I wrote

I wrote,
And I feel better now.

The tears have stopped, the wounds are healing, and the pain is fading.
I can dream again.

I will be tested once more, hopefully not too soon,
and I will handle it then too…

F-U MS, this girl isn’t going down without a fight
πŸ’ͺπŸ₯Š

Cape Breton

I like to take pictures, to process my surroundings, to find a remote area and connect with the earth while leaving nothing behind but footprints that will disappear with time.
And I am grateful that, throughout the years, I’ve had the opportunity to roam many beaches and deserts. I have felt grounded and levelled as my feet have sank into the sand and I found balance.

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But on this trip, on this bucket list item that was meant to distract me from my new reality, I was restrained, disconnected from my surroundings, and constantly confronted by my disability.

I went to the beach with my family, and I felt the sun and sand on my skin.
I was somewhere breathtaking that many will never see, and I am very grateful for this.
But I had to be carried, and when I couldn’t be carried anymore I crawled.
And as I crawled, I dug my fingers into the sand, and I cried.
I cried from joy, from pain, from sorrow and from fear.
I cried from comfort in connecting with the ground,
I cried from mental and physical exhaustion,
and I cried from grief.

 

Over the years I have found joy in watching my loved ones enjoy the things I once enjoyed. But as my participation and presence diminish, as I stay behind and the sideline gets further away, as my body decays, as I struggle and as I disappear;
I long to see. To be. To feel alive.

On this trip I left trails where I crawled, tears where I cried, I let myself fall off a ledge, I slid down a hill, I bled, I bruised, I fell, and every time I found a way to get back up. I tortured myself to follow, I felt guilty for holding people back, for needing to be picked up, and for needing to be held steady. My family says they don’t mind, but I do.
I feel my path coming to an impasse, Β that time is limited, and I’m frightened to tears by the thought of what is to come.

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But other then that it was lovely….

 

High in Cape Breton

Adapting isn’t always easy, we get set in our ways.
We are comfortable in the predictable, the known, the routine.
But it is possible, especially in this place, to adapt

This life and this place are different then what I’ve grown accustomed to.
I wake up at 5am when the sun beams down on me,
and as it rises I slowly fall back asleep.
I eat when hungry.
I take pictures.
I watch the sunset, and in some cases light turn to dark.
I get high, and I smile.
Comfortable with accomplishing so little yet so much more then usual.

Adapting to my normal life is difficult.
The typical, the expected, the superficial.
The pace of my friends and family, they are miles ahead and apart.
It is difficult not being able to keep up, feeling I should.
The overwhelming responsibilities.
The reminders of my limitations.
Going days without picking up my camera or a paint brush.
Searching for order in the chaos, for purpose in my existence,
and for light in the dark.
I love my life, but it is clear that it has surpassed me.

As I sit here, wind in my hair, listening to the waves
and surrounded by greenery; I know this is not my home, but
I feel grounded and part of the elements.
I have found my pace and I hope I can carry it home with me.

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Now or never

I don’t know how much time I have left
To walk, to move, to travel, to live, to teach my kids.
No one knows, not really
A friend of mine’s husband died suddenly a couple months after they had a baby,
My father had a backache that turned out to be pancreatic cancer, and died less then a year later.
You just never know.

But I’m sick, and chances are I will be bedridden in a few years,
I hope not, but it’s very possible.
So I’ve been trying to do as much as I can
Because it might just be now…or never

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