I feel on the edge of complete happiness and utter despair.

find a place with a great view, and the rest will fall into place

My personality, my desires, my hopes, and my fears … they’ve changed throughout the years. The things I regret, the things that make me smile, the foods I like, the music I listen to, my color preferences, my favorite sweater, my wardrobe, my hair color and length, my favourite video game console, the game I’m playing, the kind of movie I want to watch, the camera I use, my health!, countless things have changed. Some more then once. And in the end I am not who I was, but I am still a compilation of all I have done.

In my late teens and early twenties I was barely home. I went to parties, celebrations, gatherings, concerts, raves, dance clubs, bars, pool halls, I rarely stood still. In my twenties the partying died down. I entertained more, smaller gatherings and dinner parties, way less drinking, more good laughs spent with good friends. In my 30’s my life revolved mostly around being a mom but I still entertained. A couple gatherings a year but nothing too crazy. And now in my 40’s I rarely see anyone. I’ll chat with my good friends from time to time, and the neighbors I run into on the street. I’ve tried to accomplish as many bucket list items as I could. But now, my time is mostly quiet and slow. And that’s ok with me. I am tired.

In the last few years, as my health declined, I have tried to make the few moments I share, more meaningful. I heard about a movie called “my dinner with Andre”, I’ve never seen this movie but heard that the entire movie is a conversation. A meaningful conversation. And although I don’t know what that was like in dinner with Andre, I have tried to have my own meaningful conversations these past few years. My own dinners with Andre if you will. We may have travelled together, shared a joint or a drink, or perhaps (just like Andre) had dinner. Whatever the event, I hope it was meaningful in some way.

I’ve come to terms with my conundrum and I feel proud that I took advantage of my time, of my health. I have soared, leaped, felt the wind in my hair, I’ve run, hiked, and traversed many different lands. I’ve often laughed so hard my jaw hurt, I couldn’t catch my breath, and tears fell from eyes (I have wrinkles on my face that prove this).

I’ve tried many kinds of foods, I’ve danced all night, played in the rain, thrown snowballs and ducked behind cars. I’ve sat around bond fires roasting marshmallows and drinking beer, I’ve seen night skies filled with stars, I’ve seen the grand canyon, the Pacific Ocean, the Atlantic, I’ve driven across North America, I’ve ridden a camel in the Sahara, I’ve slept on the Amazon floor, I’ve seen wild animals roam the Serengeti, I’ve had hot chocolate and croissants in Paris, I’ve partied with the band at a bar, played pool with the lead guitarist, I’ve been on the back of a motorcycle, I’ve ridden in a limo, I helped a complete stranger spend his lottery winnings (SHOTS!), I’ve made the best of friends, I’ve celebrated many New Years, Christmases, Easters, Valentines, birthdays, and so many freaken Friday nights. I’ve had kids, I fell in love and got married. I painted and even managed to sell some pieces. I’ve taken enough photographs to fill many books. I’ve written enough to complete a novel and I’ve watched thousands of sunsets, some in absolutely breathtaking places.

I feel so fortunate to have had so many wonderful moments and I hope there’s plenty more to come. I’d love to see my kids graduate, to watch them search for their passions, to follow their dreams, succeed in their quests, and define themselves in the process. But if there isn’t much more … I didn’t do so bad. I feel ok slowing down, it feels good, it feels right. I am just so tired. And what can I say, I’ve changed.

The signs I’ve gotten in the past few years, weeks, days, seem to have pointed to me focusing on the now. I have on many occasions done just that, or at the very least on ‘the very soon’. (Like when planning a trip). But I still find myself thinking of the future or the past from time to time. Both bringing me heartache. Fearing who I will become and mourning who I use to be. I must remind myself to focus on the now. 

Now.

Closing my studio doors and announcing I am done with that was probably premature. I may not want to open my studio doors NOW, but I shouldn’t make assumptions about what the future holds. 

NOW I want to take advantage of the confinement this pandemic has created and focus on enjoying the quiet, the slower pace. Perhaps one day I will want to speed up, but NOW I want to slow down and retreat. Now is the perfect time to do so.

And NOW, I want to go get high and work on my book.

….

When I was a kid I didn’t plan much in advance. It was basically a day by day frame of mind. As I got older my plans were pushed back days, weeks, months, and years. I saved for the future, for trips, and the unknown. I tried to imagine where I would live, who I would be, and would I marry?
After I had children my plans became decades away, my plans became my children’s plans and far in the distance some wonder of what will become of me. The day to day spontaneity became less and less.

But since this pandemic has hit, since I came back from Costa Rica, and since my health has deteriorated; my plans, although fewer and much quieter, have returned to being nearer and sooner.
For many this pandemic is a huge Boulder in their life plans.
But for me, it’s exactly what I needed.

I am back at our cottage.  This time I plan on spending 2 weeks here, all by my lonesome. I feel somewhat guilty that I wish to be by myself when so many others are sick of the confinement. I feel guilty for wanting this time for myself, I don’t want to alienate anyone. I just need to decompress, I need some time away from the responsibilities I can no longer undertake and the guilt I feel. I need a couple weeks away from the same walls. I need some time to think of my hopes for the future, to find some strength, to take advantage of what little independence remains, to unplug from the media and the anxiety around and within concerning the pandemic, and I need to know my family is ok without me. 

This time around I brought all my camera gear in case I decide to take pictures of the cottage so we can finally put it on Airbnb, I brought a book I started to read months ago and keep meaning to finish, I brought my wheelchair charger so I won’t have to crawl around, I brought all my meds, I’ve got my keyboard so I can write, and most importantly I’ve got lots of pyjamas so I can rest, rest, and rest some more.  

So you may see lots of posts in the next couple weeks, or none at all. Who knows. But hopefully at the end of this, I will feel rested.

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.