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

F-U SPMS. F-U COVID. And F-U freezing cold.
“Ain’t no power in the verse gonna stop me.”

Has lost meaning these days.
Most of the time I don't know what day it is, nor the time.
It is of no consequence to me.
I eat when I am hungry, I sleep when I am tired, 
and I do things I love in between.
Sometimes I'll "do my duty" and tell the kids to do their homework
and they reply "but it's Saturday?", and I laugh.

I try very hard to focus on the positive, 
on what I still have, what I can still do, 
and what I've accomplished.
I carry with me memories, the good and the bad.
The lessons learnt give me strength as I embark on this new path. 
A path less travelled and meaningful in its own way . 
And I become much stronger the weaker I get.

The signs
The dates 
The numbers
The visions
The moments that made me hesitate 
The colors
The words I've heard myself say
the prophet, the Alchemist, the elements,
the desire to feel wind on my skin, to be weightless, the urge to fly,
The picture I picked up.
The woman at the top of the hill, seeing my reflection.
The call from the east, 

It all says,
Take a leap of faith

To paint
To hike
To walk
To read
To write
To try new foods
To take pictures
To carry equipment
To make my own path
Trees
Sky
Clouds
Sun
Light
Shades 
Colors
The earth under my feet
Fresh air in my lungs
Having water around my waist
Warmth on my chest
and sun on my face

If I can't BE one of the elements, 
then ... 
I will connect with them more
I will quench my thirst with water,
I will fill my lungs with air,
And I will feel the weight of the earth as I sink into it