It feels like my time has come and gone. I wish I would of done more but I think I did lots. Perhaps not as driven as others, perhaps more so then some. I’ve made a few mistakes but I like to think they weren’t wasted moments if something was learnt from the struggles, the falls and the failures.

I don’t think I’m COMPLETELY done, I’m not dead. I have a few projects in the works. But my best days, my health, my adventures, they are dwindling. I no longer walk, I no longer drive, and with my arms weakening (not to mention all my other symptoms) my ability to do chores and hobbies are close to an end as well.

During the months of quarantine I began painting again after having stoped a few months earlier. I’m not sure why I started again, probably to “stick it to MS”. But I’m glad I did because it has reassured me that I made the right decision to stop.

This hobby, this passion now feels forced. I still love the arts and I have a desire to create but painting has simply become too strenuous, mentally and physically, to enjoy. For every few minutes of painting, I need days to recover. I’ve said good bye to many things throughout the progression of this disease, and painting is one of those things. And I’m ok with it.

These final 3 paintings portray the darkness taking over the light, but also the light in the darkness. They are the light at the end of the road. They are the landscape in my head.

To some it might sound like weakness, like I’m giving up. But the amount of strength it takes to come to a point of acceptance is more then most will ever understand. I am ok with closing this chapter, and that’s a good thing. I have plenty of other things to agonize over anyways. 

I tried to work on a (probably fantasy) trip across Europe. But as I worked on this trip I could feel the fire, the desire to explore, diminish. I mainly want to sit back, watch sunsets and feel the breeze on my skin. Other then that I don’t have many wants anymore. I’m not sure if this is a good thing. Having something to thrive for and to have goals is important. But so is being happy, or at the very least content with where you are is important as well. It has taken me a long time to get to this place in my head. I can not be constantly confronted by obstacle I can’t overcome, It is simply too much to bare. In order to stay strong and be at peace I need to let go of the person I was and the person I wanted to be. Perhaps, in the end, the person I have become is stronger then the one I had envisioned. 

This picture was taken from the pointe-claire dock behind the Marguerite Bourgeois elementary school. I went to that school for 5th and 6th grade and while in 6th grade my father passed away from pancreatic cancer. The church the ceremony was held at is right next to that building. I often went back to this spot to look out at where I said good bye to his physical body and presence. This place holds a special, spiritual, yet difficult place in my heart. This is where I lost any connection I had to the church. I was never very religious but it was during this time that I realized that the idea of god and the stories I grew up with brought me no comfort. They just didn’t.

I’m more agnostic then atheist. Being asked if I believe in god is a tricky question. If there was one definition it would be easier to answer. As Jeff Winger once said in the TV show Community: “To me, religion is like Paul Rudd. I see the appeal, and I would never take it away from anyone. But I also would never stand in line for it.”. My spiritual journey took a different path after this moment, in this place. I started to feel more connected to elements, to memories, and to the randomness of life. What brought me comfort was the idea that my father was in my soul and heart rather then the idea that he was with god (whatever she/he may be).

I know that talking about religion can be a touchy subject, it is not my intention to offend anyone. I simply wanted to share a part of myself. I have been searching for peace of mind through this pandemic and mostly through my struggle with PPMS and I am often brought back to this moment. I have also found solace in the Buddhist speech Chidi gives in the series finale of ‘The Good Place’. If you haven’t watched that show YOU SHOULD. Best.Ending.EVER! (And this comes from a die hard Buffy fan.). If you don’t plan on watching the show, at least watch the ending…

https://youtu.be/n8eYcMHzqFs

I think of myself as a character. Some stories revolve around me, some I participate in, some I am but a cameo, some I am merely mentioned, and in most I don’t appear at all. 

If I feel left out then I am simply not part of this story, this moment.
I’m already in a another story anyways .

I am exhausted and I need to rest. I can feel my body and mind giving in, so I’m giving myself the same advice I would give someone else. Rest.
Rest your body and rest your mind.

Rest.
It’s so easy yet I can not. I feel guilt, weakness and disappointment.
I already do so little, how could doing less be the answer.

I cooked “a lot” last week (I.e. I made about 3 meals).
I walked lots (I.e. I dragged my legs while holding on to walls as I moved from one seat to another.
I painted. (In 10 minute intervals, days apart at times).
I took the dog for a stroll 4 to 5 times a day (in 10 minute intervals).
I played outside with the dog, got lots of sun. (Too much).
I gardened at least once a day. (In 10 minutes intervals).
I did 3 loads of laundry. I changed my bed sheets, and I folded clothes.
I cleaned up my studio (a little).
I stood and did dishes a couple times.
I felt good, productive.

But after all that, after ONLY that. I am exhausted.
I feel physically ill and I want to throw up.
Yesterday I stayed in bed almost all day, too ill to move. 
And today I managed to get up! but I didn’t go out.
It’s hard not to go out on such a beautiful day. We have so few of those.
But my body was aching for rest; so I listened and stayed in.
I know with rest I will feel better….not great but better.

Now if I could just rest my mind. 
It is hard coming to peace with failing so much, and so many.

At the beginning of this pandemic I felt somewhat aloof.
I had just returned from a spectacular trip to Costa Rica.
And I was at peace with the idea of this, perhaps, being my last trip.
I had plenty of photographs to play with.
I had mourned the changes in my life and I was finally beginning to accept my health, my probable fate, and my lack of control. 
The fear, the anxiety, the anger and sadness had began to fade. 
And when the confinement began, people slowed down and I started to catch up.
It was the first time in a long time, 
that my disease wasn't stoping me from going out.
I didn't feel guilty for being distant, for being too tired. I could not let anyone down.
I wasn't retreating and MS wasn't weighting me down. 
I was simply ... under quarantine. Like everyone else.


I want to make it clear, I don't like covid19.
I care about our nurses and doctors, and the people at the store. 
I care about the elderly and the people at higher risk.
I don't like that people are dying and that people are sick.
I don't like that people are losing their jobs, their business, their savings.
I don't like the effect the quarantine is having on morale.
I worry for our children's future, and I'm scared I could lose someone I love.
I don't like that we, as a community, are depressed, anxious, and angry. 
I see it online, in the news, on the faces of the people I see and in the conversations I have. People are scared.
The anxiety in the air is palpable. 
The fear, as well as the disease, is spreading. 


I could empathize because I have been carrying all these emotions for years. 
I've lived through it. Through the shock that life as you know it, is forever changed.
Through the fear of not knowing, and knowing all too well, what the future holds. 
I have been swimming upstream for years, trying to escape this nightmare.
But now I just want to lay back and see where the current takes me.
Progressive MS is like a boxing match with no referee.
I am exhausted and completely drained emotionally and physically.
I don't want to fight anymore but the punches keep coming.
The amount of strength it takes me to get up is staggering (especially when I know another punch is coming).
So for now, I'm just going to stay down and take a beating.


I still feel somewhat disconnect and aloof about the pandemic.
I simply do not have the energy to be angry about it.
I will embrace the relief confinement has brought me.
I will focus on the light rather then the dark.
I will rest while I'm down so that WHEN I get back up, 
I can steady myself for the next blow.