The Balance

Heart disease, congenital or otherwise, does carry a weight to the name. Often, it is like a shadow over their lives that is always there whether you want it or not. This is why there are two general reactions to it. The first is to have it dictate your life, and the second is to run away and ignore the symptoms to maintain one's freedom. However, this freedom often comes at the cost of one's health, while to remain overly vigilant comes at the cost of one's potential. There must be a balance.

In my experience, I have found this to be particularly difficult to maintain, as I have had mechanical heart valves since I was seven years old. Because of this, I have also been taking warfarin, a blood thinner, since then. Therefore, I require blood tests ranging from every day to every six weeks, depending on how steady the test results are and how well the warfarin levels are managed. This is because the higher they are, the greater the risk of internal bleeding and spontaneous intense bruising. However, if it is too low, then blood clots could form on my heart valves, which would lead to a steady failing of those mechanical valves; plus, with blood clots, a stroke becomes more likely.

This is one aspect of my heart disease, and others must also be monitored on a regular basis. Including my pacemaker, cardiac health, and general physical health to make certain that my longevity is not in jeopardy.

This is why, for the majority of my life, I adhered to the first reaction to heart disease. I did as I was told, stayed off the playground, did not participate in PE, and stopped skiing to avoid danger. To accommodate this, I spent most of my time in the school library, reading and writing stories about places I wanted to be and adventures I was certain I would have one day if I followed the rules.

However, there was a downside because when I read, I learned. I learned about history, philosophy, different cultures, and places worldwide. As such, I was inspired to see the world's wonders and desperate to experience as much of it as possible.

I'm proud to say I did and hope to continue to do so. However, this was not done by tossing off the chains of an oppressive illness. Rather, by accommodating the requirements of heart disease first with my goal in mind. Think, "How can I do it?" instead of, "I can't do it," or "I will do it no matter what!"

For example, I had an INR machine that monitored my blood tests when studying and working in China. But I also had a doctor who could check the results if required.

I found a balance with my health, and even though I wish I could go skydiving and drink excessively, I have ascended mountains in China, Germany, and the USA. Most recently, I climbed a mountain in southern Germany this week to reach a medieval castle and monastery in Oybin. The sixth castle I have seen this month.

This was made possible by balancing my illness with my goals.

This does not mean that it is a simple task, nor do I at all trivialize the desire to avoid one's health issues in order to achieve a sense of normalcy and control. However, doing so actually has the opposite effect. Not doing what is necessary to maintain the balance will only lead to an inevitable situation where any control is snatched from you, which is far more frightening than taking steps to understand and embrace the realities of maintaining one's existence.

Yet, even considering this, one of the main reasons people don't do this and prefer to remain anonymous is the stigma. This cloud appears to cover people's perception of you the moment they hear the words "heart disease," "pacemaker," or "heart surgery." The idea of you changes in their mind, whether for better or for worse and often leads to feelings of shame or embarrassment for those who admit to these difficult realities of their lives. It can lead to friends turning their back on you because they don't want to 'care for someone who is sick' when you're out to lunch, or can lead to loss of job opportunities as they see you as 'weak' or 'unreliable' even though you are more qualified than the other candidates. Or even in romantic relationships when they see your future together as being a potential nursemaid rather than an equal partner.

However, I would argue that this is not usually ill-intended. Oftentimes, it is based on concern or efforts to maintain their own self-interest based on experience, ignorance, or cultural understanding surrounding heart disease and illnesses in general.

When you see the change in their behavior, it can feel suffocating. It's like the humanity and freedom you try to maintain were stolen from you all over again, as no matter how hard you try, you will never be normal, or in this case, complete. It feels like you will never be seen as a full human.

I have seen more than my fair share of this reaction.

Even considering this, letting others' ignorance dictate your own care and, therefore, likely your longevity ultimately sacrifices your own control. Therefore, it should never be a deterrent for you to shy away from maintaining your own health.

I will discuss the stigma in the next post.