Not Ok

I fake it well. I really do. Through a tough day with a staff member who had to be disciplined even though I like him,  through a hard workshop, through telling my family, I fake it well.

I do what needs to be done. I do my job. I do it well.

Everything I’ve ever been trained to do, I do. By God, I’m a lady.

Right up until the more or less entire bottle of wine and you realize, I can’t fake it anymore.

I take care of everything. Until I realize, there’s no one to take care of me.

Maybe it’s not a surprise to you. Maybe you saw this coming.

But I’m kind of not ok.

I have a degenerative, chronic disease. It will rob me of  . . . everything.

I’ll just be on my hotel room bed. Sobbing.

I can make jokes, try and adjust my attitude, but really. . . .

I’m kind of not ok with this.

I realize you thought I was.

I realize you thought I changed my mind.

I’ve changed my mind.

Posted in MS Gets on Your Nerves | 2 Comments

Watch Maker’s Entropy

Sitting in my third year philosophy class, I had no idea that the questions could be so real at 35.

Is God a watchmaker then? Is he the a priori creator of the universe, the omni, omni who called the world into being, caused it and made it and then spun it off into the heavens, where he watches us, from afar?

Or is God a tinkerer? A sort of paternal mad experimenter who pokes and prods, oils and greases the workings of the universe, listening for a gear out of tune? Does he watch us, with a dirty leather apron, smelling faintly of engine grease and sweat?

I prayed between the inducement and the birth of my son. I prayed like I have never prayed before or since. I do not lie when I tell you that it didn’t occur to me to ask God to save my life. My son. My baby. My good Friday to Easter Sunday, not triumphant. I prayed and prayed and God said  no. My son died in my arms. I prayed for the babies I carried for just a bit. I prayed over all those cycles that yielded nothing. I used to believe that God was a tinkerer.

It didn’t occur to me to ask God about the MS. My old faith said that God was a tinkerer and there was a never a moment that he couldn’t save me and change the course of well, everything. This time? When would I have prayed? By the time I was in the MRI machine the lesions were there or not. By the time I got the results it was a done deal. Prayer – this time I have realized – was never about saving me anyway.

I have to tell the younglings on Friday. I have to tell them that I have MS and things are going to change. Maybe now. Maybe not. I kept saying that it wouldn’t be that bad – at least I said this in my head. I told myself that I wasn’t that important to the younglings. It’s not like I was their mother or even really their aunt. Mr. Spit tried to suggest that I might be under estimating my importance. The minion told me that the my idea was “bullshit”.

I can tell everyone else, and it won’t be fun, but they are adults. We have a more equal existence. We move between the bonds of friendship, giving and taking.  My job with the younglings though – that’s different. My job is to pour into them so they become adults. My job is to love them where they were, to help them make the next step. My job is to believe in them so strongly, with such fierceness that they have no choice but to believe in themselves. My job is to be that very last bridge between almost-adulthood and adulthood.

So last night I laid awake and I bargained with God.

You can’t bargain with a watchmaker.

I want to not be important to them because I feel a very real risk that I will fail them. This one last thing I have to teach the younglings – trying to show them grace in the face of hard things. I’m ok with that. Right up until the point when it hurts them. Right up until the point when I can’t do something that I want to be able to do.

God is a watchmaker and he’s not going to save me from MS. The most he will ever do in this world he ordered is give me better strength to bear it. (I should point out, I’m not doing well at this right now). But last night, as I lay awake I wished he could be something else. Or, at least I wished I could believe something else about him.

Call me small, tell me that it’s because I don’t like appearing weak. Maybe. I think it’s a bit more. Hurt me as much as you want, God the watchmaker. Throw that world into being and let entropy take over.

Just please, this – can you keep it from the ones I love?

Posted in MS Gets on Your Nerves | 6 Comments

Monday Miscellany

  • I did Easter Brunch instead of Easter Dinner this year. I always forget how much I like making brunch.
  • I, unfortunately, got way too much Chocolate.
  • The  cats have taken to peeing on the throw pillows on the couch. I am beside myself with rage.
  • It’s really not spring yet here. It’s still brown and dingy.
  • But I’m in Vancouver all week, and it’s going to be very green there.
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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 | 5 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 | 3 Comments

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.

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