People ask me how I'm doing, and I have no idea how to answer that.
The truth is hard to tell, and I'm assuming, hard to hear.
Physically;
My right arm is completely numb, and hard to use.
I can barely hold up my phone.
I can't walk at all, and sometimes I can barely stand.
Transferring from my wheelchair to my bed or toilet,
is becoming an issue. (As well as vice-versa)
Lifting my head is sometimes difficult.
It's getting hard sitting up straight in my wheelchair.
Some days I struggle for breath.
My body aches from sitting AND lying down.
I feel suffocating pain.
And I am exhausted.
Mentally:
I'm scared to death.
Scared about;
an elevator being installed in my living room,
making the space even smaller.
Lying in bed looking up at a hoist.
Spending the rest of my days in pain.
Not being able to go outside.
Spending my days watching people leave.
Scared I will feel left out, jealous of their freedoms.
Scared I won't be able to look out a window.
Being bathed by strangers, of being in a vulnerable situation and not being able to protect myself.
I'm afraid I will never make art ever again.
Never take another picture.
I'm afraid of being a burden on my friends, my family, my doctors, and society as a whole.
And completely losing myself, and disappearing into this disease.
I feel purposeless.
An empty shell.
I feel like I am rotting and spreading the mold to anything/anyone near.
I feel judged for not being stronger, for giving up on things I love.
To me it doesn't feel like I'm giving up. It feels like these things have been taken from me.
I feel alone in my pain.
I feel like I'm dying, even though people tell me I'm not.
I feel I have passed my due date, that I've overstayed my welcome.
I feel empty and unmotivated.
I no longer want, for fear of the unsurmountable obstacles.
I feel perpetually pensive and anhedonic.
I no longer seek happiness, simply peace.
So how am I? I am broken, and a real buzz kill.
How are you?Sitting by a window
It’s very early
I’m sitting in my wheelchair, looking out the window at the sun rising. A bouquet of aging flowers to my left, my hospital bed to my right.
Last night I spoke to my husband and daughter on the phone. I listened to their upcoming plans. And I had none to share.
I woke to the thoughts of being alone, of being left behind while they move forward. And I cried.
This is my life now. I look and I listen to life happening, as I sit in my wheelchair and slowly turn to stone.
I want to disappear
Life has slowed down for me in a major way. It has given me the time to rethink my life, my choices, my relationships, my purpose, and my mistakes. I’ve come to the realization that I am not a good person.
I want to apologize to all for being a burden, an anchor, a dark cloud, the black sheep, for being selfish, and for overstaying my welcome.
The last few years I have been learning to let go. To let go of control, aspirations, dreams, expectations, fears, health, and hope.
Now, it is time I let go of relationships, to set people free. To cut the anchor.
I’m so sorry for everything, for wasting everyone’s time. It’s time for me to disappear, and be forgotten.
Caroline
Irony
I’m never quite sure when to use this word.
But a couple weeks ago, as I was chocking on some food,
I read the temporary tattoo on my arm and thought …
“Is this irony?”
I’ve since decided to not get this tattooed for real.
My name is Anne
I have felt myself change over the last few years. Even my dreams have changed.
I dont feel like myself anymore. And it is more apparent when surrounded by others.
What ever person you see in the wheelchair, it is not Caroline.
It is a body and mind overtaken by disease.
I mourn this loss everyday. The grief and pain progressing, building rather then diminishing.
Unable to separate myself from the loss with time.
… Or can I?
I want my story to end on a positive note. I want people to say:
“Caroline? I heard she headed north to the mountains with a camera around her neck and a backpack filled with crayons and books (some empty, some not).
She’s smelling the roses.
She’s watching day turning to night turning to day.
She’s listening to the birds and the wind. And she’s playing with colors.”
And the person you see before you now, the girl in the wheelchair, well … I am Anne.
I’m new here.
Hi 👋!
2023
2023 was a very difficult year.
After visiting with my new neurologist, who informed me my diagnosis was actually PPMS,
I contracted (long) Covid. Then she moved away.
Upon having medical test done, I contracted an infection.
I broke down physically and mentally, and was hospitalized for both.
I have refused tests, appointments, with any hospital/dr. since.
And instead decided to Schrödinger cat it.
As long as I don’t look inside, I could be healing.
The weakness in my arms worsened. Making simple every day tasks much harder.
I stoped painting, I stoped writing, and I put my camera away.
I got a new, more permanent, wheelchair.
Then, for my peace of mind, I went to stay at our cabin in the mountains.
Where I could mourn the way I grew up doing it, alone.
I spend my days resting, coloring, and losing myself in the view.
And as I watched the trees stand still and strong , I would think “maybe being rooted isn’t so bad.”
It’s 4am and I can’t sleep
Probably because I slept most of the day. I like to lay in the sun and feel the warmth on my skin. I spend most sunny days like that. And on cloudy days I sit at the table, markers and paper laid out in front of me, and I draw.
I am Schrödinger’s cat-ing it
I’ve decided to keep the box closed. I’m not sure exactly what that means but right now I don’t want to know or talk about the future. I don’t want to hear the news, I don’t want to know the forecast, I don’t want any more MRI’s or ultrasounds or blood test. I don’t want to know nothing. I just want to see what happens. Live in the moment.
Unedited
I haven’t written in a while, my thoughts are often gone by the time I reach my keyboard. But once in a while I manage to capture a thought. Like today …. https://youtu.be/5OOdThyD7u0
Blue and Orange
Here I am, a little lost and a little found, in my studio painting Bleu et Jaune-Orange
Caro 