from the VAULT
I keep saying that I write about Multiple Sclerosis.
That is not quite right.
I write about life through the lens of MS.
There is a difference.
I am not trying to explain the medical science of the disease.
I am not tracking every symptom.
I am not here to hand out health advice, miracle routines, or five easy steps to accepting your new life.
I write about fatherhood.
Marriage.
Creativity.
Grief.
Friendship.
Travel.
Dignity.
Access.
Identity.
The small decisions that shape a day.
The larger decisions that shape a life.
MS is not always the subject.
But it is almost always somewhere in the frame.
It changes the angle.
It changes what things cost.
Going to a concert is still going to a concert.
But now I have to think about where I will sit.
How far I will have to walk.
Whether my scooter will fit.
How long the event will last.
What my body will charge me the next morning.
A family trip is still a family trip.
But underneath it runs another layer.
Accessibility.
Fatigue.
Heat.
Washrooms.
Pain.
The quiet calculation of whether one more stop will be worth the bill.
Even simple things have changed.
Cutting the grass.
Cooking dinner.
Cleaning the house.
Going to a party.
Standing in a room full of people.
There is the thing itself.
Then there is the MS version of the thing.
That is the lens.
It does not mean every part of my life is sad.
It does not mean I spend every day staring at the disease.
Most days, I am trying to live around it.
Some days I misjudge the stack and my body shuts the whole operation down.
Other days I choose something knowing it will hurt later.
Staying home can feel like wisdom.
It can also feel like loss.
Both can be true.
That is what I am trying to document here.
Not the inspirational version.
Not the tragedy version.
The lived version.
The awkward middle where you can be grateful for your life and still grieve what happened to it.
Where mobility equipment can give you freedom and still make you cringe when you see yourself in a photograph.
Where asking for help can be necessary and still scrape against your dignity.
Where adapting is not the same thing as giving up.
MS changed the shape of my life.
It changed how I move through the world.
It changed how the world sees me.
It changed how I see myself.
But it did not erase everything that came before it.
I am still an artist.
Still a husband.
Still a father.
Still curious.
Still stubborn.
Still trying to create.
Still trying to build a life that feels fully my own.
That part matters.
Because illness can slowly turn your life into a collection of things happening to you.
Appointments.
Symptoms.
Restrictions.
Bad news.
Other people making decisions.
Other people deciding what they think you can handle.
Writing these notes is one way I take some of that ground back.
I get to decide what the experience means.
I get to decide what deserves to be remembered.
I get to look directly at this changed life without pretending it is the life I planned.
That does not make every loss meaningful.
Some things just hurt.
Some things were taken.
Some things will not come back.
I am not interested in dressing that up.
But this life is still happening.
My daughters are growing up.
My marriage is still moving through time.
There are places I want to go.
Things I want to create.
Music I want to hear.
People I want to sit beside.
Moments I still want to be present for.
MS is part of those decisions now.
Not always at the centre.
But always affecting the light.
That is what these notes are.
Fragments from inside a life that changed.
Not a life that ended.
Just the view from here.
Life through the lens of MS.