The List

My brother in law, as he is won’t to do, sent me an email telling me my failings. (He does this about once a year. I don’t like it, but I’m used to it). I am, among many other things, too negative and too prolific on facebook. I am not being a good Christian and I shall be castigated upon my death for my idle words.

Someone, in the hell that was the time after my MS Diagnosis, my initial discovery of my mother’s lies and my boss quitting (which happened in 72 hours), made the comment that it was ok that I was grumpy and angry – eventually I would get tired of being grumpy and angry and go back to being my usual self. Grumpy and angry were important emotions, and I needed to feel them, but they weren’t apt to stay around forever.

I don’t remember who told me this (and maybe it was one of you), but I was so grateful. As this person predicted, about July I realized that I was tired of being grumpy and angry. I am, by nature, more given to optimism and resilience. It was essential, as part of learning to incorporate my new realities, that I spent some time with grumpy and angry instead of brushing them aside. Spending the time with grumpy and angry meant that I could move forward to optimism. and resilience in a real and authentic way. Grumpy and angry were steps in grieving what used to be, as I started to accept my new realities and figure out how to pick up the pieces.

It was interesting, because in my brother in law’s list failings was a kernel of truth, a thing that someone else made as an observation. It was merely an observation from someone who cares about me –  “I’ve noticed you have been more negative. Now that you tell me what is happening in your life, I understand.” 

All of this got me thinking about the concept of a list. The people who said “I’ve noticed you are negative. I’ve noticed that you are grumpy.” They phrase these as observations, not moral judgements. They do something else too – they ask how they can love me. Can they skype so I can talk about my feelings, can they ask me questions, can they send me silly photo’s of otters, can they tell me that they love me and hug me? Can they remind me to eat and sleep and drink water as I learn to make these habits for myself?

In short, they abide with me through grumpy and angry. And they call forth – not as a moral imperative essential to my salvation – but out what they know and believe of me as a person. The people on this list – they don’t hold out faith – they hold out confidence in what they know of me. They abide and wait for my better nature to come out again. They know it will – even as I am unsure how I will pick up all those broken pieces.

In thinking about my list, I realized. I have a large one – far, far larger than I realized until I started thinking about it.

Posted in Tiny Points of Light | 1 Comment

Monday Miscellany

Every morning I work from home, I go down stairs about 8:10 am, and I watch a mum, a boy and a cat walk down to the bus stop.

The boy gets on the school bus, and the mum and the cat walk back home, and it is the cutest thing I see all day.

Posted in Salmagundi: A collection of various things | 1 Comment

Habits

I am a creature of habit. A creature of lists and routines and things that I do over and over again. Some of them are conscious (I’m trying to drink water and take my vitamins while my coffee brews each morning). Some are born out of busy-ness – I put my parking stub in the same place every day because I do not have time to waste on trying to find it. I make lists because I have the memory of a fungus gnat, and for a time could not reliably tell you the day of my husband’s birth.

In other words, I use a variety of coping mechanisms to make my life easier. I would love to tell you that this is a coping strategy for the MS, but the honest to goodness truth is that I have always been so. Every single thing I can relegate to routine and habit frees me up to think about something more interesting (because honestly, trying to locate your parking stub is not even a bit interesting).

I find myself interested in habit from a professional sense – at least some of what I do is managing habit driven behaviours, and from a personal sense, because I am so very habit driven.

It’s funny, because in a professional sense, I am well aware of incentive and validation and their role in habit formation. I tell clients about this all the time, how our emotions and our feelings and even our identities are tied up in what we do over and over, and things are doomed to go sideways and fail if we aren’t mindful of that. I think about Duhigg’s work on Cue, Routine, Reward.

I’m making a change, in slow increments. I’ve actually had to reverse the cycle – to physically remove the opportunities for routine. I’ve had to stop myself, back track, and start over.  Mostly I’m just at the hard part – where the cue’s keep happing, I know that I have removed the opportunities to easily fall into the routine, and there will be no reward.

I have to say, making habits is hard. Breaking them is harder.

Posted in Learning Life | 1 Comment

12 Minutes

On Sunday I was having a conversation with someone, and I walked away because it felt like it was turning a bit into the pain olympics.

The reality is that I know that I can win the pain olympics, at least most of the time. In a single sentence.

And then I cradled my son – the baby I wanted more than life itself – in my arms and sang him a lullaby, as he gasped for breath and suffocated to death. 

I don’t try to win. I suppose because it’s a pyrrhic victory, but more than that, because what would be the point? I know more pain than you? So what? It doesn’t diminish yours, it doesn’t change things, and sooner or later I realized that I wanted to be many things, but I didn’t want to be known as the woman whose baby died, for the rest of her life.

This morning, on my way out to the door for a MS treatment (which should have been Saturday, and is massively inconvenient on a Wednesday, but I digress), a client called.

He apologized profusely because it was early and I was no doubt getting my husband and my child out the door and he was sorry to inconvenience. I didn’t tell him about the MS treatment, but I did mention that the husband was good at getting himself out the door and there was no baby.

He said he was surprised. That he thought I had a small one at home, that he could see me with children. I answered much as I always do, that there is a dog, 2 cats, 6 fish and 9 nieces and nephews, but no small one that is mine.

I say it in such a straight forward way. I surprise myself, even after all this time and all this sorrow – I can make such light of it.

In 3 minutes now, I will rush out the door. I will get my recombinant DNA, cultured in a rat brain, and I will build a road map and maybe start on some guiding principles for prioritization while I am being infused. I will come home, and I will gut through a meeting that I simply have to take, even though the drugs make me horrifically sick, because it must be done. Hopefully after I can sleep and mend.

There is only this – clients and projects and family and trying to manage all of it and a chronic disease as best I can.

There is no baby to speak of. That was, I suppose a great tragedy, but on days like this, I am aware that it is only one of many.

Posted in Baby Loss | 1 Comment

Festina Lente

It was the first time, sitting on the adirondack chairs in my back yard, under the lilac, that I had a sense you could relate differently.

“We have journeyed a long way together. I want to see if there is a path forward we can still walk together” 

Previously, at 16, someone made reference to a bad relationship as two people held together with a double barbed fish hook through both their hearts. The only way free was to cut your end of it out, heal yourself and leave the other person be. They walked around with something stuck out of their heart, or not, depending. You were free. Before that day under the lilac tree,  I looked at things from a purely practical point of view – how do you make the hurt stop? It was that other person, with their talk of a journey that told me something else.

Half a lifetime later, I can see that they both have merit. There are times when you cut the fish hook, walk away and heal yourself. There are times when you look at the path you are both on, see that this is a bump, a dip, a boggy patch, and you keep walking. Maybe you pick up the pace to catch up to them, and maybe you slow down and wait. You recognize that relationships of all types are a journey and all journey’s have problems.

There are the times when your heart is inflamed and matted with blood, scars and clots. So swollen you aren’t sure if you can find the fish hook to cut it. Certainly you know it must be there, because you can feel the tug and pull weigh you down with un met expectations and hopes and wishes. You are smart enough to know that you are on a journey – so you stop and look around.  The other person is out of sight – but you can feel them.

Upon cursory examination, all you can feel is hurt and let down and sadness. If you stop and wait, you remember other things. Care. Concern. Laughter. Memories of a journey. So maybe it’s worth it – not always, but sometimes. You wait.  Look around. Listen carefully. See if you can hear the other person. Wait. Examine the blood and the hurts and see what things you can learn about myself.

I have no answers. I honestly don’t know what I will do. I war against my innate desire to love, to chose care and concern and by how damned much I am bleeding. Before you can save anything, there has to be something to save. I’m not sure if there is.

This fall was my season of waiting. I had a big decision to make. It was hard and scary and complicated and a great deal depended on the outcome. I went back and forth, spinning around and changing my mind so quickly that I made myself dizzy. Until I realized another thing I have learned.

Festina Lente.

Make haste slowly.

When you do not know what to do, do nothing for a while.

Posted in Friendship | 2 Comments

Sticks with you

Nostalgia-take2final

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The changing of the light

When I was younger, the change in the seasons, and particularly in the hours of light always took me by surprise. I would notice how it got so very dark so very soon in December, and then suddenly in May, I would notice how it was light for hours.

I am surprised still, but in an entirely different way. I am surprised by how lifted up I am as I watch the sun in my office window in the morning, as I bask in the setting sun later and later at night. I marvel at the quality of light as it falls across my floor at home, as I bask in it sitting on my front porch in the evening.

I mourn the loss of the summer light, watching as the geese fly away, the snow swirls, the winter makes everything just a little bit harder. This time of year, as the days lengthen, I find a weight off my shoulders, I become just a bit more open, a bit more uplifted.

I stare out my window, thankful for the colours of a sunrise.

Posted in irrelevant reverence | 2 Comments

Something that it’s Not

There comes this moment, in any relationship where you define what the relationship is, and it isn’t. In romantic sorts of relationships, this is fraught with peril but at least has a somewhat predictable trajectory. At the definition points – are we actually dating and what does that mean – should we formalize this through marriage, some sort of domestic partnership, or are we comfortable with planned ambiguity – you make choices and you have to talk to another person to do this. At least in romantic relationships, there is language and an expectation that you will have these conversations.

I suppose what I’m really saying is that I can point to a conversation where Mr. Spit and I started dating, I can remember the moment where Mr. Spit asked me to marry him, and I can point to the day that I did marry him. I can, for the record, point to times where we have consciously chosen to stay married, in spite of other options.

What of friendships then? I am genuinely curious. Did any of you ever approach a friend and say “I’d like to make you my best friend?” At least in my life, it just sort of happened, and we fell in with each other and rubbed along. In some cases rubbing along turned into friction and the friendship moved in another direction, and in some cases we are still rubbing along. I have a friendship that started off wonderfully, we simply clicked, and now it has turned into a thing of convenience. I have no expectations of them, they are fine with this; but perhaps don’t realize that the result of having no expectations of them is a friend that you can’t rely on. Where you can’t rely on someone, there is no sense of mutuality. Thus while it becomes easier for them because they are free to get in touch or not, say they will do things and not do them, you move them to a level of convenience. “I will talk to you if I feel like it, if I am not busy, if I don’t have something that I want to do more.”

And unlike a romantic relationship, the friendship just moves in that direction. You get hurt, you move the relationship away from being so close to your heart – to a level where you aren’t hurt any more, but you never quite say “here’s what this means. Is this what you want? Because honestly this isn’t what I want and I suspect that in the next six months I will quietly drift away. In the interim, let’s not make this out to be something that it’s not.”

I have a fairly significant set of nieces and nephews – 9 of them- and it’s worth pointing out that most of them – something like 78% of them – aren’t related to me in any way at all. I’ve just kind of found them in various ways, realized that maybe I had something to offer them, and taken them on. There is no formal process for this – there was never a moment where I said “I’d like to adopt you as a niece or nephew, if I may. Here’s what I will do as your aunt: I will feed you and listen to you and offer you care and concern, advice, mostly when you want it and occasionally when you don’t”. No, I just started signing my name as Aunt Cheryl to cards and treating them as a niece or nephew. In some cases they call me Aunt, and in some cases they don’t, and either way is fine.

And then there is friction of a sort, and maybe there’s blame on both sides, and you realize that this kid is family to you, even though you want to strangle them with both hands, you realize that you are invested, and being an Aunt is not a matter of friendship – I owe you my fealty and care even when you don’t want it. Let’s not make this out to be something that it isn’t.

The challenge is, when you say “something that it isn’t”, it seems to be that there are times you need to talk about the semantic meaning of “something” and “isn’t”. Those conversations, I am finding, are not so easy to have.

 

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Winnipeg Whinge

I’m in Winnipeg, which always puts me in a slightly grumpy mood. Yes, yes. We like things about as much as we try and make up our minds to like them, but I just can’t like Winnipeg. Trust me, I’ve really, really tried.

1. They forgot to turn the heat on. It’s -27C with the windchill. I assure you, there is wind.
2. At 1 am I was so cold that I got out of my bed and got into the shower. For 20 minutes until I warmed up.
3. The starbucks tried to poison me with “oatmeal” and an “americano”. For breakfast. Before 8 am.
4. As always, I had to give directions to the cab driver. For those of you who missed it on facebook, the directions include “turn left at the entomology building” and “you can drop me off in front of the dairy science’s building”.
5. What with the cold and the getting out of bed early, I am facing Winnipeg, in all it’s winter glory, on about 5.5 hours of sleep. That’s just not enough.

Posted in Salmagundi: A collection of various things | 2 Comments

Everything to Everyone

In January I did 2 things – I was referred to a rehab clinic for a comprehensive review of MS, how the relapses have affected my ability to function and to get some assistance in coping with the disease. I also, as a result of feeling completely overwhelmed, started seeing a therapist.

Make no mistake, both of these things are wise, valuable and useful things to do.

The net result of both of them has been good, but a bit overwhelming. Everyone has emphasized to me that my days of being a brain, trapped in a body that I ignore are over. MS is, in a grand sort of joke, is the Universe’s way of telling me that I need to be present in my body as well as in my brain. I need to put myself first.

The challenge is how.

I feel like I need a sign – since March I have gotten so much better about eating, about drinking water, about resting. I have cut back at work. Putting in breaks for food, for water, to rest have become part of my life, a habit as it were. I say all of this, because I see that there are fewer days when I forget to eat, many mornings I wake up a few minutes before my alarm clock which tells me I am getting enough sleep.

Everyone – the therapist, the OT, the PT, my doctor, my neurologist, my MS Nurse has an opinion of what I should be doing.

Do yoga! Walk more! Practice motions with your eyes closed! Work on your balance! Eat more protein! Slow down! Have your bath earlier in the evening! Set a reminder on your phone to stand up and stretch! Take your vitamins! Do body scans to be mindful of where you hold tension and then release it! Get a better chair for your office! Plan your schedule!

Listen to your body! Listen to your body! Listen to your body!

Some people in my shoes might have been able to encompass all of these things in a few weeks – but I was starting from ground zero.

Possibly I was starting from 20 feet under ground.

Do you know what happens when I listen to my body?

When I do a body scan, looking for tension, I don’t know if I have found it. I have been clenching my jaw for so long that I don’t know what relaxed feels like. I don’t know what feeling thirsty feels like. I am always a bit tired. I don’t know the language my body speaks and it’s a bit overwhelming trying to talk to it, because in addition to feeling moronic, it turns out that after being ignored for most of 36 years, my body is has a lot to say, and none of it is nice. My body is grumpy, and now that it gets a voice, it is using that voice. Loudly.

Most of the things the professionals are suggesting are not once and done suggestions. They are life style changes. Taking my vitamins requires that I remember to do so, and that means forming a habit. It’s not just forming the habit either. It’s about changing my attitude. I am notorious for looking at things like my lunch sitting on my desk, my vitamins sitting on the counter and thinking “I’ll just do this first”. Then I forget.

It’s not just the habit, it’s the thought pattern. I have to start putting on my own oxygen mask first. I have been conditioned to not do this. To work, to take care of others, to do things around the house. I am geared to judging value by deliverable – what have I got to show for my day?

This is a huge change – massive. It doesn’t come easily. Given that I went to see a therapist because I was overwhelmed, adding in more things to do doesn’t help because I can see how I fail to deliver on them. It’s one more thing to beat myself up over.

I’ve had to start pushing back. Telling people that I am working on it, and I’m seeing progress. It’s not empty words.  I’ve had to start telling people I’m getting there. And it won’t be fast. But it will happen. It will be habit, and it will continue to happen because it’s habit.

In the interim, I took my my vitamin today. I ate my breakfast before 10 am, and my water bottle beside my computer is half empty, so I have had 16 ounces of water.

That’s enough for today.

Posted in Learning Life, MS Gets on Your Nerves | 4 Comments