What Mark Cackler Has Learned About Living Fully Amid a Life of Uncertainty

There is a phone that Mark Cackler cannot simply switch off. He must answer every call. He keeps the phone on at night. When he goes to a movie theatre or a play, he sits on the aisle, just in case he suddenly needs to leave.

Mark is on the waiting list for a lung transplant, and at any moment, the phone could ring with news that changes everything. 

There is an obvious difficulty in living with that kind of uncertainty. But when Mark talks about it, what comes through is not simply fear. It is the way uncertainty has become part of the practical fabric of his everyday life.

He still makes plans with his family and friends: going to the movies, going to concerts, taking little vacations. He knows that sometimes those plans will have to be cancelled. They may already have planned, bought tickets or even paid a deposit, only to find themselves having to change everything at the last minute.

“We know that at some point we’ll have to cancel something at the very last minute,” he says. “We know that’ll happen.”

But that knowledge doesn't stop them from making plans in the first place.

“We make those plans anyway.”

Because for Mark, the alternative would be to stay at home, sitting in a chair and waiting for the phone to ring.

“And that’s no way to live.”

It is a simple idea, but it runs through much of the way Mark talks about living with pulmonary fibrosis: the uncertainty is real, and he doesn't pretend otherwise. But neither does he want to organize his life around something that might happen. 

The importance of acting normally

That desire for normality extends to the people around him, too.

Mark understands why friends and family worry. He would worry himself if someone close to him were going through a serious medical situation. But sometimes, he feels, their concern can become almost another presence in the room.

He remembers going out to lunch with a friend who would normally order a glass of wine. Because Mark was waiting for a lung transplant and couldn't drink alcohol, she decided not to order one either. It was her way of showing solidarity with him.

But Mark didn't want her to change her behaviour on his account. What would help him more, he explained, was for her to simply carry on as she normally would.

“The best thing you can do for me is act normally,” he says. He doesn't want his illness to become “some terrible thing that can’t be spoken of,” something that requires everyone around him to alter their own lives.

Instead, he wanted his friend to have a glass of wine.

It is a small moment, but it captures something important about how Mark wants to live with PF  and how he wants the people around him to live with it too. He isn't asking them to ignore what is happening. He is asking them not to let it change every ordinary moment.

Later, he returns to the same idea when talking about his friends and family: he understands why they worry, but wishes there was a way to get them “to relax a bit more.”

For Mark, normality isn't pretending that nothing has changed. It is refusing to let the disease become the only thing that everyone sees.

What people see — and what they don't

Part of what makes pulmonary fibrosis difficult for other people to understand is that so much of it isn't visible.

When Mark was first diagnosed with IPF, he started telling friends and family about his diagnosis with a warning: “Please don’t Google it.”

He knew, of course, that they probably would.

And he understands why. Searching for a disease like IPF can be frightening, particularly when the first information you encounter can make the future seem much more bleak than the reality Mark is experiencing today.

For Mark, the problem isn't simply that people search for information. It is that they can come away believing that what they have read online tells them everything they need to know about where a patient is today.

“When you Google, what you see is not necessarily what the truth is today,” he says.

Mark points to the progress that has been made in IPF treatment, including the drugs now approved for the disease in the United States. The point he wants his friends and family to understand is not that IPF isn't serious, but that the frightening picture they may encounter online doesn't necessarily reflect the full reality of living with it today.

“The first thing you see when you Google actually is not where we are currently,” he says.

Then there is the other side of the problem: what people see when they look at Mark himself.

He is often told that he looks good. He knows people mean it kindly, and he understands it as a compliment. But he also recognises that, sometimes, there can be an assumption behind those words: if someone looks well, perhaps they cannot be that sick.

Mark wishes people could separate the two.

“The way a person looks does not necessarily represent their medical condition on the inside.”

It is a simple observation, but it gets to something much bigger than appearance. Someone can look well, carry on a conversation, meet friends for lunch— and still be living with a serious illness that shapes almost every part of their life. 

In Mark's case, that invisible reality includes waiting for a lung transplant, keeping his phone on at night, staying within four hours of his hospital and knowing that plans can change without warning.

None of that is necessarily visible when someone looks at him.

And perhaps that is one of the things Mark most wants people to understand: what they see is only a small part of the story.

Living with Uncertainty v.s witnessing it 

There is another paradox in Mark's experience: the uncertainty surrounding his transplant can sometimes seem to worry the people around him more than it worries him.

That doesn't mean he isn't thinking about it. Quite the opposite. Mark says he thinks about his disease every day — about the positive aspects of his treatment, but also about what could potentially go wrong. He has simply had much more time to process the uncertainty than the people who care about him.

“I’ve thought about it so much and I’ve mentally processed it so much,” he explains, “that it really isn’t bothering me as much as it may be bothering other people.”

He understands why. Friends and family may see him every few weeks; Mark lives with the reality of his disease every day.

And perhaps that is why, once again, he wishes they could relax a little more. The uncertainty is there, but for Mark, it has become part of everyday life — something he has learned to live alongside rather than something that prevents him from enjoying his time.

The comfort of shared experience

Mark has also found something valuable in connecting with other people living with pulmonary fibrosis.

Sometimes it is practical: sharing experiences, answering questions, and passing on the small pieces of knowledge that come from having lived through something yourself. But there is also a sense of connection in meeting people who are navigating some of the same uncertainties and challenges.

Mark describes it as “a solidarity” — something that can be felt whether people are together in person or connecting virtually.

“Talking with people who have actually experienced what you’re experiencing — there’s not a substitute for that.”

What Patients Bring to the Conversation 

That sense of shared experience also shapes the way Mark thinks about research.

He values opportunities that bring patients and medical professionals together. But he doesn't want patients simply to be present. He wants them to contribute.

When asked what he hopes patients will get from bringing the PF community together, Mark immediately turns the question around: what can patients give to the conversation, not only what can they get from it?

“I hope it will be useful to you all, to the medical establishment, having us virtually in the same room, and that there will be ways for us to contribute.”

Then he puts it even more plainly:

“We’re not just passive guinea pigs.”

For Mark, better patient participation also means better communication. He wants patients to know where a drug is in development and what the overall trajectory of a clinical trial looks like.

“I wish I got more updates on the research.”

His perspective comes partly from his own experience in agricultural research. He remembers technical conferences filled with scientists, economists and policymakers, where farmers were occasionally brought into the room.

“And it was wonderful having the farmer perspective as well as the scientific expert perspective.”

For Mark, patients deserve that same place in the conversation: not outside the room, and not simply as subjects, but as people whose experience can add something to the discussion.

What the disease has changed

There is one more thing Mark has learned that is less about what other people should understand about PF, and more about what PF has changed in him.

When asked to name five things he wishes people knew, Mark talks about not believing everything found online, feeling fortunate about the care he receives, not judging someone's health by their appearance, understanding that uncertainty doesn't prevent him from enjoying life, and recognising that he has had more time to process his disease than the people around him.

But then he asks if he can add a sixth.

Perhaps, he says, there is an unexpected advantage to having a disease like IPF: it puts everything else into perspective.

Small things that used to bother him simply don't carry the same weight anymore. Someone cutting him off in traffic. Not finding the cereal or peanut butter he wanted at the store.

He is careful not to romanticize this.

“That doesn’t mean I’m happy that I have IPF.”

But he remembers something his parents taught him: “take your silver linings where you can.”

For Mark, one of those silver linings is that he feels less stressed by the usual frustrations of life than he did before. The disease hasn't become something he is grateful for. Rather, it has changed what he chooses to give his attention to.

And then there is the time it takes

At the very end of the interview, Mark describes living with pulmonary fibrosis as “just so time-consuming.”

It is a small observation, but it puts much of what he has shared into perspective. So much of living with a chronic illness happens in the background — in the planning, the waiting, the decisions, the conversations, the constant adjustment.

And perhaps that is what Mark's story leaves us with: that living with uncertainty is not simply about coping with what might happen next. It is also about holding on to the things that make life feel like your own.