It’s been a while since I’ve written here.

Summer seems to do that to me.

Every year, life gets louder, everything starts moving a little faster, and somehow writing gets pushed quietly to the side.

I actually did write something earlier this summer. It was called When Home Feels Foreign.

And then I never posted it.

So much happened immediately afterward that suddenly it didn’t feel like the right thing to say anymore. Maybe I’ll come back to it someday.

Because apparently, this summer had something else it wanted me to write about.

When I flew home to New York at the beginning of the summer, I had everything planned.

And I mean planned.

I would spend time with my nephews. I would see my sister and my mom. We would have a visit from some of our Kansas family. I would run my festival and play a few concerts in there. David would come visit. I would go to the ocean. I would prepare materials for our Boho Strings recording coming out in September. I would spend some time with my best friends. And then, most importantly, I had deliberately left myself time afterward to do absolutely nothing.

Quiet time.

Recovery time.

Time to let my body come back down after asking far too much of it.

Because when you live with chronic illness, you start planning your life differently. Rest isn’t really a luxury anymore.

It is built into the itinerary.

If I know I have something big coming up, I need time before it. I need time after it. Sometimes, I even need time during it!

I have learned - sometimes reluctantly - that my body does not operate according to the same rules it once did.

So I had done everything “right.”

There was just one small problem.

Life had apparently not looked at my itinerary.

Family came to visit before the festival, which was wonderful. Truly wonderful. I saw people I hadn’t seen in far too long and made memories I am incredibly grateful for.

But beautiful things can still take something out of you.

Then the festival began.

For two weeks, it was a mad dash from morning until evening.

Being the artistic director means that even with the incredible team I have around me, my brain is constantly somewhere - someone needs something, something needs fixing, someone needs an answer, a rehearsal needs moving, a concert needs preparing.

And somehow, in the middle of all of it, music happens.

Wonderful music.

I am proud beyond words of what this festival has become, and I still have big plans for where it will go. I will keep doing it for as long as my body lets me (and if I’m being honest, probably long after that, because that’s just who I am).

But man, does it knock me out.

I had a few seizures during the festival.

Thankfully, David was there for them, and my team did what they always do when I fall: they kept everything moving. And brilliantly, I might add. A well-oiled machine.

When the final concert finished, I thought:

Okay. Now I can rest.

EHHHH!

Wrong.

Well, not entirely.

David was still there for a few days and made sure I slowed down. But after two weeks like that, my body doesn’t need a quiet afternoon.

It needs approximately three months in a dark room and perhaps a new nervous system.

Instead, I had two little boys I desperately wanted to spend time with before they flew home to California.

My nephews.

Two tiny humans who appear to have discovered a renewable energy source that science has somehow overlooked.

And there were moments that hurt. Not just physically, but emotionally.

Moments when I realized that at 37 years old, I couldn’t always keep up with them. Moments when I wanted my body to do something incredibly ordinary and it simply couldn’t.

But I did what I could.

And I am glad I did.

And then came the plot twist.

Grandpa was dying.

He had lived with liver cancer for more than ten years, so in some ways, we had received versions of this call before.

But this one was different.

The message originally came through my uncle. Grandma was telling us that if we wanted to see Grandpa, we needed to come to North Carolina.

Now.

I called her. We FaceTimed.

And I knew.

There wasn’t going to be a fall visit.

There wasn’t going to be a better time.

There wasn’t going to be a moment when my body was magically stronger and traveling was easier.

There was now.

For the past year, David and I had talked about going to North Carolina.

We wanted to.

We tried to find the right moment.

But I kept ending up in hospitals.

Trips were cancelled. Events were cancelled. Plans disappeared from the calendar one after another.

Next year, I had told Grandma and Grandpa.

I promise.

My sister had made it there. My cousins had made it there.

I hadn’t this year.

And even though I know they understood why - and even though they never made me feel guilty for it - there was still that little piece of guilt sitting somewhere inside me.

Then Grandma told me that Grandpa was afraid he wasn’t going to see me again.

So I made sure he could hear me on the phone.

“I’m coming.”

His face lit up.

And at that moment, I knew I was getting on that plane no matter what it cost my body afterward.

Mom and I booked the tickets.

The days that followed were some of the strangest, hardest and most beautiful days I have ever experienced.

You discover things you are capable of when there isn’t really another option.

Alongside Papa’s cousin Lisa, I became something resembling a hospice nurse. We gave Grandpa his morphine. We helped with the things that needed to be done. We sat beside him.

And I played for him.

I played my violin beside his bed, and when I played Sinatra, Grandpa started humming along, almost singing.

Even toward the end, when words were mostly gone, he was still there.

He could hear us.

So we said the things we needed to say.

On the final morning, the hospice nurse came.

She was checking him when, very calmly, she told us it wouldn’t be much longer.

We gathered around him.

And then, incredibly peacefully, Grandpa left.

I don’t really know how to describe watching someone die.

It was devastating.

But it was also beautiful.

Those words don’t seem like they should belong beside each other, but somehow they do.

There was no dramatic moment. No great fight.

There was simply a room full of people who loved him, surrounding a man who had spent his life loving them.

And then he wasn’t hurting anymore.

Years ago, I had been there the day before my grandmother on the other side of my family died.

Strangely, Mom later realized that she and Grandpa died on exactly the same date, a few years apart.

But I had never actually been there for the moment someone left.

I wasn’t there the moment when Papa died. Because his organs were donated, my last experience of him was different.

So this was new.

Death, up close.

And maybe, strangely, it wasn’t quite as frightening as I thought it would be.

That has stayed with me.

Because death has occupied a strange little corner of my mind lately.

When you are 37, you’re not really supposed to spend much time thinking about your own mortality.

And yet, over the last few years, my body has forced me into conversations I never expected to be having at this age.

Now there is a diagnosis looming that my doctors believe is very likely.

One that, once officially confirmed, changes the way you think about time.

And I am scared.

Of course I am.

I don’t think watching Grandpa die suddenly made me unafraid of dying.

I wish life handed out revelations that neatly.

But something did change.

I watched a person reach the end of a very full life.

And what surrounded him in that room wasn’t his illness.

It wasn’t the cancer.

It wasn’t the years his body had betrayed him.

It was us.

It was Grandma.

It was his friends.

It was his family.

It was stories and laughter and old VHS tapes and fishing trips and grandchildren and great-grandchildren and Sinatra.

It was an entire life that had happened before that final breath.

At his funeral, I had the privilege of giving Grandpa’s eulogy.

And while I was writing it, I kept coming back to their boat.

It was called the Someday Too.

I always loved that name.

But writing about it after he died, I realized there was something about it I had never really understood before.

Grandpa and Grandma didn’t spend their lives waiting for someday.

The boat gave us days on the water. Fishing. Laughing. Eating. Probably arguing a little (because who doesn’t in an Italian family?).

Ordinary days that became the memories we would one day desperately wish we could have back.

Their someday became today.

And perhaps that’s the thing I am carrying home with me.

I spend so much of my life now calculating.

If I do this today, how much will I pay for it tomorrow?

If I go there, will I have enough energy for this?

If I push through this, will I trigger a seizure?

How many days do I need to recover?

What can I cancel?

What can I move?

What can wait?

And I need to do that.

That is the reality of living in this body.

I cannot simply decide that life is short and therefore throw caution to the wind.

My body has consequences, and pretending otherwise doesn’t make me brave.

Sometimes the bravest thing I can do is stay home.

Sometimes I need the couch.

Sometimes I need the bed.

Sometimes saying no to today is the only way I have a chance at tomorrow.

But I think there is another question I need to start asking, too.

What if tomorrow isn’t the only thing worth protecting?

Because sometimes there is a Grandpa in North Carolina waiting to see you.

Sometimes there are two little boys asking you to play.

Sometimes there is a husband and two dogs ready for an adventure in the Defender.

Sometimes there is a violin in your hands and someone humming Sinatra.

And sometimes you know that whatever tomorrow costs, today is worth it.

I don’t know exactly what my diagnosis will mean.

I don’t know what my body will let me do a year from now, five years from now, or ten.

There is so much I don’t know.

And maybe that’s why I keep thinking about Grandpa’s boat.

Someday Too.

Maybe there will always be things I have to save for someday.

Trips my body can’t make.

Concerts I can’t play.

Plans I have to cancel.

Days when living fully means lying completely still.

But I don’t want to spend whatever life I have waiting to become healthy enough to start living it.

I don’t want all of my dreams to live in someday.

Some of them need to become today.

Even if today looks different than it used to.

Even if I need help.

Even if I have to do it slowly.

Even if I pay for it tomorrow.

Because after watching Grandpa leave this world, I think I understand something I didn’t before.

Maybe dying isn’t the thing I’m most afraid of.

Maybe I’m more afraid of reaching the end and realizing I kept waiting for my life to begin.

Grandpa spent years telling us he loved us “all the way up to the sky and back.”

And I hope wherever he is now, there is water.

I hope Papa was waiting.

And I really hope there is a boat.

Maybe even the Someday Too.

As for me, I’m still here.

Still learning how to live inside a body I don’t completely understand.

Still learning when to rest.

Still learning when to go.

Still learning that both can be acts of living.

And maybe, little by little, learning not to save everything for someday.

Because sometimes, someday has to be today.

—————————

For Grandpa

I had the privilege of giving Grandpa’s eulogy at his funeral. I wanted to share it here, too, so that perhaps you could know a little more about the man behind the Someday Too.

“I’ve been trying to figure out how you fit a person like my Grandpa into three minutes.

And honestly, I don’t think you can.

I was his first grandchild, and for nearly four whole years, I had him all to myself. And he decided very early on that being a Grandpa was something pretty special.

There are about twenty VHS tapes filled with footage of me as a baby and a little kid. And when I say footage, I mean everything. Grandpa was there with his video camera, from the day I was born, in his pink shirt, documenting every move I made.

And when I say every move, I mean…there were a lot of hours of footage of me doing absolutely nothing.

But that was Grandpa.

He was so proud to be a grandpa. He was there to welcome each of us into the world, and he celebrated every one of his granddaughters with so much happiness. He wanted to be there for the big moments.

But he also had a way of making the little moments feel important.

He saved things. He made ordinary moments feel extra special. He had little drawings we made for him in his wallet and carried them around until they completely fell apart.

Some of my favorite memories of him were on the Someday Too - their boat. I always loved that name, because somehow Grandpa and Grandma made sure that our dreams weren’t something we would get around to someday.

They were today.

The boat gave us days on the water, fishing, laughing, eating, probably arguing a little bit… and memories that I know I’ll carry for the rest of my life.

Grandpa was also, without question, my biggest fan.

Our biggest fan.

He made every single one of us feel like he was ours.

And that was one of the greatest things about him.

He was endlessly proud of his girls. And his great-grandsons brought him such joy. He wanted to know what we were doing, where we were going, what we were playing, what we were studying, what we were becoming. And no matter what it was, he was interested.

He showed up.

He watched.

He cheered.

Even if it was from FaceTime.

He also always sent us messages telling us what the weather was going to be that day, wherever we were. It made us a little crazy, but we knew one day we would miss it desperately.

And he loved us - loudly and completely.

I think that is what we will miss most.

Not just the big memories, but the feeling of knowing that somewhere in the world, there was this person who was always going to be ridiculously proud of us.

Grandpa spent his life building a family, making wonderful friends, telling stories, fishing, laughing, making sure the people around him knew they mattered, and loving his sweetheart, his Roe Roe, for 66 years.

And I know there were two people who were always at the very center of Grandpa’s heart - his boys.

Uncle Joe, who is here with us today, and Papa, who I like to think was waiting for him.

I hope wherever Grandpa is now, he’s with Papa again.

And he always told us he loved us “all the way up to the sky and back.”

So, Grandpa -

I hope you know that we love you exactly that far.

And I hope there’s a boat waiting for you wherever you are.

Maybe even the Someday Too.

We love you all the way up to the sky and back!”

There is a strange thing that happens when doctors start using words they are not quite ready to say out loud yet.

They don’t give you answers exactly.

They give you possibilities.

They give you referrals.

They give you blood tests and scans and genetic panels and the kind of sentences that start with, “We just want to rule something out…”

Which, as we all know, is medical code for:
Please remain calm while we quietly investigate something that we are not totally sure of, but it may or may not change your entire life.

Very casual.

Very relaxing.

Would recommend. NOT.

At the moment, there is a possible diagnosis floating around in the background of my life. I haven’t said exactly what it is yet, partly because we don’t know for sure, but it’s pretty likely, and partly because saying things out loud gives them a different kind of weight.

For now, it is still in the category of maybe.

A big maybe.

A maybe with genetic testing attached to it.

And genetic testing, in case you have never had the pleasure, takes approximately twelve thousand years to come back.

Technically, they told me four to six months.

Emotionally, same thing.

Of course, knowing this, I did what any calm, rational person would do.

I checked my patient portal the next day.

You know, just in case my DNA decided to be efficient.

It had not.

Apparently, my genes are taking their sweet time. Which feels a bit rude, considering they may have been causing quite a lot of drama for the last thirty-six years.

But here we are.

Waiting.

Again.

And the thing about waiting for potentially life-changing medical information is that it does not stay politely in one corner of your life.

It spreads.

It sits next to you at breakfast.

It gets in the car with you.

It follows you into conversations.

It creeps into your mind while you are playing violin.

It lies down beside you at night and whispers, “So…what are we doing with the rest of this life then?”

Which is a very large question for a random Tuesday.

When I first got sick, I didn’t really accept that I was sick.

Not in the big-picture way.

I accepted each individual thing as it happened, because I didn’t have much choice. The migraines. The seizures. The fainting. The pain. The appointments. The scans. The blood tests. The strange symptoms that sounded more like a medical drama than a real life, despite the fact that they were mine and I was living them. But in my mind, it was always temporary.

I thought I would be better in a few weeks.

Then a few months.

Then maybe after the next appointment.

Then maybe after the next medication.

Then maybe after the next specialist.

Then maybe after someone finally put all the pieces together and gave the whole mess a name.

I didn’t realize it at the time, but somewhere along the way, I started putting my life on hold.

Not dramatically.

There was no big announcement.

No official ceremony where I handed over my hobbies, dreams, energy, social life, career plans, travel plans, and general sense of self to the Department of Chronic Illness.

It happened quietly.

“We’ll do that when I feel better.”

“We’ll go there when things calm down.”

“We’ll plan that after the next test.”

“We’ll wait until we know more.”

Waiting is sneaky like that.

At first, it feels responsible.

Then it becomes a habit.

And then, if you’re not careful, it becomes a life.

I think losing my dad when I was young already taught me that nothing is guaranteed.

That lesson has been with me for a long time.

When you lose someone too soon - someone who should have had so much more time - you begin to understand that there are moments that divide a life. There is the world before the phone call...and then there is everything that follows.

But understanding that truth because it happened to someone you love is very different from understanding it because your own body has become the question mark.

That hits differently.

That gets personal.

That knocks on your own door.

And suddenly, all the things you thought you had time for begin to look different.

The trips.

The dreams.

The people you keep meaning to visit.

The conversations you keep postponing.

The version of life you keep telling yourself will begin once everything settles down.

But what if it doesn’t?

What if life never fully settles down?

What if this is the life?

Not the pause before the life.

Not the waiting room.

Not the unfortunate intermission with bad lighting and uncomfortable chairs.

This.

This life.

The one that’s beautiful one day, terrifying the next, and somehow ridiculous often enough to keep us laughing.

What then?

For us, one of the answers came in the form of a Land Rover Defender.

As one does.

Her name is Hira.

She is our land boat.

Which is, admittedly, a strange thing to call a car, but it makes sense if you know that before all of this, our dream was sailing.

We loved the idea of being on the water. The quiet. The freedom. The little harbors. The feeling of being carried somewhere by the wind.

It was romantic.

It was adventurous.

It was very us.

And then seizures entered stage right.

As it turns out, being alone in the middle of the water while your body may or may not decide to dramatically shut down is generally frowned upon.

So we changed course.

Literally.

We traded the idea of a sailboat for a Defender.

Still an adventure.

Less chance of drowning.

A practical choice, really.

Hira is not the most luxurious. She does not glide silently down the road like some elegant European machine.

She rattles.

She grumbles.

She has the aerodynamics of a brick with many opinions.

She is basically a tiny house, a tractor, a therapy office, and a very stubborn elderly dog all in one.

We love her deeply.

Because Hira (Healer in Japanese) gave us something back.

Not my health.

Not the life we had before.

But movement.

Possibility.

A way to keep going without pretending things were the same.

With Hira, we can travel at our own pace. We can stop when I need to stop. We can leave when we are able. We can turn around when we have to. We can find quiet places. We can off-road to the places where no one else can. We can bring what we need. We can make space for the reality of my body without letting that reality take everything.

And that has mattered more than I can explain.

Because when you are chronically ill, spontaneity becomes complicated.

Everything requires calculation.

How far is the walk?

Is there a place to sit?

What if my leg stops working?

What if I have a seizure?

What if the migraine gets worse?

What if I can’t get back?

What if I ruin the day?

What if my body becomes the problem again?

These questions can make your world smaller.

Not because you want it to be small, but because small starts to feel safer. And sometimes you don’t have a choice.

Hira made the world feel a little bigger again.

Not in the old way.

In a new way.

A slower way.

A humbler way.

A way that includes blankets, medication bags, snacks, emergency plans, beautiful mountain views, a hike or two, fur babies, and the occasional dramatic roadside nap…and a cheap violin to play around the camp fire when I can.

But still.

Bigger.

And maybe that is what I am learning now.

That life does not have to look the way you thought it would in order to still be yours.

Adventure does not always mean climbing mountains or crossing oceans or disappearing into the wilderness with perfect health and excellent hair.

Sometimes adventure is leaving the house when your body has made that difficult.

Sometimes it is driving an hour away and calling it a victory.

Sometimes it is sitting in the back of a Defender with a cup of tea, watching the sun go down, and realizing that for a moment, you are not waiting.

You are here.

Actually here.

I also want to say something to those of you reading this who are living with chronic illness, because I know what some of you might be thinking.

“That’s lovely, Jessi. But I can’t just get up and go.”

Neither can I.

Most days, my body decides what my day will look like long before I do. Some days that means I’m in bed. Some days it means I’m on the couch. Some days it means the biggest adventure I manage is taking a shower before I have to lie back down again.

This isn’t about pretending those realities don’t exist.

It’s about refusing to let them be the end of the story.

Maybe the adventure happens next week instead of today. Maybe it’s an hour instead of a weekend. Maybe it’s a scenic drive because hiking isn’t possible. Maybe it’s planning the trip before taking it. Maybe it’s simply allowing yourself to keep dreaming, even while your body is asking you to slow down.

There is a huge difference between respecting your limits and giving up on the parts of yourself that still long to explore.

I’m still learning that difference too.

Lately, with this possible diagnosis hanging over us, David and I have been talking more seriously about what we want.

Not in a dramatic bucket-list kind of way.

I have no interest in jumping out of a plane.

Honestly, with my current body, I feel like standing up too quickly already provides enough adrenaline.

But we have been talking about people.

Places.

Experiences.

Music.

The things we keep saying we will do “one day.”

Because “one day” has started to sound suspiciously vague.

We are realizing, again and again, that the things that matter most are not things.

They are moments.

Connections.

Roads.

Meals with people we love.

Conversations that go on too long.

Laughing in places we almost didn’t go.

Seeing something beautiful, even if getting there was complicated.

Waking up somewhere new.

Making music.

Letting ourselves want things, even now.

Especially now.

It is strange how often it takes something dramatic to make us ask the obvious questions.

What am I doing with my time?

Who do I want beside me?

What actually brings me joy?

What am I postponing for a version of life that may never arrive?

Why do we wait so long to take our own happiness seriously?

I don’t have the answers to the big medical questions yet.

I don’t know what the genetic tests will say.

Maybe they will give this whole thing a name.

Maybe they won’t.

Maybe the answer will be frightening.

Maybe the not-knowing will continue to be its own strange kind of torture.

Maybe I will open my patient portal one day, see the result sitting there, and immediately regret every single time I wished it would come faster.

That is the complicated thing about answers.

We want them.

We fear them.

We chase them.

We refresh the portal for them like absolute lunatics.

And yet, part of us knows that once they arrive, we may not be able to un-know them.

But whatever the answer is, this waiting has already changed something.

It has made time feel different.

More fragile.

More sacred.

Less like something endless I can keep borrowing from.

I used to think I was waiting to get my life back.

Now I am trying to understand that maybe I need to live the life that is here.

Not because I have given up.

Not because I have accepted some neat inspirational lesson wrapped in a bow.

Absolutely not.

I remain deeply interested in medical answers, treatment options, and yelling into the void when necessary.

But I am slowly accepting that waiting for certainty before you allow yourself to live is a very dangerous game.

Because certainty may never come.

Or it may come late.

Or it may come in a form you did not want.

And in the meantime, the sun is still setting.

The people you love are still here.

The dogs still want to be cuddled.

A cup of tea and or coffee still tastes better outside.

The road is still there.

Hira is still waiting in the driveway, slightly muddy and full of dog hair, looking far more confident than any vehicle with that many strange noises has a right to look.

And life, somehow, is still asking to be lived.

So I suppose this is the part where I tell you something I am also trying to tell myself.

Do not wait for your life to become perfect before you start living it.

Do not wait until your body is easier.

Do not wait until work slows down.

Do not wait until every question has an answer.

Do not wait until you feel ready.

Ready is unreliable.

Ready is often late.

Sometimes you just have to pack the medication bag, bring the snacks, make a plan B and C and possibly D, and go anyway.

Or stay, if staying is what your body needs that day.

That counts too.

The point is not to force yourself into some shiny version of bravery.

The point is to stop believing that joy only belongs to the healthy, the certain, the energetic, the uncomplicated.

Joy belongs here too.

In the middle of the unknown.

In the waiting.

In the body that is trying, even when it is failing.

In the plans that have to change.

In the adventures that look different than you imagined.

In the land boat that replaced the sailboat.

In the life you did not choose, but are still somehow building.

I don’t know what comes next.

I really don’t.

But I know that I don’t want to spend whatever time I have, whether it is long or short or beautifully ordinary, waiting for permission to live it.

I want the roads.

I want the people.

I want the music.

I want the ridiculous stories.

I want the sunrises and the campfires and the tiny moments that somehow become the big ones.

I want the life that is still mine.

Even now.

Especially now.

Because when we leave this earth, I don’t think we bring much with us.

Not the emails.

Not the clean house.

Not the things we bought to prove we were doing life correctly.

I think, if anything, we carry the love.

The places that changed us.

The people who stayed.

The moments we were fully, completely here.

So maybe this is not really a post about a possible diagnosis.

Maybe it is a post about what uncertainty reveals.

Maybe it is about the strange gift hidden inside the fear.

Maybe it is about a Defender named Hira, a husband who refused to let adventure disappear completely, and a life that keeps changing shape but still insists on being lived.

This part wasn’t in the score.

But apparently, there is still music.

And this time, I think it might sound a little bit like an old Land Rover rattling down an open road.

The waiting room isn’t always a room.

Sometimes it’s where you spend years learning to live with uncertainty.

I haven’t written here in a couple of weeks, and honestly, it’s because life has been a lot.

There have been more doctor appointments, more tests, more conversations, more research, more tests still to come. The lumbar puncture led to a CSF leak. The CSF leak led to an epidural blood patch. The blood patch led to a rare complication. Just to name a few things. (At this point, if my body were a TV series, we’d be well into a season of Dr. House!)

And somewhere in the middle of all of that, something unexpected happened.

We started looking at the bigger picture.

Not just what was happening right now, but everything.

My medical history. Childhood. Family history. The things that seemed unrelated. The things that didn’t seem important at the time. The things that had been filed away under “that’s probably nothing.”

And then, one by one, little bells started going off.

Ding.

Ding.

Ding.

You know those moments when someone says something and suddenly a dozen puzzle pieces click together all at once?

It has felt a little bit like that.

Of course, being me, I immediately launched into research mode. Paging Dr. Me!

The more we looked, the more connections started appearing. Not just connections to what I’m dealing with now, but connections to things my dad dealt with before he passed away at forty-four. Symptoms. Medical quirks. Things that had always been explained away as separate issues. As we dug deeper, what had once felt like separate stories started overlapping. Pieces of his history began shedding light on my own, and what we had always thought were unrelated details suddenly looked like they belonged to the same puzzle.

Now we’re waiting.

Because that’s how medicine works.

Appointments take time. Specialists take time. Testing takes time.

The good news is that my medical team has been wonderful. For the first time in a long time, it feels like people are looking at the whole score instead of individual notes.

And for the first time in almost four years, it feels possible that we may actually get some big answers.

I should be celebrating that.

Part of me is.

But the truth is, those answers may come with some heavy news.

For so long, the goal has been simple: find out what’s wrong.

What nobody tells you is that sometimes finding out what’s wrong can be almost as frightening as not knowing.

Because a diagnosis is never just a name.

Sometimes it’s a roadmap.

Sometimes it’s an explanation.

Sometimes it’s a relief.

And sometimes it’s a thing that changes the way you see your future.

So right now, we’re living in the grey area.

The space between questions and answers.

The space between hope and fear.

The space where nothing is certain yet, but somehow everything feels possible at the same time.

Oddly enough, this waiting has changed the way I look at things.

When you’re reminded that life may not be as long or predictable as you’d like to believe, the beautiful moments become sharper somehow. The ordinary moments become more valuable.

You savor things more.

You get angry about the hard things.

You allow yourself to be sad about the painful things.

And you love people deeply because you realize there really isn’t much point in doing anything halfway.

I know this post probably raises more questions than it answers.

For now, that’s where I need it to stay.

There are pieces of this story that still belong to appointments, tests, and conversations that haven’t happened yet.

But when I know more, I’ll share more.

You’ve walked alongside me through so much of this journey already, and I am incredibly grateful for that.

For now, we’re waiting.

And maybe that’s okay.

Sometimes the bravest thing we can do is learn how to live in the grey area.

Maybe that’s why I’m sharing this before I have all the answers.

Because I know I’m not the only one.

And if that’s where you are too, you’re not alone.

This Part Wasn’t in the Score...

But neither was learning that answers can feel just as complicated as questions.

After my last blog post, I wasn’t really prepared for what came back.

Messages.
Stories.
People opening up about pain, loneliness, illness, grief, survival.

So many people quietly carrying things I never would have known about.

And somewhere in the middle of reading all of those messages, something shifted for me a little.

Because yes, the last few months have been incredibly hard.
Physically. Emotionally. In every possible way, honestly.

But they have also reminded me of something important:

I am deeply loved.

And not just by David and my family and friends - although they have carried me through more than I can explain - but by this incredible community of people who continue showing up with kindness, honesty, humor, encouragement, and stories of their own.

There is something really powerful about people saying:
“I hear you.”
“Me too.”
“You’re not alone in this.”

And suddenly… you don’t feel quite so alone anymore either.

Around the same time all of this was happening, Belgium quietly decided to become beautiful again.

The grey lifted.
The light changed.
Everything started turning soft and green and golden.

And while my body still isn’t capable of the big adventures we had planned - Spain is officially postponed for now - we started trying to find smaller ways to still live inside the life we have right now.

That’s always been part of the reason we got Hira, our trusty Land Rover Defender, in the first place.

Not just for travel.
Not just for mountain roads and wild camping spots and beautiful views.

But for freedom.

For flexibility.
For slowing down.
For creating a life that could bend with chronic illness instead of breaking under it.

And lately, that adventure has looked a little different than we imagined.

It has looked like blankets and pillows piled around me outside in the backyard.
Long afternoons in the sun.
David grilling vegetables while the dogs patrol the perimeter hoping something hits the ground.

Tor living his absolute best sunbathing life.

Penny continuing her deeply personal war against the neighborhood cats.

It’s not Spain.

It’s not the version of spring we thought we would be having.

But it’s still us.

Still laughter.
Still love.
Still little moments of magic hidden inside difficult seasons.

And honestly?
I think I’m still learning that life doesn’t only happen in the big adventures.

Sometimes it happens quietly.
In slowing down enough to notice what’s still beautiful even here.

So no… things are not magically fixed.
My body is still doing its own chaotic little side quests.
We are still waiting.
Still in pain.
Still figuring things out one day at a time.

But I’m okay.

More than okay, actually.

Grateful.
Held.
Overwhelmed by the kindness people have shown me lately.

And hopeful that even if life keeps rewriting the score…

there are still beautiful notes hidden inside it.

This one is harder to write. But maybe that means it matters…

‘When Life Gives You Lemons’ kind of left off on a cliffhanger.

At the time, we thought it was a hematoma.

Turns out… it was. Just not the kind you casually walk off.

An epidural hematoma, stretching from my lower back all the way down to my tailbone, pressing on nerves in a way that feels like being stabbed by a thousand knives all at once.

There was a moment where everything narrowed down to one question:
Do we operate, or do we wait?

And somehow… “wait” became the answer.

Wait while your body tries to reabsorb something that shouldn’t be there.
Wait while the pain keeps showing up anyway.
Wait for months.

So now, we wait.

The meds to help with the reabsorption and the pain are strong.

Strong enough that they should work.

They don’t. Not really when it comes to the pain.

Because apparently my body decided we weren’t quite done here yet, one of the meds now seems to be triggering more seizures. But that’s not what sent me back.

The hematoma did.

Days of passing out. Vomiting. My body waving every red flag it had.

Until it finally forced us to listen.

But this isn’t really about the hematoma.

Not completely.

It’s about what happens when pain stops being a moment… and starts becoming constant background noise.

The kind that doesn’t fade out.
The kind that just keeps playing, no matter how much you want silence.

The kind that stretches from days into weeks, from weeks into months, from months into years.

Because this isn’t just two months.

It’s been three and a half years of my body rewriting the score without my permission.

And somewhere in all of that…

it gets lonely.

Not the obvious kind.
Not the “no one is here” kind.

The quieter kind.

The kind where you are surrounded by people who love you deeply…
and still feel like no one can fully hear what your body is going through.

The kind where your world gets smaller without you realizing it at first.
Where independence slowly turns into asking for help.
Where even simple things start to feel far away.

The kind where your thoughts get heavier.

And maybe that’s the part people don’t talk about enough.

How pain doesn’t just live in the body.

Over time, it starts taking up space in your identity too.

It changes the rhythm of your days.
The way you move through the world.
The version of yourself you recognize in the mirror.

There are moments where I feel like I’ve lost pieces of who I used to be somewhere inside all of this.

And honestly… I think that grief can feel just as heavy as the physical pain sometimes.

I’m not going to dress this up.

For the first time in my life, I understand something I never thought I would.

That place where people don’t necessarily want to leave life…

they just want the pain to stop.

That feeling of not knowing when it ends.
Or if it eases.
Or how much longer your body can keep carrying it.

And I want to be really clear -

I don’t want that.

But I understand it now in a way I didn’t before.

And that understanding… it changes something.

It softens how I see other people.
It makes invisible pain feel a little less invisible.

But there’s another side to that too.

The part that keeps me here.

The part that keeps me holding on, even on the days where it feels like too much.

David.

My rock. My foundation.

The one who steadies me when everything feels off balance.
The one who brings me back when I feel completely lost.

My family.
My friends.
My fur babies.

The people who remind me - over and over again - that even when my world feels small…

my life isn’t.

That even when my body feels like it’s failing me…

I’m still held.

Still loved.

Still here.

So for now…

we wait.

We wait for healing.
We wait for answers.
We wait for the pain to loosen its grip, even just a little.

And maybe this part wasn’t in the score…

but somehow, neither was the kind of love that carries you through it.

In the States, yesterday was May Day.
Here in Belgium, it’s Labor Day.

Same date… very different vibe.

Growing up, May Day meant one thing in our house: baskets.

Not metaphorical ones. Actual little baskets filled with flowers - the kind you hang on someone’s doorknob. A tiny burst of color. A surprise. Just something to make you smile before you’ve even had your morning coffee.

But there was a catch.

You had to ring the doorbell…
and run.

And I mean run.

We’d sneak up to front doors like we were on some kind of covert mission, hang the basket, ring the bell, and then sprint - diving behind bushes, cars, anything we could find - just to watch the moment they opened the door.

It was equal parts generosity and absolute chaos.

One year, we left a basket for one of my mom’s teacher friends - who is now basically family. We rang the bell, ran, and hid in the bushes, waiting for the big reveal.

Instead… she panicked.

Fully panicked.

Thought it might be something dangerous sitting on her doorstep.

So there we were, crouched in the bushes, realizing our sweet little May Day surprise had turned into a full-blown neighborhood threat scenario.

Safe to say… that one didn’t go exactly as planned.

Another year, we knew we had perfected the art of stealth.

A long driveway. A huge front window. The whole family sitting down to dinner in full view.

We crept along the side like absolute professionals, placed the basket, rang the bell, and disappeared into the night like May Day ninjas.

Flawless execution.

Or so we thought.

Later, we found out Vicki had seen us the entire time - and told everyone at the table not to move, not to look, just to let us have our moment.

Which, honestly, feels like the entire spirit of May Day in one story.

The joy wasn’t just in the surprise.
It was in the shared game of it all.

People started to expect our baskets.
And I think they loved it just as much as we did.

That little moment of brightness on a doorstep.
That tiny, unexpected “someone thought of you.”

I tried to keep the tradition going as I got older.

It changed a bit - as things do. Became more of a “virtual basket” some years, especially once I got sick. Which… isn’t quite the same as hiding in bushes, let’s be honest.

And then yesterday came.

And I didn’t do anything at all.

No baskets.
No messages.
Nothing.

And it hit me a little sideways.

Because that’s not really me.

But at the same time…
it’s also been a lot lately.

(And when I say “a lot,” I mean - if you read “When Life Gives You Lemons”… you know it didn’t exactly end there.)

So somewhere in the middle of all of that, I realized something I’m still learning in real time:

It’s okay to let yourself off the hook sometimes.

To not show up perfectly.
To not carry every tradition, every expectation, every version of yourself - all at once.

But…

I also don’t want to lose the parts of me that love things like this.

The small, slightly ridiculous, joy-filled traditions.
The doorbell ringing.
The running away.
The leaving something kind behind without needing to be seen.

So maybe it’s not about doing it exactly the same way.

Maybe it’s just about finding a way back to it -
in whatever way I can.

Even if it looks different.

Even if it’s smaller.

Even if next year it’s just one basket.

This part wasn’t in the score… but I think it still belongs.

Ding dong - Happy May Day (a day late).

I’ll leave this little basket here for you.

Wait… that’s not quite how the saying goes.

The last two months have felt a bit like life looked at me and said,
“Let’s see how many plot twists we can fit into one season.”

And honestly? At some point, it stopped feeling like a drama and started leaning into comedy. The kind where you’re not entirely sure whether to laugh or cry… so you just laugh because it’s easier.

It all started in February, with New York.

A week in Southampton - what I call “home home” - followed by a week in the city with Florian Leonhard Fine Violins and the New York Philharmonic. My sister was flying in from California with my nephews, and I hadn’t seen them since the summer. I was so excited I probably ignored every early warning sign my body was trying to send.

Mom and I stayed one night at the TWA Hotel - which, if you’ve never been, feels like stepping into a perfectly preserved 1960s dream. Think retro glamour, curved lines, flight attendant chic, and a literal airplane (Connie) turned cocktail bar.

Naturally, we had a drink inside the airplane.

Naturally, we went to the rooftop infinity pool.

Naturally, it was freezing outside because New York had just had a massive snowstorm.

But the pool was heated, and it overlooked the runway at JFK, and planes were taking off into the night while the moon rose, and it was kind of magical.

(Was the drastic temperature change a good idea for me? No. Did we do it anyway? Yes.)

The next morning, we met Alyx and the boys, and within hours… we were back in the pool.

This time with wind.

Aggressive wind.

But again - magic.

Then we headed to Southampton.

Dory immediately wanted to go play in the snow. The rest of us wanted blankets and tea. He won. We watched him create his own little world out there, and it felt like stepping back into our own childhood - those endless snowy days where imagination did most of the work.

We sledded, baked cookies, went ice skating, saw friends… and then, of course, I woke up one morning and just knew.

Ah. Yes. There it is.

The crash.

Fever. Cough. That unmistakable “you’ve done too much and now you will pay for it” feeling.

Did I slow down?

Of course not.

Because nephews.

We had tea parties with our old bunny tea sets, dug through childhood toys, and lived in that sweet little bubble of memory and chaos. It was worth every second.

Then came New York City.

A sister night. Dinner. Wandering. Ending the night curled up in the big cozy hotel bed watching the Olympics, laughing because it felt like being kids again in Mom and Papa’s bed.

And then… back to reality.

A few hours before an event with the New York Philharmonic, I found myself in urgent care with sharp chest pain.

Diagnosis: pneumonia.
And a broken rib.

Because apparently, just one thing wasn’t enough.

Naturally… I still went to the event.

(Not my best decision, but also very on brand.)

I somehow made it through the rest of the trip, fever and all, and finally headed back to Belgium - miraculously upgraded to first class, which, I have to say, is exactly what you want when flying with a broken rib. Small wins.

And then… I had a seizure.

Which, for anyone wondering, is not ideal with a broken rib.

A few days later, I checked into the hospital in Ghent for a planned week-long video EEG - the kind where they try to provoke seizures.

Naturally… nothing.

No seizures.

But plenty of migraines.

And, just for fun, an allergic reaction to the electrodes glued to my head.

Welts. Everywhere.

The highlights? They let me play violin… and at one point, encouraged me to drink wine.

So, you know. Balanced.

They adjusted my medications, which meant my body and emotions were doing their own experimental improvisation piece.

And somewhere in the middle of all of that, I went to see a hematologist.

Because, naturally, my iron levels were extremely low and I was quite anemic.

So, we did an iron infusion. Simple enough. I’ve had them before when I was younger.

All seemed fine.

Until the next day.

When I woke up with what felt like the flu - except turned up to a level that felt slightly unnecessary. High fever, body on fire, unable to stand without immediately feeling like I would pass out or throw up.

That lasted three days. Three very long days.

Turns out… I’m allergic to iron.

Which feels like a design flaw.

You know. The very thing my body apparently needs but refuses to absorb on its own.

So next time, it won’t be quite so simple. There will be tests, special orders, pre-medication - the whole production.

Because apparently, even the solutions come with plot twists.

And then - about a week later -
boom.

A massive seizure.

Of freaking course!

Because life has its own sense of timing.

Somewhere in the middle of all of this, we escaped to Salzburg for a few days, and it felt like breathing again. Like stepping into something light and beautiful and necessary.

Which made what came next feel even more dramatic.

A thunderclap headache.

And when I say thunderclap, I mean it. Sudden. Explosive. The kind of pain that drops you to the floor before you even understand what’s happening.

Then came the left-side paralysis. My face. My speech.

David wanted the ER.

I wanted denial.

We compromised… by me emailing my neurologist the next day.

She responded with what can only be described as:
“Absolutely not. Come in immediately.”

(In hindsight, I should have listened to David)

So I packed a bag - because at this point, I’ve learned - and went in.

Within minutes: full team, scans, tests.

Stroke was on the table. Then ruled out.
Next possibility: a leaking aneurysm.

Which, given my dad’s history, felt like a particularly cruel narrative twist.

We waited.

In the end: thunderclap headache, likely hemiplegic migraine (the most severe and dangerous type of migraine…great).

Two days later, I was sent home.

(Oh - and somewhere in there, a call from my gynecologist: “Based on your MRI from a few weeks ago, you indeed have deep endometriosis.” Because why not add another subplot.)

But wait… the story doesn’t end there.

Of course it doesn’t.

(Are you laughing yet?)

The day I got home, I noticed something felt off. Head pounding. Ears ringing. Worse when standing, better lying down.

I knew.

CSF leak (Cerebral Spinal Fluid Leak).

By Easter Sunday, I was back in the ER - this time confidently requesting a blood patch like it was on a menu.

They suggested fluids and caffeine.

I said, respectfully, no thank you (caffeine is one of my migraine triggers).

We went with the patch.

Which involved a needle in my spine, multiple attempts to draw blood, and my nervous system deciding halfway through that it would simply… shut down.

Blood pressure dropped. Near blackout.

All very dramatic.

But we made it through.

Then three days flat in bed.

And just when things started to stabilize… rebound headache.

Because apparently, even fixing the problem comes with a side effect.

And just to really commit to the theme…

It seems the blood patch may have come with its own little encore.

Apparently, the extra blood that was pushed into my back decided not to simply… stay put. Instead, it most likely settled somewhere in my lower spine, possibly forming a small hematoma, and is now pressing on a nerve - and getting on all of mine!

Which translates to shooting pain down my back, into my legs, and making standing feel like a rather ambitious activity.

It also adds a lovely amount of pressure in my lower back, which, for my dysautonomia, is basically an invitation for my nervous system to completely overreact.

So, you know those warning labels they put on things that everyone ignores?
Or when a doctor casually says, “this very rarely happens… maybe 0.01% of patients”?

Well.

I’m starting to think those are written specifically for me.

So here we are.

Two months.

Pneumonia. Broken rib. Seizures. Hospital stays. Iron flu. Thunderclap headache. CSF leak. Blood patch. Nerve drama. New diagnoses.

It’s a lot.

And if I’m honest, somewhere in all of that, there’s been frustration. Guilt. That feeling of being a burden, even when you know you’re not.

There’s been sadness. And anger.

But also - somehow - still hope.

Because in between all of it, there were moments.

Snow days. Time with Mom. Sister nights. Music. Salzburg.

Laughter that felt like childhood again.

A saint of a husband. Friends who never stop checking in. Fur-babies that always bring a smile.

And maybe that’s the thing I keep coming back to:

Even when everything feels like it’s falling apart…
there are still these small, stubborn, beautiful moments that refuse to disappear.

And for now… that’s what I’ll hold onto.

The rest feels a bit like improvisation.

This Part Wasn’t in the Score…

This isn’t the kind of story I usually tell here, but it lives underneath all the others.

Today marks 19 years since we lost my dad.

Nineteen. Which somehow feels impossible and also exactly right.

Last week, David and I were in Salzburg. The last time I was there (22 years ago), I was with Papa, Mom, and Alyx - when I was studying at the Mozarteum summer academy.

We walked through Mirabell Gardens. I found a photo of him there. I stood in the same spot and tried to recreate it. Same place, completely different life.

We wandered the streets, made our way up to the castle where we once heard a concert, and I kept thinking about those days - riding my bike along the river from our flat to rehearsals, to concerts, to everything that felt like the beginning of something.

It all came back in little flashes I hadn’t visited in years. Quiet, unexpected, and somehow exactly what I needed this time of year.

It felt like a small gift - to walk those same paths again, to feel him there in a way that was soft but unmistakable.

I wrote the piece below a few years after he passed. I’ve shared it before, but reading it now, I realize I still can’t say it better than this younger version of me did.

So I’m sharing it again (and again!).

I can’t believe I have now lived more than half of my life without you Papa. A weird realization, but at the same time knowing that memories are magic and somehow ours keep you alive in some alternate universe.

So…here goes.

I remember hearing the news and feeling completely stunned. I felt as though I left my own body behind, and was hovering slightly above myself, watching the scene unfold like some horrible movie.

I felt like I was going to be sick. I wanted to shout No! at the doctor. I really wanted to refuse to believe it was happening. I kept thinking, this shouldn’t be happening to us. It didn’t feel real.

Somehow, we stumbled through the first days. Completely raw. I wondered how it was possible to keep breathing and moving forward myself. It actually felt as though each breath I took was a victory. It felt amazing how the rest of the world could keep going forward: people rushing to work, the earth continued to circle…

Sitting through the services, organising what had to be organised. Not realizing in those moments, that there was some cottony cloud of shock that made it all feel unreal, as if to protect my heart from the actual pain. I did not realize how much worse it would feel once that too left.

I remember listening to people saying their well-meaning words, I know they meant well and truly wanted to comfort us. Things like, “He is in a better place now. It was God’s will. Be strong.” I basically learned that they are saying these words because they want to feel along side you, and they want to say something that makes you feel better, but they really don’t know what other words to say than that.

Because it hurts way too much to say the actual truth: this is terrible. this is horrible. I don’t know how you will survive this. How could this happen?

I remember walking to the beach with some friends after the funeral and for the first time standing at the waters edge and saying, “My dad is dead. Papa died.”

These words nudged me across the bridge from my old life, where Papa was there and alive, to my new life, where he no longer would be. I freaking hate this bridge, but there is just no way to turn back. This is the bridge we are on, and we have to walk across.

I tried to hold it together as much as I could, but I fell completely and utterly apart. My family fell completely and utterly apart, all the while moving forward.

I imagined the rest of my life, all the love and loss, and weddings and births, the vacations, and concerts, failures and successes, and just how damn bittersweet every event of my life would be because Papa would not be there.

Why me? Why us? I remember asking over and over again….the answer never really came. I decided it was because of the support system we had. Somehow, he had to go away, and somehow, we would survive.

I remember going for long walks. I would refuse to step on bugs, a worm, an ant. Because maybe there was someone back home waiting for them, some worm child, or ant wife, and I couldn’t bare the the thought of adding more grief in the world, even to the invertebrate world.

I was afraid to sleep, but at the same time longed for dreams. I might dream Papa alive again, and for just a sliver of a second, when I would wake up, between sleep and consciousness, I felt like he was still here. And then, the realization would come thundering down again.

I then started to notice, that despite all of the pain, that small scraps of beauty; a star, a sunrise, a sunset, the smiling and singing face of a stranger at a stoplight, the ocean…I let it wash over me, and started to feel that somehow I would be ok, we would be ok.

I discovered that there is a silent army. This army stretches across the world made of people who walked across the same bridge that I did, and my mom did, and my sister did, and my grandparents did, and my uncle and cousins did. I felt, for the first time in a very long time, that we were understood by these people. We were not alone. It is a sort of unspoken, but felt and supportive club. A club I wish on no one.

Approaching the first anniversary of his death. I felt it coming. It loomed over me like a portal taking me back to the day. You want to stop it from coming, because maybe if it doesn’t arrive, it never happened. But alas, you meet the day anyway.

I remember going down to the ocean, talking to Papa as if the ocean’s waves brought my words to him, I ate a slice of pizza, because we always stopped for pizza on the way home from Juilliard, just trying to feel as close to him as I could.

I remember going to sleep that night and thinking, ok, one year down, tomorrow wont hurt as much. Then waking up the next day, surprised that it still hurt just as much, surprised that we actually survived a whole year without him.

So, all you can do, is keep living and moving forward. Let time pour over you and do what nothing else can - soften the constant throb of the place Papa occupied. Let it push us across that shitty bridge. Let it show us what is still here - our love, our hearts, our family, our friends, our dreams, our talents, a future that is not necessarily the one we planned on, but the one that is, nonetheless, waiting for us.

I noticed that I hadn’t cried in a a few days, a few weeks. I felt grateful for the incredible strength of the human spirit, for the press on and on and on.

Do what Papa taught us to do (and of course Mom as well!)…Build something strong and beautiful because we are strong and beautiful. Whisper, I miss you. Smile at a stranger walking down the street, because maybe he is where you were a year ago.

I can now stand back and stare at the bridge we have somehow crossed. I was there, and there, and now here. I feel mostly accustomed to it now, not that it will ever go away. I feel strong, except on anniversaries, and some cold and rainy Tuesdays.

I feel like losing Papa has seasoned me, sharpened me, sweetened me, strengthened me. It has carved me into someone who is more wary, but also more awake. More essential.

I realize that each of us is stumbling across our own bridge. That this world is not for the faint-hearted, and it might not be the one we’d choose, but it is the world we are in.

I know that I have crossed this bridge and my life is so worth living and that Papa would be so proud of me, mom, and Alyx. I know that he is looking down on the strength that we have and smiling. He is proud of our accomplishments and the dreams we have made come true.

And even though we have learned to live with this pain on a daily basis, and have learned to carry on, there is not a day that goes by that my heart doesn’t feel the pang. I am not over my grief, and I never will be. However, I am grateful. I try to look at my grief as a gift because it has caused me to feel deep, raw emotions. And those feelings remind me that an aneurysm didn’t erase Papa from my memories. Yes, death fucking sucks, but through the memories and a whole lot of tears, Papa feels closer than ever.

He (and Mom too!) always told us to follow our dreams and our passions, even if it’s not easy. Fly as high as you can, because you can make a difference and do anything you put your mind to. He taught us to love unconditionally. I am so glad this is what I have been taught since the beginning. Today I will smile a little bit brighter, laugh a little bit louder, and remember…

This Part Wasn’t in the Score… but the music lives on

I walked into the waiting room at 10:00 in the morning and within about three seconds thought… ah. This is not going to be ideal.

Not the appointment - that had been on the calendar for weeks.

No, it was the timing. The room was full.

Not “a few people scattered around” full.
No. This was one chair left full.

You know the kind.

The kind where you pause in the doorway just a second too long, scanning the room like maybe - just maybe - another seat will magically appear if you look hard enough.
The kind where you suddenly become very aware that you don’t get to choose where you sit.

And somehow… that feels deeply unfair.

There it was.
The last remaining chair.

I sighed internally - guhhhhh, whyyyy - and made my way toward it.

Now, under normal circumstances, this would have been mildly annoying.

But this was not a normal morning.

I’d had a full-blown migraine earlier that morning. Not the kind that disappears - more the kind that sticks around like, “don’t worry, I’m not done yet, and I’m not going anywhere.”

Every sound felt sharp.
Every light a little too bright.
Every movement… amplified.

Like my nervous system had turned into an over-sensitive microphone, picking up everything and feeding it back at full volume.

So I sat down.

Next to a very sweet elderly couple.

Who, unfortunately, had their phone volume set to… maximum life.

DING.

A message.

He picked up the phone.

Pressed something.

Nothing.

“I am doing it,” he said, while very clearly not doing it.

She leaned over, giving instructions.

“I am!” he repeated.

She took the phone. Fixed it immediately.

They both smiled and read the message together.

Honestly… it was kind of adorable.

DING.

Round two.

Now, I won’t lie - my head was not thrilled.

But they were so sweet in that very specific, slightly chaotic, long-married kind of way that I couldn’t even be properly annoyed.

Luckily (for me and my migraine), they got called in pretty quickly.

And the room quieted again.

I sat there for a moment, trying to settle into my breathing, eyes drifting around the space.

And then something shifted.

It was like I stepped slightly outside of myself.

Like I wasn’t just sitting in the waiting room anymore -
I was observing it.

A quiet little fly on the wall.

And suddenly, everyone became… a story.

To my left, a couple deep in conversation - leaning toward each other, smiling, even laughing.

In a neurology waiting room.

There was something so unexpectedly comforting about that.
Joy, just… existing. Right there.

Across the room, near the hallway, a woman sat beside an elderly lady in a wheelchair.

The kind of presence you don’t have to question.

You could feel the care.

The way she looked at her - so softly and attentive, grounded.

The elderly woman had a bandage on her head and, at one point, she drifted off.

For a second, my chest tightened.

But then a doctor passed by, and the woman beside her just smiled, gave a small giggle, and shrugged - as if to say, We’re okay.

A few minutes later, the elder woman stirred.

Lifted her head.

Smiled.

And in that tiny exchange, there was something so steady.
So safe.

Such a simple thing - sitting next to someone in a waiting room.

And yet… everything.

Then -

A sound.

A scratching noise from a few chairs down.

At first, I assumed it was a child drawing.

You know how we all do that subtle side-glance, trying not to be obvious?

I turned my head just enough to see.

And there she was.

Filing.

Her nails.

In the neurology waiting room.

I blinked.

Surely… not.

But yes.

She was committed.

A full five minutes of filing.

And then I had this thought:

Wouldn’t it just be the absolute kicker if she pulled out nail clippers?

…

I’ll let you guess what came out next.

The man sitting to my left - quiet, lost in his own thoughts - caught my eye at that exact moment.

We exchanged a look.

The kind of look that says everything without saying a word.

And then -

A shared, silent: are you seeing this too?

It was perfect.

And just like that -

My name was called.

I stood up.

Walked toward the door.

And left my seat behind for the next person entering the room, scanning for somewhere - anywhere - to sit.

And I couldn’t help but think:

Waiting rooms are strange places.

They’re in-between spaces.

No one wants to be there.
Everyone is there for a reason.

And yet, inside them, life keeps happening.

Love shows up in small gestures.
Strangers share quiet moments.
Laughter sneaks in where you least expect it.

Even nail clippers make an appearance.

For a brief moment, we’re all sitting together -
holding our own stories,
our own worries,
our own hopes.

A room full of people.

Each carrying something unseen.

And then, one by one,
our names are called.

I’m writing this from a hospital room - which, honestly, feels oddly fitting as today is Rare Disease Day.

I’ve been here for a few days now, hooked up to 24/7 video EEG monitoring, letting doctors watch my brain and try to catch what my seizures are doing.

This stay was already scheduled. It’s part of the long process of trying to get answers.

Still, the fact that it lands on Rare Disease Day doesn’t feel accidental.

Two weeks ago, I was in Southampton and New York City. I was with family. Walking the city. At an event with the NY Philharmonic for the violin shop (Florian Leonhard Fine Violins). Trying to soak in every bit of it.

I loved being there.

But (of course!) I was also sick.

I ended up with pneumonia while I was there, and I pushed through most of the trip anyway. Because that’s what you do sometimes.

Because you don’t want to miss it.
Because you don’t know when you’ll get the chance again.
Because sometimes you’re just tired of your body setting the limits.

With a normal immune system, maybe it would have been a rough week and then done. For me, it doesn’t work like that.

By the time I got home, my body crashed. Hard. Recovery dragged out. Everything hit heavier. A broken rib layered itself right on top of it.

And in the middle of all that, I checked into the hospital for this week of seizure testing that had already been on the calendar.

That’s part of rare disease life too. Hospital stays aren’t always emergencies. Sometimes they’re planned. Sometimes they’re just the next step in trying to understand a body that doesn’t follow the usual rules.

Living with rare disease means holding two realities at once.

I can love my life.
And my body can make it complicated.

I can be grateful for the memories.
And still deal with the consequences.

When people hear “rare disease,” they think of statistics.

Awareness posts.

Something distant.

But for those of us living it, rare is daily life.

It’s the constant calculations.
The “can I afford this physically?”
The recovery that takes longer than it should.

The appointments. The testing. The advocating. The explaining.

And the not knowing.

There is still so much that isn’t understood. Research is limited. Treatments aren’t always clear. Answers can take years.

Some people are still fighting just to be believed, let alone diagnosed.

That’s why today matters.

Rare doesn’t mean insignificant.
It doesn’t mean exaggerated.
It doesn’t mean “not serious enough.”

It means there’s more to learn.

More research needed.
More listening.
More awareness.

A lot of rare diseases are invisible.

You can’t see the neurological storm. You can’t see the immune system that doesn’t bounce back. You can’t see how much effort it takes to just function normally.

But invisible doesn’t mean it isn’t real.

If anything, living this way has made me more aware. More persistent. More willing to advocate - sometimes loudly, sometimes quietly, but consistently.

It’s also teaching me that pushing through isn’t always strength (thought I am still bad at not pushing!). That resting isn’t weakness. That listening to my body is something I’m still figuring out.

And still - I choose to live.

I take the trip.
I see my family.
I walk the city.

Even if I move slower.
Even if I recover longer.
Even if it means hospital rooms and wires and more questions.

Rare disease doesn’t cancel joy. It just makes you more intentional about it.

So today, from this hospital room that was already part of the plan, I’m thinking about everyone else living with something rare - diagnosed or still searching.

The ones who are tired.
The ones who are advocating for research that doesn’t yet exist.
The ones who look “fine” but are fighting quietly.

You are not invisible.
You are not dramatic.
You are not alone.

Rare matters.
Research matters.
Listening matters.

And so do the lives behind the diagnoses.

This is what rare looks like for me right now.

Not just surviving.

Still living.

This Part Wasn’t in the Score…
But maybe it’s the part that reminds you that you’re still here - still playing.

Valentine’s Day came and went in its predictable blur of roses and heart-shaped everything.

And while I’m fully in favor of chocolate and romance, I’ve been thinking:

Saint Valentine’s got nothing on Saint David.

Scooch over, sir. Make a little room.

There’s a saint living in my house.

He shows up with car keys in his hand.

He drives me everywhere - hospitals, specialists, appointments that seem to multiply overnight. He sits in waiting rooms without complaint. He remembers the questions when my brain is foggy. He keeps track of the things I’m too tired to hold onto.

And somehow, he refuses to let our world shrink.

He makes sure we still take Hira out - our beloved Land Rover Defender loaded up like we’re heading on safari, even if it’s just a quiet drive somewhere beautiful.

He keeps adventure alive in us.

Even the grocery store becomes an outing.

Because sometimes buying milk is my big event for the week.

So we wander. We laugh. We pick something unnecessary but delightful. Fluorescent lighting and all.

He takes care of the dogs. The house. The thousand tiny, unglamorous things that keep life moving.

Not loudly. Not for credit.

Just because.

Sure, he wishes I would get better. I know he does.

But he has never once wished for a different life than one with me in it.

If anything, it feels like he loves me more fiercely in the middle of this - and my love for him has only deepened and strengthened in the fire of it all.

There is a kind of love that thrives when life is simple.

And then there is the kind that steadies itself when life changes key.

The kind that says, “Alright. This is the tune now. Let’s play it.”

This part wasn’t in our score either.

But he keeps playing.

Scooch over, Saint Valentine.

There’s a Saint David in my house.

And I am endlessly grateful.

I would choose him - in every life and in every version - every time.

🤍
J.

My dearest readers,

It’s been a little quiet here.

After Christmas, I needed to travel, then rest, then rest some more.

Pneumonia and a broken rib made sure of that. Sometimes the body insists on a pause, whether we schedule it or not.

And maybe this is fitting timing for a post like this one. This stretch of the year - after the Christmas sparkles fade (even though we try to carry them through the year) but before spring fully arrives - can feel strangely heavy. A little grey. A little dull. The kind of season where things surface.

Very early on in this blog, I talked about some of the things that have helped carry me through the last few years - living with autoimmune diseases, chronic illness, seizures, and what feels like a snowball of a health saga that just keeps rolling downhill, gaining speed whether I ask it to or not.

About six months into it all, David and I were talking one day and even though I was still, on the surface, remarkably positive and calm, I could feel these dips starting to happen. Dips that weren’t normal for me. The kind where you think, Hmm… this note feels off. I didn’t mean to play this one.

At the time, I couldn’t quite put my finger on why and it felt like I was starting to lose a bit of control.

Part of it, of course, was that I was being dragged through the wringer with medications.

So. Many. Medications.

And some of them come with side effects that are honestly wild - things that mess with your emotions, your reactions, your sense of self. One in particular sent me spiraling into a depressive state.

Now, I’m not someone who has dealt with depression myself personally (something I am very grateful for). This was the closest I’ve ever come. And while I still don’t pretend to fully understand what people who live with depression experience every day, I learned enough to know this: it takes an enormous amount of strength to keep going. To keep playing when the tempo suddenly drops and the lights feel a little (or a lot) dimmer.

I send courage and warmth to those of you who need it most. And to those who can ask for help - I applaud you. Truly. And for those who can’t yet, I send patience and the reminder that you are not alone, even when it desperately feels that way.

Once I realized that this shift in me wasn’t me, but the medication, I said NO WAY. Get me off of this. Of course, you can’t just cold turkey that shit. You have to taper. Slowly. Carefully. A lot of these strong medications can do more damage if you don’t respect that process. And honestly? Sometimes the side effects are worse than the disease itself. Which feels wildly unfair, but here we are.

There have only been two medications they’ve put me on that were absolute no-gos. This was one of them.

Not long after, we went to our house doctor - our patron saint at this point - and asked for a therapist recommendation. It was time. She suggested someone who works specifically with people dealing with chronic illness and different types of illnesses. I was skeptical. I was still very much in denial that I was chronically sick. But if she recommended her, I trusted that.

I didn’t expect much going into that first appointment. I’d tried therapy before, after my dad passed, and honestly…it sucked. Wrong person. Wrong fit. I got more out of acupuncture back then (which I will also talk about at some point).

But this time?
It exceeded my expectations by miles.

I’ve always believed that everyone should have someone to talk to - someone who isn’t part of your daily world, who can listen without judgment or assumptions, and who is there simply to support you. But walking out of that appointment, I believed it even more deeply. Even the most stable, level-headed, “I’ve got this” person can benefit from having a space to unload. You don’t realize how loud the background noise has gotten until someone helps you turn the volume down.

Now, I go even when I’m okay. Not weekly. Just intentionally. And when things feel heavier - when there’s a little rain cloud following me around - I make sure I go.

She’s given me tools. For daily life. For coping with a version of life that looks nothing like what I imagined three and a half years ago. For grieving dreams that changed not by choice, but by necessity. For handling the guilt. For staying me through all of this - even when the key changes mid-phrase.

There’s also something about therapy that I think doesn’t get talked about enough. There’s a stigma around it - this idea that if you go, something must be seriously wrong with you. That you’ve failed at handling life on your own. That you’re broken. Or weak. Or “too much.”

But the truth is, a lot of people who choose to go to therapy are the ones who have been holding it together for a very long time.

They’re the ones who keep showing up. Who keep functioning. Who keep smiling and saying “I’m fine” because it feels easier than explaining the whole story. They’re the ones who don’t feel like they’re allowed to fall apart, because everyone else seems to be leaning on them.

And then there are the people who are really hurting - the ones who feel heavy in ways they can’t name. Who feel lost, or numb, or exhausted by their own thoughts. The ones who lie awake at night replaying everything, or wake up already tired, or feel like they’re failing at a life they never expected to be living.

If that’s you, I want you to know this: needing help does not mean something is wrong with you. It means something happened to you. Or changed. Or became heavier than one person should have to carry alone.

Therapy isn’t about being “crazy.” If anything, it’s often the most sane response to an overwhelming set of circumstances. In fact, some of the most grounded, self-aware, emotionally intelligent people I know are in therapy - the ones who simply realized they don’t have to carry all of this by themselves.

You don’t have to be at rock bottom to deserve that space.

I know there are so many reasons people hesitate. Time. Money. Fear. The exhaustion of explaining your story one more time. Or the quiet voice that says, Other people have it worse - I should be able to handle this.

If any of that sounds familiar, you’re not alone. Truly. Sometimes you just need a place where your thoughts can land without judgment. Where your experience is believed. Where you don’t have to translate yourself.

If you’ve been considering it, maybe this is your sign.

This Part Wasn’t in the Score…
But maybe it’s the part that helps you keep playing when everything else feels too heavy.

By the time Christmas ends, I’m usually a little tired.

Not the dramatic, collapse-on-the-floor tired - although that does happen - more like the soft, end-of-a-concert tired. The kind where you exhale, look around, and think: Okay…what do I want to carry forward from all of this?

Because somewhere along the way, I realized something important (and honestly, kind of comforting):

The magic I grew up with was never meant to live only in December.

It was always meant to spill over.
Into January.
Into ordinary Tuesdays.
Into quiet nights on the couch when plans change and pajamas win.

And these days, I don’t carry it alone.

Today is our fifth wedding anniversary. Thirteen years together. Thirteen years of choosing each other - through big adventures, small routines, unexpected detours, and a whole lot of laughter.

David is my best friend. Truly. The person I want to tell everything to first. The person who makes even the most mundane moments feel like they count.

When we first met, Christmas magic was very much my thing. I was already mentally decorating, humming carols, and planning lights while he was… not. At all. He tolerated my enthusiasm lovingly, but Christmas sparkle was not high on his priority list.

Fast forward a few years - and now he’s the one reminding me. Turning on the music. Suggesting the lights. Keeping the joy alive when my energy dips.

Somewhere along the way, it became shared.

And that matters more than ever.

We learned that early on, in a way we never expected.

We were supposed to get married in April of 2020.
And then…well. The world shut down.

Plans disappeared. Dates moved. Rules changed. And eventually, we reached the simple, grounding truth underneath it all:
a wedding is about the marriage.
About the two people choosing each other.

So we picked a new date - December 29th.
Right between Christmas and New Year’s.

It felt oddly perfect.

There were masks and paperwork and rules and proof-of-everything. My mom somehow made it from New York to Belgium through what felt like a small miracle of determination and documents. My sister couldn’t come - but we found out she was pregnant instead, which felt like the best wedding gift imaginable.

Our family and friends from the states watched on Zoom, wrapped in blankets and pajamas in the middle of the night. And when we arrived at town hall (in Borgerhout), family and friends were waiting outside - knowing they couldn’t come in, but wanting to be there anyway.

And then, unexpectedly, the doors opened.

Because of a technicality. A rule. A small kindness.
Suddenly, everyone waiting outside was allowed in.

It wasn’t the wedding we planned.
But it was absolutely the one we were meant to have.

Even then - especially then - the magic showed up.
Not loud or flashy.
Just real.

Living with chronic illness means flexibility isn’t optional - it’s a way of life. There are days when plans fall apart, energy disappears, and the only reasonable option is staying in. And instead of disappointment, we light a candle, curl up on the couch, maybe turn on a Christmas movie (yes, even out of season), and make the evening feel special anyway.

Because it is.

The magic doesn’t disappear when plans change - it just asks for a different shape. Sometimes it gets quieter. Cozier. Softer.

And then there are the other days - the good ones. When we travel, explore, wander new cities at our own pace, meet friends along the way, and laugh until our faces hurt. We’re very good at adventuring slowly. At finding joy without rushing. At letting life unfold instead of forcing it.

We even work together - which people love to warn you about.
Don’t work with your spouse, they say. You’ll have nothing to talk about when you get home.

Honestly? We never run out of things to talk about. Or laugh about. Or dream up next.

Building something together has only made us closer. The work, the life, the love - it’s all intertwined.

And that’s kind of the point, isn’t it?

We’ve learned how to hold each other up. How to lean when needed. How to adjust the tempo without losing the melody.

That’s what carrying the magic looks like now.

It’s not louder than before.
Just deeper.
More intentional.
More shared.

And yes - at Christmas time, there’s still extra sparkle. (Cue the music) All the lights and decorations. Put up in anticipation. (I warned you. Serious Christmas dork.) But the truth is, we keep that magic alive all year - in the way we show up for each other, in the way we make room for joy even when things are hard.

Especially when things are hard.

So this is the future of the magic for me.

Not perfect or fragile.

Not something I have to carry on my own.

Just love.
Shared.
And glowing quietly - all year long.

To my favorite person, my partner in all things -
from couch nights and dog-Defender adventures to making music together with our dear Boho Strings.

I love you - forever plus one day.
Happy Anniversary David and thank you for the magic. 🤍

In Part 1, I said that I think a lot of my belief in Christmas magic started long before I understood it.

This is where it all began…

It probably started earlier than December ever officially did.

You know that moment after Halloween, when the stores suddenly explode with Christmas decorations and people say things like, Seriously? Already? Isn’t this a bit early? - and I nod along, pretending to agree?

Yeah. That’s not the whole truth.

Because secretly, in my head, there are little sugar-plum-fairy–gum-drop creatures doing a full choreography of Joy to the World. I’m already reaching for my headphones and cueing up Sinatra Christmas. I don’t say it out loud. I play it cool. But inside? Christmas has begun. Shhh. Don’t tell anyone.

That feeling didn’t come out of nowhere.

From my very earliest memories, Christmas was magic - not because everything was perfect, but because my parents made it so, deliberately and lovingly, year after year.

Even when we were really little and traveled from New York to Kansas to visit my mom’s side of the family, there was no shortage of magic. Flights could be delayed. Sometimes they were canceled due to snow. Sometimes we slept in airports. And yet - Santa always found us. Always.

Somehow, no matter where we were, Christmas showed up.

My mom was especially good at this. (Sorry, Papa - you were great too, but Mom had a particular talent for keeping the wonder alive.) She had this way of smoothing things over, of turning inconvenience into adventure. And so Christmas never felt fragile. It felt…dependable.

That sense of magic only deepened at home.

My parents didn’t just decorate for Christmas - they created it. Once December arrived, our house slowly transformed. The outside world could be cold, chaotic, loud - inside, there was warmth, twinkle, and a sense that time moved just a little more gently.

And then there was the tree.

For years, we went to Santa’s Tree Farm, which as a kid felt less like a place and more like stepping into another world. We’d wander through rows and rows of trees until we found the one. It always had to be a Fraser fir. Always. Not too green, just a little bluish. Perfectly shaped. No substitutes accepted.

Once we tagged it, we’d head inside to meet Santa - and I swear, they always had the best Santa. Real beard. Incredible personality. Completely convincing. Honestly? I’m still not ruling out the possibility that it was actually him.

There was hot chocolate piled high with marshmallows or hot apple cider, ornaments to admire, and somehow we always left with one or two. By the time we were done, our tree was either dramatically tied to the roof of the car (early years) or - once my parents discovered delivery - scheduled to arrive as if they had unlocked a new level of adulthood.

The tree would sit outside for a few days, letting its branches settle, before being dragged through the back door and into the living room. Which meant it was time for lights.

Now, I don’t know why this is true, but putting lights on the tree was never a joyful experience in our house. Whoever did it ended up in a bad mood. First it was my dad. Then, after back surgery, it became my job - and suddenly, I understood him completely. Something about putting up those lights just brings out a deep, unexplained grinch.

But once they were on - that’s when the magic really started.

Papa had a trick. He’d tell me to squint my eyes so the lights went blurry, making it easier to see bare spots. It felt very official and worked surprisingly well.

Decorating the tree was a full family affair. Christmas music. Hot chocolate (with marshmallows of course). Boxes and boxes of ornaments - far more than would ever fit on one tree. We’d decorate together until, inevitably, Mom finished the final touches while the rest of us watched.

And then came the star.

Our star was made of transparent seashells - not flashy, not gaudy, just beautifully simple. When the light inside was placed just right, it glowed. Each year, my sister Alyx and I took turns climbing the ladder to put it on, Papa steadying us from below. And when it was finally done, I always stayed a little longer than everyone else, sitting there and letting it sink in.

Christmas Eve had its own rhythm.

Dinner with friends and family. Then I would head to church a little earlier than everyone else so I could get ready to play for the service. Candlelight. Music. And then Silent Night - that moment when the lights dim and the whole room seems to breathe together.

It was my favorite part of the night.

When we got home, we were allowed to open one gift - always Christmas pajamas. Cookies and milk went out for Santa, even after I knew the “truth.” (And yes, holy moly, I was old when I finally found out. I won’t tell you how old because you’ll laugh.)

But even then, my parents kept it special. They told me I had an important job now: I had to help keep Santa alive for Alyx. Which somehow made it even more exciting (of course after I got over my initial shock!).

After everyone went to bed, I’d sneak back out to the couch and sit with the tree a little longer. The house quiet. The lights glowing. The magic lingering.

Christmas morning came with rules. We weren’t allowed downstairs until everyone was awake. No exceptions. Santa always brought one big gift - something special - and that we were allowed to open right away. Then we had to wait for Mom to make coffee before continuing, which felt wildly unfair at the time.

I loved opening gifts, but honestly? My favorite part was watching everyone else open theirs. The surprise. The laughter. The looks on their faces.

Maybe it all sounds simple. Maybe even familiar. But it created something lasting in me - a sense of wonder and warmth that carried into adulthood and made me love Christmas the way I still do.

And then there was that Christmas.

The year everything went wrong started quietly - with no heat.

A missed gas delivery, a lot of snow, and very cold temperatures later, it became clear that this was now part of our Christmas experience.

We responded logically: by redistributing every small electric heater in the house and carrying them from room to room like precious cargo. Unplug. Carry. Replug. Repeat.

It felt a little like camping. Indoors. At Christmas.

The town found out quickly - because small towns always do, and ours is especially good at showing up - and people started arriving with extra heaters and burners. No announcements. No fuss. Just help.

Christmas Eve arrived anyway.

We bundled up and went to church - coats, scarves, gloves - and for a few hours, everything felt normal again. Candlelight. Music. That familiar glow.

And then we came home.

Or tried to.

Because we had locked ourselves out of the house.

On Christmas Eve.

With no heat.

In the snow.

Papa eventually broke into our own house by breaking a window, which was later patched with cardboard - a design choice that somehow felt exactly right for that year. And because the universe wasn’t finished, I’m fairly sure we also ended up with a flat tire somewhere in the middle of all of this.

Here’s the thing, though.

I don’t remember that Christmas as stressful.

I remember it as cozy.

Christmas morning came, and despite the heaters, the cardboard window, and the chaos, the house felt warm. Not because the heat was back - it wasn’t - but because people showed up. Neighbors. Family. My parents keeping the tone light and the joy intact - even though I’m sure they were carrying the stress quietly.

From a young age, Christmas was also very much about something else: giving.

We gathered food and presents for the shelter in our hometown, and if a friend didn’t have somewhere to go, they were always welcome at our Christmas Eve dinner.

When I was old enough, leading up to Christmas, Papa and I would go into the city with our church, stopping throughout NYC to bring food and small gifts to people experiencing homelessness.

And any time we were in the city - any time of year - Papa would stop and give money to people on the street. And it was always more than just a few dollars.

When we asked him why, he said, “You never know when it just might turn their life around.”

That stayed with me.

Looking back now, I realize this is what my parents were teaching us all along - not by lecturing, but by living it. That magic isn’t fragile. That joy can coexist with inconvenience. That generosity matters. That it’s worth trying to make things better when you can.

And I know they didn’t invent that on their own. It was passed to them, too - by my grandparents - and then carried forward with care. I’m endlessly grateful to have been raised in a family where love, kindness, and showing up for others were simply how things were done.

So yes - I still believe in the magic of Christmas.

It was built for me early.
Protected carefully.
Passed on with intention.

Thanks, Mom.
Thanks, Papa - for being Santa, and for creating the magic that shaped my whole life.

The magic doesn’t end there.

On Christmas Eve, I had an appointment.

A scan. At the hospital. On December 24th.

And my first thought was: Really?
Of all the days. One of my favorite days of the whole year.
(And just to keep things festive - yes, I also have a neurologist appointment on New Year’s Eve. Apparently my body really likes to close out the year with a bang.)

But then - after the initial eye roll - I realized something important. The only reason I could even have that appointment was because doctors, nurses, and techs were working on a holiday. Giving up their own celebrations, their own quiet mornings, so people like me could still be taken care of.

Which immediately made me feel less grumpy (and a little guilty for being grumpy) and significantly more grateful.

Because this time of year? It’s complicated for a lot of people. In my own family, there’s been real heartbreak woven into the season. It’s not always twinkly lights and egg nog.

And yet - Christmas is still my absolute favorite time of year.

I’ve always believed in the magic of Christmas. I still do. And yes, I mean that sincerely. I still “believe in Santa,” even if the magic shows up in different forms now - love wrapped in small gestures, care disguised as consistency, laughter drifting between friends at a Christmas market with cold hands and warm cups.

That kind of magic didn’t disappear when we grew up.
It just changed packaging.

The last few years, though, I’ve had to work harder to feel it. Chronic illness has a way of dulling sparkle - not dramatically, just persistently. Joy becomes something you look for instead of something that casually shows up unannounced.

Thankfully, I don’t do that searching alone.

When I met David, Christmas was…not magic for him. My desire to decorate early and start Christmas music at the end of October (I know, I know!) made him cringe in a very loving but very real way.

But somewhere along the way, he started to see what I see.
(Cue… “Do you see what I seeeee”… sorry, I had to.)
The joy. The ridiculousness. The lights, the holiday mugs, the decorations, the music - the deep, unexplainable comfort of it all.

And now, when I start to waver, he’s the one reminding me. Picking me up. Playing the Christmas music. Relighting the sparkle when mine flickers. Which is something I don’t take lightly - and something I’m endlessly grateful for.

The holidays look different for me now. As someone with chronic illness and autoimmune disease, they kind of have to. I can’t keep up with the full hustle-and-bustle version of December anymore. The parties, the drinks, the endless number of concerts, the constant running around - my body would stage a full revolt.

And when I ignore that? Let’s just say it turns into a full Mouse King vs. Nutcracker battle inside of me. No sugar-coating that gingerbread cookie.

Canceling plans still sucks. Missing out still hurts. Sometimes it makes me sad. Sometimes it makes me angry. And honestly? Both reactions are allowed.

But sometimes, when plans fall apart, I end up on the couch instead. Wrapped in a blanket. Christmas lights softly glowing - not demanding anything, just being there. A cup of tea within reach. The world finally quiet enough to breathe.

And I’ve realized that this - this coziness, this stillness - is its own kind of Christmas magic.
Not loud or over-the-top.
Just warm. Steady. Enough.

Slowing down. Letting things be softer.
Allowing the music to breathe. (And believe me, that Christmas music or movie is definitely playing.)

And then there are those rare, wonderful days when my body decides to cooperate. When everything lines up. When I can show up fully. Those moments feel extra magical now - like perfect fifths ringing clean and clear.

Not because they’re louder, but because, for a moment, everything is in tune with itself.

There’s a line in Love Actually that always sticks with me:
“Love actually is all around.”

And I think that’s especially true this time of year - if you’re willing to look for it.

If this season is hard for you, you’re not alone. Please don’t give up. Reach out. Lean on someone. Ask for help. Let others hold you for a moment if you need it.

Because at its core, this season isn’t about doing everything. It’s about being there - for others, and for yourself. About love, in whatever form you’re able to give or receive it.

It doesn’t have to be a grand gesture. It can be the passing smile of a stranger. The giggle of a child running through a square. The quiet embrace of someone you love. A simple text from a friend checking in, just because.

It shows up in a thousand small ways.

And for me, it always feels a little more magical at Christmas.

So maybe it’s true - maybe magic actually is all around.
You just have to let it in.

I think a lot of that magic started long before I understood it - and I’ll tell you about that soon in part 2!

I wasn’t looking for anything meaningful.

I was scrolling Instagram. Which I really dislike. And yet - there I was. Thumb moving. Brain elsewhere. Probably avoiding my own thoughts.

And then I read this line:

I really miss my spark.

Which felt oddly confrontational.
Like a wrong entrance cue.
Or someone turning the house lights on mid-phrase.

But yes. That. Exactly that.

I miss myself.

Not in a dramatic, “Who am I now?” kind of way.
More like realizing your hands remember a piece your body can’t quite play anymore.

I miss the version of me whose smile didn’t require preparation.
The one that came from real inner joy, not the polite kind you use while quietly managing pain and pretending you’re fine because it’s easier than explaining why you’re not.

I miss laughing without wondering if my body is going to collect interest on it later.

It’s been three (plus) years of chronic illness and autoimmune diseases, seizures, and the unkown.
Three years of doctors, tests, waiting rooms, and more medical terminology than any non-medical human should know.
Three years of my body becoming an instrument I no longer fully recognize - familiar, but unpredictable, like the setup changed overnight and no one told me.

And yes, I know.
There are lessons.
There is growth.
There is gratitude.

I’ve learned how to slow the tempo.
How to respect the rests.
How to stop forcing sound when the bow just isn’t responding.

All important things.
Also not exactly what I was aiming for.

Because sometimes I don’t want to be patient or mindful or deeply evolved.
Sometimes I want the ease back.
The feeling of stepping into a phrase without thinking about every possible consequence.

I miss playing - and living - from instinct.
From muscle memory.
From that place where you trust your body to know what comes next.

Instead, everything feels over-edited now.
Every plan has dynamics.
Every good day comes with an asterisk.
Every moment of excitement is followed by a quiet recalculation of energy, pain, and aftermath.

I’m still here.
I’m still playing.
But I don’t always feel like the same musician.

And there’s a particular kind of grief in that - when the score is familiar, but the part you’re actually playing isn’t the one you practiced for years.

I just miss my spark.

The effortless one.
The one that lived in my body before I had to think so hard about it.
The version of me who felt alive instead of managed.

And just to say this out loud - this isn’t every day.

There are good days.
There are light days.
There are days when the music flows and I feel like myself again, even if it’s a slightly different version than before.

But every once in a while, this is where I am.

Naming it doesn’t mean I’m giving up.
It just means I’m listening.

And sometimes, that’s the most honest thing I can do.

This Part Wasn’t in the Score.

I would like to state, for the record, that I did not go to New York expecting to spend my free moments hunched over a puzzle called Oceanography.

I didn’t expect to spend any time near a puzzle, actually. Because I don’t like puzzles. I don’t trust puzzles. Puzzles are cardboard gaslighting.

(“We don’t use the word hate in this household.” Yes, Papa. I hear you. I strongly dislike puzzles. Happy?)

But there my mom and Al were, dumping 1,000 tiny sea-themed fragments onto the dining room table like they were about to reconstruct Atlantis. Their plan? Leave it out all week, add to it “whenever,” and enjoy the slow reveal of this majestic ocean scene.

My plan? Pretend to be above it while secretly feeling competitive the second someone else found a piece.

Because here’s the thing they never tell you about puzzles:

You don’t have to like them to suddenly believe you’re the chosen one who can spot the one specific jellyfish tentacle no one else can.

So yes. I got sucked in. David got sucked in. Basically anyone who walked by got sucked in. That table had the gravitational pull of a black hole.

We all assumed we’d be using the tiny image printed on the outside of the puzzle tube - an image roughly the size of a postage stamp - to guide us.

So there we were, squinting, holding it at arm’s length, tilting it toward the light like it was a sacred artifact. None of us had our glasses on. All of us insisted we should get our glasses but never actually got up to do it.

Then I opened the tube and discovered - plot twist - there was an ACTUAL full-sized map inside.

Cue the collective “Ahhhh” from the visually challenged.

Anyway, everyone naturally fell into their “puzzle role” like this was some kind of Olympics event:

Al became Chief Border Architect. If it had a straight edge, he claimed it.

Mom hunted down every piece with words on it like she was solving a maritime mystery.

I, the reluctant recruit, took on the right-hand corner filled with jellyfish tentacles that looked like someone dropped spaghetti into a fan.

David drifted in and out like a calming tide - offering support, spotting the occasional piece, and escaping before any of us could rope him into a full puzzle commitment.

And here’s the funniest part: anytime one of us lost a piece - which was every 13 seconds - everyone else instinctively jumped in to help. It was like a family search-and-rescue mission, except the life we were trying to save was a microscopic cardboard square.

Did we finish the puzzle?

Absolutely not.

Puzzles like this are designed to outlive marriages, vacations, and possibly civilizations.

But somewhere in the middle of tentacle-chaos, I realized something:

my body feels like this puzzle.

Not in a deep, poetic, “I am a beautiful mosaic” way.

More in the “why do these pieces not fit and who designed this nonsense?” kind of way.

Some days it feels like I’m putting the border together and things are starting to make sense.

Other days it feels like I’ve spent three months connecting pieces that actually belong in a totally different section.

Sometimes a doctor gives me a piece that fits perfectly.
Sometimes a doctor gives me a piece from another puzzle entirely.

Some specialists work together and help build the whole picture.

Others guard their four-by-four-inch section like it’s a national secret.

Which means I end up with these strange little clusters of health information that don’t make a full image yet - kind of like when you have the whale’s head finished, but the rest of the whale is still a mystery.

And me?

I just keep showing up at the puzzle table because once I start, I cannot stop.

I will sit there muttering to myself, flipping pieces around, convinced that the one I’m holding must go somewhere even if physics says otherwise.

But even in the frustration, there’s comfort.

There’s Mom.
There’s Al.
There’s David, who continues to prove he will follow me into any chaos, including but not limited to cardboard sea creature reconstruction.

We didn’t finish the New York puzzle.

I haven’t finished the puzzle that is my body, either.

But piece by piece - slowly, sometimes painfully, sometimes accidentally - I’m getting there.

And I’m learning to laugh at the whole ridiculous,

confusing, occasionally uplifting process.

Because this part wasn’t in the score - but somehow, with the right people at the table, even the unfinished pieces start to make sense. (Even if none of us ever get up to put our glasses on.)

My dear readers,

Please be kind as you read this. I’m opening a window into a vulnerable moment of my health journey - one that’s still unfolding.

I really hesitated sharing this one.

It feels a little more personal than usual, and if it turns out to be nothing, it might seem like I made a big deal out of something small.

But then I thought - this is all part of the score, isn’t it?

This whole unpredictable, out-of-tune health journey I’m on. And if sharing this helps even one person feel a little less alone while they wait for their own results, then I’m glad I put it out there.

Besides, this space has always felt safe to me - a place where I can process what’s happening, one post, one feeling, one rest at a time.

There’s a strange kind of silence that happens when a doctor says, “We’ll need to schedule a PET scan.”

It’s not the peaceful kind of quiet, like the calm before a concert or the soft hum right after tuning. It’s the kind of silence that feels heavy. Like the orchestra’s ready, the conductor’s lifted the baton, and then - nothing.

You’re just suspended in the air, waiting for the downbeat that doesn’t come.

I told myself it was fine. That I could take the trip to New York as planned. The doctors said it was okay, and I believed them.

But of course, my brain had other ideas. My brain started composing full symphonies of “what ifs,” rehearsing every worst-case scenario on repeat.

Still, getting to go back home to New York was exactly what I needed. For a little while, I got to just be me - the musician, the violin matchmaker, the person who gets excited about the smell of old wood and rosin, the salt air of the ocean, not hospital disinfectant.

There’s something magical about being surrounded by instruments instead of IVs. About being treated like someone whose story is made of beautiful sound, not scans.

But even in that bubble of normalcy, my body reminded me that I could only keep that tempo for so long. There were days when I hit the wall hard, when my tempo dragged, when my energy dropped out entirely.

Still, the trip was a gift. I got to see my mom, her partner, one of my best friends and dear family friends, to sit in the home I grew up in, to look at the ocean - one of my favorite stages in the world.

For a few days, the medical noise faded into the background.

Then came the day after we got back.

The PET scan. The return to reality.

They set me up with an IV, gave me the beta blocker, dimmed the lights, and told me to relax.

I’ve done scans before, but this one felt…bigger somehow.

Heavier.

Maybe it was the buildup, or maybe just the exhaustion of constantly living between hope and fear.

Lying perfectly still for twenty minutes sounds easy until someone tells you don’t move.The second they said it, of course, my whole body suddenly wanted to move. It’s like being told you can’t scratch an itch and suddenly that itch becomes your entire identity.

When it was over, I sat there in the gown, radioactive and tired, pretending to scroll my phone while my mind played its own anxious symphony.

Later that night, the images showed up in my patient portal. And because curiosity and anxiety are lifelong duet partners, I opened them. I told myself I was just going to look, not interpret. But then I saw something glowing in my pelvic area and my heart dropped into a minor key.

The next morning, another scan appeared - a CT this time, of my pelvis and ovaries. A scan that was not initially ordered.

So of course, cue the panic crescendo.

But this time, I stopped myself. I closed the laptop. I decided, no more Dr. Google. No more self-diagnosing through the fog of fear.

Sometimes, the bravest thing you can do is sit in the not-knowing. Let the gray space exist without trying to color it in.

And that’s where I am right now. In that in-between. The long rest in the score. The space between one movement and the next. It’s uncomfortable, sure. But maybe it’s also necessary. Maybe this is the part of the music that gives the melody its shape - the pause that lets you breathe before the next phrase.

So if you’re waiting too - waiting for results, for news, for answers - just know that you’re not the only one sitting in the silence. The rest in the music doesn’t mean the concert’s over. It’s just a breath. A pause before the next note.

Maybe everything turns out fine. Maybe it doesn’t. Either way, when the conductor finally brings the baton down, I’ll be ready to play again.

And for the ones who wait with us - the caretakers, the partners, the quiet companions keeping time in the background - your patience is its own kind of music.

David, thank you for knowing when to listen, when to lift, and when just to be still with me in the rests.

Because this part wasn’t in the score - but maybe it’s the silence between notes that makes the whole thing worth hearing.

Let’s talk about the mark under my eye.

Yes, that one.

The little crescent moon of mystery that’s been hanging out on my face for the past two and a half years like it pays rent. It used to be a matching set - one under each eye - but at some point, the left one packed up and left town. The right one, though? Loyal. Committed. Possibly too committed.

Doctors say it’s from the pressure of chronic migraines and headaches, mixed with the fact that I have a rare blood disease. Which is fair. Plausible. Medical-sounding. But let’s be honest: it still feels a little like we’re all playing a game of Diagnostic Clue - “It was the blood vessels, with the pressure, in the cranial region.”

Maybe one day, when someone finally puts all the puzzle pieces of my health together (plot twist: the missing piece was in the piano bench the whole time!), this little bruise will make more sense.

But for now, it’s part of the ensemble. My personal stage makeup - except I don’t apply it and I can’t wash it off.

Over time, it’s sort of become my signature. My game face. My battle wound. Honestly, if I were an action figure, the bruise would be my mark. My super hero insignia.

David, my poor husband, gets the brunt of this unintentional branding. Especially, when we’re in the States. We once went out for dinner in New York - just a casual night, bar seating, good food, no drama - until David went to the bathroom.

Cue the bartender hovering like he’s about to call in backup. He leans in and asks, in a whisper dripping with concern, “Are you okay? Is everything alright? Do you need help?” I blinked, startled, and said, “Umm…maybe just a water refill?” He looked confused, then pointed at his own eyes - and I finally got it.

Ah. The bruise. That old thing.

I explained the whole story. We laughed. He apologized. I reassured him. And honestly? I appreciated that he cared enough to ask. There’s something comforting in knowing that strangers still look out for each other. Even if their heroic moment is followed by a sheepish, “Oh…oops.”

Now, here’s the thing I get asked a lot: “Why don’t you cover it up?”

Simple.

First of all, it would take roughly 45 layers of industrial-grade concealer and the patience of a saint. Secondly - and more importantly - it hurts and I just don’t want to. There’s no reason to be poking and patting and smearing product onto a tender spot just so I can look more “put together.” If I had to put on makeup every time I left the house just to hide it, I’d never leave the house. Or I’d become a full-time makeup artist with one very specific client: me.

But here’s the real kicker: this bruise is part of me now. It’s not a flaw - it’s a feature. My accidental trademark. My face’s way of saying, “Hey, life’s tough, but I’m still in the show.”

Of course, I’d love a day when it’s gone - when the headaches subside and my face stops looking like I lost a round with a cello case.

But until then, it’s mine.

Most people who know me don’t even notice it anymore.

It’s just…me.

But every so often, someone feels the need to comment. Usually with well-meaning advice like, “You know, a little concealer would fix that right up.”

And here’s where I usually do my thing: smile, nod, maybe shrug. Because I don’t like ruffling feathers. It’s easier to let people have their moment of “helpful advice” and move on. That’s my default setting.

But if I’m being honest? What I really want to say is: No. I’m not covering it up. Not because I can’t, not because I forgot, but because I don’t need to.

This isn’t a mistake to fix - it’s my super hero mark. The thing that shows I’ve gone a few rounds and I’m still standing. My proof that life’s hit hard, but it didn’t take me down.

So next time you see me, don’t think “bruise.” Think battle emblem. Think signature.

Think super hero mark!

This part wasn’t in the score - but every hero earns their mark. This one just happens to be mine!

If you’ve followed me here for a while, you know my blog is called This Part Wasn’t in the Score.

Well, let me introduce you to the stand partner I never chose - and would happily give away to anyone else (not that I wish this autoimmune-ie life on anyone else): my IV pole, Mr. Baxter. He’s been tethered to my side these last few days in the hospital. And unlike the stand partners you get by chance in an orchestra, this one doesn’t turn pages, doesn’t make any good jokes, doesn’t share a pencil, definitely doesn’t bring chocolate to rehearsal, and never quite moves in sync with me - always a beat behind when I move! Not exactly the kind of chamber music partner I had in mind.

Just last week, we were out in the Dolomites, soaking in the kind of beauty that makes you believe in magic - crisp air, impossible peaks, that wild sense of being very small in a very big world. Fast-forward seven days, and here I am in a hospital bed, attached to a bag of IV medication, fighting through an autoimmune flare that spiraled into status migrainosus. Talk about a brutal contrast.

The good news? This time I listened to my body sooner. Instead of letting the migraine run unchecked for twelve days (lesson learned the hard way), I made it only four before waving the white flag.

My trusty black eye - that strange ‘super-hero mark’ (as I like to call it now) that has been with me for the last 2 ½ years - even began reappearing on the left side again. That was my cue: enough is enough. Time to get help.

Is it fair? Honestly, no. It doesn’t feel like it. Chronic illness has a way of sneaking in and stealing the spotlight, no matter how carefully we try to script our lives.

But when I look back at those almost two weeks in the mountains - when my body cooperated (sort-of, but enough to thoroughly enjoy myself and take that trip), and I got to just live - I remind myself that balance sometimes comes in strange proportions. If the price of those golden days is a week in this hospital bed with the world’s worst stand partner, then maybe, just maybe, I can accept that exchange.

For anyone else living in this tension - between the joy of what our bodies let us do and the grief of what they take away - I see you. You’re not alone in the frustration, the exhaustion, or the dark humor it sometimes takes to survive.

We may not have chosen this score, but somehow, we’re still playing. And maybe, just maybe, we can find a little harmony, even with the worst stand partners!