A small look into my pilgrimage-ish. And my trip to Cape Breton

After receiving what I believed were signs, I spent the next few months finishing up my book, finishing up paintings, putting my things in order, and planning a trip to the east (my east – Cape Breton NS and Bathurst NB). Focusing on these things kept my spirits up (mostly).

Part 1 , Part 2 , Part 3

I’ve been trying to write about what the last 2 years have been like for me. And what better way to do so then to going back in time to hear my original words.

In October of 2021, I spoke out loud about needing something to look forward to, and later that same day I received a message that gave me exactly that. This is when (for me) the signs started to fit together and my spiritual pilgrimage-like mentally challenging journey began.

Compared to previously, I haven’t been posting much. I write occasionally but nothing feels complete. My thoughts and writings are mere beginnings and then fade. I haven’t been posting on Instagram much, I’ve dropped Facebook, and I my videos are further apart. It all feels a little pointless, a little redundant, and perhaps too dark to share. I am not in a constant slum, but when I am I find comfort in talking to the camera or writing my thoughts down. So for anyone wondering where I’ve been, how I’m doing (at times), here is a short video from early September that I finally got around to editing (I’ve been busy painting).

The music is Bolero by Ravel. I remember listening to this record with my dad when I was a child. Him, sitting on the couch reading. Me, lying on the floor coloring.

I have been inspired by the light among the darkness. By moonlight. By the last bit of light before the sun sets completely. A light I can look into without being blinded. It lures me in, it eases my mind, it puts my fears to rest as life becomes less focused, less … illuminated

I havent been writing much lately. But I have been recording my thoughts on video.

I have multiple sclerosis (MS). MS is a disease where your immune system attacks your central nervous system. And in 2018 my diagnosis became SPMS (Secondary progressive MS). As the name suggest, it is a more progressive form of MS. 

There is no cure. My body will most probably continue to deteriorate. In the last 4 years I have lost my ability to walk. About 2 years ago my arms started to weaken. Besides general weakness throughout my entire body, I also have tremors, stiffness, spasticity, depression, nausea, short term memory loss, dizziness, my hands feel like I have tendonitis (even thou I don’t), I have extreme fatigue, difficulty focusing, numbness, and pain throughout. Fortunately I have been spared the loss of vision (a common symptom).

I can still eat, although due to the nausea I have lost my appetite and only eat snacks here and there. I have on occasion choked on my food (another symptom), but this happens rarely. I have a hard time with household chores like cooking, dishes, laundry. And with personal care like washing and brushing my hair, and getting dressed (no more buttons). I still paint but it is proving to be difficult and I require many breaks. I’m having a hard time holding my camera to my eye. This, I imagine, will break me.

I’ve taken many medications, I’ve tried many diets, and many different types of treatments. Modern, holistic, name it. Yet no treatment has proven to work with me. So now I take medication for the multitude of symptoms and the MS continues to progress. 

So for my own sanity, for my own peace of mind, I am letting go and trying to accept this. For years my focus has been on trying to control the illness, and now I accept that “shit happens”. And I stay focused on the things that bring me joy. My days are quiet and I am ok with this, and I’m also not ok. 

From years apart, to months apart, to weeks apart, ... I have felt worst.
Some days are better, but most days I'm worst.

I'm exhausted, I'm nauseous, 
I have pain and numbness in my limbs,
I have a pain in my stomach,
I can't sit for too long (hold myself up),
I have a hard time staying focused. 
My arms are weakening.
Daily tasks are harder and harder to accomplish (some now impossible)
Sometimes I can't get out of (or into) my bed.
I can no longer walk.
I have lost my appetite.
And I see a light up ahead, at about a 45 degree angle