Engines of society - Susanna van Tonder

The morning is rainy, the wind is cold, and the noses are runny… it's a weather to take out the beanies and mittens. However, an air of summer and sunrise hovers over Losch Import. Palm trees and California Dreamin' in our heads. A surfboard to challenge the puddles. Yes, the long-awaited Volkswagen ID. Buzz has finally arrived in Luxembourg.

But if Howald is all cocktails on the beach and coconuts, the rest of the country is facing reality. Susanna van Tonder just came out of traffic: "Sorry for the wait, " she says in her soft, smiling voice. "I took 50 minutes instead of 20…" Most of us would be on edge, but not her. Because just like the car she's about to test drive, it takes a lot more to get her out of her feel-good attitude.

As usual, the car park is full of vehicles. Coloured in candy white and lime yellow, however, the all-electric little brother of the iconic Bulli trumps them all, just as its prototypes have done at car shows around the world for years. The wait was long, but worth it. And for good reason: the minibus is breathtaking. Its unique, full-length lines, huge logo, oversized wheels and modern, almost futuristic look dare you to look away.

In the Grand Duchy, Susanna is going to be one of the very first to get behind its wheel. She opens the driver's door and takes her seat. The rear doors slide open automatically and the show begins. The cabin gives a whole new meaning to the word "spacious". Despite the 1,121-litre boot, even basketball players will be able to stretch their legs. In terms of design, the yellow tones echo the bodywork in a classy interior, enhanced by the 10-inch VW touchscreen.

"I'm a bit scared, " laughs Susanna, who usually drives a light blue VW up! "I've never driven such a big car before." She is switching from the smallest to one of the largest model of the brand. It's also a first in an automatic car for her, who only got her license a year ago. Fortunately, with its eleven-meter turning radius and other innovative driving aids, it's just appearance that makes the ID. Buzz a minibus.

Off we go. "What's important to me is that the car gets me from point A to point B. I need it to be practical. And the ID. Buzz is very practical for a large family." A large family or a large circle of friends. For carrying surfboards or Christmas trees. Ready for anything. Two corners later, Susanna is already reassured: "It's very pleasant to drive. What's more, the steering wheel is heated! (laughs)"

In the capital's still slightly congested traffic, the Bulli 2.0 turns heads and generates smiles. It is the sunshine on an unfortunately grey day. "I think this car suits me because it's authentic, " says Susanna. It is special and not afraid to be so. "Minimalist and simple" but in its own way. "I'm not exactly normal either…"

If life gives you lemons…

Susanna van Tonder is 34 years old and works at ADEM as a counsellor for Ukrainian refugees. "I help them find a job. I support and accompany them, " she explains. A Luxembourger, she was born in South Africa: "I lived two hours away from Johannesburg until I was six years old." After that she and her family came to Luxembourg. However, "it is very difficult to find a guiding thread in my story", she smiles.

"Because I am all over the place! (laughs)" Not wrong… so let's start at the beginning. In her twenties, Susanna went to Germany to study acting. "It was great, but I was already beginning to notice that it was physically difficult for me." Out of 30 hours, 20 were physical activities. An "exhausting" program for her, who did not yet know that she had an autoimmune disease.

"Auto-immune means that my body attacks the protective layer of my nerves, " she explains. "It's as if my nerves were wires through which electric current flows and my body a little rat that chews them up (laughs)." If it gets worse…  "It's like with a phone: the charger doesn't work properly because the signals are no longer transferred optimally. But our brain and body compensate as much as they can, so it's not necessarily obvious."

Before her illness ‒ multiple sclerosis to be precise ‒ that turned her life upside down, Susanna worked in several fields ‒ mainly school and finance ‒ always on the administrative side. After her diagnosis, she added the social aspect to that… "Even more so, " she says. Walferdange; Susanna turns left, heading to Mersch and its Hunnebuer Trail. "Welcome to my street…" She passes her house in slow motion. "Goodbye cats! (laughs)"

"The catalyst. My grand mal…" This was in 2015. "A grand mal is an epileptic seizure. As you would imagine it, like in a movie. With twitching. It came out of nowhere… or almost." That night, "a Wednesday", Susanna remembers, she had a blind date. "We got on really well, had a lot of laughs and decided to go to a Brazilian restaurant near the Knuedler." So far, so normal.

Just as they received the card, "everything started to spin. As if I was on drugs." For a moment she wondered if her date had put something in her drink. "But I didn't even have a drink yet. (laughs)" Then she lost consciousness. "I woke up and was completely distraught. I didn't know where I was." Luckily, a nurse specialised in epilepsy patients was in the room. An ambulance was called. "Thank you. Thank you, fate."

As a result, "I was told that multiple sclerosis might be lurking somewhere." It was only a year later, in 2016, and after "a relapse ‒ when new symptoms appear and persist for more than 48 hours", that she got the final diagnosis: she had an incurable disease, she will live with it all her life. It was a crushing blow: "I was still young… I wondered what was going to happen to me."

The next six months were very difficult. "This uncertainty…" she recalls. "I was afraid and full of doubts. I was angry. With the world, with everything." Until one day she said stop: "I was in my living room mumbling like a grumpy old man (laughs) and then I said to myself: 'Look at your life. You can walk and see. You still feel things. You can laugh. What's wrong with you?ˈ" She had reached the stage of acceptance.

Susanna's multiple sclerosis is now well treated and under control. "The disease has many forms. Mine is active… In 2018, I had something every three months. But with the medications that are available today, it's much better." The ID. Buzz enters a dirt road: Hunnebuer. "Look how beautiful it is with all the leaves, " Susanna exclaims. The entrance to the woods is beautiful. A concentration of everything we love about autumn. Yellow, red, orange…

Energetic orange is one of the three other colours available for the two-tone configured ID. Buzz alongside starlight blue and bay leaf green. The minibus, which is also available in a Cargo version, is equipped with a 150 kW engine capable of reaching a maximum speed of 145 km/h. A shooting star in funky tones led by its modern IQ. Light, whose LED headlights light up and swivel up and down to greet its driver with a wink as he or she approaches.

This is just one of the model's hyper-innovative technologies though. In addition to the Digital Cockpit, it is undoubtedly the semi-autonomous driving system that will charm those who love the dolce vita. The ID. Buzz maintains trajectory and speed, while respecting safety distances, and memorises parking manoeuvres. Let it do its thing and enjoy the golden hour! "The panoramic view is superb, " confirms Susanna, who retrieves the key from the front storage space as she exits the vehicle.

Well, let's talk about that storage space. It's not just another elbow rest: it's the ID. Buzz Box, a flexible storage unit with a futuristic look that allows you to quickly and efficiently store everyday items between the driver and passenger seats. It is removable and also has an integrated bottle opener and ice scraper. In short, a Swiss Army knife by Volkswagen, created especially for the ID. Buzz.

Susanna also has many hidden talents. She takes her first steps in the woods. Activist, patient advocate, blogger: these are the words used by Wikipedia on her well-filled page. "I have participated in several EU meetings. I am a board member of many NGOs, vice-president of Multiple Sclerosis (MS) Lëtzebuerg and on the board of Info-Handicap. I guess that makes me a public person (laughs)."

Helping oneself to help others

She became involved after "a relapse that led me to a Google search." There she came across an event for young people affected by MS across Europe to which she sent her application. "I was selected and in 2017, I flew to Prague. It was a great atmosphere. Lots of young people, each with their own story." It felt really good, "to see that I am not alone…"

Since then, she has never stopped doing the same for others. From her position at MS Lëtzebuerg especially: "I notice that I have an impact on people's lives. I give them hope, I show them that it can be different." Because getting well, "physically and emotionally", is a permanent task. "It's like taking a shower. It's not like you only shower once and then you never have to shower again. (laughs) You have to clean yourself up, again and again."

For her, being well is almost a double responsibility. "Because I can't take care of others if I don't take care of myself, " says Susanna. She would not want to have to give up her role as a "patient advocate, a patient or a person directly related to patients ‒ the family, for example ‒ who advocates for patients by defending their needs on a national, European or international level."

Exactly her: "I show patients that I am there. I take the lead to inform and educate." In Luxembourg, this is also done through EUPATI: "A European project that is supposed to give transparency to patients. By explaining their disease to them." In this sense, she has a number of health-related publications on different platforms. "Recently, I wrote an article on how to be your own Christmas, " she says with stars in her eyes.

Susanna is also on the research front: "I am involved in a big global project called PROMS ‒ Patient Reported Outcomes in Multiple Sclerosis." Researchers, pharma, NGOs and patients ‒ 6 people including herself ‒ are working on "research to find and develop a new measure that would give a holistic perspective on multiple sclerosis and its progression", as the current measure is not optimal.

At the Higher Council for the Disabled, where she tries to detect loopholes and understand national needs in terms of accessibility for example, Susanna does not limit herself to people with MS. With all these different missions, she spends a lot of time in her car. "I drive a lot, " she confirms. The European Commission, Brussels… nothing that is not within the ID. Buzz's grasp and its 419 km range.

A few hundred meters further on, a small lake announces the turn of our walk. Also in the middle of the woods, it is surrounded by picnic tables, benches, and gently thinning trees. "I love this place. It's totally calm. Not a single source of stress. Nature allows me to refocus, to recharge my batteries." If the landscape makes you want to stay, the cold dissuades you to. Back to the ID. Buzz!

The ID. Buzz also needs to recharge its battery sometimes. However, this is even faster than a walk in the woods. The minibus can go from 5 to 80 percent in just 30 minutes thanks to its maximum power of 170 kW. In addition, the number of charging points is increasing and recharging is becoming easier. With the Car2X technology, which allows vehicles to communicate with each other, traffic jams are becoming increasingly rare. Ideal for longer journeys and more flexible and environmentally friendly holidays.

If the Bulli already blended in perfectly with the sandy, wave-filled landscape, the ID. Buzz also helps preserving it. A concept that appeals to Susanna: "When I'm not here, I like to go for a swim or a walk by the sea. Being in the water, this lightness… I love it." She has just returned from Italy where "it was 18°C, sunny" where she attended a conference.

Setting priorities

Finally, in order not to get lost in the midst of all her activities, Susanna sets herself a rule: "Set priorities." That way, she manages to enjoy her family, to continue to cultivate herself through studies that she is passionate about and… to simply live. "We're here on earth to enjoy ourselves, " she smiles as she sets off on her return journey. "I always say that my sclerosis is the worst and the best thing that ever happened to me."

"Having a disease is not nice. An incurable disease even less so. But it has made me rethink my way of life. My life today is much more fulfilling." It is also in this way, by living, that she changes stereotypes: "People think that disabled people are incapable, always in a wheelchair. I prove them wrong."

Just like the ID. Buzz on the roads of the Grand Duchy, which is now under heavy rain, Susanna van Tonder is a ray of sunshine in the middle of the gusts. "Ee Sonnenschein." She has found her happiness and does not live ‒ or no longer lives ‒ in fear.

"Someone once said to me, 'You don't have to dance at every wedding, '" she concludes. "I thought, 'Yeah, okay, that's true… But at almost every one! ' (laughs)"