Notes from a Changed Life

Fragments from a larger work about illness, identity, fatherhood, creativity, grief, dignity, and rebuilding yourself after life changes the rules.

This is not a generic blog.
It is a living archive for the third major project: short reflections, Reddit-born ideas, journal fragments, micro-essays, and pieces of a larger book about life after the old version of yourself no longer fits.More Than MS tells the visual story.The Tuesday Playbook offers practical handrails.Notes from a Changed Life is where the deeper identity work lives.A changed life is not only about what was lost.
It is about what had to be remeasured, rebuilt, and renamed.

• Main Site
• More Than MS
• The Tuesday Playbook

Field Notes

Fragments, reflections, and short essays from inside a changed life. Newest notes appear first.

————————————MAY 25, 2026FATIGUE CONTROLS ACCESS TO THE REST OF MEPeople hear fatigue and think tired.That is not what I mean.Tired is when you need a nap.MS fatigue is different.It is more like someone quietly closing doors inside your own life.I might still have ideas.I might still have love.I might still have things I want to do.I might still care deeply about my family, my work, my house, my body, my future, my own damn day.But fatigue decides how much access I get.Access to my legs.Access to my hands.Access to patience.Access to memory.Access to focus.Access to conversation.Access to creativity.Access to being the version of myself I know is still in there.That is one of the cruel tricks of MS.It does not always erase the person.Sometimes it just makes the person harder to reach.And from the outside, that can be confusing.People may see me sitting there and think I am resting.Or lazy.Or quiet.Or checked out.Or not trying hard enough.But inside, there may be a whole negotiation happening.How much energy do I have?What still has to be done?What can wait?What will punish me tomorrow?What will cost more than it looks like?That is why fatigue became the symptom that controls access to the rest of me.Not because it is the flashiest symptom.Not because it is the easiest to explain.But because it decides what parts of my life I can actually reach on a given day.The body may still be here.The mind may still be here.The love may still be here.The want may still be here.But fatigue stands at the door and says:Not all of you today.

————————————MAY 25, 2026WHAT MS ACTUALLY CHANGEDSomeone asked me how my symptoms and quality of life have changed after 17 years with MS.At first, that sounds like a symptom question.Walking changed.My right hand changed.Fatigue changed.Pain changed.Brain fog changed.The shape of my day changed.But the real answer is bigger than that.MS did not only change my symptoms.It changed the structure of my life.It changed how I worked.How I moved.How I parented.How I created.How I measured myself.How I understood strength.I thought I was losing myself because I was losing physical ability.What I eventually learned was that I had confused my body with my whole identity.MS broke the old ruler.The old ruler measured strength, productivity, earning, endurance, reliable hands, physical confidence, pushing through, and being useful in the ways I used to be useful.That ruler stopped working.So I had to find another one.I did not rebuild the old body.I rebuilt my presence.I rebuilt the belief that I still have weight in the room.Even with a limp.Even with a cane.Even with fatigue.Even with a body that runs out fast.MS changed the shape of my life.It did not erase the value of it.