Knowing Isn’t the Same as Living It
I’ve always known my disease was progressive.
When you grow up with Spinal Muscular Atrophy (SMA), words like deteriorating and progressive become part of your vocabulary from a very young age. Doctors explain what might happen. Statistics tell you what to expect. You learn that at some point things will get harder.
For most of my life, that knowledge sat somewhere in the background. It was always there, but it wasn’t something I thought about every day. Life was busy. There were dreams to chase, memories to make, people to love, adventures to have, and a world to experience.
I knew progression would come.
What I didn’t know was how different it feels when it actually arrives.
There is a huge difference between understanding something intellectually and living through it emotionally.
When Strength Starts to Slip Away
Over the last couple of years, I have experienced a decline that has been difficult to put into words.
My arms have always been one of my greatest strengths. They have given me independence. They have allowed me to do countless tasks that many people take for granted.
Now I find myself struggling with things that once felt routine.
Even eating has become increasingly difficult.
It’s not one dramatic moment that changes everything. It’s a collection of small moments that quietly break your heart.
It’s reaching for something and realizing you can’t.
It’s needing help with something you used to do yourself.
It’s adapting again.
And then adapting some more.
These moments may seem small to others, but when they happen day after day, they become constant reminders that your body is changing.
The Illness That Changed Everything
I think a significant turning point came in 2024 when I developed pneumonia.
It was the first time I had been seriously ill in a very long time. I knew being sick would impact me, but I don’t think I realized just how much it would take from me.
The reality is that I never really got that strength back.
Since then, I’ve faced additional health challenges, including surgeries and adjusting to life with a suprapubic catheter. Each challenge on its own may seem manageable, but together they have forced me to confront something I’ve spent years trying not to dwell on: progression.
For the first time, I wasn’t just hearing about it.
I was living it.
Grieving a Version of Yourself
The physical changes are difficult.
The emotional impact is even harder.
One of my greatest fears is becoming a burden.
I know the people who love me don’t see me that way. My family has spent more than twenty years fighting alongside me. They have loved me through every challenge, every setback, every victory, and every adaptation.
But fear isn’t always rational.
Sometimes it shows up in the quiet moments.
Sometimes it whispers questions that are difficult to answer.
How much more help will I need?
How much independence will I lose?
What will my future look like?
Alongside that fear comes grief.
Not grief for a person.
Grief for a version of yourself.
The version that could do certain things.
The version that had a little more strength.
The version that didn’t have to think so hard about every movement.
It’s a strange kind of loss because you’re grieving someone while still being that person.
When Frustration Threatens Your Joy
Then there is the frustration.
The frustration of watching your body change when your mind remains full of plans, dreams, and determination.
The frustration of feeling your happiness challenged by circumstances you never chose.
The frustration of not wanting this disease to change who you are as a person.
Because that’s what scares me most.
Not the wheelchair.
Not the equipment.
Not the adaptations.
What scares me is feeling like I’m losing the parts of my identity that exist beyond SMA.
For so much of my life, I’ve worked hard to ensure that disability was only one chapter of my story, not the entire book.
Lately, there are days when I feel like I am becoming my disease.
And I hate that feeling.
Finding a New Definition of Strength
Yet despite all of this, something unexpected has happened.
As difficult as this journey has been, it has also deepened my understanding of resilience.
As a motivational speaker, I’ve spent years talking about overcoming challenges, adapting to change, and finding strength in adversity. Now I find myself living those lessons in a completely different way.
Not because I have all the answers.
Not because I’m handling it perfectly.
But because I’m learning that resilience isn’t always about being brave.
Sometimes resilience looks like accepting help.
Sometimes it looks like admitting you’re struggling.
Sometimes it looks like changing your expectations.
Sometimes it looks like explaining to people what you need.
Sometimes it looks like getting through one day at a time.
Why I Will Keep Fighting
I don’t know exactly what the future holds.
I don’t know what progression will look like five years from now.
I don’t know how many more adjustments I’ll need to make.
But I do know this:
I am still here.
I am still fighting.
I am still advocating for a better life for people living with rare diseases.
I am still speaking.
I am still dreaming.
And I am still hoping.
My fight may look different than it once did, but it isn’t over.
If anything, it has become more important.
For Those Walking a Similar Road
If you’re reading this as a family member or friend of someone with a progressive condition, please know that behind every physical change is often an emotional journey that is much harder to see.
Your patience, understanding, and support matter more than you know.
And if you’re reading this while facing your own progression, your own decline, your own losses, I want you to know something too:
You’re not alone.
It’s okay to grieve.
It’s okay to be angry.
It’s okay to be scared.
It’s okay to admit that this is hard.
Hope and grief can exist together.
Fear and courage can exist together.
Strength and vulnerability can exist together.
I’m learning that every day.
Choosing Hope
This disease may be progressive.
But so is my determination to keep living, loving, advocating, adapting, and finding joy wherever I can.
I may not know exactly what tomorrow looks like, but I know that I will meet it the same way I have met every challenge before it.
One day at a time.
One adaptation at a time.
One act of courage at a time.
And with hope leading the way.
