Now I’m not asking what it means to be alive. Then we would get into arguments about plants, fetuses, the whole Terry Schiavo thing, and even the argument about the potential for life being enough. This discussion is going to be esoteric enough without jumping down that particular rabbit whole. I want to know what it means to us as human beings to live as opposed to merely surviving. This is important because this is a questions that people who are chronically ill and in pain ask themselves on a regular basis.
Still living is hard to define because it means something different to everyone. Some people live with a bunch of books or video games, while others can’t imagine life without dance clubs and big parties, or others live to explore mountain tops and vast oceans. No one is wrong or right in how they choose to live, but what if that choice was taken from you? I was a mountain tops, oceans, motorcycles, dancing, travel, endless adventure kind of girl, until I got sick. Now my life revolves around medications, my bed, my couch, and endless doctors appointments. When I do brave a social situation I listen to other people talking and I can no longer relate. Other people talk about work stress, their latest adventures with friends and family, their plans for travel, their relationships, and general gossip. I know that for a while I had a life like that, but I remember it in the way that we as adults remember childhood. We know we spent many years with no worries, nothing to do but play and maybe go to school. However, at the time that was all we knew and we didn’t understand that it would one day end. So we didn’t know to appreciate it. The same thing happened with my health. I had no idea it would suddenly go away and so I didn’t appreciate what I had. Now I don’t actually remember what it’s like to not be in pain. Intellectually I remember a time when my worries revolved around doing my job well, paying my bills, keeping the house clean, keeping food in the house, keeping up with the laundry, maintaining my social obligations, having all the fun I could manage and sometimes getting some sleep. Sadly that memory is just as far away as my days in preschool. I know it happened, but I can’t touch it.
So now my life of places to rest with ice packs and heating pads, medication doses, countless doctors and painful treatments has me wondering, is this living? Is placing one foot in front of the next, day after day really a life? My answer is a resounding, “NO.” This is not a life, this is just surviving. I breathe in and out, my heart beats, and I go through the motions. The things that made my world worth living in have been stolen. One foot in front of the next. When I first got sick it was easy to fight because I believed that we just needed to figure out what was wrong and everything would go back to the way it was. One foot in front of the next. It’s been nine years and I have since learned that regardless of what any doctor says that I should not get my hopes up, because when they fail to find a diagnosis the fall is that much further. One foot in front of the next. Still I spend my days researching what has been diagnosed, the latest research, new specialties, and finding new doctors in the hopes of finding help. One foot in front of the next. Of course I’m desperate to get better, I do everything suggested to get there, and I smile and nod through every unwittingly heartless comment from doctors, strangers, friends, and family. One foot in front of the next. I have learned every trick to pull me through the worst of times, and there are many, and to cling to the few good ones. One foot in front of the next. But really, is this a life? *STUMBLE*
I’m not living, I’m surviving and the two are vastly different. Someone lives a life, but they only survive a car crash, or cancer, or a hostage situation. Survival is temporary, then you go back to living. Survival is a struggle, where you are torn down to nothing but raw and naked skin and then fight beyond what even you knew you were capable of to find your way back. It is the point of our lowest of lows and those of us that pull through it can lead us to our highest of highs. We, as a species, are hard wired to struggle to survive. However, there are always limits.
To be clear, I’m not trying to freak anyone out. This isn’t a cry for help, a threat or a promise. I’m just being a little more honest than usual. I’m tired. Tired of being the one with the brave face and the fake smile. It’s not real. There is so much that you just don’t see. So much that we hide because we don’t want to scare you, because we don’t want to frighten you, because we don’t want to have to worry about you worrying about us. We don’t need that on top of everything else. What you probably don’t see are all the tears, the ones we cry when we are alone, when no one is looking. You don’t see the hopelessness that seeps in around the edges with every shrug of a doctor’s shoulders and every blank look from friends and family. You don’t see the anger that chokes the air out our lungs when nothing changes day after day no matter how hard we fight. Most of all you don’t see how lost we feel. That we no longer even know what to hope for. Yes, of course, we all just want to get better, but what is the path to get there? Do we hope the doctors find a diagnosis? What if that diagnosis is terrible? Is that better or worse? Will things ever change or is this it? Most of us face all of this alone, so our loved ones can sleep easier at night.
But back to the original question, what does it mean to live. Those who are chronically ill or in pain are extremely limited in how they can engage with this world. Whether the illness is physical or mental or both we spend most of our time fighting for small moments of normality. Whether it was getting to the grocery store or an hour with a friend, it meant more to us than a trip to Italy means to many who are healthy. We cling to these victories because they are our life lines, they are the moments that help us remember life as we once knew it. I know that each and every one of us has our tricks, our ways to find a piece of happiness in all this struggle, but I still have to ask: Are you living or just surviving? And the bigger question–is it enough?