The Maestro’s Manual: How to Conduct a Life That Keeps Going Off Script

A backstage pass to David’s journey through our beautifully messy, unscripted duet

A candid conversation with my husband-slash-caregiver-slash-conductor.

David answers the big questions about love, being the care giver (hero) of someone with chronic illness, and what he recommends for unexpected plot twists.

If you’ve been following along on this blog (or in real life), you probably know a bit about my journey with autoimmune/chronic illness - the doctors, the diagnoses, the search, the detours. What you might not know is that while I’ve been navigating this winding road, someone else has been walking beside me, hand in hand… and occasionally sprinting ahead to grab my injections or call the ER.

That someone is David - my husband, my partner in all things. We’re a team in the truest, fullest sense - at home, in our creative work, in the way we move through the world. He’s not just my companion; he’s my best friend, my co-creator, my safe place. We build everything together - projects, performances, ideas, dreams. And when we’re side by side, we’re stronger. Clearer. More complete. It’s something incredibly rare to find someone you want to do everything with - and even rarer when you know, deep down, that you truly can.

As fate would have it, he is a professional orchestra conductor. Which is fitting, really, because our life has felt like a strange, beautiful symphony lately. Except the music keeps changing, the score is half-missing, and someone definitely forgot to rehearse the seizure movements.

Through it all, David’s been waving an invisible baton, trying to keep things in some kind of rhythm - even when the tempo suddenly drops to “medical mystery” or swells into “emergency crescendo.” He’s shown up with love, strength, humor, and an ability to improvise that rivals any jazz musician. And let me tell you, he didn’t sign up for this arrangement. But he’s stayed anyway, and somehow made it sound (and feel) a little more harmonious.

So I thought it was time to hand the mic - or maybe the baton - over to him. In this post, I ask David some real questions about what this journey has been like for him: the hard parts, the funny parts, the things he’s learned, and how he keeps showing up when the score makes absolutely no sense.

Let’s be honest: caregiving doesn’t usually get a standing ovation. But today (and every day really), he deserves one. So, let’s get started….

1. What’s been the most surprising part of this journey for you?

Honestly, just the fact that we’re dealing with this at all. I never imagined we’d be in a situation like this - navigating chronic illness, hospital visits, seizures, and all the rest. That alone was a huge surprise. But what’s maybe even more surprising is how we’ve handled it. I would’ve expected something this intense to cause strain, or to throw us off balance. But it hasn’t. Somehow we’ve stayed steady. Calm. We keep showing up, and we haven’t let it come between us. That’s not something I take for granted.

2. Be honest: how hard has it been to run Boho Strings (our ensemble), keep the house going, feed and walk the dogs, and take care of me - sometimes all before lunch?

At the start of this whole journey, my focus shifted almost entirely to helping you, managing the house, and keeping things going day to day. The dogs, the chores, your care - that became the priority. And to be honest, it came at the expense of Boho. I didn’t have much capacity left to push forward with the ensemble, and that’s reflected in how light this season’s calendar has been.

It’s taken time, but I’ve slowly figured out how to refocus and rebalance. Over the last six months, I’ve been more intentional about carving out space to keep Boho moving again. It’s still a work in progress, but I think it’s starting to show.

3. Has this changed the way you see me - or love me?

Not at all. If anything, I love you more every day. That hasn’t changed - it’s only grown. And like I always tell you: I just found you. Even in the middle of everything, that still feels true. Maybe even more so now.

4. What’s one thing you wish people knew about being the partner of someone with a chronic illness?

That the partner carries a big part of the weight too - every day. You live with the same uncertainty: no clear diagnosis, no idea if this is the new normal or just another chapter. But because you manage, and because you adapt, most people don’t see it. They see the good days - the moments we’re out together - and assume things are fine.

What they don’t see is how often plans change at the last minute. Chronic illness doesn’t follow a schedule. It comes and goes on its own terms, and you have to be ready to shift gears instantly - while still keeping up with everything else in your life. That constant juggling takes more energy than people probably realize.

5. Have you ever felt helpless? And if so, how do you manage that feeling without punching a wall or running off to conduct Mahler in the Alps?

Constantly. As a husband, I want to take care of you - and by that I mean really take care of you. Fix what’s wrong. But I can’t fix the root cause of what you’re going through, and that leaves me feeling angry sometimes, helpless at others. And even in those moments, I’m trying to stay steady for you - because you’re the one actually living through the symptoms.

Running off wouldn’t solve anything. And no, I don’t want to disappear into Mahler’s despair. If anything, I’d rather face the mountain ahead like Strauss in Alpine Symphony - climb it, weather the storms, and keep going. Or charge through it like in Ein Heldenleben. That feels more like what this season demands.

6. What gives you strength when you’re tired, or scared, or just plain over it?

The joy of our dogs. No matter how heavy things get, they bring some lightness back into the day. And thinking about the adventures ahead with Hira - what we’re building together with Hira and the Hounds - gives me a sense of direction. It reminds me there’s more to come, and that we’re still moving forward.

7. What’s something small that’s brought you unexpected joy in all of this?

Discovering overlanding in our Defender. The freedom of the open road, going off the beaten path - literally forging our own trail - has been a real source of joy. It’s quiet, it’s focused, and it reminds me that we can still explore and move forward, even when life feels unpredictable. I know the question was about something small, but I guess this one’s actually quite big.

8. Do you feel like people check in on you enough?

Not really - aside from a couple of close friends. But honestly, that’s good enough. They’re close friends for a reason, and they understand the situation without me having to explain everything again. In some ways, that’s actually a relief. So I guess the answer is yes - I’m okay with the amount of check-ins I get.

9. When you imagine us 5 years from now, what do you see?

I don’t. I want to live in the present - these are the moments that matter right now. Despite everything we’re dealing with, there are still so many moments of real beauty and joy. Trying to predict where we’ll be in five years feels like a moot point when there’s so much happening right in front of us that’s worth holding onto.

10. What advice would you give to another partner just starting out on this kind of journey?

Cherish every moment you have together, even the quiet or chaotic ones. It’s easy to get overwhelmed by the medical side of things, or by all the uncertainty, but don’t lose yourself in despair. That doesn’t help either of you.

Keep humor in the mix - it makes things lighter, even when they aren’t. Learn to laugh at the absurdities when you can. Self-relativation helps too; you have to keep some perspective, or it can all feel too big. And no matter what, try to hold on to a positive outlook. That doesn’t mean ignoring reality - it just means staying open to good moments when they come.

At the same time, don’t forget your own needs. You can’t support someone else if you’re running on empty. Make time for the things that keep you grounded. And build a tight network of supportive friends. You’ll need people you trust - who you can lean on without having to explain the whole story every time.

11. When you hear me say, “we’re still writing the story,” what does that mean to you?

It means we’re going to keep going - with everything we do. Boho, Hira and the Hounds, laughing, discovering, traveling, making music together. Nothing is fixed, nothing is set in stone, and nothing has been predetermined for us. We draw our strength from each other and from how we choose to live each day - from morning to evening.

It’s a new story every day. Some days are joyful, others are heavy. But it’s our story, and no one else can write it for us.

Coda: For the One Who Keeps Time When Everything Feels Offbeat

David,
Thank you for conducting a life that so often skips rehearsal.

For holding steady in the silences, the swells, and all of the dissonance.
For learning a part you never studied or auditioned for, and playing it with more grace than I knew was possible.

You’ve reminded me that love isn’t about perfect timing or sticking to the score.
It’s about listening closely.
About improvising with heart.
About showing up - again and again - even when the lights go out and the orchestra is (my body) on strike .

This life? It’s not quite the one we planned.
But I’d choose it with you every time.
Here’s to all the movements still to come. Baton in hand, strings ringing, dogs at our feet, engine running, halyards clanging.

I know This Part Wasn’t in The Score, but We’re still writing the story.

I love you forever and always,
Jessi