It was good, and it was bad
It was hard, it was inspired, it was memorable
I had a depression, my neurologist moved away,
I got worst, I got a new (worst) diagnosis,
I stoped my MS medication,
I sold my bike,

but

I found my old camera,
I took a trip, I took pictures, I painted like it was survival,
I had an art show of sorts,
I wrote, I started a (this) blog
I opened myself up, I bled onto pages, and shed tears on canvases,
I found the middle ground on multiple occasions,
I kept my head up,
I reconnected with old friends, and made new ones,

I fell and I got back up

IBTSATS

I’ve been depressed and sad and angry and lost and I’m sorry to all who have been affected. I still have some lingering feelings and resentment towards MS. I don’t think I will ever fully accept it. I don’t think I should. But now I need to focus on the life and the relationships I want, and on love.

I’ve used this analogy before and I will do it again, one last time.
MS is like being at the beach, in a deep ditch, sand is piling in, and I can’t climb out. My friends and family are on the beach having fun (I think, honestly I’m too busy digging to notice what is going on around me), I would love to take a break, to enjoy the moment, but I fear that if I stop digging the sand will get too high for me to be able to dig myself out. Occasionally someone will throw me some tool or some advice. But none of them stop the sand from pilling in, or can help me get out. So I shovel, and I shovel, and I shovel using whatever tools I can.

If I stop digging I could suffocate, but if I spend all my time digging, I might as well suffocate.

Life use to be about survival of the fittest, so simple. I wanted to be the fittest, I use to feel that way. But I am not. It would be easy to stop digging, To let the sand swallow me whole. But I’m doing what I can to, maybe not be the fittest among humans, but at least the fittest I can be.

For some dumb reason I’ve always thought it was one or the other. Dig, or sit and watch life. I can’t stop digging, but I’m changing the speed and angle at which I’m doing it. So I can enjoy life. So I can watch from time to time. To enjoy life as I dig. The middle ground.

I’m sorry I haven’t been myself. I’m sorry I’ve been angry, and resentful. I’m saying this to my friends and family but mostly to myself. I have been very very down on myself. Worse then anyone else. So please no more tools, unless it’s a ladder, or a ball I could throw back, or paint supply (best.medicine.ever.)

I, like most, don’t open up to many people,
In person anyways.
I tend to be quite reserved and shy and as emotionless as possible
But every once in a while I laugh out loud uncontrollably
And on the rare occasion,
I’ll have a good talk and a good cry with a good friend.
They both make the body and soul feel so much better
And nothing says « it’s going to be ok » like a big bear hug

I am trying to do those things more often.
And If anything, just more good times with good friends.

So in conclusion….
Sorry, thank you, and I love you.

My love of photography started before the digital age. I had my dads old manual 35mm SLR and you only had 24 or 36 shots per film and you didn’t know how they were going to turn out till you developed the film. Back in that time you were more careful about each shot, and you didn’t do too many “selfies” because you couldn’t adjust the focus from in front of the camera. I typically did my “selfies” in front of a mirror.

The habit continued for me, although I eventually upgraded to digital, I remained behind the lens.

I started to notice that there were barely any pictures of me. I wanted proof I existed, or at least proof that I was part of a moment. One picture that stood out for me where I felt forgotten is in an old picture from high school. The picture is of my “gang” but I’m not in the picture because I was taking it.

I wondered if anyone noticed I was missing from the picture, from that moment. There was no mention of me. But I WAS there, sitting across from them like I did everyday for lunch. I didn’t want to be forgotten.

Then one day while playing Legos with my son I built a Lego version of myself and him just for fun. And right then I had the idea of Lego me.

A long time ago I was on assignment for a weather channel and a small crew and I were flying over the ocean in a helicopter.
The shore wasn’t too far away. I could easily see beach goers and the cityscape. That’s what I was looking at when the helicopter made a big thump noise and started going all over the place. I remember trying to focus but the helicopter was spinning in circles and all I could hear is the pilot yelling “we’re going down!”. I’m not sure what happened next, if I was thrown or pushed from the helicopter. I remember seeing the water and then being IN the water. And in my state of shock, not being able to feel my legs, seeing blood in the water, being pushed to shore by waves, hearing people yelling, being put in the back of an ambulance, being told by the doctors that it would be a long hard road before I could walk again, I thought, at least I wasn’t eaten by a shark.

That is one of the stories me and Audrey have come up with to tell people when they ask us what’s wrong with me. There’s also another one where my parachute didn’t open while skydiving and I used my sweater as a semi parachute to slow down my fall. Crazy stupid stories we laugh about.

Why? Because a little while ago I had a heart to heart with Audrey after noticing that she also got asks a lot “what’s wrong with your mom?”. I knew I got asked all the time but I didn’t realize she did too. I saw it when we were at the park, when I went to her school, I overheard it when I was on the other side of the street and she was crossing with the crossing guard. I saw her put her head down and shrug it off every time. My heart broke a little.

Does she hate her mom getting all the attention, especially for something I don’t want to get attention for. Is she sick of answering that question. Does she hate people thinking there’s something wrong with me. Does she feel bad for me. Or is she just over it all.

It was all of the above. As my heart was breaking for her, hers was breaking for me. So after a long hug, some tears, and knowing full well this is probably something we will always have to live with, we came up with a plan. Many plans actually, and many stories for different scenarios.

1. “What happened?”
Assume they aren’t asking about the wheelchair but rather accomplishments .
Me: “my daughter got above average grades in all subjects, I’m very proud. She’s also a kick ass soccer player and won her last match!”
Audrey: “my mom is a great artist. She had a show this summer and sold a bunch of stuff”

2. “Were you (Was your mom) in an accident?”
“Yes, I (she) was in a car accident as a child. A 6 or 7 car pile up on the highway”.
Which is true BUT has absolutely nothing to do with me being in a wheelchair. Everyone walked away unscathed by that accident. I’m not even sure it made the news.
Or “Yeah, I (she) was thrown from a horse while on vacation in Tucson” (again true but aside from bruises and a slight concussion I was fine. A little pissed the horse never checked on me but fine)
Or simply say “no?”.

3. “Why are you (is your mom) in a wheelchair?”
“Because I (she) need(s) it to get around” … duh
Or
“Want to hear this crazy story?”

It seems simple enough but when being asked it’s not so simple.
You know dam well what and why they’re asking. The truth is always the first instinct. Julien makes it look so easy. His trick is to (almost) never answer anybody when they talk to him …. about anything, and he doesn’t care. His aloofness is frustrating and aspiring all at once. Audrey typically changes the subject. While I take a deep breath, and hesitantly tell them I have MS

I have a fear of sharks, a very real deep fear of sharks. Now before anybody tells me the stats…I KNOW!

1. Way more sharks get murdered by humans then humans get killed by sharks.
That IS terrible. I do NOT promote killing sharks. I have never killed a shark, nor do I want to. The only time I would attack one is if I somehow found  myself in a fist fight with one. I wouldn’t even eat a shark (for fear that other sharks could sense it and come after me). Not because I have a fear of sharks that it means I want them to die. They have the ocean, I have land. I happily succumb to that deal. I will leave them be as long as they let me be. If one rings my doorbell, then I can not promise violence will not ensue

2. Sharks have no interest in humans as food, they think were seals or something.
Who the fuck cares what the intent was. If I’m getting eaten by a shark I’m pretty sure I wont be thinking “I’m cool with this, because he thinks I’m a seal”. And who is the person reading their minds anyways. Maybe they do like humans as food. Maybe they aren’t picky and they just take what they can get. I don’t care! I am 100% anti getting eaten by a shark. INTENT IS IRRELEVANT!!!

3. Getting attacked by a shark is like super rare.
So? You know what else is rare, LIKING IT! Or even surviving it. Frequency, just like intent, is irrelevant

So to Audrey, no we aren’t going on a cruise. Ever.
It’s super expensive, I really don’t want to, MOTION SICKNESS, and most importantly I made a deal with sharks to stay out of their territory.

Yesterday, as I was putting final touches to a painting
This tiny fly, perhaps a fruit fly, started flying around the painting

I thought to myself
“go away fly, I don’t feel like preserving your entity for life in my painting,
I don’t even know you man!”

Then I felt instantly bad. Why was my painting more important then proof of his existence. If anything it would make it more special!
So I said “go ahead fly, I would be happy to have you in my painting”
Then he flew away. I felt dissed for a second but quickly figured the oil probably smelt horrible to him, and that it would end up killing the little guy anyways.
And … he’s a fly …. I’m over thinking this, he doesn’t care

Then I sat down,
And he flew onto me 🙂

I worked on this painting for a few weeks. It started off based on a picture I took while we were on vacation in Bathurst. While I was painting this I thought a lot about the women in my husbands family who visited us while we were there. I’m not sure my painting style is their style, but I still want to give it to them. Starting with Judy, who should then give it to Natalie, then to Katrine, then to Cindy, and then for Abigail. I’ve never had the pleasure of meeting Abigail, but if she’s anything like the other women/girls in that family then she must be awesome.

https://youtu.be/SrncT394TNU

https://youtu.be/IeDDS3bGf0Y

https://youtu.be/oXvuI0lfL3Q

https://youtu.be/WArPReto59g

https://youtu.be/f2Xvts18ex8

https://youtu.be/2jUCZbi4FIM

I hesitate posting this because most days I’m fine (mentally)

but every now and then blissful ignorance is harder to achieve

Everyday I wake up feeling a little sicker
A little older
A little more worn out
I don’t remember feeling rested

MS is slowly suffocating me
I didn’t feel it as much in the beginning
It’s been so gradual
But I’m starting to notice now
That I’m running out of air