Kaylee and I laughed constantly. Our home was the two of us getting into some kind of antics, going somewhere, doing something.
We rarely had the television on during the day because we were rarely sitting still long enough to watch it.
MY LIFE
I STILL REMEMBER RUNNING
I don’t miss a life I forgot to appreciate. I miss a life I loved while I was living it.
After years of chronic pain, failed treatments, and shrinking capacity, I started wondering if maybe the problem was me. Maybe I had lost my drive. But I still remember the life I had, the freedom I loved, and exactly what it felt like to run. This is about what happens when you are still the same person — but the fence keeps getting in the way.
Yesterday, someone finally listened to me.
Today, I woke up feeling like my skin wanted to crawl off my body.
My stomach was in knots. My chest was flushing. I was agitated, angry, restless. I had sweated through my clothes overnight badly enough that by morning I smelled sour and felt so gross I scrubbed myself with a coffee scrub in the shower.
I knew exactly what was happening, and what the culprit was.
The steroid.
I had told the pain-management doctor that I don’t do well with steroids. Despite knowing better, her pause was long enough that I didn’t feel like fighting. I agreed anyway, and now I was here. The consequences of the steroid.
Because despite how frustrated I get with doctors, I am not trying to win an argument with them.
I am trying to get better.
So I tried it.
And today I stopped it.
I told Rob I was done wasting time, resources, and pieces of myself being a guinea pig for doctors who refuse to listen to me.
That does not mean I am done seeking help.
It means I am getting much less willing to spend what little capacity I have on care that makes me feel like my experience in my own body is irrelevant.
Every attempt costs me something. The calls. The drives. The appointments. The explanations. The medications. Sometimes the aftermath of the medications.
I don’t have unlimited energy to keep spending on things that leave me worse than when I started.
BUT MAYBE IT’S ME
That thought has been getting harder to ignore.
Maybe somewhere in all of this, I changed.
Maybe I lost my motivation. Maybe I lost my drive.
Because I want to do things.
I know how much needs my attention. The website. Blogs. Work. Bills. So many bills. The house. Laundry. My daughter. My life.
I can sit there thinking about all of it. I know what needs to happen.
Then I get to my computer and there is just pain….followed by an extreme mental block..
I know how to do the work. I want to do the work. I care very much that it isn’t getting done.
And somehow knowing, wanting, and caring do not always turn into doing what’s needed.
So I sit.
Doing nothing becomes easier than trying to figure out how to get through whatever invisible wall has appeared between me and what I am trying to accomplish.
Then I hate myself for sitting.
I watch everything pile up, and the pile makes starting even harder.
I tried to work today.
Nope.
I played one game of Fortnite instead.
It brought me no joy because I could not stop thinking about everything I should have been doing.
Even distraction sometimes feels like evidence that another hour passed and I still didn’t move anything forward.
THIS ISN’T LIVING
Eventually I cried to Rob.
Helplessly.
I told him this isn’t living.
I want to live.
That is the part I need people to understand.
I want my life so badly that sometimes wanting it hurts almost as much as losing access to it.
Every day I sit on my phone playing stupid little games and testing apps because maybe one can generate some amount of money toward bills.
There is a purpose behind it.
It is also demoralizing.
I have built businesses. Worked endlessly. Solved problems. Managed chaos. Created things. Provided. Planned. Executed.
Now there are days when I sit in bed tapping buttons on my phone because it is one of the few things I can reliably do.
Meanwhile, the house gets further away from me.
Things need cleaning. Fixed. Paid. Finished.
And I am sitting there knowing all of it.
My daughter is here.
That hurts differently.
I love her with everything in me. I want to be the mom I know myself to be. The Mom I was.
Instead, she hears me yell. She hears me sob. She sees me break down. She sees a version of me constantly fighting a body that refuses to cooperate.
And I hate that this is part of her home now.
Because this was not the life I built for us.
THE LIFE I ACTUALLY HAD
I need to make something clear about the life I keep saying I want back.
I did not fail to appreciate it.
I did not race through my life only to become sick and suddenly realize I should have enjoyed it more.
I enjoyed the hell out of it.
I loved building the business. I loved being busy. I loved solving problems. I loved being out in the world.
I danced around my house while I got ready and made up songs while I moved from one thing to another.
And when she wasn’t with me, I was still out there.
Living. Doing. Moving
I appreciated that freedom with my whole waking soul.
I knew exactly how good it was while I had it.
That is what makes losing it so painful.
THE MUSTANG
Have you ever seen a wild mustang running free?
Power without permission. Movement because movement is available. Space in front of it and the ability to take that space simply because it can.
I have never watched someone break a wild horse in person.
But lately that is how I picture my life.
Once beautiful, wild, and free.
Now caged.
I am still the same horse. I can see the field beyond the fence. I remember exactly what it felt like to run there, and I still want to run more than anything.
Sometimes I even find a weak spot in the fence.
I push against it. I get through.
Those are the good days.
I move. I work. I laugh. I accomplish something. I recognize myself again and immediately think:
There you are.
Run.
So I do.
Until the fence catches me again.
Pain. Exhaustion. A flare. Another appointment. Another medication. Another reaction. Another day lost.
Then I am back inside, looking at the same field and trying to figure out how to get through again.
The first few times, you throw your entire body against the fence.
But after enough times, you remember what happens when you do.
You remember the cost of getting through.
You remember being pulled back.
And eventually simply approaching the fence starts to feel exhausting.
That is the part that scares me.
Because I don’t know who I am sometimes.
I look at myself sitting still and wonder whether the woman who danced through her house, made up songs, built things, and rarely turned the television on during daylight hours is gone.
Maybe I have lost my drive.
But then I look at the field.
And I still want it.
I still want to run.
That has to mean something.
WHAT’S EVEN THE POINT?
My dad used to tell me anyone can do something for a minute.
When life got hard, I used that.
Okay. Sixty seconds.
Then we deal with the next sixty.
Sometimes it was an hour. Sometimes a day.
That worked because eventually something changed.
But what happens when you make it through sixty seconds and the next sixty look exactly the same?
Then the next.
Then the next.
What happens when morning stops feeling like the promise of a new day and starts feeling like the announcement that you have to fight the same fight again?
That is where I was when I went to bed.
I was done living in that day.
Not done living.
Done with the day.
I wanted darkness. Silence. Nothing else asking anything from me.
Because morning would come soon enough, along with the fight.
For some people, a sunrise is the promise of a new day.
For others, it can feel like the torment of having to continue a life they refuse to quit
while simultaneously not being granted the freedom to fully live.
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