I’m 51 – And I Still Have So Damn Much I Want to Do

51 years old.

When I look at that number, I have to smile a little.

Because somehow, 51 sounds pretty grown-up. Almost as if, by now, you’re supposed to know how life works. As if you should have a solution for every problem, an answer to every question, and a perfectly organized life plan tucked away neatly in some drawer.

Well.

I can reassure you: that is definitely not the case with me.

My life plan is probably lying somewhere between a camera, a half-empty cup of coffee, an idea for my next blog post, and Liza looking at me with that very special expression that roughly translates to:

“Daniel, you can save the world later. First, we’re going outside.”

And maybe that is exactly how it should be.

My Life Hasn’t Always Gone According to Plan

If there is one thing I have learned over the years, it is that life has a rather strange idea of planning.

You make plans.

Life takes a quick look at them.

And laughs.

I live with Fabry disease. A rare disease that does not politely announce itself and ask whether now is a convenient time. It is there. Every day. Sometimes quietly, sometimes loudly. Sometimes it gives me space, and sometimes it reminds me very clearly that my body has its own rules.

Pain.

Fatigue.

Exhaustion.

Days when my head is full of ideas, but my body says:

“Not today, my friend.”

And yes, that can be damn frustrating.

Because anyone who knows me knows that I almost always have something in mind.

A new idea for my website.

A new topic for my blog.

A photograph I absolutely want to take.

A bike ride.

A walk with Liza.

A journey.

A project.

Or simply some crazy idea that pops into my head while I’m drinking my morning coffee — the kind of idea that would probably make normal people say:

“Daniel, maybe you should think about that again.”

I usually do think about it again.

And then I do it anyway.

I Am More Than My Diagnosis

Fabry disease is part of my life.

I cannot and will not pretend otherwise.

But I refuse to let my entire life be reduced to this diagnosis.

I am not just a patient.

I am a father.

I am a dog person.

I am a hobby photographer.

I am a blogger.

I am someone who loves riding a bike.

I love nature.

I can spend hours looking at the sky and still get excited about the stars like a little child.

I love photographing things that other people might simply walk past.

A flower by the side of the road.

An unusual cloud formation.

The light over the Rhine.

The Milky Way.

Or some tiny detail that, for just a brief moment, makes the world feel a little more beautiful.

Maybe that is one of the most important lessons life has taught me:

Not everything big is truly important.

And not everything small is insignificant.

Then Liza Came Into My Life

And of course, my life would not be complete without mentioning my little four-legged life manager.

Liza.

My dog.

My little anxious rescue.

My companion.

And sometimes probably my personal therapist — just without the invoice and with significantly higher demands for treats.

Liza knows nothing about Fabry disease.

She does not understand lab results.

Medical reports.

Diagnoses.

Complicated medical terminology.

She does not care whether I am having a good day or a bad day.

Well… almost.

Because, of course, she notices exactly how I am feeling.

But she does not judge it.

She simply looks at me.

And sometimes, that is enough.

A dog does not ask:

“Why can’t you do more today?”

A dog says:

“Okay. Then we’ll just sit here together.”

And on better days, that same dog says:

“Wonderful. Then we’re going outside now. Immediately.”

I think Liza has taught me more about life in the past few years than she will ever realize.

I Still Have Dreams

At 51, maybe you are supposed to start slowing down a little.

Maybe.

But you don’t have to.

I still have dreams.

A lot of them, actually.

I want to continue building my website.

I want to connect people living with rare diseases.

I want patients to have a voice.

I want to tell stories.

Not just medical stories.

Real stories.

Stories about fear.

About hope.

About anger.

About exhaustion.

About love.

About family.

About friendship.

About those days when you want to throw everything away and give up.

And about the other days when you suddenly realize:

Damn. Life can still be incredibly beautiful.

My vision is to create an international community for people living with rare diseases.

A place where nobody has to explain why they are tired.

A place where nobody is looked at strangely because their illness is invisible.

A place where people talk to each other.

Share experiences.

Support one another.

And maybe even laugh together.

Because seriously:

With all the seriousness that rare diseases bring into our lives, we must not lose our sense of humor.

Sometimes humor is not a sign that something is not serious.

Sometimes humor is simply a way of continuing anyway.

Of Course I Am Afraid Sometimes

I do not want to tell a fairy tale here.

I am not strong every day.

I do not wake up every morning, jump out of bed full of energy, and shout:

“Hooray, another new day!”

Definitely not.

There are days when I am tired.

Not the normal “I didn’t sleep well” kind of tired.

But deeply exhausted.

There are days when I doubt myself.

My projects.

My ideas.

Sometimes I wonder whether my website will ever truly reach many people.

Whether anyone reads my blog.

Whether my words can actually change anything.

Whether my dream of building a large community is simply too big.

And then sometimes, something very small happens.

A message.

A comment.

Someone writes:

“Thank you. I know this feeling.”

And suddenly, I remember why I am doing all of this.

51 Is Not a Limit

Maybe I no longer have the energy I had when I was 20.

Although, to be fair, I was not always particularly sensible with my energy back then either.

But today, I have something else.

Experience.

Patience.

Stories.

Scars.

Memories.

And perhaps a slightly better understanding of what truly matters in life.

Today I know that not everyone will stay.

That not every plan will work.

That some doors will remain closed.

But I also know this:

Sometimes, somewhere, a window opens.

And if it doesn’t, I am now old enough to look for a ladder.

I Am Far From Finished

I still want to travel.

I still want to take photographs.

I want to meet new people.

I want to improve my English.

Maybe learn even more languages.

I want to see my website grow.

I want to experience what happens when an idea becomes a real community.

I want to go on many more bike rides.

See many more sunsets.

Spend many more nights beneath the stars.

I want to take thousands more photographs.

And yes, I will probably keep far too many of them.

I want to discover countless new paths with Liza.

And yes, I want to keep having crazy ideas.

Maybe not all of them will work.

Actually, I am quite sure they won’t.

But that is okay.

Because failure does not automatically mean an idea was bad.

Sometimes it simply means you need to try a different path.

My Life Is Not Perfect

My body sets limits.

Fabry disease sets limits.

Fatigue sets limits.

Sometimes my own mind sets limits too.

But limits are not always walls.

Sometimes they are simply signs saying:

“Maybe slow down a little from here.”

And that is exactly what I am trying to learn.

Not to give up.

But also not to constantly fight against my own body.

There is a difference.

A big one.

And Today?

Today, I am 51 years old.

I have a rare disease.

I have good days.

I have bad days.

I have doubts.

I have fears.

But I also have dreams.

Ideas.

People who matter to me.

My family.

My camera.

Nature.

My website.

My community.

And of course, Liza.

So when I think about where I am at 51, my answer is this:

Maybe I am not where I once thought I would be.

But perhaps I am exactly where I need to be right now.

My path is not straight.

It probably never has been.

Sometimes it is rocky.

Sometimes it goes uphill.

Sometimes I stand there and ask myself:

“Who the hell planned this route?”

But I keep going.

Slower, when necessary.

With breaks, when my body needs them.

With detours.

With mistakes.

With hope.

With my camera.

With my ideas.

And very probably with Liza somewhere ahead of me, once again completely convinced that she knows exactly where we are going.

I am 51.

I live with Fabry disease.

But I am living.

And I still have so damn much I want to do.

What about you?

Do you sometimes feel that an illness is trying to make your dreams smaller?

What dreams do you still have?

What do you absolutely want to experience?

Feel free to share your thoughts and experiences with me. Because maybe that is exactly where something important begins:

When we talk to each other.

When we encourage one another.

And when we keep reminding ourselves:

A diagnosis can be part of our life.

But it never has to become our whole story.