

Today is a day where I am really struggling with that. All the gains I've made in the past two weeks have been erased over the past two days. I'm using my cane again. I'm both sleepless and fatigued. Cognitive difficulties mean that this is going to be a short post.

It's probably just because I'm now in the crashing immune system phase of the mito treatments.

I had my first emotional outburst yesterday in quite some time which was almost immediately followed by my left knee giving out and my vision blurring.

I was running on five hours sleep, and by hour ten of my day other abilities started collapsing. Yet I couldn't fall asleep because the dreams of falling on the pavement and smashing my teeth are back.

Today, all the stuff I lost yesterday hasn't come back. It's not any worse I don't think, but it's not here. I want to do a load of laundry, but I know I can't do it by myself and Joe's up to his eyeballs in school work. To ask him to help around the house seems selfish, because it's not like what he's got to do is a 40 hour a week job. He's writing papers, reading, programming and web developing. I'm staring at the internet almost every waking hour of the day because I so desperately don't want to be alone.

I'm an extrovert who doesn't like or trust many people. I don't have many friends and the friends that I do have either don't live in Vancouver or have their own personal soap operas to deal with. If it were not for Facebook, the only person I would talk to each day is Joe. Maybe Simon a couple times a week. But yeah, this is it.

This is my life.

I only realized a day or two ago that someone I know saw me like this. I am horrified that those friends saw me, my house and my life in such shambles. If I had been in my right mind I wouldn't have had them here.

I was thinking that this weekend would signal the start of me reclaiming my life but it's obvious that's not going to happen because I can't walk. I'll be lucky if I make it to this evening having been able to make it in and out of a shower. I have clean sheets that will just have to wait until I get better to be put on the bed.

It feels like I've stacked 80% of my old life on a chair; for use after something called "better" happens.

Maybe I can donate that old, unused life to the Sally Ann. I'm sure they can find someone who could benefit from it.

Projections

Tomorrow is my second of six mitoxantrone treatments.

Mitoxantrone is a chemotherapy drug that is cardio and cyto toxic. If I take too much or for too long it could damage my heart. I also have to make sure that no one is exposed to my bodily fluids for 48 hours after I am dosed.

It's delivered with an IV steroid and an anti-nausea drug. It takes about two and a half hours to get all that into my system.

I receive about 1/4 of the dose someone with cancer would get, and it still makes me ill if I don't monitor my intake of anti-nausea drugs. It was really difficult to make sure I got the dosing right the last time with only 12 hour Gravol (that only lasted 8 hours) to deal with it, so I think that the MS clinic and I have decided that I will get a prescription grade anti-nausea drug this time.

yay...

I seem to have spent much of this day trying not to be terrified of the next two weeks. The side effects of my first treatment were so freakin' awful that it's difficult for me to just stay in this day, where I'm not sick and actually feeling like I am starting to gain the long term benefits of this treatment.

MS is an auto-immune disorder. For some reason my immune system thinks that myelin (the fatty insulation coating around the nerve endings) is the enemy and must die. When your nerve endings get demyelinated you start getting scrambled or dropped signals. In the simplest terms, my brain regularly gets "404 - Page not found" errors. The idea behind getting chemotherapy is that it will stop my immune system from eating my brain fat.

Everyday I don't have feeling in my finger tips and toes and I have fatigue. Most days I have uncoordination on my left side, pain in my joints, pressure behind my eyes, a loss of focus in my vision when I get tired, and general cognitive shortages. I have a difficult time sitting down to read, as I forget the paragraph I just finished, so the next one doesn't make sense. I've asked Joe for a knife when I meant scissors. That sort of thing.

As someone who prided herself on remembering every postal code and phone number she's ever had, having these kinds of deficits are frustrating to the point of anger. I feel like I'm not smart anymore. I can't go to work anymore. I can't dance anymore. I can't wear high heels anymore. My skin and hair are a mess from the chemo, so I don't look pretty anymore. Because I'm such a mess I don't go out anymore, except to go to the doctor.

It's like I've lost most of my identity to this disease. Everything I loved about being me is gone except for Joe, my friends, my family and my apartment.

My internet friend David was nice enough to buy me a book from my Amazon.ca wishlist called MS and Your Feelings by Allison Shadday.

In it she gives a list of signs that you've come to accept your diagnosis and disease. The first one is:

MS is no longer the focus of your life.

At 82 days, this seems impossible. I can make it to the corner store on my own and that's an accomplishment! The idea that MS will no longer be the focus of my life is so unrealistic at this point it seems almost otherworldly.

I'm not saying it's impossible. I'm just saying that it's difficult to believe.