I haven’t been writing much lately, or painting, or drawing, or taking pictures, or doing much of anything really. Nothing purposeful. I haven’t been doing well and I’ve just been distracting myself with video games and movies. It works until it doesn’t.

With the state of the world these days, the pandemic, racisms, sexisms, fires, a declining economy, pollution, global warming, wars, rape, poverty. My issues barely seem of importance. Yet I am the lead character in my story and my story is one of struggle right now. I try very hard not to think about MS. I am so sick of it, and talking about it. And I imagine reading about it gets tiresome and repetitive. And if it’s annoying for others, imagine how annoying it is for me. EVERY.GOD.DAM day – without fail: I am sick. This disease is relentless and persistent.

I struggle to get up in the morning, to make it to the bathroom in time, to get dressed, brush my hair, open my pill bottles, feed myself, cook meals and clean up. Feels like everything I do is met with adversity. My cup is overflowing and I am unable to handle any crisis of any size. My children and my husband need me, and all I can do is rest. If that. At my doctors appointment last week I told him about how sometimes I can’t catch my breath, I feel like I can’t breathe. It hurts my lungs to laugh. His response was to ask me if I’ve also started having difficulty eating and speaking yet. I said no and he simply increase some of my meds. My concerns were nothing he hasn’t heard before. My life crumbling is just another day. I can still speak but…I don’t really want to anymore… I am numb, all over. I am vanishing, I am nothing but an empty vessel.

I long for simplicity. Back in the day I would of died of starvation for my inability to harvest or hunt. I would of died from the elements, unable to build or find shelter. I would of gotten eaten by a wild animal, unable to run, climb, or hide. And that would of been the end of it. Guilt free, passed on, its not my fault. But now, with modern technology I can order food with the click of a finger from the comfort of my home. I can get help with almost anything. There’s no need for me to do anything except keep breathing, be grateful, and put on a happy face. And I can barely manage those simple tasks. I feel guilt for not being a better more helpful happy wife and mother, for not being a better dog owner, for not being a more present friend, for not contributing more to society. I long for purpose, for an escape, to be myself as I was. I cant exist solely to breathe, to listen and put on a happy face. 

I am in a dark place. Again.

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.