A Solid Foundation
Raffaela Dragani has functional neurological disorder (FND). She courageously shares her unexpected journey over the past 18 months, especially what it looks like to stay grounded when life shakes up your sense of stability.
A love for the mountains and a gift for goal setting are foundation stones of Raffaela’s identity that have kept her grounded throughout the peaks and valleys of life and helped her overcome significant challenges.
Raffaela inherited her love of the mountains from her Italian dad. Growing up adventuring with him in the Apennine mountains in Abruzzo, Italy, tramping became her “biggest love.” She has fond childhood memories of leaving home at 4am, embarking on 13 or 14-hour-long “crazy missions” in the National Park near their home, searching for wild herbs or mushrooms, running down scree slopes, or walking along sheer precipices with no safety lines – “My mum,” she says, “would never have approved!” These were precious accomplishments and formative experiences with her father. “It was just a beautiful thing to do.”
From her German mum, Raffaela inherited the gift of being “scary organised.” Her innate ability to break larger goals down into smaller, achievable steps has been foundational to her accomplishments and sustained her throughout her life:
“I’ve really been incredibly good at – You need to achieve this, so that means every day, this is what needs to happen,” Raffaela explains. “You have to break it down into details, into little tasks, little goals. It’s just the way I function. My German side is very strong, and that’s where it comes into play – punctuality, discipline, organisation.”
These parts of her identity have kept her grounded, steady, and moving forward, especially in recent years as she’s journeyed an uncertain, rocky road.
The Apennine Mountains that Raffaela explored with her dad.
Signs of a Changing Landscape
Raffaela was diagnosed with FND three years before applying to Mastering Mountains for a grant. Her diagnosis called into question the possibility of returning to the mountains. However, she describes receiving the grant in winter 2023 as “a lifeline, a ray of light just happening in the background” of what was otherwise a “really scary” and difficult time navigating further uncertainty about her health.
Raffaela’s goal for her Mastering Mountains grant was to walk to Blue Lake in the Nelson Lakes District. Blue Lake is renowned for being the clearest lake in the world, and reaching it was a dream Raffaela had held for some time. She described it as “the one that got away,” having planned to do it at least twice before.
Raffaela: at home in the mountains.
“Nelson Lakes National Park is one of my favourite places in the world, and so I’ve been thinking about this hike for so long,” Raffaela explained. But more than being merely a nice place to visit, these landscapes are Raffaela’s touchstone, anchoring and grounding her:
“The alpine environment to me – when I am above the bush line – feels like my mountains, just seeing cracked rocks everywhere, beautiful big, wide horizons, just mountains and mountains and mountains as far as the eyes can see, that’s home to me.”
As part of the training for her larger Mastering Mountains mission, Raffaela had planned to walk to Angelus Hut over Christmas 2023. She was both nervous and excited and decided to ease into it by testing herself on the first portion of the track, which is steep and taxing.
However, she realised something was wrong only a short distance into the walk. What was supposed to be a joy-filled trip was turning into something else. In her movements, she experienced new and unsettling limitations. She was losing control of her body and struggled to make her legs work. This hike was the lowest point in months of emerging concerns around her mobility.
“Things got worse, and we didn’t quite know what was going on. My walking was getting worse and worse. What usually would be an hour-and-a-half to two-hour walk – I didn’t even make it to the top of the ridge in four hours.”
Eventually, she realised she could not continue and needed to turn back. It was just horrible,” Raffaela explained. “I was so gutted about it because I so wanted to go.”
What followed was a time of waiting and worrying. “The specialist at the hospital mentioned it might be Parkinson’s, and I had to wait quite a while to see the right neurologist,” Raffaela says, recalling the shock of a possible Parkinson’s diagnosis. However, in the absence of a definitive initial diagnosis, her future was all the more uncertain. “I did a brain scan in Auckland in January [2024] that didn’t prove anything. So [there was] lots of hope, lots of tension.”
The earth was shifting beneath her feet.
Parkinsons: a Seismic Upheaval
When she was finally able to see the neurology movement specialist, it was confirmed – she had Parkinson’s Disease. Raffaela described this new diagnosis as “a bit of a shock” but also a relief, giving her answers and a treatment pathway. Nonetheless, there was also “a huge amount” of grief.
An Instagram post from April, 2024.
“I had grief about what I lost, and at the time, of course, I had no idea what was coming, so it’s really hard to acknowledge the disability,” Raffaela says before adding, “It’s a loss of agency. I think that’s the main thing. [It impacts] your independence and the things you want to do. It’s shattering. It’s painful.
“You take [so much] for granted – the ability to walk from your car to your office desk, or from the couch to the bathroom, or running, or being able to make a cup of coffee and walk around with a cup of coffee and your phone in your hands, cooking and chopping things, and just the basic things of life, and then you lose them. ... I felt like – I want to go back to what I was before, but then before doesn’t exist.”
Raffaela’s neurologist offered medication and lifestyle modification as a viable treatment path. “Everybody had been telling me, ‘Look, you’ll see when you get the right medication – things will work again,’ and I didn’t trust them because things were going so bad,” Raffaela explains. Needless to say, this heightened her sense of surprise, seeing the treatment working:
“In the 10 days leading up to the full dosage of the medication the neurologist had prescribed, [I saw] my body function again,” Raffaela remembers. “You lose the basic things of life. And then, all of a sudden, it’s like you have them again. It’s so easy to take those things for granted. I did not think I was going to get that back. … I could go back outside and just have control of my body again – just the sheer gratitude and miracle of something like that was unreal.”
Raffaela also described the significance of an internal shift she experienced – a critical and necessary step of the journey she wanted to highlight for others to understand:
“Experiencing the onset of neurological symptoms shatters your sense of agency. You can clearly see your functionality worsening, and your first reaction is denial. Not accepting your symptoms means pretending you are okay; not asking for help equals not having a problem. Denial keeps you in the past; acceptance is what moves you forward.”
Raffaela says that accepting her diagnosis was “a fundamental stepping stone in seeking help, in making the most of the incredible task force of professionals that the grant gave me access to. Acceptance is not easy; it doesn’t happen overnight, but it’s freeing in the end.”
Finding a New Path Forward: Grit, Determination and Goal-Setting
Throughout this rocky journey, Raffaela has demonstrated a remarkable strength of character, which has sustained and helped her to persevere despite her painful losses. Amongst many amazing character qualities, a couple stand out and are worth noting – first, her incredible grit and determination.
“Giving up is not in my character,” Raffaela comments. “I was not going to give up. [I thought] – I’m just going to have to get through this; there’s no other option. When you think you are at the bottom [you realise] – I can dig much deeper, I can go further. And you find the strength in yourself; there’s no other way to move on.”
Notably, Raffaela’s refusal to give up is directed toward the one thing she can control: her response to her situation and those around her. With this focus, she is actively living her life with a sense of agency that transcends her limitations and everything beyond her control.
“[Getting diagnosed] is not just something that’s happening to me; it’s something that’s there and I can address it. I’m going to figure out a way to live with it and ask – How do we move forward? How do we achieve what we need to achieve? I need to be here for myself, for my husband, for the people I love, for those around me, supporting me.”
Raffaela and a few of her support crew.
However, the most significant character quality that has sustained Raffaela is her ability to hold and move toward meaningful, motivating goals. Most recently, her goal to reach Blue Lake functioned as her anchor:
“Having the goal has been a huge lifeline. I told myself – That is my goal. I need to make that happen, and to make that happen I need to be healthy, I need to be strong, I need to be ready.”
During some of the most difficult times, her goal, grit and determination have helped motivate and sustain her through training and rehabilitation. “Just to keep active and exercise for the sake of it [health] might be lovely, but having something to work toward, to be focused on and proud of – that’s another level of motivation.”
It’s here that her gift for organisation – the superpower of taking a larger goal and breaking it down into a multitude of smaller goals — begins to shine through, inching her toward her objectives. Raffaela has a unique ability to transform her goals into habits and lifestyle so she can stay healthy to achieve the things that mean the most to her, giving her purpose and direction:
“My life with Parkinson’s is focused on the health of my brain – I need this to live”, she notes. “Certain things are non-negotiable: I need to go to bed by 9 o’clock, I need to eat well, and not drink coffee after lunch. I don’t drink alcohol in the evening. I need to exercise. I need to protect my social energy. And so, having that goal to work hard for has been huge for me. I would not be in this place with this state of mind if I didn’t have a goal.”
“At the moment, I’m working as a project manager, and it’s the way I always address my life,” she explains. Significantly, this ability to project-manage her life enables Raffaela to outwork her sense of agency over her health, hopes and progress. Her grit and determination, combined with her ability to break goals down into daily habits, help her to regain control. The future may not be certain, but in the present, her feet are on solid ground.
Helping Others Find Their Way
Raffaela’s upbringing has set her up to stay grounded in her passion for the mountains despite the challenges she may face. However, she acknowledges that not everyone’s experience and strengths are like hers. Instead, she believes anyone can reach their goals with the following steps: developing a clear reason (or ‘why’), acknowledging and accepting your starting point, finding support, forming a strategy, fostering a strong mindset, and perhaps the most underrated step, simply making a start.
“You can accomplish anything as long as you put your mind to it and work toward it,” she explains. “Realise inside yourself why you want to do something and what it means to you. And then just work your way back. … You do your best, you take advice, you find support. You find people that can get you there. And you just build a strategy.
“It’s very, very easy to give up, to make excuses, to fall into a victim position – this happens to me. [It’s about] rebuilding those narratives [and reminding yourself] – You can do this. You have the strength. You can do hard things. You can dig deep. You can get there.” In closing, Raffaela adds, “Often, the hard part is starting. It’s about just filling your pack and going for the walk. I usually find that I’m always happy to do it once I get started.”
The Next Goal
Raffaela was already pondering her next goal, even before her mission to Blue Lake. She knew that once it was over, she would need a new, beautiful place to visit and a new goal to journey towards. Whatever she chooses, Raffaela is confident she can use her strengths and strategies to get there – she’s done it before.
We admire Raffaela’s courage, strength, and determination, and we know without a doubt she’ll get there too. With her connection to place and heritage and the strengths and strategies at her disposal, she’s standing on a solid foundation.