A few months ago I mentioned how I cried over MS/pickles after the hospital called me to schedule MRI’s. I was sad I was forced to think about pickles, I was anxious about what the results would be, and I wanted to stay in my oblivious bubble. Totally ignoring, or in deep denial about, pickles.

I ended up telling myself I could do the MRI’s and just…not get the results if the results were what I truly feared. I had time to think about what to do. 

Yesterday I got a call from the hospital that the doctor would like to meet me in person to discuss the results of the MRI’s.

For the next couple hours I tried not to think about it. But as I was doing dishes the effort to NOT think about it was too much. I got scared, I got anxious, I got mad, I got sad, I cried, so I went to have a moment in the washroom. I was upset that the date I was supposed to be in Switzerland, living, I would be spending in a doctors office instead. The trip would of been cancelled regardless. But there’s something very upsetting about being some place completely different then what you had hoped. The connection, the metaphor, was blatantly obvious. The disappointment familiar.

I considered calling friends, running into Dean’s arms. But I looked at myself in the mirror instead and told myself what I needed to hear.

I am strong

No matter the outcome, I will continue to live

I will turn the good or bad fortune into something meaningful, something of value

I can handle this

You reach a point where you just can’t bare to hear those two letters anymore. Out loud or in your head. You’re in the middle of writing a phrase and those two letters come up AGAIN and you think “enough, I can’t anymore”, so you try to think of a different word and “pickles” is what comes to mind. For me anyways. Nothing against pickles, I actually really like sweet pickles. It’s just the first word that popped into my head.

I mention this because it’s worked, somewhat. I haven’t thought about pickles in a couple months. I haven’t gotten healthier physically, but mentally I’ve been a stone…no, a flower blooming on a sunny day. A rock sounds too…permanent.
I’ve been a happy flower, painting, writing, working on my book, sketching, planning a trip, researching locations, learning to play ‘fur elise’ on the piano, learning to create PDF’s, and I’m not crying. Until last week.

I got a call from the hospital to schedule 2 MRI’s. That made me think of pickles. And I cried. I don’t want to know how I’m doing drug free. I don’t want to see pictures of my disease. It’s like Schrödinger’s cat. Right now I am both. I am both getting better and getting worst. 50% chance of a healthier life is something I can live with. I cant handle anything less right now.

I don’t want to open the box

Oh my goodness. I cringe every time I see this debate.
Both sides tend to be so…intense in their choice.
I am scared to tell people I vaccinated my children, and that yes, I get the flu vaccine.
There, I’ve said it.

I’ve thought about my decision before making it, I researched both sides, and I kept an open mind. In the end, I felt vaccines were the equivalent to cars. They come with some risk, but they serve a purpose.
Anti-vaccine advocates say that the vaccines do nothing and are dangerous.
And pro-vaccine advocates say they save so many lives.

There is data supporting both sides but neither are absolute truths.

I don’t discriminate if you choose not to vaccinate. Because you just don’t know what will happen. Fear of an adverse reaction is human.
And I don’t discriminate if you do vaccinate because you just don’t know what will happen. Fear of polio and other possibly life threatening disease is human.
We are all humans very much aware of our impending death and trying to make the best decisions based on existing data but having really no proof of what the futur will be.

It has been suggested by hard core anti vaccine advocates on a particular fb page that the flu vaccine could be making my MS worst (or my pickles as I call it now). I have gotten many suggestions on many different subjects actually. But I only started getting the flu vaccine about 10 years after being diagnosed. Since beginning to get the flu vaccine I haven’t gotten the flu, seizures, rashes, or any other adverse reaction. One year I didn’t get the vaccine (I was planning to) and I got the flu. I woke up paralyzed. I couldn’t move my legs at all, and I could barely move my arms. And let’s get into details here. I wet myself on multiple occasions because I was PARALYZED!. It was scary, it was frustrating, it was degrading, and it was very hard looking my young kids in the eyes and telling them everything would be ok. It took me weeks to get better and even longer before I felt strong enough to leave the house. I still feel like I never fully recuperated. And that is my truth. My truth is I exercised on a daily basis, I drank herbal teas and water, I had a good healthy reasonable diet, I only drank alcohol on special occasions, I didn’t do drugs (illegal or pharmaceutical), I was happy, positive. I had a good job, pass-times, friends. And I still got pickles. For all I know I got pickles from riding a camel in the Sahara. This is my truth.

I don’t want to be made to feel guilty for being sick. I did my best, and I continue to do so. I will also continue to get the vaccine because I haven’t gotten the flu since. That is my data, my facts. And for some to think I am making the wrong decision, that I am naive and uninformed is…. hurtful.

20 years ago my neighbors had their son vaccinated when he was a baby and he had a bad reaction. He developed epilepsy and had such severe seizures that it left him with permanent brain damage. That is their truth. They did not have their second son vaccinated and I don’t blame them. That is their data.

We don’t yell at people when they get into a car. Even though we know the risk. Car accidents are very high on the list of causes of death every year. Much higher then vaccine reactions. But people get into cars. They put their children in the car. We don’t yell at them. We understand the need to get from point a to b. And if they do get into an accident we don’t use that as proof that cars don’t work. “see, you got into an accident and didn’t make it to point b, therefore cars don’t work”. Cars don’t always work, vaccines don’t always work. But often they do.

Please don’t judge me for making a decision that wasn’t necessarily easy, but the one I thought was best for my family based on all the data I could find, and trusted.

Lately I’ve been painting at a much slower pace.
I don’t know if it’s intentional, if it’s growth, or simply a result of my health
But ever since being diagnosed with progressive MS I’ve been seeing things differently
Or I’m looking at different things
Either way, I’m different

I take a lot of pictures, I paint, I sketch, I draw, I write, and I think of the people in my life. They give me strength, they give me purpose, they help me keep my head up. I think of you while I paint, I think of you while I struggle to get up, I think of you when I breathe.

I do all of it because it keeps me focused on what I want rather then what I fear

Every word I write on the bare sheets reveals who I am
Every brush stroke I leave behind reveals my mood

But my inspiration and my focus get sidetracked at times
I think “what will people like” rather then “what do I want to paint”
Or I get upset because Deans picture taken with his Iphone will turn out better then mine taken with my fancy SLR. Instead of thinking, that was a peaceful moment.
And I wonder “why do I bother writing when no one is reading” instead of “It felt good to let that out”.

I want to stay focused on the purpose.
The purpose being it keeps me grounded, it keeps me dreaming, it keeps me alive
And when you truly love the act you are doing, you keep doing it
Preferably with some good music in the background

This is a picture I took years ago. In the late 90’s.
After cegep, but before the programming years.
It was a time in my life that felt far too short.
My working at astral photo days. Wonderful days.
I made some really great friends. It was a really good time.
I laughed a lot, I took a lot of pictures, I hiked, I travelled, I danced,
I stayed up late AND got up early ON PURPOSE!!!
And again, so many good friends.
I miss them, I miss creating moments with them, I miss the world of possibilities,
I miss seeing the beginning of the line better then the end, I miss my body, ….

This picture was taken by lac st-louis. In the back of Marguerite-Bourgeois school in Pointe-Claire village. There’s a little spot where you can walk on the rocks. The moment was captured there. I had just gotten some filters for my new Pentax MZ-5 and I was trying them out. I biked there a lot throughout the years.
And now it was just me, my camera, my tripod, some filters, and that place.
It turns out I didn’t like working with filters. I wasn’t a very technical person, I’m still not. To this day I barely have a cell phone. Barely because I have one but it is always off. The battery is probably dead. I’m not even sure where it is. I don’t even know my number. It’s a pay as you go emergency phone I keep (kept?) in the car. It could be in my purse…which I haven’t been using either. I just stick my wallet in my jacket pocket. I like simple. I like minimalism. Point is, filters weren’t worth the effort. I prefer to just hold the camera up to my eye, click and hope it turns out. Hope, what a wonderful feeling. I’m simple. And what I lack in technical knowledge, I like to think I make up for in creativity. Same goes for many aspects of my life.

This picture is ok, but the memories from that time are …. sublime

A great example of a negative also being a positive

Of the good old days
The paradox of wanting to go back, and also wanting to go forward.

My new used camera came in 🙂

Some people make New Years resolutions
Some think it’s silly
Me, I can’t help but envision things I hope to accomplish hopefully in the next year
I think of it as a fresh start, a starting line
If your on a path and you think you’re on the wrong one
Now might be a good time to switch lanes
And if you’re on the right path, it’s a good time to pat yourself on the back
It’s a time where we reflect on our lives
What’s happened, where we’re heading
Where we would like to go

So to those who make resolutions
And to those who don’t
Now is just as good as any other time, to dream
To make a change, to make a difference, to vow,
To quit or start something, and to reflect

Happy introspection everyone
And hopefully a happy year

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.