I am sick. I feel the weight of the disease more and more everyday. The weight of fighting for years. My body hurts and is suffocating. I am exhausted, and scared. And unfortunately I am very aware that I exist in a body that is wilting at a much quicker pace. Or so it feels. And mostly, that I am mortal. I am in a full blown mid life crisis. (Honestly, I feel like it’s 4/5 life crisis.)

It doesn’t help that I’m 42, the age my father was when he died, and my daughter is 11, the age I was when he passed. He’s been gone 31 years and I finally know just how young he was, how scared he must have been, how powerless he must have felt in his final days.

When my father passed, I thought it made me an expert in life and death. It didn’t. It made me an expert in loss, and in grief. Now I think of death much differently. MS is not a death sentence, but it sure feels like the person I was disappeared. 

Adjusting to MS has been difficult. Figuring out what to do for menial tasks that have become very hard to accomplish has been overwhelming and a pain in the ass.

I try to stay positive, to “will my body” to move, to fight, to be better but it doesn’t work. 

I am not an ideal spokesperson to look upon on how to handle or accept the changes disability comes with. I think MS sucks, it blows, it blows real hard. 

I have closed myself off more and more as I wilt. Wanting to be remembered as I was. Independent, self reliant, vibrant, adventurous, a real fire cracker ;). And as a result I avoid situations where I could be “found out”, It isn’t healthy.

But in some aspects, I’m ok. I’m doing good.

I realize the best way for me to “survive” is to create memories, memories that give my kids strength, memories that will last long after I am gone. I will take advantage of my time, and hopefully I have lots of it. 

For instance, 

I spent the winter months, the months I can barely go out, painting. I painted and I forgot where I was. It was distracting, defining, and simply awesome. 

It was one of the best winters I’ve had in a long time. The pieces are close to my heart, revealing, and inspired by life.

And since the snow has melted, and the weather warmed up. I have enjoyed the outdoors as much as I can.

On too hot days I wait for evenings, light breezes, and shade

I’ve stared at the sky, at the clouds, the birds, the moon, the stars, and the colors

I saw a shooting star and fireflies

I saw the day, and the night

The sun and the rain

I crossed the land and the sea,

I listen to kids playing, birds chirping, and all the sounds of nature

And I took pictures, lots and lots of pictures

It has been refreshing, peaceful, and another opportunity to define myself

I’m ok~ish

 

This disease has changed me. 

I should of felt more relief Monday when the doctor said the results were normal, they were “what you would expect”. That the prognosis was “good” since it doesn’t seem like the disease is progressing quicker since stopping the meds. That’s good right? But the disease is still there, and still progressing. So it’s bad. I don’t know how to feel. After my doctors appointment I felt numb. No sadness, no anger, no joy, no passion, no relief, no grief. Just nothing. I felt empty.

How is a spinal cord filled with lesions “what you would expect”?

I wanted improvement. 

I use to dream of the things I was going to do.

Now every dream has barriers and hurdles and I constantly struggle to reach where I want to go. Now I have nightmares.

My normal was independence. My normal was walking, hiking, biking, for miles and miles . I use to take ‘the road less travelled” as often as possible. I parked far and enjoyed the walk. I climbed, I lead, I wanted to surpass expectations, be in front of the line, I wanted to be challenged, to feel pride in my actions, in my abilities, in my strength. I carried many boxes up many flights of stairs, I’ve trekked over logs, hopped over obstacles, I’ve swam through rapids, I’ve climbed mountains, I’ve crossed narrow bridges by slowly putting one foot in front of the other. I miss doing these things literally 

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 🙂