Dancing with the Devil

When I was a kid, I had no ambition at all. I could not now pinpoint a time where I ever particularly wanted to do or be anything. Occasionally I dabbled with something, but only as long as it had novelty value and didn't require dedication, motivation, self-discipline or effort. I was always a lazy bitch.

My role as Consummate Under Achiever was the only accolade I could have aspired to and have had any hope of attaining.

I wandered into work, drifted into marriage, slid on into motherhood and slammed into divorce. And when I crawled out the other side at 32 I didn't know what or who I was and slowly went about finding out. I started by wondering how the hell I had got myself into such a God-awful mess and came out the other side in a bigger mess than I started. Ah the joys of an adventurous life.

It took me a long time to understand and catalogue all the things that brought me to that place, but eventually I got it reasonably well sorted in my head. And if nothing else, I learned a few major things like compatibility, both in the bed and out, and the importance of real love. There is an old saying "Don't marry the person you can live with, marry the one you can't live without". I can't help but feel it's very true.

In the past few years, I have met few men with whom I felt any sort of affinity. I wasn't just a single girl anymore, I was a divorced mother of two, and that entailed a different view of life than it had 12 plus years earlier when I settled into domestic misery. Now I had sole responsibility for two small people who's welfare must, in the interim, come ahead of that of anyone else, including me. That responsibility was the impetus to send me back to school, something I had hated with a passion as a teenager and now felt the lack of as an adult.

No longer Alison, wife and mother, I was Alison, student, single mother and provider all rolled into one. It was really hard to tell, sometimes where one bit ended and the next one began.

So I went off to Polytech in 1999, intending to complete a one year Certificate of Business Computing; I figured that would more than tax my brain and remove any novelty I found in the land of Information Technology. Having been out of structured learning for more years than I like to say, I did find it bloody hard at first. Adam was 5 and a half, Heather was 8 and I was OLD. I was lucky that the intake that year had a larger than usual contingent of "adult learners" which meant at least the odds were better against the teenagers and those in their early 20's. And as such, we had to work just that little bit harder at times to juggle the commitments we had at home as well as at tech. So "play time" at the end of term was a real "let your hair down" when we showed the kids that the oldies can dance pissed on tables until 3 in the morning without flaking out. And we frequently blew them out of the water performance-wise. Bonds were formed and support systems evolved, student to student, student to tutor, some of which still remain strong today.

So, I fell on my feet. For the first time I felt that this was something rather special, something I could easily excel at if I stopped being so stubborn, something I could actually finish for a change. Maybe the black sheep could lighten up a bit. Head down, bum up, I slogged my way through the first half of the first year and slowly built up speed to a comfortable jog. I was doing great, I was passing everything, I was graduating and so I went on to the second year.

I picked up speed in 2000 and Diploma of Business Computing. I fought my way through the latter part of that year nursing a broken heart and a son who liked damaging his digits and breaking his limbs. Usually, he managed to accomplish such feats during exam or resit week. It's really hard to study in a doctors waiting room with your hand clamped around the bloody rag holding together what used to be a finger of your only son until it met the front door with force. Year two ended with a gasp of relief and the promise of some sleep. I could not believe I had managed to complete two years of full time study, let alone graduate. And I was exhausted.

Early 2001 brought a month of chronic ill health and I decided to give myself a break and drop back to part time and take an extra year to complete National Diploma in Business Computing. Not long after making that decision, I was diagnosed as having recently had Epstein Barr virus - glandular fever. It dogged me through most of the first half of the year. This time school was a breeze, I hit the ground running and racked up merit marks over and over again. Hand in hand with a fun learning environment and a job with the Polytech as a tech assistant, I was really enjoying a great relationship with a lovely man, who just happened to want completely different things from life than I did. He moved on in August that year, and took a lot of respect, good memories and affection with him. But he didn't break my heart. I had decided I would never let anyone do that ever again. Two months later, I was diagnosed with MS.

All through this time was interwoven a curious but strong friendship with a man that had a profound impact on me in many ways. It was like dancing with a cactus sometimes, you either had to hold on tight or let go completely. And every time I let go, the spines still stuck in me pulled me back. It took a long time before I realised that there was some sort of emotional attachment going on, but the time wasn't right. I really didn't feel that the time would ever be right. Why is it so hard to dictate where we sow the pieces of our heart?

And in the middle of all this, a new Alison was being created, somewhere deep down inside a shattered pile of disbelief. The gap in this special friendship faded into the background as I struggled to come to terms with what MS might mean for me. Karma had come for the rent and I didn't want to pay the bill. And every time the friendship waned, something would shove it all back in my face, always things I had no control over. I don't think I really stood a chance.

I ploughed my depleted energy into kids/study/job and threw everything else in the rubbish. When I was tired I slept, when I was hungry I ate and when I was horny I availed myself of a bit of male company if I wanted to. Most of it was mediocre, some of it was good, all of it was casual. I no longer saw myself as "on the market". Now I was definitely "on the rubbish heap".

In 2002, my third year as a student, this time National Diploma of Business Computing, limped to a soggy close dripping with sweat and sleeping every minute I could manage just to be able to go to work. It was a rough summer full of tears and loss. And it was the summer I got my crutches. Midway through 2002, I could not carry on walking my shifts at night; my legs were almost gone and I was living to sleep, work and study. I gave up my job that I loved and concentrated on getting through 5 more months of school as my doctor and WINZ decreed that now I should be considered an invalid (or invalid, which is more the truth anyway) and be placed on an invalid's benefit. Down the slippery slope of MS I slid, through sleepless nights and migraines, sick kids and stupid questions, dead computer hardware and deadlines, anger and frustration and hurt and I fell out the other end a shattered mess with a Merit pass for all my bloody hard work. And by then, all I wanted was to graduate so I was just stunned at the success of my final result. I had finally succeeded at something.

I had grown up into the person I could never have hoped to be, stifled as I had been within a loveless marriage on the highway to hell. I knew I was smart, I knew I was capable, I knew I was honest and I knew I had integrity. I'd played in enough sandpits to know what I needed in my life, and to recognise the bits I didn't, take what I could salvage and move on. I had learnt why things were important, not just whether they were there or missing, that if it wasn't love, it wasn't worth the time. I finally knew who Alison was, and I liked her.

A few months ago I finally quit the cactus dance, I let go, pulled away and slowly and carefully removed each spine from my skin until nothing was left but the marks where they had been. I just let it all go... Or so I thought until today.

I hate surprises. Especially ones that hurt.

~~Do not be too timid and squeamish about your actions. All life is an experiment -- Ralph Waldo Emerson~~

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Murphy's Law

The grass is always greener on the other side. It doesn't matter what form your green-ness takes, it's always going to be greener over there. That's what makes us make decisions, the eternal "what will I get from this?" train of thought. Had you realised that? But, it's Murphy's Law that no matter what you do, sometimes you really aren't going to win.

Not convinced?

You park on a loading zone and rush into the bank just to stand in one of the queues, the shortest one of course. And suddenly it slows down and the one next to it speeds up. So you nip into the other one.... and it slows down. Familiar?
Lesson: Speed is relative to the hurry you are in. So is the amount of small change you have for parking.

You drive downtown in the middle of the day when there are few car parks available. You see a parking space but its a few hundred metres from where you want to go, so you drive past it cos there is sure to be another one closer. There isn't another one closer, and by the time you go around the block the first one is gone, too.
Lesson: Bugger the hassle, grab the first chance you get, there might not be another one. In fact, if you were part of scenario #1 up there, it's a given.

You take the kids to a fruit shop and let them choose an orange each. One chooses the biggest, most orangey orange in the bin. They take it home and it's all rotten and stinky in the middle even though the outside looks fine.
Lesson: Just cos it looks good and feels good, doesn't mean it is good. Learn to look beneath the surface, that's the bit that counts. Just don't squeeze it too hard.

You are home alone, it's a lovely day to lie in the warmth, get really trashed and listen to Pink Floyd really loud. And the phone rings. Then someone comes to the door. Then the rest of the household comes home.
Lesson: The louder the music and the more you are enjoying yourself, the more likely it is that someone will come along and fuck it all up. If it was pissing down with rain they would have left you alone.

You buy something, something a bit special that you have wanted for ages and can finally afford. The following week it's on sale in the same shop with 50% off.
Lesson: It might cost you more then it's worth to make some aspects of your life happen. Don't sweat the petty stuff and don't pet the sweaty stuff, it will only leave you smelling vile.

You put your life on hold and go into debt to sow the seeds of a brighter future. And before you have even finished planting the seeds, the bloody birds start gobbling down your seeds.
Lesson: the more you give up now, the less you will have to lose later.

You spend your life listening to the hearts of others but the room is empty when it's your turn.
Lesson: Some people are too blind to see how they transgress. They don't hear very well, either. Or feel.

I just love irony, don't you?

~~Whatever hits the fan will not be evenly distributed.~~


In my mailbox...

A 7 year old and a 4 year old are upstairs in their bedroom.

"You know what?" says the 7 year old, "I think it's about time we started swearing." The 4 year old nods his head in approval "When we go downstairs for breakfast I'm going to swear first, then you swear after me, ok?" "Ok" the 4
year old agrees with enthusiasm.

The mother walks into the kitchen and asks the 7 year old what he wants for breakfast.

"Oh, shit mum, I guess I'll have some Coco Pops" WHACK!! He flew out of his chair, tumbled across the kitchen floor, got up and ran upstairs crying his eyes out.

She looked at the 4 year old and asked with a stern voice, "And what do YOU want for breakfast, young man?"

"I don't know," he blubbers, "but it won't be fucking Coco Pops."

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Friends, Romans, Countrymen

Things have gone full circle. My Mum used to say "there's nothing new under the sun" and in some respects she was right.

Once upon a time, years ago, people met as children at school, married and settled near their families in tight-knit communities and stayed there most of their lives. Some people met as penpals and sometimes stayed that way for 50, 60 years, sharing the good times and the bad of their lives in the permanence of the written word and likely never meeting face to face. Pick up any NZ Woman's Weekly and there is likely to be some mention of such a relationship. Some women, especially during the War years spent most, if not all of their courtship cultivating a relationship with a virtual stranger whom they subsequently married and spent their life with. When I was a kid I must have had half a dozen penpals that I wrote to over the years, most of them didn't have English as a first language but it didn't matter at all. It was all about communication. So the concept of long distance friendships and affection is certainly not new or a product of the Information Technology Age.

Now, with computers in so many homes, the way we make friends has gone full circle back to distance being no object, only now our "letters" are emails and are delivered in seconds, not weeks or months. All over the country, kids are talking to their friends on MSN instead of just the phone (they can't use the phone, anyway cos some bugger is online) and adults are sitting on message boards and in chatrooms and joining dating sites and online communities where they are talking to total strangers about all manner of things. Some are destroying their marriages having "cyber sex" and some are forging new marriages and relationships via this remote medium. For those who are confined to the house, or socially or geographically isolated, their "life" online can be their saving grace, the only way they communicate with or contribute to their society. And for some, if they didn't have the internet, they might not have many friends.

When I first went online in about 1998, I went hunting chat rooms and ended up in one at Lycos. I met some really cool people there, from all over the world, including Katikati. I've only maintained contact with two people though, the one from Kaitkati and one from the US. The one in the US name is Tobi, and she reads this blog pretty much every day. Like me, Tobi has some major health issues, like me she copes on her own, and like me she is a woman struck down in her prime. The difference is, she has life threatening illnesses that shorten her lifespan expectation considerably, and yet she derives some form of strength from reading my mental meanderings.

I think she is much, much sicker than she realises :-)

Tomorrow, Tobi goes into hospital for another "zipper trip" - more cardiac surgery. Yet she never really complains about the limitations her health places on her, the effort of driving hours each way to hospital for treatment several times a week, nor the pain and debility she faces every day or the knowledge that she might not have a lot of years left. Like me (well, most of the time) she would rather use her words constructively to explain and communicate her fears, feelings and concerns rationally than cry all over someone's shoulder and make their clothes all wet and snotty.

Like me, she knows it won't solve a bloody thing anyway.

Part of my strength, and I guess Tobi's, is the knowledge that no one person can make us better, and there is a reason why we have been singled out to face some extraordinary trials on our Journey. Five years ago, we were both healthy, contributing and making the most of the challenges in our lives. Now we are both fighting for our lives, instead.

I have never met this lady, nor heard her voice. But I don't need to. We understand each other very well, just the way it is. Maybe the bonds and interests that brought us together years ago were just to put in place a support structure for the strength we would derive from each other further on down the line. People that are still prepared to listen are precious and rare when you are sick.

Everyone should be as lucky as me and have a Tobi.

~~ A friend is someone who dances with you in the sunlight and walks beside you in the shadows ~~

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Coma

Tuesday is always shopping day. I hate most forms of shopping, but supermarket shopping has got to be the worst.

I used to shop early in the morning, especially in summer, cos that's when it's coolest. That way I could get all my chores out of the way, come home, get it all out of the car and flake out for the rest of the day, guilt free. Then I would try to sleep most of Wednesday to get over it. After a while I realised that I lost almost 2 days for the cost of one supermarket trip. So I changed my schedule a bit. Now I run errands or visit people, then do the big shop thing, come home, sort kids and dinner and then have a snooze. Well, it's more like a coma. I sleep so deep that almost nothing wakes me, not the phone ringing, not the dog barking, not really anything except Adam yelling "Mum" loudly and repeatedly in my ear. Geez, I really hate that. Cos, you see, there is this thing called "spasticity". Spastic muscles are resistant to the normal movement that occurs during use, and may stay abnormally contracted for long periods. It may not be there all the time, but can be brought on by rapid movement or sensory stimulation. This stiffness and inability to relax sometimes causes problems in day to day life. So, bearing all this in mind, having a small person yelling in my ear when I am comatose can have unpleasant consequences, like waking up shocked and unable to bend or use my legs and arms. Now, there may be some things a girl likes to find hot and rigid in her hand, but her own leg isn't one of them. Funny, that.

It's a funny sort of sleep, too. I don't just crash, even though I am exhausted, I drift lower and lower, layer by layer into sleep. No three finger salute here, this is a full, orderly shutdown. Maybe that's why it takes a while to come back to life again. I guess

I always did need a good boot.

Irene wants me to do my shopping online and have it delivered. The home help people wanted to know if I needed someone to shop for me. I just want my energy back and be able to keep my legs. Is that too much to ask?

I have been taking these chemo pills in an effort to stave off the MS and it's played merry Hell with my general health during this time. Three months down, I have sores and lesions all over the place that won't heal, week after week not healing. I feel like shit on legs 90% of the time. And the MS is still marching on. My legs are weaker, my concentration is less and the burning is dreadful.

So, I quit. For now, I give up. Maybe I can have some other chemo drug, like Methotrexate. Maybe I won't get anything else and this was it. Colin said last week "you need to look at the quality of life you have left and from there assess if these drugs are improving or reducing that." I don't have to tell him he's right - he already knows it.

And so do I.

~~ Sometimes a little hope is a dangerous thing - it makes you think that you could win ~~

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Rodentia Revisited # 2

We killed the mice, all seventeen
And you can no longer see where they have been.

Merlin is pissed. He was fond of his snak-paks.

Freeze-dried mouse snaks - if only the supermarket stocked them.

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U want fries with that?

MS is a pain. It really is.

It's like some smorgasboard of symtoms that the disease picks and selects from before it starts ripping the props right out from under you. And the best thing is, it gets to pick and choose from Santa's sack. Damn near anything you can think of, someone with MS will have experienced it. And there are some neat names for some of what we get to feel:

Ice pick pains: Remember the worst headache or migraine you ever had? You know, the one with the huge hammer beating on your head... bang...bang...bang... wielded by some bloody maniac with a predilection for heavy, blunt instruments. Now, grind off the head of the hammer, sharpen the end to a nice long, tapering point and insert with great force into the centre of the brain. Repeat for 15 minutes. I just love the gibbering, crying mess it makes of me in about 3 minutes flat. It did last night, anyway.
LESSON: Don't get out of bed, it doesn't happen a lot of you never move.

Urgency: Oh, remember that "can't wait" feeling of a birthday party, or Xmas, or some special occasion...the keen sense of pleasurable anticipation that makes you run and jump and you can't sit still. It's almost as strong as this thing called "urgency" that people with some diseases get. It's when you bladder whispers "we are going to pee now" and you know that it is not up for negotiation.
LESSON: Always scout well ahead so you know where the nearest loo is.

Optic Neuritis (ON): Sounds reasonably innocuous, doesn't it? Optic for eyes. Neuritis for imflammation of a nerve. The optic nerve is inflamed. What is should be called is "May the points of the needles lost in a million haystacks impale themselves in your eye ball". Luckily, it seldom appears in both eyes at the same time, but it may as well do. Did you know that you can't physically move one eye without moving the other? Well not unless you are cross-eyed and if they are that bad then you are probably screwed anyway.
LESSON: Don't go to sleep - REM is a killer with ON.

Profound Exhaustion (aka DOS - Depletion of Strength)**: Remember that flu you had a few years ago, the one where you could barely lift your head from the pillow? Remember that time you drove all night and fell asleep at the wheel, you were sooooo tired? That feeling is pretty normal for someone with MS. I find it a bit worrying doing the "lights out" thing whilst driving and it's a bit embarrassing nodding off in the middle of a sentence, too. But I am sure I will get used to it.
LESSON: If you don't get all your little sleeps, you are no good for your big one.
** Courtesy of Cindi and Lorna at MSMOMS

Cognitive skills: Everyone needs a "Word" A Word is just that, a word to replace words you can't remember. Like thingamebob and whatsit.. a filler for those annoying "Senior Moments" that one tends to frequently encounter when playing MS Roulette. OK, I will admit to forgetting your name, I will admit to forgetting your birthday, but I cannot admit that I don't often recognise your voice on the phone. And I'll turn the map around if I damn well want to.
LESSON: Carrying a dictionary around won't help.

Depression: You can hear this on the TV weather report any night of the week - "... a trough of depression in the Tasman Sea...". Hey, guess what? There's a fucking big trough of depression at MY house, too!
LESSON: Wherever you go, there you are.

Neurological Pain: aka Clayton's Pain, as in it's all in your head. Inappropriate responses to physical stimuli can cause excruciating pain. But I won't notice if you stick a pin in me. Mary Mary, quite contrary...
LESSON: Alternatively, I can use my leg to heat the house, it burns hot enough.

Myelin Sheath: The fatty insulating layer on the outside of the "wire" that makes up the brains pathways that carries the brain's commands around the body. When the sheath is damaged or blocked the messages arrive late, or different or not at all. Does this make me a blockhead?
LESSON: Why am I a'lying here when I could be useful?

Sex: No, MS does not give you sex. In fact, MS will quite likely make you not give a shit if you never have sex again, from a physical perspective anyway. Emotionally, it's more necessary than ever. The trouble is, if you are single you no longer seem to fit the profile of what passes for a potential "partner". You don't get no kicks below the waistline, sunshine.
LESSON: At least you don't need to waste money on batteries for your boyfriend named BOB.

Marijuana/Cannabis: One of the Big Three chemical treatments for self-administration that exist in our fight against MS. The others are Alcohol and Chocolate.
LESSON: I need a recipe for chocolate hash cake with Cointreau icing.

Neurologist: The fucking arsehole that thinks he knows more about what we feel and how we feel it than we do. He is the man who holds the key to the Magik MRI that proves I have a brain. And 8 yummy little lesions inside it.
LESSON: My neurologist is a twang. No, he isn't, that would make him useful.

~~On the other hand, you have different fingers...~~~~

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