A Game of Inches

There’s this moment when Travis looks at me and says “you aren’t allowed to die before me” and my heart contracts. I was always going to die before Travis, I am 16 years older than he is. Still, this moment. We have not told the younglings yet – they are so very close to the end of their finals that I want them to focus only on that. We will tell them after.

Gabriel’s death was the last big adjustment and it came all at once. This adjustment, it comes more slowly. I am tired today and I notice that my right eye is less clear and my left leg is a bit numb. I can get around, work, haul my suitcases, move in and out of cabs, but my vision is a bit murky and my leg is a bit numb. It’s annoying and a tiny bit uncomfortable. This has happened before but I could blame it on something else. Today I know I have MS.

I think that this diagnosis shall be an adjustment of inches.


You don’t die of MS. You die of all the things that you always thought you would die of. MS is not a killer – merely a thief. I inventory my movement and sensations each morning. I check to see what might have been stolen from me.

I make the adjustment in inches. I accept that I am tired all the time- perhaps because of the MS fatigue or perhaps because I wake up in the middle of the night in a cold sweat, worried about a list of things – cognitive difficulties, about muscle spasms, about jumping eyes, about when I can’t see, can’t walk, when I require full time care.

I worry about Mr. Spit who seems to get the raw deal of one of my problems – a wife who cannot give him children and now with a chronic and degenerative disease. I wonder how he will cope with this too. I have been nothing but a raw deal for him and there’s not a damn thing I can do to fix that. I am not the wife he thought he was getting. Mostly what he’s getting is the short end of a lousy stick.

I am snappish with my staff. Pre-occupied, unable to fully caretake them when I am exhausted myself. I am trying to carve out a nap time each afternoon, to appear capable and competent the rest of the time. I don’t want the minion to think about how this might affect me. It’s not his job. It is a struggle to hold it all together. I lose my temper and then shrug my shoulders at stuff, unable to care.

I worry about the nieces and nephews and how they will worry and how I can ease their fright, especially when I cannot ease my own. I don’t have any answers to give them. I can tell them that you don’t die of MS. I can’t tell them when I won’t be able to walk. I can’t tell them if I won’t be able to see, to read, to knit. I can’t tell them what will happen to me.

I wish I could read about MS and not panic. I read about a chapter a night, before I can feel my heart rate rise and cold sweat bead on the back of my neck. I wish someone would come along and tell me that it will be alright. I want to be wrapped up in cotton wool, have all responsibility and decision making authority taken from me. This frightens the living hell out of me. I wish I didn’t have to pay attention to how I am feeling, I wish I didn’t have to read about the side effects of drugs and decide who to tell about this thief.

And there goes another inch. Another adjustment. Another way in which I hold my head up and realize that I have a chronic and degenerative disease and my life is changing, even now. I move slowly to give myself an MS lexicon. In my head I say that there are some great days, when everything is as it was; good days – like today when I am a bit numb, but I still function and then there will be the not so good days. The days when the disease intrudes and I have to confess that I need help or I simply cannot manage something.

The days when MS takes more than an inch.

I wish I was better at this. I wish I had more courage, that I did not spend so much time overwhelmed. I wish I was not so angry and resentful, I wish I could find a way to accept that what will be, will be. I wish I was not caught up in trying to hold it all together while wishing someone would take care of me. I wish I swore less and smiled more.

I will die before Travis. Long before that, when I most want to hold his children and chase them around, when I want to use my hands and feet to show them things, to teach them what they need to know – long before I am dead, in some sense I will have that stolen from me. And I think about that, about the future and I have no answers and no idea and I don’t know what to do.


Wish I didn’t have to give an inch.

Posted in MS Gets on Your Nerves | 2 Comments

The Virtue of Anger

I had occasion last night to question the wisdom of allowing another person to own their feelings.

It’s harder than you think. “Please don’t feel badly about X, because if you do, then I feel badly”. 

At the end of the night I had to realize a single thing:

They get to choose their own emotions. I might wish I had done or said things differently, I might wish that I had chosen my words with more care. But I did the best I could and I didn’t do it perfectly and they feel how they feel. They get to own feeling badly. I’m not responsible for that.

I thought about it in the context of being angry about the MS. I appreciated those of you who let me simply be angry. Being angry isn’t going to solve the MS. It’s not going to make any difference to the disease and it’s not going to fix anything.

It felt like a few people tried to stop me from being angry because it wouldn’t help. Often it felt like they didn’t want me to be angry because they were uncomfortable with anger.

Except this: just because I am angry does not mean that you have to be. Just because I am angry does not mean that you would have to react in the same way I did. I am angry because that’s how I felt upon receiving the news. I will not be angry for the rest of my life, but I am angry now.  It’s not going to fix anything to be angry, but at least admitting how I feel is going to let me get past it. In the end that’s a lot more healthy and simply a better way to be human.

And as it turns out, after a week of being angry, I am less so. Oh, I still don’t understand why me, but I won’t ever understand that, and perhaps the better question is the same as it always has been – why not me?

This is a new thing for me and I’m not very good at it. It’s not my tendency to feel the uncomfortable things. I appreciated your support. It meant the world.


Posted in MS Gets on Your Nerves | 1 Comment

Monday Miscellany

  • If it’s Monday, I must be in Vancouver. It’s Monday, and yep, that’s Burrard Inlet right outside my window.
  • There’s a gas station in the middle of the inlet (for the boats, I would presume) which always makes me smile.
  • The minion wondered if they had bathrooms and sold chips, and I have to confess, I’m curious too.
  • My best friend Kuri got married in my dinning room on Saturday. That was pretty exciting!
  • My top wedding advice? If you are going to have an ice cream cake, don’t try and ice it, regardless of how much you want to decorate it.


Posted in Salmagundi: A collection of various things | 3 Comments

The Changes and Chances of this Fleeting World

I seem to tell people with a cup of coffee in my hand. It’s not my intent, but I guess it is a thing to hold on to.

There isn’t much these days.

I phone people, I try and get to them in person when I can. And sometimes I can’t.

So, it’s been my home office, a hotel room, the other morning from the Starbucks in the Edmonton Airport. A few times in person.

I was diagnosed with relapsing-remitting MS last Friday.

It was a done deal. I had already pulled a copy of the MRI, reading the last line of the radiologists report that said “findings suggest clinical diagnosis of Multiple Sclerosis”. I stared at that line in my living room and then went and packed my suitcase for a work trip. The diagnosis last Friday was a foregone conclusion anyway.

I tell people and God bless each and every one of them, they ask what they can do.

And I don’t know.

And they tell me that I am smart and brave and I can beat this and they tell me that I am so strong.

And then I know what they can do, what I need. I know what they expect – my usual optimism and pragmatism and ‘can do’ attitude. Perhaps they expect me to be devastated, lost, confused and frightened. I have been all of those things at turns.

What I am – mostly – is angry.

Filled with white hot rage.

Is it not enough, I wonder, that I had two miserable and dysfunctional parents and learned to find my way to normal from that? Is it not enough that my son died in my arms? Is it not enough that I couldn’t have another child?

Why is it always me? Why do I always seem to have these things happen to me? What the hell did I ever do to deserve this anyway?

I try to look on the bright side, to reconcile this against the good marriage and great partner that is Mr. Spit, against the wonderful home, the great job, the great friends  . . . .

And I just can’t.

I’m still so angry. And what I most want is to understand why the universe can’t go and pick on someone else. I want to understand why someone else can’t take their turn as the universe’s punching ball.

***Please – I’m sure that you know someone who is living and doing fine with MS. Maybe it’s you. And yes, I’ve read about the liberation therapy, about vitamin D, about yoga. I really don’t need a cheer leader today and I really don’t need suggestions on how to manage this disease. Right now I’m working at a job I love, in a home I love, contemplating the real possibility that I will have to leave my job and I will have to sell my home because it’s not accessible. There is nothing about this disease that doesn’t suck. I don’t need to hear that I’m strong or tough.

Posted in Uncategorized | 23 Comments

Through the Silent Hours of the Night

Imagine, if you will, the colour blue. Imagine that you think you know what that colour is, how it looks, what things in the world are blue. Maybe you point to things all the time and in your mind you say “blue”.

And then one day, some says that you are wrong. Maybe they pull out the pantone book and they prove to you what you thought was blue is actually green. You have, your whole life, been pointing to the grass and saying “blue”.  You have taught people to call the grass blue, because that’s what you believed it was.

And it’s not a moral thing. You called the grass blue because you believed it was blue. You called it blue because that was what you knew to be true, based on what had been told to you.You had no intent to deceive when you told others that the grass was blue. You thought you were right.

We assume, when we are told as children that the sky is blue and the grass is green, that the adults are telling us truthfully. We assume they know.

We assume our family stories are true.

By true, I do not mean unadorned, drawn scantly, without the texture of nuance and the patina of age. I do not mean the subconscious addenda we add on as lie. I allow for hyperbole, appreciating a good story as much as anyone.

By true, I mean that in the essentials, they are factual.

One of my aunt’s, on my mother’s side, died a few weeks ago. This has been awkward and ungainly sort of thing, mostly because (and I hope that you will forgive my sarcasm here) My mother told everyone that this particular sister died in the twin towers on September 11, 2001.

And it is a hell of a thing when you have to resurrect someone in your mind in order for them to die again twelve an a half years later.  There are many sorts of odd verb forms, but not even the most complex form of past imperfect can manage the words to try and describe how this might have worked.

I had dinner with a cousin tonight. I have had many conversations with many cousins in the last few weeks, and it has been a bloody minefield. Starting with the mental resurrection, but examining more closely – well, everything that my mother ever told me.

Family stories are like colours. No one ever consults a colour swatch to learn the colours. In time out of memory, when you and I were children – someone pointed to the sky and called it blue. We tell others stories about who we are, based on what we have been told. This must be so because those stories tell us about where we came from and in the most fundamental of ways, where we come from is part of who we are.

All my life I was told my grandfather was a politician, a lawyer. I was told that my family came from old money, my mother, my aunt’s, my grandmother went to the best of schools. All my life I was told that I came from blue blood, an old Canadian family. Every story my mother told was predicated on this ‘otherness’.

And none of it is true.

And out of those stories that I thought were truth, I am a particular person. I teach my nieces and nephews the right way to set a table, I wear a slip under a skirt, I send thank you letters, I am always a lady because that was who I was raised as, that was what I thought I came from. I tell people those stories to explain who I am. I thought that this part of who I was resulted from where I came from. I thought I was other and out of that other I was taught to be a certain sort of person with a certain set of skills.

And I am not other.

You would think it would be such a small thing. My mother’s lies are legendary. This is the woman who told everyone she was dying when I was 16. You would think I would be used to it by now.

And I confess – this discovery of blue and green, it is not so simple or so easy. It is rather more fundamental than I ever would have thought possible. I thought, when I got that letter from my step mother, I thought I knew what it was to have your foundations rocked.

It turns out I have more to learn. I want to ask my mother’s family – to try and understand what on earth would have made my mother lie like this. What made her lash out and rip and tear the way she does? Were all her siblings like this?

And then there is this – these things have no answer. What could they tell me that would make any difference at all?

Perhaps it is this – in the last week my world has changed in 2 very fundamental ways. One I am talking about tonight, and the other I will tell, perhaps, in the next few days.

Be present, O merciful God, and protect us through the silent hours of this night, so that we, who are wearied by the changes and chances of this fleeting world, may repose upon thy eternal changelessness;

Posted in The language of families | 7 Comments


I totally missed it, but on March 7th, this blog turned 6.

It’s one of those things that you sort of have mixed feelings about. I started writing here some three months after Gabe died and I’m still here. I thought there would be other children and there aren’t.

I thought that life would be different than it is, but this life still has incredible sweetness.

6 years is still a long time to come to a place and tell stories. It’s a long time for those of you who are still here and reading. It’s a long time to have internet friends like you.

Posted in I'm With the Cool Kids | 11 Comments

The Vancouver Conundrum

I spent all weekend in the Vancouver rain, thinking:

“Why on earth would you ever live in this place?”

And then today, the sun came out, the sky was blue, the sun glinted off the snow on the mountains and the cherry trees were blooming and I thought:

“Why on earth would you ever leave?”

Posted in It's a Wonderful Day in the Neighbourhood | Leave a comment