The Negative: Danger of Worst Case Scenario Thinking

Life is brilliant. As I spend my last days in Europe, I cannot help be appreciate that this all could be gone in a blink of an eye for me. When I was younger, I was struck by the pressing nature of the need to travel while the world was expanding, because history dictated that it would contract again. Japan, Russian and China have closed borders at the turn of the Victorian period, but in 2020 the whole world closed. War is on the horizon for a place like Estonia and who knows where China will aim its dreams. I was concerned about even coming to this camp with Covid still lurking and the war in Ukraine being not so imaginary for here. My wife’s family left here at the end of WWII for a reason, and I feel blessed to have been able to come here twice in recent years for jiujitsu camps.

I know now that I will never get a safe chance to visit China or Russia based on their human rights infringements. The Trans-Mongolian Railway is now a pipe dream of an adventure. Africa is out as well as it has become a melting pot for viral mutations without full vaccine strategies. I do wonder what opportunities Phoebe will have as a world citizen and what I can do in my lifetime to help her develop as a traveller. Two decades and I keep finding ways to make this easier.

Money helps. It helps to be able to afford refuge without sheltering yourself from too much of the reality. Eating Big Macs and staying a a room serviced Four Seasons accomplishes less than nothing. However, having the funds to buy access, transport, shelter, and the such makes travel easier. Now I am not rich, by any means, but I leverage points, buy long term quality items for travel and love grocery stores for the experience and cheaper food options.

Tech is now everything. You NEED a smartphone. You SHOULD buy data while travelling. You MIGHT consider versing yourself in the best apps to make any travel easier. For this adventure I needed to load up Two airline apps, ArriveCAN, and Bolt. TripAdvisor is more used than Yelp in Estonia, so on it went. Wallet became essential for accessing hotel room codes and reservations. Bolt was ubiquitous for accessing scooter or taxi transport. Getting a 49 year old to decided to hop on a green scooter was a challenge, but Bolt actually made everything easier. But, man, QR codes are everything now. While I am glad I did not upgrade my iPhone yet, I will when the new 14 comes out. Tech is essential to connecting with people, sharing info, footage collection, and just finding your way around a beach town where the idea of the English grid system is simply not present. Data seems to be costing me about $15 a day here, which adds up, but the ease of travel and less wasted time/money make up for the costs. I do appreciate being able to call home without speaking to operators or dialing in weird codes. The world has changed since my first trip to the UK when I was 21.

Getting to the airport or even the Bog Walk was made a hundred times easier using the Bolt app. I never needed cash, I could find my driver and it all seemed way easier than Uber (which I avoid in Toronto). I hate taxis, but somehow all things Bolt seemed like it had gotten things right in Estonia. Now I would not ride a scooter in Toro to, but then I have my Ducati Diavel for rides in the downtown core.

Now I did make a few calculated errors like buying the camp meal plan (still better to lose a bit than possibly not have food), forgetting my camera battery in the charger at home (so lugging an expensive lens and body for no reason), drinking too many Chimay Blue on the first night of camp with Katy and Angel, and thinking that I could do keto on this trip. If that is all that goes wrong, and I get home in one piece today, then that is all good. Overall, I feel pretty good about this trip. While I did nothing crazy like going swimming in the big pond or party with the Globetrotters, I made those choices for kidney reasons and that is necessary if I am to keep travelling in any near future.

Which brings me to the elephant in the room: how long can I hope to travel with PKD. Santa Barbara Nutrients posted the above image on their Facebook feed, and, frankly….I HATE this image. I simply hate it and always feel the worst thing that medical professionals can do is throw out the old “worst case scenario” to educate patients or the public. The idea of carrying around 60 pounds of kidney weight and having all of that internal pressure in my body just…well, makes me want to give up. It does. While different it is akin to telling a pregnant woman that she might need to carry a dying baby that will keep growing and may never be removed. It is not pleasant or all that helpful.

How does this relate to travel? What about jiujitsu? If I end up with kidneys and cysts of that magnitude, then sitting in economy is over. If I end up on dialysis, then travel is over. If I end up with either of the above two, then jiujitsu is over simply because I will no longer be able to invert or take pressure. So, yeah, the infographic is depressing AND I do not believe that is a positive way to educate about PKD. Maybe I am foolish, but I firmly believe that people need to hear about success and that there are ways to slow the progression of the disease. Maybe I am wrong, and time will tell, but I see that intermittent fasting, ketogenic diet, lower calorie intake, consistent exercise, positivity, meditation and connection to community can improve the outcomes. I may not beat Death by PKD, but then no one beats Death. I am not aiming for that; I am trying to hang out with Life for as long as I can in a managed, thoughtful way. I have too much to live for to simply give in to the voices who seem to surrender to the inevitable.

I do appreciate those readers who have taken a moment to click a like or make a comment; not for any “social media” gain, but rather because hearing that my writing reaches others with PKD makes this type of writing seem somewhat valuable to the community. Now I get it; not everyone is going keto, training jiujitsu and what not, but maybe, just maybe, a reader feels a little better, tries some kale for the first time or starts meditating when the anxiety hits at 2am like it has for me during much of this travel adventure.

I feel like I have about another 16 hours in transit and have already been fasting for 20 hours, so not eating on the final leg of the journey might be a little over ambitious, but we will see. I am not moving much on the flights, so it is not like I am going to starve. Seems like a good plan for now, and frankly my kidneys could use a break from the Estonian diet. The path is long, if one is lucky.

One thought on “The Negative: Danger of Worst Case Scenario Thinking

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  1. Agreed 100%, I don’t see these ads as encouraging, they are depressing. Follow the pkd foundation, they do the opposite, only posting stories of success. Keep going with the blog. And a tip for your diet: when traveling, carry tons of boiled eggs. I even got an egg boiling machine, so you can always go to a local grocery store, buy half a dozen and that’s it for lunch!


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