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Every 10 years the American College of Cardiology publishes a large document about athletic eligibility for people with heart issues. These guidelines are written at the Bethesda Conference. The last one was in 2015, and the one previous to that was in 2005. This document is comprehensive, including almost, if not all, heart conditions, including those other than cardiac channelopathies like CPVT and LQTS. To create such a document, they divide and conquer. Groups called Task forces get together and put together guidelines for their specialty. The channelopathies are Task force 10. Categorizing sports was Task force 1. The 36th Bethesda Conference (2005) produced a chart (below) that ranks athletic activities based on static and dynamic components. Many cardiologists will recommend that athletes pick a sport in the IA box (shown in green) if they want to continue competing. Why? Because it is low in both dynamic and static components, meaning less strain on the heart.

When I was first diagnosed I was told I could pick a sport from the green box, but there’s a slight problem with that. My sport is in the big red box, which is why my first cardiologist basically said “never” and then he told me that I could take up piano “because it’s basically the same thing.” I personally don’t see any resemblance between rowing and playing piano but apparently, they’re basically the same.

This is my tale from the big red box because that is where I belong. I’m going to be honest living life in the red box is not easy. You have to decide if it’s worth it. I had an LCSD and take 2 medications so that I can be safe but my doctor told me multiple times that there is an element of risk involved and I needed to be ok with that. I’ve made my peace with the risk, but that’s not a decision that everyone can make. Since I was 15 at the time he also wanted my Mom’s ok for the continuation, because if something bad happened, no one should have feelings of “I told you so” and blame.

The hardest part about continuing rowing has been coaches. Some don’t want to take the risk (despite my stress tests being normal), others have difficulties accepting that because of the medications that keep me safe I have to make some modifications. The Beta Blockers cap my heart rate so rowing at a higher rate (more strokes per minute) is difficult because my heart rate doesn’t adjust as well to the extra effort. In rowing there are really only 2 ways to go faster – more strokes or more power. So I’ve switched from my previous more strokes mentality to more power. It’s become a “work smarter, not harder” sort of situation. This is similar across all sports and it’s a fundamental part of my major, Adapted Sports. If you need modifications then make them because just because you don’t do something the way everyone else does doesn’t mean you need to quit. Focus on what you can do rather than what you can’t and make it work. The unfortunate thing about this is that very few coaches have any training in adapting athletics so a lot of the time they don’t necessarily know what to do and they don’t want to do it wrong. I understand this fear and I don’t fault them for it because they are trying, misguidedly, to have people’s best interests at heart. I think they would feel more comfortable if they had more information on adapting sports to athletes with heart issues, but unfortunately a lot of experts disagree on sports and even the Bethesda Conference doesn’t offer any real solutions. It offers guidelines on whether they think you should quit or not but that’s basically it. Anything beyond that and you’re on your own. It disregards capacity, ability, desire and quality of life, and that is an issue. People are not 1 size fits all, so our guidelines shouldn’t be either. Some people don’t want any risk and I am not faulting them for that. Some are willing to take that risk though, and if they are willing and understand the consequences I see no reason to stuff people in a plastic bubble they don’t want to be in.

To summarize my point I’m going to quote Aimee Mullins, a Paralympic sprinter and double amputee, in her TED talk The Opportunity of Adversity, “There’s an important difference and distinction between the objective medical fact of my being an amputee and the subjective opinion of whether or not I’m disabled. And, truthfully, the only real and consistent disability I’ve had to confront is the world thinking I could be described by that word. In our desire to protect those we care about by giving them the cold, hard truth about their medical prognosis, or indeed a prognosis on the expected quality of their life, we have to make sure that we don’t put the first brick in a wall that will actually disable someone. Perhaps the existing model of looking at what’s broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself. By not treating the wholeness of a person, by not acknowledging their potency,we are creating another ill on top of whatever natural struggle they might have…So we need to see through the pathology and into the range of human capability.” Honestly, I couldn’t have said it better myself.