The MRI is over.
That should have been the end of the anxiety.
For days, most of what I was thinking about was the machine. The tube. The cage over my head. Not being able to move.
The possibility of feeling trapped in there and having my heart start pounding so hard that ten minutes suddenly felt impossible.
That was the fear I understood.
Get into the machine. Stay still. Get through it.
I did.
But sitting here afterward, thinking about the whole experience, I realize something.
The machine is over.
And I’m still anxious.
Now I have to wait for the pictures.
I haven’t had an MRI in three or four years. I live with secondary progressive MS, which means I don’t exactly need an MRI to tell me that my body changes.
I notice my right hand. My walking. The fatigue. Little things that aren’t quite the way they used to be.
My wife notices too. She sees me every day, and she has said it to me without drama.
“Migs, there’s progression. It’s not huge, but I can see you struggle a little more than you used to.”
That’s different from a doctor saying it. It’s different from seeing two scans beside each other on a screen.
I know the MRI can’t tell the whole story. With progressive MS, you can have worsening symptoms without new lesions showing up on a scan.
But somebody is still going to look at those pictures and tell me what they see.
And there is one sentence I don’t want to hear.
“Well, Mr. Allamani, I think we have progression in your disease.”
That’s it.
That’s the sentence.
Because what comes after that?
That’s the part people don’t always understand about progressive disease.
There may not be some satisfying next sentence. There may not be, “Here’s what we’re going to do.”
There may not be some new treatment that repairs what has been damaged. Some machine that remyelinates my nervous system and gives me back what I’ve lost.
Maybe something changes with medication. Maybe something changes with therapy. Maybe I adapt something else in my life.
But what I have is what I have.
And I don’t want it worse than this.
That is probably the simplest and most honest way I can say it.
I don’t want this disease to take anything else.
I have already rebuilt my life around this version of my body.
I know how to live here.
I know how to cook here.
Drive here.
Write here.
Be a father here.
Be a husband here.
Create here.
I know where the walls are. I know what I can push. I know what happens when I push too far.
I have figured out this version.
I do not want to find out how to live in the next one.
And I think somewhere along the way I started holding onto the idea of stability with white knuckles.
Look what I can still do. Look what I built. Look how much I’m still doing.
See?
I’m okay.
Nothing is really changing.
I’m stable.
You can almost convince yourself.
Not because you’re stupid. Not because you’re pretending. Because sometimes that’s how you live with something that has no clean ending.
You focus on what is still there. You keep moving. You adapt. You make the room smaller where you have to and larger where you can.
And every once in a while something comes along and threatens that little arrangement.
An MRI does that.
It can show you things you couldn’t see before. Things happening beneath the surface.
And suddenly that word — stable — doesn’t feel quite as secure.
I keep thinking about progression as a specter.
A ghost.
Something standing just outside the light.
I picture a man sitting in a dark room with one spotlight on him. His hands are wrapped around a rope.
White knuckles.
Holding on.
Above him is this ghost of progression.
Not cutting the rope. Not doing anything dramatic.
Just reaching down and slowly peeling his fingers away.
One at a time.
That feels closer to how this disease actually works.
Not one giant collapse.
Attrition.
Something gets harder. You adapt.
Something else gets harder. You adapt again.
Maybe treatment gives you another foot of rope. Maybe therapy gives you an inch.
But somewhere underneath all of that is the question you don’t really want to ask.
How much rope is left?
That is what scares me about the MRI. Not simply what the pictures show, but what they might mean about where I am on that rope.
Before the scan, I thought I was afraid of being trapped inside the machine.
Now I think the machine just forced me to feel something I already live with.
There is a kind of claustrophobia in progressive disease too.
You are trapped inside a body that can keep changing around you, and there is no door you can open when you’ve had enough.
The tube just gave that fear somewhere to go.
Because there are things I cannot simply work harder at and beat.
I cannot run through this brick wall. I cannot out-discipline demyelination. I cannot force my nervous system to cooperate because I really want it to.
I live inside a body that can change without my permission.
That may be the part of progressive disease that scares me more than anything else.
Not knowing when. Not knowing how much. Not knowing what the next thing is.
Most people probably carry some version of that fear around. Bodies age. Things fail. Eventually, everybody is reminded that they are temporary.
But progressive disease gives that fear a shape.
You know what worse can look like. You have seen the examples. You know the possibilities.
And sometimes you can feel the smallest version of them beginning in yourself.
That is the specter.
It doesn’t need to scream.
It just needs to stand there.
And every so often something like an MRI makes you turn around and look directly at it.
I don’t want to pretend progression doesn’t scare me.
It scares the fucking shit out of me.
I don’t want this disease to get worse. I don’t want to lose more of my hand. More of my walking. More energy. More independence.
More pieces of the life I have already fought to rebuild.
I don’t need a motivational ending for that. I don’t need to turn it into courage.
Right now, I’m waiting for somebody to look at those pictures and tell me what they see.
Waiting for a conversation I already know I’m afraid to have.
And until then, I’m still here.
Still holding the rope.
Still gripping the word stable.
Still hoping the specter leaves my hands alone.