Not Magical

12-12-12 is the fourth anniversary of the worst day of my life.

***

She gets mad and she starts to cry

She takes a swing. Man, she can't hit

She don't mean no harm

She just don't know

What else to do about it

***

So here's the breakdown on my breakdown.

I've been basically unemployed since April 1, with about 10 weeks of temp employment over three months - July, August and September. I guess a little of October too. I've had just two face-to-face interviews in that time, and I've come in second both times.

I have limited weeks remaining on my Employment Insurance claim; we're running out of income. I found out today that it's a little bit longer than we thought, but I have more weeks paid out than I have weeks left in my claim at this point.

I'm not allowed to share publicly what Joe's situation is, but suffice it to say that he's not a slacker or kicking back, relaxing. We're in full scale panic at this point.

In looking at our options we are facing some really critical decisions in the next two weeks to two months.
Some of the options are, but not limited to:

1. Selling everything we can, throwing out what we can't, packing up whatever we can carry or afford to ship to my parents house, give notice on our apartment and leave for anywhere east of here that we can find jobs.
2. Another choice after giving notice is to split up and try to find jobs in two different places and whomever is successful first decides where we land.
3. Waiting it out to find a job and if my EI claim ends, Joe quits school and we go on welfare until one or both of us can find a job.
4. Joe would have to put off a whole bunch of educational goals for at least another 16 months if that is the case.
5. He's pissed that we even have to consider that, for a whole bunch of reasons not unrelated to industry ageism.

So, I've barely stopped crying. This still isn't as bad as being told I have MS, but it's pretty damn close.

***

I have been relapse free since my initial attack in December 2008. I have 98% of the faculties I had in 2007.

I have not used a cane since September 2011.

I have not needed to use my shower seat since 2010.

I have not slept for more than 10 hours in a row since 2009.

I have not had double vision since January 2009.

MS so far has not killed me, but it has not made me stronger.

***

I will be so happy when this year is over. Or this decade. Or this century.
I'm so fucking fed up with the realities of being me, I just want to quit.

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.

Mitoxantrone

I had my half way through treatment heart scan today.

Tomorrow I meet with the cardiologist. If everything is still good, I'll get my next mito treament in July.

It was raining and totally cold today and that does little for my mood.

I'm always freezing or hot flashing. I rarely am just temperate. There's nothing I can do about this until after I see all the specialists who get a say in what kinds of drugs I am allowed to go on. It's more than frustrating.

I'm officially seeking employment. It sucks. Job hunting is as soul destroying as MS.

Symptom Log: Day 27

I have these three symptoms all day, every day.

• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
  
• Depression
  
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)

The footdrop, ataxia, neuralgia, anaesthesia, fatigue, anxiety, mood swings and Uhthoff's all come and go and are largely dependent on how well I manage my time and my energy. Like for instance, I can't go for my six block walk and do yoga in the same day, so I do each every second day.

Writing privately is proving to be much better for me (and let's face it, all of you) than blogging. I feel less judged, more able to manage my own response to my life, and I feel like I'm just better off not sharing what's really going on. Everytime I try to tell someone I actually know the truth about what is actually happening I get told that I just need to be positive, that I need to count my blessings, and that I need to just be grateful.

And that lets me know that the people who actually know me don't really know me at all. That makes me sad, because that includes the man I married and two or three of the people I consider closest to me.

Today's been a real day of evaluation for me because my grandfather died 10 years ago this very day. I miss him and there isn't a day that goes by that I don't wish that he and Joe had met.

My life was very, very different than it is now back then. I don't think that the people who know me now would even recognize the person I was back then. I'm glad that part of my life is over.

I miss my grandpa. I wish he were here.