When you’re chronically ill you have an intimate understanding of how fragile the human body is because you live with it every minute of every day. It doesn’t matter if you’ve been sick for months or years, you’ve lost your health and with it has gone the carefree days of never considering your body in your day to day life. In fact, your life is quite the opposite, your body makes all your decisions for you, whether you get out of bed, whether you eat, whether you work, or even see friends and family. This hyper-awareness of just how vital and easily lost health can be; makes the thin line between life and death something we know as well as our own name.
For most healthy people death lives in another country. It’s far away, a foreign concept that they only really think about on the rare occasion that it comes to visit their area in the form of someone close dying, getting a dangerous disease, or a fatal accident. For me, with a chronic illness, death is usually a polite housemate. I live with him every day, I always know he is there, but he does his dishes, cleans up after himself and is for the most part pretty quiet. Lately, however, his manners have deteriorated, he’s leaving dishes in the sink, hogging the remote, and waking me up at night with loud parties. Chronic illness is like this sometimes, it goes through phases of maintenance and then it goes sideways. I’m in a sideways phase.
You see, I have dysautonamia, among other things, and it affects things like body temperature regulation and my heart. Right now my heart is all over the place. Usually, my problem is very low blood pressure and I also have POTS, but right now my blood pressure and my pulse have been running both really high and really low to such extremes that my cardiologist has decided to run tests that were run just one year ago. The first was wearing a heart monitor, which I’ve already done and the next is a chemical stress test, which is highly unpleasant. Last time they came out slightly abnormal, now, of course, they are looking to see if anything changed. In the mean time, I have to say that having your heart constantly on Mr. Toad’s wild ride is beyond exhausting. I really feel like my body and I are completely disconnected and I know intellectually that having trouble with the heart is a very dangerous thing. This is on top of all the other symptoms my body fights with on a daily basis. So, it’s got me thinking, but not in the way you might think.
Living with chronic illness and the awareness of your own mortality gives you a clearer perspective on life. You’re aware that life is fragile and precious, that your time is limited and how you spend it is extremely important. As you begin to accept these facts you start making more careful decisions with your life. You pick and choose who and what you spend your time on. You’re more mindful with your words and your actions. You really appreciate the small moments of joy that appear in your life. You treasure the small acts of kindness that the people in your life take time out of theirs to do for you. We know better than to leave loving words unsaid or leave a situation angry. Chronic illness isn’t exactly a gift, but it does provide a certain kind of awakened perspective that allows us to live more in the moment than the average person. That is a gift.
I know that I make choices every day that enrich my life. I’m very careful about whom I spend my time with and more importantly who is in my life. Even if I’m not feeling entirely well I always make the effort to spend time with my family. Everyone I love knows how much they mean to me…in detail. I make great efforts to still travel and go to concerts when I can so I still have joy in my life. “I love you,” is a phrase I speak often with no need for reciprocastion, greetings and goodbye’s with everyone even with family that I share a house with. Living with chronic illness is a hard road, but it has allowed me to live a more present, compassionate, and mindful life. So that, should that line between life and death blur from one minute to the next, I will have no regrets. For that, I am grateful.