After doing an interview for Jason Van’t Slots website I was very fortunate to start networking and looking into his background and story. I realised very quickly we had very similar upbringings and a lot of the same beliefs. Jason is a competitive cyclist from South Africa who has completed the WORLDS TOUGHEST MOUNTAIN BIKE RACE among other high profile cycling events and did I mention he has Cystic Fibrosis?
This blog is one of the first i have done as an interview format but hopefully you enjoy it and can take a lot of positives and tips from the blog. People with this mindset can help teach anyone with or without Cystic Fibrosis a successful attitude towards living.
Hi Jason can you introduce yourself and give us some background information please:
I am a 21 year old cyclist, and Bachelor of Commerce student from Cape Town, South Africa. My greatest sporting achievement would be completing the 2015 Cape Epic (the world’s toughest mountain bike race) and the first person with cystic fibrosis (cf) to do so (age 20). I am an optimistic person who has always been involved in sports throughout my life.
Age of diagnosis?
8 months with a life expectancy of 10
Your Sporting background?
Predominantly cycling (both mountain biking and road) currently. However I had played football (soccer) for 10 years and 4 years at club level. As well as various sports I tried for in school such as cricket, basketball, as well as mixed martial arts.
Do you feel like Cystic Fibrosis and Cycling have similarities and do you feel they help each other?
Absolutely! Not only cycling but sport in general. I owe my health a lot to the fact that I have always been a sportsman. I find that cycling and cf do complement each other very much. From a health perspective, just the positioning of the bike provides one with an opening of the chest (mountain biking in particular with the current trend of wide bars). Just think about the natural position of when someone is trying to cough or ease intense coughing, instinctively one leans over slightly or rests in something in that position. In addition the positioning of your chest leaned over gives one a form of postural draining. I have found that when I have an exacerbation and I go for a ride (even an easy one) I feel mucus the draining, I start coughing it up as is it were quite watery and looser. I find that riding my bike helps clear my chest much more than fluttering, breathing exercise and percussion and it is a much more enjoyable way of doing it (I am not suggesting that one does not do the traditional cf related pulmonary exercises). This is controversial, but I find that the stereotypical cf physique actually suites the cyclists physique of a smaller frame, more suited to climbing and a better power to weight ratio. I used to joke with one of my doctors that I was one of the few cfs trying to lose weight. You could say I found a sport allowed me to turn what could be perceived as a weakness into strength.
Fantastic, I’m not the only one who has to lose weight now and then for a fight. What motivates you daily and do you have any tips to stay motivated?
I find that having a goal is the best way to motivate keep motivated, preferably something little out of your comfort zone. Then using a training program to calculate back the amount of weekly per hours you are required to perform each week to reach that goal. That way you are held accountable to hit those numbers every week. I also so find that doing team sports or training in an individual sport with a friend holds you accountable to get out the door and exercise. When I was training for the Cape Epic I would visualise myself crossing the finish line often, if not daily and it was reminder to me of why I was out there training every day. As cliché as it sounds, I often use motivational quotes. I would choose one or two that I resonated with particularly well. I’d save them as my screen savers and lock screens, that way I’d see it throughout the day. When feeling unmotivated I would repeat them to myself. This especially helped when I was in the ‘pain cave’, sugar depleted and fatigued. Thinking back now I actually memorised the Rocky speech, knowing that these ‘pain cave’ moments were coming.
I also have found goal setting and visualisation is a great tool for motivation! How important is nutrition to your health and your sport and what benefits have your nutrition had on your health?
I have recently made drastic changes in my diet and learned how vital nutrition is to my health. In May 2015 I was. While in hospital I had a gastroscopy (scope of the oesophagus and stomach), it was found that I had stage 1 varices (enlarged veins) in my oesophagus due to portal hypertension (accumulation of blood pressure in the portal vein) as a result of cirrhosis of the liver. This is particularly dangerous as the veins are fragile and it can lead to vomiting up blood and severe blood lose. After the first variceal bleeding one’s life expectancy is 4-5 years. In addition I was diagnosed with cf related diabetes, which had been masked by the all my exercise. Initially quite a shock as I was in the best form in my life merely 2 month earlier. It has always been part of my nature not to dwell on the negatives and past too much as it is not constructive. I am a believer in controlling the controllable and not contemplating on what you can’t control. My family and I did extensive research on liver disease and what can be done to reduce the portal hypertension, and cirrhosis of the liver. The most appropriate diet that would benefit the resolve of these complications as well as the diabetes was the High Fat Low Carb diet, as advocated by Professor Tim Noakes , South Africa’s leading sports and exercise scientist. I initially had a reasonably healthy diet but had the occasional fizzy drinks and take always. The next month I went completely cold turkey on all carbs & grains(bread, pasta, rice, oats, rye, corn, soya), seed and polysaturated oils (canola, sunflower,) sugars (fructose, glucose, maltose), processed foods (packaged food and fizzy drinks)etc. I replaced these with high fats such as nuts, avocados, double thick high fat yoghurt, cheese olive and coconut oil. Minimal starch and carbs came in the form if vegetables. The idea behind the diet is to adapt your body to use your fat stores (a slow release of energy) opposed to carbohydrates/sugars (a fast release of nutrient-deficient energy). I could honestly say I cheated 8 times in a year as I was effectively using myself as a test subject to determine whether I had any results once the tests were repeated. The only thing I changed was my diet. Within 3 months I had controlled my diabetes through diet and would not require insulin. A year later I went back for a repeat gastroscopy and the varicose had completely subsided. I had effectively reversed something that could have been fatal, within a period of a single year. It was extremely controversial, so much so that my doctors were very concerned about it as there is very little knowledge about this way of eating. The doctors did have a few small adaptations to the diet, and made sure that I monitored my weight, as this High Fat low carb diet has been used as a form of weight loss. Furthermore it is also supported as a form of healthy eating as it is derived from our ancestral eating plan before dietary issues were a common day occurrence. This was one of the most important lessons that I had learned. It forced me to take my nutrition into account and be conscious of everything that I ate. This new consciousness with my nutrition helped improve my cycling. My starting group in races (based on one’s previous race results) improved from 10th group to start, to starting with the professional women in the 3rd group. I also did my first 102km race with a personal best of 2:55:12. Breaking the 3 hour mark in cycling is the equivalent to breaking the 4 minute mile. I cannot say that it will work for everyone, but it certainly helped me. Through this process I learned that nothing is permanent, it is possible to change statistics and ‘turn back the clock’ if you are determined and want it enough.
Awesome! What advice would you give to someone young (age 5-10) with Cystic Fibrosis?
Even if you have cf, you can still do anything you want to do. Just like a person who has to wear glasses can still do anything they want to do. They can see and do anything if they wear their glasses, you can also do anything and be healthy if you do your treatments and exercise as much as possible.
Obviously being a parent with Cystic Fibrosis or a family member can be tough but is also vital in growing up with CF. Do you have any advice for parents or family members?
The way I was brought up was very different to the way many children with cf were. I was not brought up in a bubble or different from my peers. I wasn’t given any sympathy or overprotecting from my family . The best advice I can give is to tell you how I was brought up and how it gave me a positive mindset to face my cf. When I was 3 years old my father gave me the hiding that changed my life. I said I couldn’t do something because I was sick. My father gave me hiding and told me that I was never allowed to cf as an excuse. That hiding was an extremely hard thing for him to do, but I am thankful as the message, was the building blocks to how I have lived my life. As a young child I was taught that we all have something, it is just a matter of accepting it and getting on with life in the best way possible. It is easy for a young child to say why me? But I never asked that question as I felt that it had no real meaning as I had not been brought up in an environment that encouraged that. We have a family motto that says “Don’t give it power!” implying that something can’t control you if you don’t give it the power to do so. If a child is given a crutch, they will use. As a means not giving it power and control, I only refer to it by the abbreviation “cf”. I was raised not to think of myself as incapable or a victim, now I don’t see myself as a cf cyclist, but rather a cyclist who happens to have cf. My family don’t regard themselves as a cf family, but rather a family who happens to have a family member with cf. My family and doctors always spoke positively around me, they would say ‘when you go to university’ opposed to ‘if you go to university’. My family didn’t actually tell me that cf was life threatening until I was 15, however when they did tell me, they organised that soon after I met someone who was in their 50’s with cf and had had a double lung transplant. This was done to ensure that I saw that there was light at the end of the tunnel and a great life was ahead of me despite cf. I hope that my story can be used as a means to change the negative connotations behind cf. I have found that cf doesn’t have to be a death sentence if you don’t give the disease power to limit you. One can still live a fulfilled life. You may have cf, but it shouldn’t have you. I detest being labelled a ‘cf sufferer’, I believe that one doesn’t suffer from cf, one lives with and manages cf. Having cf shouldn’t stop one from living life, however precautions may have to be made to manage cf, such as dressing appropriately when going out training on a winters day, or when going out with friends, go and enjoy yourself, just make sure you’re in bed at an reasonable hour and get adequate sleep. An example of how this mind set has allowed me to stay positive and normal in the eyes of others would be when I told my childhood best friend in the final term of my schooling that I was going to undertake the Cape Epic and what it meant in terms of cf. He turned to me said that he actually completely forgot that I ever had cf. I realised that, like the hiding I received from my father, it had not allowed me to be define and perceive myself as cf sufferer, I had too not let others define and perceive me as cf sufferer. Essentially the metaphor I am hoping to get across is that, the strongest muscle in your body is the one between your ears.
Big Thank you to Jason for sharing his time, experience and knowledge with me. I was certainly motivated by it.
What a Interview!!!!!
When comparing Jason with myself we were both very active as Children. Both had a positive ‘no excuse’ upbringing from the people around us. None of us follow what is the recommended “Cystic Fibrosis diet” but we take care and pride in our nutrition and our health and our bodies have reaped the rewards because of it. Some of our principles are different but the mindset is the same. I think its important to take all good habits from healthy, happy people and look for the similarities between the two. Both of us are very active with a passion for nutrition and taking our health into our own hands by doing our own research. We don’t want to be defined by Cystic Fibrosis we both want to be defined by who we are.