The Beginning

A  couple of days ago I did one of those memes that go around Facebook from time to time.

“Justin gave me the age 25. These are the three things that aren't really secrets, but not many people know about them.

I was dating a crack-head con-man who went to jail for stealing our neighbour's car, stealing our roommate's credit card, defrauding several department stores and double-doctoring.I wanted desperately to believe that god would save my life.I was on welfare.

Comment and I'll give you a year to share three secrets about.”

A couple of friends were very surprised about the second entry. Given what they know about me now their surprise is natural. But me at 25 and me over 30 (when I met both these friends) were two different people. I think further explanation is in order.

When I was 25 I wanted desperately to believe that god would save my life. That was 1999. A year later, things were different.

I don’t remember exactly what day it was, but it happened mid to late 2000. My “boyfriend” had just been sentenced to 28 months in prison for a string of charges related to his interest in taking other people’s property and using them to purchase illegal drugs.

At the time I was convinced that I had been damaged beyond redemption from several years of alcohol and drug abuse. I was a non-meeting-attending member of a 12-step “fellowship” where I was being told that if I could just “get the program” and “develop a relationship with the god of my understanding” I would be happy and my relationships would be good.

Even in typing that I feel like an idiot.

So what I was doing was a lot self-help using writing and getting peer support from a few self-identified substance abusers and trying to keep up a solo neo-pagan religious practice while in a relationship with a status obsessed, drug abusing, Jewish convert who thought I was worshipping the devil and telling too much of our business to my friends.

The crazier our relationship got the more I kept praying that god would just end the insanity. I would pray and light candles and cast spells and lay down on the floor in the fetal position and just cry, waiting for god to fix this fucking *thing* and make it right.

The only thing that I knew for sure was you have to believe that EVERYTHING is god’s will or NOTHING is god’s will... you don’t get to pick and choose. People who chose and picked the will of god were not being intellectually honest about what god could do in their lives. (The irony of that statement is not lost on me, by the way.) If life was still crazy it must be because I didn’t believe enough or god wanted me to learn something or maybe god thought that this was the best I could ever do.

I didn’t believe that god would save my life. I wanted to believe that god would save my life. I wanted that more than anything and I would do whatever the believers in my life told me to do to get god to do that. So I continued praying. I continued writing. I continued lighting candles and casting spells, consulting cards and casting rune stones. Every night I ended up in the fetal position on the floor in tears. Clearly I was doing something wrong.

But on that day shortly after I insured that my crazy boyfriend was settled into the minimum-security correctional institution where he was to serve one-third of his sentence before being considered for day parole. I had shipped him some of his stuff and visited him enough times to convince him that he should not “escape” from prison and just do his time, I made one decision.

I decided to stop seeking god.

I wrote the crackhead boyfriend a “Dear John” letter.
I convinced the person I was living with to tell him I had moved out and lied to him about where I was living.
I moved to another town.
I cut all my hair off, I bought a suit and a pair of heels and I went and landed an interesting job.

Months later I realized that my life got better the minute after I stopped praying for god to fix my life and made a decision to actually do something. From that day forward I started questioning the idea of god.

I would not utter the word Atheist for another two years but this was the beginning.

Fear Pt. 2

Just in case you are one of those readers speculating what could *possibly* be wrong...

I'm not pregnant.

I am not in the middle of an MS relapse.

Joe and I are still happily married.

***

My sleep is all screwed up. I do not deal well with unemployment. I've been over this before. My life is sufficiently uninteresting that it is not motivating enough to get up for. I've set up a whole bunch of appointments next week in hopes of finding a reason to get dressed.

***

Writing resumes makes me homicidal.

***

I'm going pillow fabric shopping tomorrow. That will give me a reason to put on a bra and get dressed.

Right?

Fear

I hate being reminded that my life has an entire metric that almost no one else I know has.

Future plans - chances of MS relapse = reasonable expectations

***

Life changed on Monday night. I can't go into it in public, but the nearer future of my life changed completely.

I am not sure how I feel about that.

***

I have to rewrite my resume again. Thankfully, there's still some vodka in the house.

***

This is my brain on fear when I can't say anything out loud and have to edit my thoughts.

Fail

I hopped on the scale this morning and 15 minutes later walked to the bus stop completely devastated.

I am now 11 stone 13 lbs. or 74.75 kg (Yes, I know only that isn't in pounds, a weight we'll all understand. It's just that old school Imperial measurements and metric make it sound better than it actually is.)

Now I know that I am supposed to have high self esteem and it's not feminist-ly correct to judge about body size and type, but you know what - I do not give a fuck about that right now. My body and I are at war and it is not to be trusted under any fucking circumstances until appearance and action improves.

You see today I crossed a threshold that I swore to myself I never would. I now weigh 167 lbs. This is the most I have ever weighed in my entire life. I have never been this fat in the entire history of my 36 years on earth.

In my previous lives, every time I would put on winter weight I had one of two responses.

1. Cigarettes, diet shakes, full fat lattes and more cigarettes.

2. Join a gym, lift weights and do cardio until my lungs could take no more, cigarettes and eating whatever the hell I wanted in reasonable portions.

In two months I would be back down to my 130 to 135 monthly fluctuation and everything would be fine until the next winter.

When I moved out to BC I didn't put on winter weight anymore and since I walked pretty much everywhere the SkyTrain couldn't take me I didn't get fat until I started getting sick with MS.

Now its completely out of control and after a talk with my physiotherapist I have been given two choices for exercise - yoga or pilates.

I am leaning toward pilates at this moment because the pelvic floor exercises might help with the most unpleasant of my MS symptoms, but yoga is much easier to come by if I can find a school/instructor who will let me do it with my shoes on.

I don't know what the point of this post is other than to say, "I really hate myself for letting myself go".

And with that I'm going to walk around the block and then ride my stationary bike, because I am freaked right the fuck out.

Anticlimax

Today began with me having to face my own future.

Because people are assholes I have to travel by bus with a cane because I can't keep my balance standing up on a bus. (I also use a cane when I am going for either distance or speed because it helps my balance and that means I don't have to work as hard to walk) I sat in the first seat. It faces the wheelchair seat. Today the wheelchair seat was occupied by a woman in her late 50s/early 60s. I smiled at her when I sat down.

She said "You're so young to have a cane. You must have MS."

I admitted that I did and she said, "I went secondary progressive two years ago. I've been in the chair about 18 months." She went on to explain that she'd been diagnosed in the 90s and had been doing good for 15 years and then started going downhill and all the steroids and DMDs were powerless to stop it. She asked when I was diagnosed and when I told her she proclaimed that I was diagnosed at a "good time" because so much is changing.

Then we had to have the obligatory conversation about CCSVI and what we thought about it and weighing the pros and cons of going to Poland or Cuba or Italy to have the procedure done.

When all that was said and done we just sort of sat there looking at each other. She smiled at me, I smiled back. I realized that I must have a look of abject horror on my face because that is my MS nightmare.

(My full blown absolute terror is unending nerve pain, but the chair is right up there.)

I was also having some panic about starting Copaxone and really reevaluating why I was doing this, but I do know why now. It is very clear.

If 5 or 10 or 15 years from now I have a relapse that fully disables me I do not want to sit there thinking "What if I had done more?"

I couldn't live with that guilt knowing that I had options to put up a fight with this disease and I didn't take them. I've read the scientific literature and there's a track record with Copaxone after coming off Novantrone. There's a 15 year study showing that it does make a difference over longer periods of time.

MS doesn't come with a whole lot of options so I've got to take what I can of what's offered. When I get paid I'm walking down to Unity Yoga and asking if they'll teach someone who has to wear shoes (that has been a deal breaker for 4 other yoga studios). I'm walking every day. I'm watching what I eat and trying to manage my symptoms the best I can.

I also need to lose 30 lbs by the end of September because my cousin Angela is getting married and I am the hot sister.

My left arm has received its first shot. Its reaction is mild and it doesn't hurt. I'm just really aware of it in a way that I have never been aware of of my upper left arm before. Using the auto-injector made it really easy to get to the back of my arm and administer the shot. Tomorrow my left thigh will get the shot and I'm going to try it manually.

That should be, uh, something?

I think I am making the right decision. Joe's super supportive of the whole thing and sat through the nurse-led self-administered injection training with me. Francine was really nice and very patient.

I had convinced myself that it was really, really going to be a stabbing pain, but I didn't even feel the needle go in and thought for a moment or two that the auto-injector had misfired until I started feeling the drug coming into my arm. It was so not a big deal. I had convinced myself of much worse. Anticlimactic is probably an understatement.

I started out this day being really terrified of the future and its possibilities and I'm finishing this day feeling like I am taking an active part in trying to achieve the best future outcome that I can.

I don't like to think about tomorrow much, but tonight I'm pretty content with the choice I made today.

What they don't tell you.

I've been waking up every morning and not recognizing the face staring back from the mirror.

My physical being has gone rogue. I don't recognize my face, my hair or my body. My bodily functions are alien to me.

I cried in public today. That's really not my style. I haven't cried in some time and to do it in public just made it more like a humiliating kick in the teeth rather than the painful punch in the gut it is in private.

The MS people talk a lot about symptoms and how to manage them but they don't tell you *why* you just want to stay in your house and never come out. It's not just the symptoms, I am now convinced of this.

It's the little embarrassments. It's the constant mental calculations of where you can go because every trip is a metric of distance + time + seating + washrooms. It's about the little stumbles, the lack of fine motor skills making it difficult to hold a pen, the small inabilities that just build up and up and up until the degradation brings you down and down and down.

It's the stares from strangers when they don't understand why half way down the block my left leg starts to drop or why I lose my balance trying to negotiate a curb. I'm not drunk and I'm not faking in order to ask for a seat on the bus.

It's all my old clothes and shoes mocking me from the closet. It's my wedding photo staring back at me on the wall. It's Marg's boots, Dianna's corsets, Sam's travels and Laurie's job.

But the thing that made me cry today was Speechless

Could we fix you if you broke?
And is your punch line just a joke?

Listography 6 - List your biggest fears

I briefly considered numbering these, but rejected the idea. I know I have fears, I am unsure that I want to know how many.

I will go blind again.
I will lose the ability to walk.
I will lose my mind.
I will amount to nothing.
I will hate every job I have for the rest of my working life.
My working life won't be as long as it could've been.
I will always be fat.
I will never walk in heels again.
Some how, some way, my love of cosmetics is the reason why I got MS.
Getting blown up by a bomb.
Freezing to death.
Living past age 90.
I have ruined Joe's life.
Ugly shoes will be all I can safely wear.
Conservative Christians of the Batshit Crazy variety.
I'll never figure out how to translate misanthropy and organization into a money making venture.
Stephen Harper and his Conservatives with a majority government.
NASCAR
Wal Mart
I will be arrested and charged with a crime I did not commit.