I haven’t been hiding out, I just haven’t put much effort to be seen.
I have been distracted (to say the least) by the decline of my health over the past year.

Simple tasks (like brushing my hair) are becoming harder to accomplish, heat is suffocating, and the constant exhaustion is debilitating. I have been relying on my wheelchair to get around and have been limited to how far it can go.
I am retreating, physically and emotionally. But I’ve been here.
Close to home so I can rest and hide out from the heat when its unbearable.

I’ve been avoiding planning for the worst case scenario. Fearful that planning for it could somehow guide me in that direction. So I try not to think, but that’s almost an impossible task. So I try to keep things levelled.
Living as if I only have a few days, and as if I have all the time in the world.
I buy things things I really want,
and I save for my children’s future, for my husbands future, and my own.
Healthy or sick.
We’re doing home renovations, and bucket list items.
Wheelchair adapting, and camera lenses.
Roll in shower, beautiful vacation spots.

I’ve been painting a little, getting ready to close the studio. (more to come)
I’ve played with photographs for my second attempt at a picture book. (more to come)
And I’m planning some “now or never” trips. (More to come)

The lesson being: when life hands you a pile of shit well….you use it as compost to grow something new? Something like that.

When I created an Instagram account I’m not sure what my goal was.
To share photographs, to get support and encouragement,
to feel some validation in my work.
Yet I rarely feel “accomplished”, and I think it’s because I haven’t defined my end game, my intentions, my goals.
How many “likes” and followers are a satisfying amount.
What number am I aiming for, what will make me happy?

The answer should be one. Me.
I like my pictures, I’m proud of my work, and I love the process.
That should be enough. But it isn’t.

When I was young(er) I dreamt of working for National Geographic. Travelling the world with my camera and writing about my adventures. That didn’t work out for me.
But I’m still travelling (on a very part-time basis), camera in hand, and writing.
And although it won’t be in NG, I can still have pictures in a book. And that has been my project the last couple years. I’m hoping to (self) publish in the next few months.

Hopefully I can use Instagram to spread the word and sell a few copies, but my goal is:
MY picture book on MY coffee table.

Today, as I went out to walk the dog a woman saw me and gushed
“oh my, what happened to you?”
Ok here we go, the typical question about the wheelchair I thought….
She continued “you’re full of paint, were you painting? Do you paint?”
I smiled from ear to ear, being noticed as an artist (or a person full of paint I guess) and not a disabled person was such a relief. She made my day.
Then we chatted for a while never mentioning my wheelchair or why I’m in it.

I think I’ll wear my painting clothes more often…

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.

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,  that time is limited, and I’m frightened to tears by the thought of what is to come.

But other then that it was lovely….

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.