Good morning and welcome to Inflammation Superhighway, recorded in Yarraville, Melbourne, Victoria, Australia. I would like to begin by honoring the original custodians of this saltwater-encircled country, who lived in harmony with the land and the sea. I would also like to thank the traditional custodians of the land where I am recording today. I honor the elders past and present, and recognize that this is, was, and always will be Aboriginal land.
(Music)
Hey there, welcome back. Today, on Inflammation Superhighway, we are going to talk about what I call “living forward.” It’s all about facing tomorrow and planning for the future. I want to start by admitting that this is an area I struggled with quite a lot. In some ways, I think I’m recording this for myself, but I also assume I’m not the only person on the planet who has had difficulty with this part.
Let’s be honest—hearing that your condition may worsen over time is one of the most difficult things a person can face. Whether it’s MS, like me, Parkinson’s, ALS, or any degenerative autoimmune condition—or really any diagnosis—at the moment that news hits you, your future changes shape.
Suddenly, the life you imagined might be out of reach. There’s a profound grief, a quiet loss that resonates deeply. It begins even before anything on the outside has changed. Yet in that moment—or very soon after—there is a crucial decision to make about how you process this news and move forward. How do you plan for a future that may bring physical, cognitive, and definitely emotional challenges? How do you do that without giving up on today?
At the moment of diagnosis, you might not have many symptoms yet, and you might also have a mindset of, “It’s not going to beat me.” So you are caught between hearing the diagnosis and deciding, “I’m not going down that path.” At the same time, there is a real advantage to planning for the future.
First of all, there’s that moment—in a doctor’s office, a phone call, or some other way—when you find out your news and the doctor feels the need to give you a prognosis. We all know that environmental factors have a big impact on gene expression, so a prognosis doesn’t always have to be true. But I guess doctors are trying to give us a fuller understanding of our potential path.
For many people, especially with progressive illnesses—neurological, autoimmune, degenerative—the news that follows isn’t clarity. It’s more like an earthquake or a rollercoaster. The firm ground you once stood on begins trembling. The assumptions you’ve lived by about your body, your future, and—for me—my independence suddenly feel unstable, unsure, and difficult to rely on.
Your first response is often denial or resistance—not crazy or theatrical, but quiet, deep, and internal. Someone once called it an “internal mutiny,” and I quite like that description. You have thoughts like, “I’m not going there. I’m fine right now.” But then you wonder, “If I start planning for decline, am I inviting it in?” That confusion is real.
Here’s the truth: after struggling with this myself, I know this reaction is very human and real. It’s a form of protecting yourself during a shaky, uncertain phase when you first receive the diagnosis. Planning for the worst feels like expecting the worst, even if you’re not consciously thinking it. There’s this tension between what you say out loud and what you’re feeling inside, and it’s incredibly confusing.
This is where I wish someone had given me this advice or support: stop and rethink what it means to plan. Planning is not surrender. It’s not fatalism. It’s not a betrayal of hope. Planning is preparation. Beyond that, it’s agency. It’s control. It’s taking back control—not just for today, but for your future.
Planning is a way of saying, “I see what might be coming, and I choose to meet it with my eyes wide open. But I want strength and tools, and I want it on my terms.” Avoiding thinking ahead, like I did, may feel safe and empowering in the short term, but it doesn’t erase uncertainty. Instead, it gives more power to that uncertainty.
Over the last four or five years, I have learned a lot about the power of our words and how to fix our bodies. Ironically, avoidance doesn’t protect us, and it doesn’t mean we’re living fully in the present. Instead, it clouds the present. It introduces a background hum of anxiety—not quite fear, but a simmering tension beneath the surface. This can show up in your dreams, your night sweats, or when your body doesn’t move like it used to.
But when we do plan—when we take those uncomfortable steps to make decisions about what we need to do to set up for our future—it gives us the freedom to live fully and totally. That’s because we’ve created a safety net for tomorrow.
This idea taps into a general life rule: when we’re younger, we live for today. We think we’re invincible. We don’t think about aging, or needing a safety net, superannuation, or security. Living in the moment is our natural state. But balancing that with planning is so important. It really is a delicate balance.
Acceptance is a part of this balance and is often misunderstood—especially in relation to illness. Sometimes people think acceptance means giving up or waving the white flag. But acceptance isn’t the end, and it isn’t the end of hope. It’s the beginning of a different kind of hope.
Let me try to explain that better. Acceptance is the moment when you stop fighting reality. Even though you are the biggest influence on how your gene expression unfolds, acceptance isn’t weakness. It’s one of the most courageous things you can do. It means saying, “This is what’s happening. I wish it wasn’t, but I will meet it with all my strength, grace, tools, and clarity. I will still choose joy, because that’s what I do these days. I choose joy above everything, and I’m still going to build this wonderful life that really matters to me.”
From that place of “we can,” and pretty much only from that place, can we begin to make real, meaningful plans. It means telling yourself, “I deserve to be supported through this. I deserve to have systems in place. I deserve to make decisions while I’m still able to ask for help.”
When I—when I want to seem like I’m strong to the world—I think we’ve touched on this topic before. Asking for help from others is really important for your support network because it empowers other people who want to give and want to help. Accepting their help is a really important balance in your relationships.
So, preparing could mean some modifications. It could mean some research on mobility tools or definitely research. It might also be the impetus to begin therapies that push back some of your progress, and some financial planning for a concept that one day—you might, like I have in the past—not work, so that you can concentrate on your fitness and wellness for certain periods of time.
It also helps you to gather your circle: those people that really get it, those people that—and not just the people that get it—not just your support network, but to get rid of those who drain you. This is a different topic in some ways, but I think this is the time. This is really the time to start realizing you don’t want to waste time or energy on people who bring you down.
We will talk more about that, but here’s probably where it gets tricky: really honest acceptance. Acceptance doesn’t silence your fear. It doesn’t make the pain or loss go away. It doesn’t tie everything up with a neat bow. There is a tension that remains between living in the now and being aware of what’s ahead.
That’s where I got stuck. I didn’t really allow myself enough time to sit in that space. I think I ran from it and extended the dance—the little tightrope of uncertainty—that I may not have shown the world, but it was definitely inside me. Over time, I learned some much deeper lessons about acceptance and allowing myself space. But I also learned to stop bracing myself for the negative.
I really struggled with the word surrender in my healing process. For a while, I needed to find another word because the word surrender sounded so final. But it was really about having the strength to know that the work I was doing with my physical and mental health—the work I was doing to build a life that would work for me with the difficulties that were showing up, and putting myself first—those choices were difficult, but they did shift me.
Then, in a conversation one day—I’m trying to remember whether I was listening to someone being interviewed—I heard something that stayed with me: hope changes things. It shifts from “maybe I’ll get better” to “actually, no, I’m going to get better.” It changes from that conversation to “maybe I’ll find peace” to “I’m going to find peace. I’m going to find support. I’m going to maintain dignity. I’m going to have a life with meaning, no matter what happens.”
And let’s face it, that’s not a lesser hope. That’s a pretty powerful hope. That’s a brave hope. It’s one to be admired and one to try to attain.
It’s rooted in truth. Life with a progressive illness is uncertain. It is uncertain. And when you step outside of your own situation, the reality is that all life is uncertain. No one knows what’s coming or what’s around the corner. In my almost 57 years, I’ve seen so many shifts, turns, and paths that have taken large doglegs in different directions—and they weren’t all to do with health. That’s the complexity.
Once you’ve made space for acceptance and begin moving towards preventative action, I just want to say that preventative action is anti-hope. It frees you and allows you to have more hope because you build that safety net. Because you build the emotional, physical, and practical network.
You let go of your burden, your “what if,” because let’s face it: if you plan for something that doesn’t happen, isn’t that a fantastic outcome? Whereas what I did was not plan, and then it happened anyway.
I get a little hard on that topic because I feel that planning is such a part of the force and power of your future. When difficult moments arrive—and let’s face it, they will arrive—you’ll have tools and things in place. You won’t be starting from zero. You’ll be ready, and you’ll have options. You’ll be able to say, “I’ve already thought about this. I’ve taken care of this.”
The whole uncertainty, the whole “there’s no cure”—all of that will always mumble in the back of your mind. You can choose to create a powerful message from that. You can choose to have it as motivation, but it shouldn’t stop you from looking towards the future.
Become someone who has the hard conversations with your friends, your family, and your boss: you need to live in the present, but you also need to be aware that things could change. We’ve been talking about acceptance, planning, and prevention, and the question that has quietly whispered to me is: how do I stay present without falling into fear? How do I really fully enjoy today while planning for the future?
This is something I’ve had to learn, relearn, and relearn again: presence. Being present is not the same as avoidance. I’ve lived avoidance. The difference might be really subtle, but to me, it’s everything. When we avoid the future, we’re not really living in the now. We’re just hiding from what might come—and deep down, we know it. We know the anxiety and harm it gives our mind, and therefore our bodies.
I’ve talked about the irony that when we plan for the future, we actually reclaim some of the present. And let’s be honest, this is not a one-time decision where you plan once and never worry again. It’s a dance. Some days fear will creep back. Some days you’ll feel more grief than gratitude. Some days you’ll question whether any of it was worth it.
I think this isn’t about doing it perfectly. It’s about doing it honestly, gently, and at your pace. You don’t have to choose between hope and reality. You can hold onto both. You don’t have to split your time and energy between today and tomorrow. We can let tomorrow’s choices and clarity make today more meaningful.
We don’t have to pretend we’re okay all the time. We just have to keep moving forward with compassion—compassion for ourselves and the people who work with us, live with us, or care for us.
But I want to say that again: we don’t have to pretend we’re okay all the time.
Wherever you are in your story—just at the beginning, somewhere in the middle, or deep, deep, deep into it—I just hope you remember this: planning is not giving in. Acceptance is not weakness. And hope isn’t only for the cure; it’s for living. It’s for living right now with love, purpose, courage, joy, and gratitude.
So, guys, thank you for traveling with me down Inflammation Superhighway today. I hope you’ve enjoyed my honesty—that I did not do this story well—and I’m motivated to share that because I believe it has hindered me. I believe that looking forward is really purposeful and really important. It does lead to really hard decisions and really hard conversations.
But until next time, take care of yourselves. Be kind to yourself. And live forward.
