Month: January 2020

Adjusting

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It’s been difficult for me to manoeuvre to a location in order to get the photo I want, So I’ve had to do some adjusting to the pictures I can get. I like to call these adjustments “playing with photographs”. This turns out great since it’s something I’ve enjoyed doing since high school. Of course back then I used scissors, glue, and actual prints (printed by me using different colors, contrast, and brightness). And now, with the help of modern technology, I can actually do this from my bed. That is just awesome!

Playing with photographs has helped me turn a negative into a positive. Or at the very least this has taught me to find value in unfortunate events.

Fading

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I have lost many parts of myself. And I am trying desperately to hold on to what remains. I am going on another bucket list trip soon. And already I am sad because I know there will be so much I won’t be able to do. My limitations are much clearer the closer I am to anything. Not being able to walk upstairs feels terrible when I sit, in my wheelchair, at the edge of a staircase. Or just a step. And not being able to walk down a beach will be harder to bare when I am right next to one. So I am excited for my next trip. I’m excited to give this gift of wonderful lifelong memories to my family. But I am also mourning broken dreams. I will cry, and I will smile. These bucket list items are turning out to be a mind f#$k But it’s an important journey for me. They are moments of anger and acceptance. Of joy and sadness. They are making me stronger as I get weaker.

Where have I been!?

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I have been getting up. I have been pushing myself forward. I have been trying.
I’ve been going through paleo cookbooks and prepping healthy meals.
I have been doing laundry and watching Netflix.

I’ve joined Apple Music and I’ve been listening to lots of oldies
(God speed you black empereur, massive attack, zeppelin, the doors, and more.)
while playing with photographs

 

I have been …. distracted.

Tucson

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I got to see a long time friend and her family. And they embrace my family with open arms. The highlight of my trip by far.
I took photographs:


I saw Christmas lights.
I got to take a stroll inside a canyon. (YAY! Wheelchair accessible trails)
I saw mountains and hills,
and at the bottom of a trail I watched my family move on without me.
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We had sun and clouds, warm days and cold nights.
It went by so fast it is already but a glimpse in my mind.
I left wishing I had more time to see more.

I’ve been away

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Physically and emotionally.
I’ve been writing a lot but I haven’t been posting.
I’ve written about my disease, about being a mother,
about 2019, my dreams and fears for 2020.
About the loneliness and the struggle of being sick.
About my strengths, my accomplishments and my travels.
I’ve been good and bad.
Trying to sort it all out has left me in a daze, unable to cry or laugh.
Confined to contentment.

I want to soar
…