A Few More Inches

I had a little plan for how this week was going to go.

Hang on. Let’s start at the beginning.

I have to write code for a workflow engine this week and I have the whole week to do it. I don’t get to code, what with being a management consultant and not a developer, but I like to do it under carefully described situations, and this was a carefully described situation.

The work happened to coincide with Mr. Spit being away for a week, so this was going to be the perfect week to revel – nay – wallow in being, well, being a 14 year old boy. I was going to eat popcorn and nutella and subsist on cheese and coffee and bourbon for days on end. I was going to sleep when I was tired and work when I wasn’t.

It was going to be the perfect mental break for someone who has taken on a back-breaking amount of responsibility. This is, in all likelihood, the last time I will be able to do this at all. I should have handed this work over to the minion, but I did it last time and I can sort of make it work and it’s faster for me to do it and a million more flimsy excuses. I wanted one last fling before I became management. One last chance to come as close as I can, in my profession, to working with my hands: taking a project through the plan, build, run cycle and knowing that I did that. To having a single thing that I can point to and say “I built that.”

I wanted a chance to live a life I used to live. It is all things nerdy and geeky, but in every way I was delighted with the plan, so looking forward to it.

With great glee I told the Handsome Aussie about the plan.

And he – ever so gently – reminded me that I can’t. I can’t do this. I can’t function like this. He was the voice of reason reminding me of my limitations.

That’s what MS is.

I forget, you know.

I forget that I have a chronic and degenerative disease and I get busy with work and Mr. Spit and the nieces and nephews, taking care of everyone else and running the house, with hobbies and interests. I forget until someone asks me if I should be walking the dog 8KM a night, if I shouldn’t get some sleep, if I shouldn’t eat real food for energy. I forget until the exhaustion hits me, until I drop a glass and realize that I have lost the feeling in my hand. I forget until my leg is numb and my eyesight murky and I walk into things. I forget until I get a fever and I remember that fevers cause relapses. I forget until someone or something reminds me.

I honestly forget to take care of, to watch out for myself.

I wrote 3 months ago about how MS was a game of inches. I go back and read that post and I think about the inches I have come in 3 months. I smile more, I am angry less. I’m managing. My colleagues don’t feel like they have to stage an intervention. But this – Mr. Spit asks if I should be walking that far in the heat and I am honestly confused about why he is asking. I am reminded that I must sleep, must eat, must drink water and I want to argue with the person reminding me. I still require that people remind me to sleep and eat and drink water. I still cannot set my own boundaries and make others shoulder some of the work. 

I am kindly told that my days of up all night, fuelled by caffeine and adrenaline and sheer love of what I am doing cannot overcome the lesions in my brain. And I stare at those words on an electronic screen, and I feel rage well up in me all over again. I want to stamp my foot and wave my hands and protest, even as I change the plan.

Perhaps I have not moved so many inches as I first thought.

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Monday Miscellany

Mr. Spit and I went to the fair on Friday night, because we are cool like that. It was raining and miserable and we decided to go anyway, so Mr. Spit retrieved the foul weather gear from the basement and we got prepared.

Mr. Spit and I both having lost weight since we wore the raincoats last had a bit of a scramble to figure out how we were going to sort this – and it it turns out that Mr. Spit wound up wearing my rain jacket from high school. It’s in terrible shape, but it and I did a lot of hiking and walking together and I’m strangely attached to it, so every time we look at jackets and think about donations, I don’t give away the jacket.

Anyway, Mr. Spit reached into the pocket and pulled out a set of keys.


Those ones in fact.

Now, there’s a VW key, which means that it could be any one of 3 cars. Except the key is a valet key (because the normal VW keys fold into themselves). So, which car had a valet key that I actually would have used? Because there are are a few other tags on the key chains which tell me that I must have used these keys – this wasn’t a spare set.

And really, the whole of it is a mystery to me, because I so rarely lose things, and losing both my house and car keys would have been a hell of a thing for me. You would think I would remember things?

At any rate, they are still sitting on my kitchen counter, even when I could throw them out, because it seems like now that I have found them, I shouldn’t just throw them in the garbage.

Complete miscellany this.

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Impostor Syndrome

I ran into one of my old colleague’s in Victoria on Tuesday and we did that usual catch up thing – you know, what are you doing now, where are you working etc.

And I – in a perhaps particularly female way – hinted around the fact that I have become the leader for my service offering at work. It felt uncomfortable to say that I lead the practice. I don’t know why.  It isn’t quite clear to me, although it seems clear enough to everyone else, in both an implied and explicit sort of way, that I am leading the practice.

And it leaves me to wonder – what would be required for me to think that this work has been handed to me?

I’ve been thinking of this for most of the morning. I am now involved in bids, booking team meetings, developing and arbitrating methodology and meeting with directors and VPs.

I’d say that I’m leading the practice. It’s hard to describe what I might be doing other than leading the practice.

And every so often I look around and I think that they must be crazy, giving me this work. I forget to eat. Yesterday I ran out of time to go to the bathroom before I had to go to the airport.

We do this – women particularly. If you read about Impostor Syndrome, which I have – you realize that it thrives in environments where you have parents who alternatively over praise and over criticize. You realize that it is common and more than that, you realize that the best way you can get over it is to simply acknowledge what you are doing.

So. Based on actual evidence, I think I’ll say this – I seem to be the person in the lead.



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Circles on a Calendar

I write and I write about marking time.  Each year it surprises me as I go to Taste of Edmonton how visceral of a reminder it is. We met there – Owen and I – that summer I was pregnant with Gabe. I remember every year when I walk past the stall that sells the bacon wrapped scallops. The ones that I ate at lunch and ran away from at dinner.

A colleague is taking the month of August off. He’s like all of us with the changes at work – dazed, confused, and uncertain. He, more than the rest of us, has the time and space to take some time, so he’s going to southern California questing for answers.

We are all of us a bit lost.

I am hopeful for him and resentful at the same time. I have seen him change over the last six weeks and I am glad that he gets some time clear his head. I wish I had the same opportunity – I wish I could take a month of Sunday’s off – think about more than what I need to do to keep the plates spinning in the air this week.

And I think back – to all of the places I have been in the time since Gabriel – the six and a half years and how many times I have been lost, confused, uncertain. I look back at the things that cause me to mark time, the circles on a hidden calendar.

And I stiffen up my shoulders a bit more and march forward.

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Monday Miscellany

Sometimes the best thing you can say about a Monday is that it is over.

This Monday will be over in one hour and 28 minutes.

It has not been a particularly bad Monday, just a long one.

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Sometimes the hardest part of having a chronic disease is being gracious to the people who are patently watching out for you and your health when you are clearly not doing it yourself. Damn MS.

I over did it the other day and a number of caring and loving people were quite emphatic about the fact that I was not paying adequate attention to my need for sleep, for rest and for appropriate nutrition. So sayeth a random status of mine on Facebook. 

People being people and me being me, it was a hard thing. Those who know me well can approach me more directly – they can simply say “you must sleep. You must rest. This is not negotiable. How can I help you with this?” They will show up with food and put it in front of me and they will remind me to drink water.

And they will understand though-out the whole process that I am frustrated – I am frustrated by a chronic disease that inhibits my ability to do all the things and be all the things to all the people. They will understand that behind the frustration is embarrassment. I lived with a hypochondriac and mentally ill mother. It mortifies me that I get so busy that I am unable to remember the need to eat and drink water, and however grateful I am for the kindness of those who simply bring me food and remind me to stop for water, it makes me angry that I cannot figure out how to manage my workload and still eat and drink on my own. I was forced to caretake my mother – she used (apparent?) illness to force others to meet her needs. I do not wish to abuse others in this way.

I have failed twice then – in that I cannot do what I used to do, and that I had to be rescued and cared for because I attempted a thing and could not manage my own health like a grown up.

A friend nailed it on facebook – how it is hard to be scolded for doing a thing that I know I shouldn’t have done in the first place. My facebook status was an acknowledgement of that and an apology that I was not as gracious to those who care for me, as I could have been when they reminded me to take care of myself.

I got an email on Facebook from someone who was suggesting that my cure to MS could be found in . . .

Look, it doesn’t matter.

I have been singularly blessed – I have had very little in the way of pseudo-cures offered to me. Possibly I am lucky, most of my friends are science-y and aren’t into strange diets or odd herbs or things like that. I have a few friends who are actual herbalists, and they have come along with some suggestions for getting more vitamin D or providing some support to my immune system – things that are based on research and practical experience and in no sense are they ever presented as a replacement to standard treatment. Most of it comes with the line of “I did some research on MS and the drugs they will put you on are hard on your liver/suppress your immune system. . .”

And this is the first time I have had to directly confront someone who had an opinion on what I should be doing about the MS that wasn’t in line with standard science and it was the first time it was a woo-woo opinion and I was trying very hard to manage the line between polite and, well, “are you out of your freaking mind? I have a disease and I’m not interested in you selling me crap”

And I suddenly realized how fortunate I actually am. I have friends and I’m sure that they have opinions – not the least of which about how I should be treating myself. I am fortunate because the people around me – up until yesterday – come along and watch before they speak. They understand what I am – and what I am not. And when they think they can help, they come along gently – not telling me, not throwing things at me, but holding out assistance and letting me pick and chose.

Which is a good thing indeed.

Posted in MS Gets on Your Nerves | 5 Comments

Is You

The story probably starts this morning when I was tired and my head hurt and I was achy and felt sick to my stomach and I probably should have stayed home, but all I could think of was my list of things to do, so I went into the office.

The story gets interesting (perhaps) at about 4:15 in the afternoon, when I became so angry that  I actually kicked my desk and left a dent.

I know, I know. All things classy and mature and adult. I left the office at that point. It seemed wisest. I took a nap, took the dog for an 8K walk, made myself an omelette and then finally I went for a drive.

Matty is now a mostly well-behaved member of the deceased. Right after he died he used to pop up all over the place. I would see someone who had his walk – a middle aged man walking through a mall;  someone with almost that shade of red hair – a young girl whose hair would almost certainly darken. I would see these people with some element of him and for a moment my heart would sing because it was all a terrible mistake and he wasn’t gone. And then as I hurried to catch up I would realize.

In an instant it was the jarring phone call, the terrible silence after words slammed into me, rushing to his mother’s, the empty days while they brought his body home, the funeral, the after party we threw. It was all of that – days and days happening in a single second and the sheer force of it nearly killed me every time.

You say you want your story to remain untold

The song comes over the stereo. And I have no idea why it should give me such sorrow – I swear I have heard it hundreds of times since 1998.

And suddenly I could see him sitting next to me*. Stretching out his perpetually ungainly limbs in the seat, trying to get comfortable. He could never sit straight. I could see that vibrant shade of hair.  Some rust and some safety cone orange, a bit of brown and the odd strand of black, but over all it was just. . . orange. I could see his patchy beard (that I hated), and the acne. He his milky blue eyes looked straight at me. I could smell his soap (Ivory, if you were wondering. Which has no smell, but you could smell it on him all the same)

And I could hear his voice.

“Nice car for a stoner. Haven’t you gone all corporate?”

And he isn’t mocking me. He isn’t being mean. There’s almost a sense of confusion. That thing we do with our friends – the question we speak and don’t speak. ‘I mean, it’s fine, I guess. If that’s what you want, I’m happy for you. (Is this what you *really* want?)’

You say you’ll give me a highway with no one on it
Treasure just to look upon it all the riches in the night

In those days, when kisses weren’t contracts, we probably kissed. I honestly cannot recall. I’m sure we must have. He wasn’t a boyfriend, but he was the first of his kind – a truth teller. The sort of person who has the gift of looking into someone and seeing them as they truly are, and then reflecting that back to them. He was the first one and I learned with him, to listen.

You say you’ll give me eyes in a moon of blindness

It is 4 am as I write this. At midnight my computer was binging away because there was a decision made and then another decision and well, I wound up working. I volunteered, as it happens. It was both the necessary and the right thing to do.

A river in a time of dryness, a harbour in the tempest
But all the promises we make from the cradle to the grave

I was flipping through old photos before my computer started up. I looked at the single photo I have of him, standing there, leaning in. I looked at those faces – jubilant in youth and endless summer nights. I looked at the constellation of the people I used to pass my time with and one face led me to another memory. We used to stay up until 4 am you know.

That was when we told each other the truth.

Haven’t you gone all corporate, says he. . .

* To be quite clear, for the more literal members among us, I did not see a dead person sitting in my car. I did not have an actual conversation. I am not crazy.

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