As a person living with hemophilia the threat of bleeding is never far from my mind. That being said, I don’t actually think about it very much; I know the risk is there, I acknowledge it, and I live my life. It’s important for me not to let this one aspect of my life dictate the terms of the rest of my life. It’s one of the best pieces of advice I can give to any family raising a child with hemophilia: yes, your child has a serious health condition, they could very well get hurt doing any number of the things kids do, but you are doing them an even worse disservice if you raise the to let hemophilia control their lives. And that same advice goes for adults young and old living with hemophilia, let a little risk into your life! To do this safely, the first skill to master is managing the risks you expose yourself to. In order to do this we first need to define what a risk is.
When talking about risk as a person with hemophilia I find a deep resonance in the risk philosophies of adventure sports. I think the a big part of this comes from the way these philosophies shed the restraints of the “normal risk” convention. What is “normal risk”? This depends a lot on who you are. What do you think of as a normal risk? Drinking out of a bottle of milk that expires today? Flying in a plane? Starting a conversation with a stranger? Depending on who you are you will have different answers to these questions, we don’t all see risk the same way. This is where the idea of “normal risk” begins to fall apart, what is or is not normal depends on the group of people you are asking. For this reason it is important to separate risk from consequence in our definition.
A couple of years ago Black Diamond put together a series of short videos called A Question of Risk where they interviewed several of their athletes about risk. In Episode 1, Alex Honnold talks about separating risk from consequence. For those of you unfamiliar with Alex, he is an incredible climber and is famous for free soloing, this means that he climbs without ropes to catch him if he falls. Sounds pretty risky, right? Not exactly. One of the things he talks about in the interview is this separation between risk and consequence. As a person with hemophilia, my consequences are different from a most peoples; if a person without bumps their arm they might be sore and get a bruise, but if I bump my arm I could end up with a bleed. Those are examples of consequences, the risk of bumping an arm depends on who we are and what we are doing.
As a person with hemophilia it is true that the consequences of getting injured are higher, that is why it is important to manage your risks. First, it is important to consider the activity you want to do; let’s use riding a bike as our example. What is the worst thing that could happen while you are riding? Falling and hitting your head? Getting hit by a car? These are all risks that you can manage; if you are worried about hitting your head you wear a helmet to limit the consequences of that fall; if you are worried about being hit by a car, you ride somewhere that there aren’t any cars. When you first learn to ride a bike it is hard, and you fall over a lot, but as you get more experience you fall over less and less, you gain control of the situation; until then, you manage your risks, you use training wheels until you get your balance. This type of risk management is important for people with hemophilia: when the consequences of falling are high, you need to manage your risk of falling. You don’t need to become an expert overnight, stay within your comfort zone, gain experience, and push the boundaries of that comfort zone a little further out each time.
Lets sum things up. So you are a person with hemophilia (or even if you aren’t) and you have that thing you have always wanted to try, but it’s always seemed too “risky” for you. Take a step back, think about what you want to do, separate the consequences from the risks. Once you have considered the possible consequences and the risks associated with each one try to come up with strategies to manage these risks. Once you have a strategy to manage all of your risks to an acceptable level and you have found your comfort zone are ready to go for it!