Fail...

...Fail again. Fail better.

                 - Samuel Beckett

You keep showing up. That is huge. 

                - My friend Erin

I have never spent much time trying to be perfect. I have, however, spent innumerable hours just trying to be good at something. I don't need to be, and I'm pretty sure I don't want to be, the gold medal winner or the Oscar winner, or the Nobel Prize winner.

I just want to be good at something that matters to someone other than me.

I love the great projects and hate the daily maintenance. I love it when my to-do list is full of things I only have to do *just this one time* and start changing the due dates on the things that I do every day or are part of my weekly or monthly routines.

Routines are SUPER GOOD for my mental health, and when I get overwhelmed by what to do next my routine list is the place where I set order from my chaos.

But I rebel. I ignore it. I do something more fun.

I stay up all night 'net surfing for tiaras. I read entire websites on stain removal. I use the "Explore" function on Google+. I do anything to avoid the unpleasant or uninteresting.

EXCEPT when I am at work. I do the boring, unpleasant, routine stuff first just to get it out of the way. Also, there is WAY more boring, unpleasant, routine stuff to do than there is interesting, fun, new stuff to do.

Coming to accept that life is very rarely a barrel of monkeys has been especially hard to do since I quit drinking like an asshole 19 years ago. This is how I become a grown-up, I guess.

(Ooo... lights just flickered and there's thunder outside. My battery is charging, so I should bail.)

Pride 2012

A giant Viagra pill during my WTF? moment at Vancouver Pride 2012 - image from The Georgia Straight

"Heterosexuality isn't normal, it's just common.”

- Dorothy Parker

Such a good day, in the shade, beside the beach with my friend Sam. I had a cooling tie and a fabulous hat, and lasted the whole 2 hours on my feet without taking a break until I got a snack over at Gay Day on the Beach. It was a great afternoon in Vancouver.

I am a little tired now, but that could be because of the wobbly-pops I've had since getting home.

So many families today. So many hotties. So many fabulous young women.

One weird naked guy in a straw hat whom I can only hope for his sake is a "grower".

Photo - Reuters

Cool thing: Manny Malhotra of the Vancouver Canucks and Patrick Burke of You Can Play (and the Philadelphia Flyers organization) came out in support of gay athletes and the end of homophobia in sports. I love this group a lot. I will write more about them, their videos and their community involvement once (if) hockey season starts.

Ho hum music this year. I mean seriously, NO Gloria Gaynor! No Sister Sledge! Okay, there was some Village People, but it was the fucking *YMCA* who were playing it. The only time I heard "Born This Way" was when the Vancouver Gay Men's Choir sang it as they escorted Grand Marshal Bill Monroe:

Don't be a drag, just be a queen. - Photo Reuters

But I DID hear Flo Rida and LMFAO multiple times. Clearly the youth of today have no idea what good music is for a gay parade.

Pride goodies were also kind of lame. I only got:

• 1 lubricated condom
• a button demanding a freeze of tuition fees
• a card demanding the immediate reversal of the ban on gay men giving blood
• the best crowd-handout Pride flag ever
• a button and a pen from the CBC tent
• a 30SPF sunscreen towellette
• 3 Trojan condoms that have some sort of additive that will make it more intense. (um, yeah, I've now looked at the intensified package... not sure that I'm letting something with ginger in it *near* my vag.) (Just saying...)
• a promotional card for the, uh, marital aids that Trojan is now selling to *the ladies*
• a bumper sticker for Pierced and Culture Craze, and 
• a promotional piece for the Terminal City Rollergirls.

A disappointing haul as compared to previous Gay Halloweens along the parade route. But I guess the with economy being as it is Pride swag gets cut.

Also, the marshalling was *so* bad that at one point people left our area because nothing showed up for more than five minutes and all we could see was crowds of people coming from downtown. Then all of a sudden Hedy Frey and Co. rounded the corner whilst she sashayed 3 inches at a time in a mermaid costume.

The bonus part was we got to move in closer to the curb when so many people left.

Then there were times when there were five floats on top of each other and then nothing for five minutes, even after Hedy's wardrobe slow down.

All in all I'm glad I travelled the way I did (and I'm not telling because it was awesome, not crowded and got me to the part of the parade route I wanted to be at with little sun exposure or distance) and I'm glad I got to hang out with Sam.

Happy Pride Vancouver!

Yes, that is Bert and Ernie. They announced their marriage today. - Bert and Ernie Love - Vancouver Pride 2012 by Petitecornichon, on Flickr

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.

PPPS

The 17 18  songs I received from my friends for my music project. They will not be identified by song, but I'd like to thank Lesley, Sam, Sammy, Rogue, Shelley, Tracey J, Leigh, Renee, Hayley, Jason, Jamie, Jackie, Kate, Donna, Duane and two women named Jen. Listed alphabetically by artist as they appear in my iTunes playlist.

Dancing Queen - ABBA
Verlaine - Charles Trenet
Hurricane and Fire Survival Guide - Cloud Cult
I Wanna Drive the Zamboni - Daddies Gear
Point of View - DB Boulevard
1234 - Feist
I'm Yours - Jason Mraz
Doll-Dagga-Buzz-Buzz-Ziggity-Zag - Marilyn Manson
Bloody Mother F*****g A*****e - Martha Wainwright
Float On - Modest Mouse
Smack My Bitch Up/Where's Your Head At? - Prodigy V. Basement Jaxx
Lodestar - Sarah Harmer
Move Any Mountain - The Shamen
It's a Great Day to be Alive - Travis Tritt
Beautiful Day - U2
Linus & Lucy - Vince Gauraldi Trio (yeah, it's the Charlie Brown song!)
Illusion - VNV Nation
We're Going to be Friends - The White Stripes


Tomorrow I'll talk about the project and how it worked.
Edit:I forgot to add one from my iTunes to my playlist! Sorry person who gave it to me!

I remember her saying, "I'm already dead".

My experience with peer support groups was not based on me trying to deal with my symptoms, or what they mean or meant, or needing explanations of what ever ache and pain was about.

I was trying to find out how you deal with the real world when your body can and will stop working for you without notice.

I was trying to find out how you don't shut yourself down and shut yourself out of the real world.

I was trying to find out how you reclaim your life before diagnosis. I was trying to find out how you keep your old life as much as possible. I wanted to know how you deal with having your livelihood, your body, your mind and your senses stolen from you without losing your mind and sanity.

And the truth of the matter is... none of the people in these groups had answers. Or their answer was unacceptable to me.

Today I went outside for the first time in a long time all by myself. I walked 10 blocks from my house to the SkyTrain, took the SkyTrain to Waterfront, walked from Waterfront to my former workplace in Gastown, picked up my last paycheque and the stuff from my desk, walked back to Waterfront, went to the bank, went to the Shoppers Drug Mart at Broadway, grabbed a burger at A&W, and took the bus home in just less than 90 minutes.

My left leg started failing between the office and Waterfront, but the rest on the train made it better once I got to the bank. But for the most part, the outing was uneventful.

(Well, I got new mascara. That's eventful. It was on sale for $7 and we'll see how I feel about it later.)

Tomorrow I have an appointment with my social worker at the MS clinic. We've got some stuff to talk about then.

That brings me back around to the title of this post (which is a sample of Patricia Krenwinkle, a former Manson family member, used by White Zombie in the song Real Solution #9) and the original point of this post.

If not being able to get something that looks like and acts like who I used to be is the expected and tolerated outcome of MS, then I'm not sure I want to live.

Maybe I haven't allowed myself to fail enough yet, but I'm not drinking the MS support-group Flavor Aid just yet. I refuse to believe that the only friendships I'll be able to maintain are people who meet me after my diagnosis. I will not believe that Joe and I will be divorced by the end of 2011. I cannot accept that I won't be able to handle stress or dance again or wear heels or get brain and eyes back.

If I that's the way it HAS to be...

"I'm already dead."

Shootin'

I had to hold the pistol a lot further away than was physically comfortable, partly because the hot gas coming out of the cylinder kept fogging up my safety glasses but also because I was having a really difficult time getting my eyes focused. The sights had no defined, crisp edges at all, due to vision issues I'll explain later. I'm actually shocked that I did as well as I did.

I also learned that getting excited about good things makes my left leg act up. Apparently, having MS means that you can't get happy, angry or generally emotional without having some sort of physical effect that has the potential to screw up your day.

"Of all the preposterous assumptions of humanity, nothing exceeds the criticisms made of the habits of the poor by the well-housed, well-warmed, and well-fed." - Herman Melville

I heard this last night at the end of the syndicated episode of Criminal Minds on A&E, and it got me thinking about how I judge people by their experience of the world and how I have been judged by my experience of the world. I have a difficult time taking people seriously who haven't lived outside their comfort zone. I have a difficult time trusting people who've never done something illegal. I can't be close to someone who's never fucked their life up for a period of time.

I have also found the criticisms by people in the MS world to be less than helpful or constructive. When I say that I am really not sure that a life with MS is worth living, I get told that I'm miserable and negative and I'll never appreciate the joy that is found by getting outside in a scooter. When I say that I can't read, people automatically start telling me to get prism glasses to stop the double vision, without even considering that I don't have double vision.

I have cognitive impairments that prevent me from remembering the first paragraph I read. When I start the second paragraph, I can't make sense of it because I don't remember the first one. So I have to go back and re-read the first, etc. etc. I took me a week to read a single chapter of The God Delusion so I gave up. I've cut my Google Reader subscriptions back because I can't read 97 news/politics/commentary sites every day. Even with only 30 I find myself skimming, because my brain is just not geared for retention.

I obsessively go over these blog entries and still miss typos and errors I never would've missed before. I used to be really smart, but thanks to MS, I've caught "the dumb". I really can't decide what I am more terrified of; losing the ability to walk, to see or to think.

My second issue with reading has to do with my eyes themselves. I can't keep them focused without actually *thinking* about it. Even as I type this I have to keep forcing my eyes to stay in focus. The eye doctor at the MS clinic says that it's not anything they can really fix with glasses, I just have to keep exercising my lazy eye focusing muscles. When you spend a great deal of time just trying to keep edges on the world it makes your eyes tired and you get headaches. I have headaches almost every day. I eat 6 Tylenol every day just to deal with it.

People with MS who want to give peer support seem to be more than happy to jump at you with a solution to a problem, even if you don't have that problem. Whether its my vision or my mental state (which wasn't exactly great *before* I got MS) everyone has got an opinion on how I should behave or speak as a sick person. I'm trying to live up to my own expectations these days, so forgive me if I fail to live up to yours.

But going out shooting yesterday was good for me. I was out and standing for more than an hour, I wasn't completely exhausted (or even all that tired) when I got home, and I enjoyed myself and the hour of almost normal I was able to have.

I have until bedtime Monday night to complete my music project. If you are a friend of mine, interested in helping and have 10 or 15 minutes to spare, please comment, send me a message, an @reply or email.

That's a lot of different communication mediums, don't you think?

The First Ninety Days

Three months ago something that I had been suspecting, but hoping for something else, happened.

It wasn't a shock or a surprise. I have Google. I know how to put symptoms into the search and come up with possible diagnoses. Multiple sclerosis came up way more often than anything else. I knew for weeks that it wasn't cancer or a tumor. I was fairly sure that is was MS, but after watching a few too many episodes of House I secretly hoped for something more exotic and curable. I knew. I just wouldn't or couldn't say it because it's not curable. I've never had anything before that couldn't be cured.

I don't deal well with this fact. I have an ongoing issue with having the will to live, and I won't lie to you... I often wish that I was terminal. After a couple of decades of involvement with the mental health systems, I know that there's a difference between not having the will to live and being suicidal. I am not suicidal. I just find life really difficult at the best of times, and now that it's the worst of times, I'm not sure what the point is.

However, three interesting things have happened over the past 90 days that have changed my world view from "Life is not worth living" to "Well, lets give this living thing a whirl."

Trust me... Vast. Improvement.

1) I made my first introductions to internet discussion groups about MS. I lasted about two weeks. I was inundated with emails from people who had great "research" findings that claimed that if I went on a gluten, ovo-lacto, legume, sugar, and meat free diet, had a colon cleanse, smoked pounds and pounds of organically grown marijuana, AND have the government investigate the viral loads of the drinking water, I would never suffer from another symptom of MS. I am to avoid every MS drug approved by the FDA because they're poison and I will die 30 years sooner. I am to transfer every marital asset into my name because Joe *is* going to leave me before the end of 2010. (99.999999999999% of ALL husbands leave within two years after diagnosis.)

It's like MS has it's own "Truther" movement.

Tin foil hats look terrible on me and dealing with people with levels of negativity that make ME look like Mary Poppins, so I bounced. I am fairly tolerant of other people's crazy, but I can't deal with conspiracy theorists. There was also a huge movement to get government to approve the use of low doses of pretty heavy-duty pain killers in the "treatment" of MS. I'm not sure how that works, but it's not my bag.


2) My doctor made a great case for a course of mitoxantrone while leaving the ultimate decision to me. I was sitting there in his office in January thinking, "If it's this bad after less than a year, how bad is it going to be if I do nothing." I'd read some about the other treatments and diets and changes and realized that I would probably get much worse until those things started working.

The first treatment went really, really badly until about two weeks later. One day, I just woke up feeling better. Then, quite at random, things started working again. Not all the time, but they would work. I had my second treatment a week ago and nothing bad happened. My improvements kept building and building until Tuesday of this week. I went to get a cinnamon bun from the corner store (about a half a block away) and I was halfway there when I realized that I was walking without a cane. Yesterday I did it again.

Last night I was walking normally. I don't walk normally all the time, but I'm up to about 80 or 90% of the time. When I stand up, I don't have to physically correct my stance to keep my balance. That happened every time I stood up yesterday and today.

This treatment is really working, and I can see measurable results that tell me that I am going to get better. Two or three months ago that wasn't obvious to me.

and finally,

3)This blog was found by Lisa Emrich and she was kind enough to add me to the MS Blogroll she runs.

This allowed me to access the real stories of real people who aren't devastated by this disease on a daily basis in a way that the online discussion groups just didn't. I'm no beacon of hope and will never advocate for the rectal use of sunshine, but it's just really, really good to see people who are just getting up and doing it.

As I was writing my previous entry, all of a sudden I had the lyrics of Matthew Good Band's Strange Days [You Tube] going through my head. Specifically the last verse.

We're done lying for a living
The strange days have come
and you're gone
You're gone

Either dead or dying
Either dead or trying
to go

Good morning
Don't cop out

And today that previous entry was featured in that Carnival of MS Bloggers #31. The Carnival is "a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis."

With that, I am going to rename the title of my blog.

Either dead or trying...

Pretty Good

Today was an incredibly surprising day.

I had a really crappy night. Pounding heart, uncomfortable muscles with twitches, a tension headache across the brow, and major anxiety.

I woke up this morning and my legs worked. My body didn't ache. I didn't have a headache, nausea or feel like vomiting. The pressure behind my left eye was gone and the continuing blood-shot look of that eye continues to decrease. I felt *good*.

I didn't feel back to normal, or like I did a year ago, but I felt good. I felt like maybe I was making some progress. Like maybe things really could be different in a couple of months. Last night was the first case of side effects of the solumedrol steroid treatments. Five doses and then I get side effects. Great.

Speaking of side effects, the reaction I had the first time to this treatment likely wasn't caused by the treatment, but the fact that I had a slight case of double vision that was causing vertigo. My EEG showed some crazy stuff going on with my ocular nerve before the treatment, and it took over two weeks for the treatment to shut it down. So, 17 days of puking was caused by my eye. How about that?

It's weird, I have felt so crappy for so long to have a day like today (a day I've been dreading for more than a couple of weeks) is really inspiring. I can't shake the feeling in the back of my head that it's all going to fall apart again, but today was good.

In about 15 hours I will be past my period of cytotoxicity and will be able to kiss and drool on my husband again. I am going to try a new remedy to ease my dry, flaking, screwed up skin tomorrow, and try to get back into my routine of vitamins and supplements to make up for the fact that I really, really can't cook.

I wore makeup to the hospital yesterday. It's the first time I've worn makeup in months. That's a big deal, but it felt really good to actually give a shit about my appearance.

The thing that freaked me out the most yesterday was that I couldn't remember being there a month ago. I mean, I know I went, I know that my friend Rina took me there and met me at the nurse's station to pick me up, but I couldn't remember where I went in the hospital, I didn't remember the nurse, or the room, or anything. The nurse remembered everything about me, including what kind of hat I wore the last time. She remembered my husband's name, even though he wasn't even there the last time. It was weird. I was incredibly upset that I couldn't remember anything about my first treatment other than the guy who was in the next bed was kind of a jerk.

Ahhhh, cognitive difficulties. Or trauma. Who knows really?

I have a difficult time being patient with myself, I have a lot of things that I have to work out financially and career-wise. I wish I was capable of drinking more wine with friends and being able to fall asleep at midnight or getting up before 1 PM.

About getting up before 1 PM, my mum is telling my grandma I have MS tomorrow. So, I have to be up at 9:15 AM to suck back enough coffee to be coherent enough to talk to my grandma. She's a little emotional, loves her grandkids, and has a blood pressure issue. I don't want her to have a stroke over this, so there's a ledge she will need to be talked down off of.

I hope mum has a lot of tissues. This is going to be a tear-jerker for her.