There is a saying, “Courage doesn’t mean you don’t get afraid. Courage means you don’t let fear stop you”. If anyone were to wholly embody those words, it’s Bill van Nierop.
Bill a 65-year old husband, father of three and grandfather to five was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in March 2015. Since then, and despite having just 53% lung capacity, Bill has taken on two gruelling physical and mental challenges of a lifetime, sharing his inspiring story with communities along the way.
In 2017 Bill completed The Long Walk for Lungs, a 15-day, 700-kilometre fundraising walk across central New South Wales which raised more than $100,000 to fund research and support services. Last year, he completed The Long Kayak for Lungs – a 42-day, 2,200-kilometre kayaking journey along the Murray River which raised an incredible $90,000 to support Australians living with lung disease.
Bill sat down with Lung Foundation Australia to talk about what motivates him, how he handles the tougher days, and why another challenge isn’t off the cards.
How did you feel emotionally and react when you were diagnosed?
When you are diagnosed, there’s a period of trying to process the reality of having a terminal illness. My emotions varied from fear of the future, to anger, why me, frustrations at the lack of information and a sadness of what I would miss with my family. I embarked on significant research, and set about planning my own journey, rather than how IPF would determine my journey.
What does a typical day look like for you?
Is there such a thing these days? And I’m nearly four years into my journey! If I am at home I walk 5 – 8 kilometres each morning as exercise gives me a sense of winning small battles and is beneficial for my overall well-being. I work from home as much as possible to manage the fatigue and I set aside time throughout the day to spend with my wife Lesley.
How do you cope when you’re not having a good day?
I guess the public see my game persona when I’m completing a challenge or speaking about my journey. The reality is some days provide difficulty, mentally. There is no magic bullet to get through these days – they are more difficult because of the lack of understanding amongst friends, and the fact I look well, meaning I rarely look to talk to others outside of fellow patients. I focus on challenges and projects to distract me as they help with a sense that I’m still contributing, albeit in a small way.
Do you think it’s important to support those who are newly diagnosed with their mental health?
I believe mental stress is one of the most overlooked aspects that people experience when diagnosed with a disease, which is not only terminal, but not understood by the community. There is a lack of understanding from medical support teams of lung disease, IPF and the impact it has on individuals. Many people feel that no-one cares and they experience loneliness and a lack of public empathy and support.
What advice would you give to someone newly diagnosed?
Everyone reacts differently to a diagnosis like this. I decided initially to deal with it privately because of lack of knowledge in the community, the stigma and overall attitude towards lung disease. Looking back, talking to others who had been through this before me, when I felt the need, would have been beneficial. I encourage you to talk to your specialists and push for as much information as possible, prepare questions and insist on answers, take someone with you to consultations, and if you’re not comfortable with either your specialist or GP, seek change or a second opinion.
What has been the most challenging part of living with IPF?
For me, knowing that it will progress irrespective of what I do, with no cure, and knowing that the only medications available reduce symptoms dependent on circumstances, is a challenge. I plan to maximise quality time with family, friends and projects to assist those that come after me.
What has been the most rewarding aspect on your journey?
Easy… working with other patients, carers and families impacted by lung disease or have had loved ones lose their battles as well as working with the team at Lung Foundation Australia. The satisfaction in helping to make a small difference through the challenges I would not have otherwise embarked on has also been rewarding.
What are five things you do to relax?
Ha! My wife, Lesley, would say not enough!
- I enjoy my daily walks listening to music.
- As I reduce my work time because of my IPF I will spend more time with our grandchildren.
- Believe it or not, I find looking for challenging options or awareness activities a form of relaxation.
- Lesley and I spend time looking at and undertaking travel options whilst I can.
- Due to the fatigue, I often enjoy a good book or movie.
What are some of your goals?
- To complete at least one more significant physical challenge as I suspect change within my disease will inevitably restrict me.
- To share my story and my journey with IPF and the impact of living with it to the ‘world’ via conferences and the like to raise awareness and understanding and to remove the stigma.
- Lesley and I would like to travel but I’m mindful of the approaching major battle to be won.
Keep an eye out for any upcoming challenges Bill decides to take on via lungfoundation.com.au