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.

Incapable

I don't know how to do a lot of stuff.

I have a mental picture of *exactly* how I want the organizing/checklist/homekeeping website/blog to look and how all the other marketing and business collateral will look to complement it but I just do not possess the tools and skills in order to make it real.

I have come to the conclusion that I am going to have to hire someone.
That means that I can't do anything but write plans and pretend that things are going to go as planned and pretend that I'll have a job in time to keep the plan on schedule.

I'm losing hope.

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.

Falling backwards

Sometimes when I crouch down to tie my shoelace or get something out of a low cupboard, I tip over backwards. It's one of the strangest MS symptoms I have.

For five days now I have had major spasticity in my legs. Right now it's the long muscle on the side/back of my right leg, yesterday it was both my calves (Which isn't that unusual. They're always a little tight, just rarely hurt.). Tuesday, Wednesday and Thursday it was my left leg. It was that muscle more to the inside of my thigh, but down closer to my knee. Crazy pain, too painful to walk far, and no non-narcotic pain reliever in my house was helping at all.

As a result of this stupid MS symptom, I haven't walked for exercise since Monday, except to get to and from work. Wednesday night I had an attack of MS fatigue that was so bad I fell asleep at 5:15 PM for for a couple of hours.

I was suppose to sit down this evening and work on some writing projects I've been carrying around in my purse for two weeks, but instead I printed pages and art to personalize my project planner. I fail at getting my life together tonight. I think this week is generally full of fail.

I'm glad it's over.

Ifs

I was as sure then as I am now that it was the best choice I could have made at the time and I am as certain now as I was then that I did the right thing.

It was the path that was going to lead me to a new life, and it did, just not the life I thought I wanted to walk into. This one is much better. This one has different limitations.

If it had lasted. If I hadn't caught him in bed with a young woman I knew from high school who was mainly trying to get even for me dating her ex-"fiancé" 9 months after they had broke up. If hadn't been drinking so much. If I hadn't been drinking so often. If hadn't been trying to cram myself into a gender stereotype that didn't fit.

If I hadn't been trying to find a way to live with myself and what I was told I should be ashamed of.

If I hadn't learned the lessons...

Today would be my 19th wedding anniversary. The 19th anniversary doesn't come with a traditional gift, so I can't even crack wise about missing out on the "papier maché"or "aluminum foil" anniversary.

I could have been married for exactly half my life today had he not had the sense to cheat on me and treat me so terribly that I had to go looking for Plan B. That's the truth of it. I would be someone completely different than I am now if he hadn't done that.

For the record, my Plan B was terrible. But it got me to the place where I read the books that changed my mind, which led me to the place where I learned about the internet and through the internet I figured out how to use my words. And when I finally, FINALLY, learned to use my words I realized that the guy had done me a favour. I had limited my life to what I thought was expected of someone of whom little was expected as soon as he handed me the ring. The failure of our marriage after seven and a half months (plus three additional months of drama, emotional blackmail, threats, violence, reconciliation, more drama, more threats and spending a night in jail) was the humiliation I needed to reconsider my future.

Not that I saw it like that at the time. Oh no, I was mad. Mad in the English sense of the word, not the North American one. I was broken and fallen and tired of living and I would not turn 20 until the week before the drama ended.

I didn't know it then but I know it now, my divorce was the first step I took toward saving my own life.

Rob, I have no clue where you are but I hope that you are happy. I also hope that you are as happy as I am that this isn't our wedding anniversary.

Science

I read this story a while ago, “Major Threat to Religion? Clergy People Coming Out as Atheists”

I remember when I was trying desperately to find god. I remember when I was told, no - CONVINCED - that getting that faith was the only thing that was going to save my life. As a result I spent hours, days, months and years trying with all my might to find and live in that faith. If I didn’t have it, they said, I should just act like I did have it and eventually it would come.

I filled out several trees worth of paper examining my faith, the faith of others and trying to figure out how to have the peace, serenity and love that so many others around me seemed to have found.

I never lived up to it, I never found it, and every bit of energy I expended trying to be a ‘spiritual, not religious’ person would always end me up in the same place... knowing that I was not serene, that I was mentally ill and had no idea what my options were.

"My work to answer these questions began with the thought that as I discovered the truth, it would create a stronger faith and give me comforting answers to those in my church who were dealing with the same issues. Instead, the truth I found led me away from faith."

I don’t know that the Roman Catholic Church and their 11 years of related religious education, the 12-Step movement and a couple of different ‘sects’ of pagans wanted to turn me into an atheist, but my quest to save my own life led me from their institutions and to myself, to chosen-family and to logic, reason and facts.

I was already an atheist when I was diagnosed with MS and in some ways it made it more difficult to comfort myself and others in my life. In other ways it made it easier.

I do the best I can with what science knows about my disease. I know that my personal outlook on my future does nothing but keep the people who love me from leaving, but I also know that exercising everyday, watching what I eat, and maybe taking a couple thousand IUs of Vitamin D will help the symptoms I live with. Next year I will probably go back on Copaxone daily, just because I know it will buy me some more time before my next relapse. That’s what the science says it will do.

Food for Thought

I am highly skeptical of people who claim they have "cured" their MS by changing their diet, because if it were just about food, that would be the prescription, everyone would do it and we'd all be fine. I suspect that a vocal minority will now fill my inbox with comments about how Big Pharma, price gouging neurologists and the Illuminati are conspiring to keep us all sick.

But all this reminds me of is how I hate food. Or rather... I hate dealing with food. I hate cooking, I hate shopping for it, I hate any kind of preparation and I resent the time I have to spend thinking about what I am going to eat. I even hate the time spent between noticing I am starving and dizzy but I know it's going to take the guy over on Main Street another 20 minutes to get my pad thai over to my house.

Even right now, my stomach is churning with hunger. Yet I think I will just write this post then go to bed because it's much easier to do that then to get up, go to the kitchen and deal with the idea of having to eat. If there were a daily pill that I could take to keep the stomach ache and headaches away I would do that.

My "mental block" about food drives my husband nuts. He says that if I really don't care about food I should just eat whatever he makes and not turn my nose up at it... but it isn't that simple. It's not like I can't taste food and don't know what I like to taste and what I don't. What it is like - if given the choice between food or expending energy to get food I probably won't bother and go to bed instead. I like when food gets delivered to my house, hot and ready to eat. I don't like it that I don't have a budget that allows me to make that happen on a daily basis.

I think about before I met my husband and before I got sick at times like these. I lived on tea, toast, breakfast cereal, 2% milk-double shot lattes and tuna-salmon combos from my local sushi joint, vodka-tonics and cigarettes. I would buy two orders of sushi, eat one after work and save the other for lunch the next day. I would heat the miso up and drink it before bed. Unless someone else cooked or made other dinner plans, this is what I would have 4 or 5 days a week.

I was also walking about 2 kms a day from the train to my office and back and spending most weekends running around the city or climbing the hills and walking the dells of Bowen Island in ridiculous shoes and boots. I probably wasn't the strongest person, but I looked great, my hair was shiny and my skin was fantastic. It wasn't until I quit smoking and tried to eat a more varied diet that I got sick and was forced to stop walking.

Ironic, huh?

Lets meet, so you can ooh and aah over my experience.

I have applied for many jobs in the past two months.

I'm starting to think that maybe it's me, not them.

Or it's this blog. Or it's the fact that I use the word "fuck" and have opinions on Twitter.

I'm pretty sure that I don't want to work for an employer who thinks that I would be so unprofessional as to use the word "fuck" in a professional setting or thinks I should stop being a pro-voice, feminist atheist to work for them.

Ah well, I'm sure there is employment out there for me with someone who doesn't know how to work the Google.

Battles

I'd like to think that multiple sclerosis doesn't have something personal against me. I hate it, but I'm pretty sure that we're not in a fight with each other. My relationship with MS is not a battle. I will not defeat it, just as it will not defeat me. It's a disease doing what it is programmed to do. To call it a fight or a battle or a struggle against some sort of oppressor is to make MS out to be some kind of third world dictator with a huge sense of entitlement and delusions of grandeur.

If (When) I get sick again it will not be because I didn't fight hard enough or because I did not think positively enough or because I didn't go to Poland for "Liberation" or because I didn't go gluten and fat free or any of the other 15 to 20 other "Cures" that have been presented to me in the past three years.

It will be because I have a disease that is programmed to disable me. To grant it human feelings or actions is to, in my opinion, make light of the seriousness of what MS can do to me.

You can't reason, negotiate or put MS into exile or eject it from the community. Doing what is suggested by my healthcare team and taking the daily injection from Big Pharma is not some kind of moral failing. It's working with the best that science has to offer right now for my level of disease progression.

To personalize it, for me, makes it seem as though I am some how responsible for never getting sick again and if I am left blind or disabled or unable to stay awake it is my own fault that I just didn't *Fight* hard enough.

That is more responsibility than I am willing to take on.

Your mileage may vary.

The Spoon Theory

The Spoon Theory written by Christine Miserandino

I've read this a couple of times since my friend Erin brought it to my attention in the first year after my diagnosis.

These days, I'm pretty fortunate. I've got a lot of spoons. They aren't limitless or as numerous as I had in my youth but I've got a lot to work with. Getting ready in the morning, for example, used to take individual spoons for hair did, makeup did, clothes on when now it's just one spoon for the whole "getting dressed and presentable".

 I still have to calculate for weather, temperature, and time of day. I can usually have a full and complete day - the kind of day where everyone forgets that I am sick - if I account for those three things. Sometimes - not very often and for not very long - I even forget that I am sick. Then something will happen and I will be forced to remember. My left knee will wobble, or I will spontaneously just start to tip over, or I'll be hit with a rush of fatigue that makes me need to sit down right that second. That's just what I live with. My spoons are limited.

Today is a difficult day. I'm looking for a job, and the ideal employer for me "decided to move ahead with another candidate". I was willing to give this company 80 to 90% of my spoons if I needed to just to work for them, but they don't want them. I'm not good enough, and they are probably better off with someone who's got the degree they want and unlimited spoons.

I have no other prospects and a crazy amount of time on my hands. This situation leads to crying at home whilst Ellen gives a school in Las Vegas, Nevada a new library. But in a couple of hours I will put on my game face and head out to a gallery opening for a couple of artists. That probably won't make me feel better, but at least I will be dressed and presentable.

 Maybe there will be wine.

The Future

Lisa put forward these four questions a blog post ago and I'll answer them now:

What elements made up your life before diagnosis?

Most of what made up my life before my diagnosis was doing the prep work for having a completely different life in 5 or 6 years. Going to work everyday, keeping on top of bills and money, getting Joe through school so he could get a good job that allowed me to go and get the education I've always wanted. I had friends that I could do stuff with when I could afford to do stuff. I was a part of the political party system. I worked for the candidate until I got too sick. I am on the local riding association executive. I obsessively watched and read everything I could about politics. I obsessively read and watched everything I could about fashion, but not trends. Much of my life was about what I could do with myself, for myself, by myself. I didn't have many friends who were interested in doing what I liked doing, and that included my husband. For an extrovert, I seem to have surrounded myself with introverts. My life was not as I wanted it to be, but I had the skills, knowledge and know-how to get there with time and support. With MS, I've got the time and the support, but the skills and know-how are gone.

What have you done as a livelihood?

For the past 9 years I have been in events/fundraising or an executive/personal assistant for the most part... with an 18 month sojourn into the legal field. It's a busy life with little emotional or monetary payoff, but it's what I know how to do.

Are you unable to do the same thing for a living at this very moment?

No. The key to being able to work in jobs like this is that you are capable of showing up everyday, with all your physical and mental capabilities, looking good and fresh and bright eyed, and being able to work anything from 8 hours to 12 hours without hesitation. That's not an everyday thing, but it happens more than you'd think. I still know how to do the job, I'm just not able to commit to a job like that because of the unknown future MS has given me.

And what had you pictured as your future?

I wanted a fabulous life all about me. When Joe and I decided to get married, it became all about us, and thus less personally fabulous because Joe doesn't like or enjoy many of the things I find fabulous. Since I have no real talents or interests, being fabulous is something that I've aspired to since the first time the "girls" dressed me up in their drag costumes and I passed as a boy in a dress at a gay bar. MS has stolen that from me, too.

MS has taught me that I am a really awful human being, and I'm not sure that I am at all interested in changing that. I'm extremely self-centered and selfish. I hate most people. I cannot tolerate people who are gullible, unquestioning or simple and people with no sense of irony or intellectual curiosity. I know that I am smarter than most people and really try to keep myself away from people who can't keep up or can't think abstractly. I hate children and old people I am not related to.

My social worker is sending me to the MS clinic psychiatrist, and I know that if I tell him the truth I'll be on anti-psychotics by the end of the session. She seems to think that I need to find "my soul" and re-prioritize my life.

I know where my soul is. It's in England. I sold my soul to Noel Taylor back in the summer of 2003 because I wasn't using it and I'm not sure that he's interested in giving it back. I don't believe in the soul. I don't believe that there's any part of me that's eternal, nor do I want there to be.

I have no priorities beyond making myself comfortable. In 80 or 90 years everyone who's ever known me will be dead so what I do now matters not, since I'm not curing polio or inventing the internet. I believe that the point of life is just pain management. You just work hard enough to make life as easy to deal with as possible. With MS my ability to manage my own pain is regularly defeated by my lack of money, stamina and cognitive abilities.

I'm not interested in embracing my life if there's no chance it won't end up fabulously. I have no talents and no interests beyond fulfilling my own need for comfort. Joe and I tried to talk about this last night and what it came down to was that he doesn't like me as a person very much and we're less compatible than he thought we were in the beginning. I am not interested in people and I'm less interesting than I think I am.

I'm supposed to find meaning from all this? I am supposed to find my "authentic self" or some such in all of this? I'm quite obviously failing as a human being and being physically disabled just compounds my worthlessness.

I've known for a long time that I'm just not a nice person. I guess I've just got what I deserve.