I am not my illness. Although on days like today, I am quickly forgetting who I am and the qualities I possess. I feel as if I am melting into a puddle on the floor, made up entirely of my “symptoms”. I am going to see a new doctor in a few days, hoping with every fiber of my soul that this person will have answers-at least, an answer I have not heard before. To spare details (because this blog is for everyone, no matter your illness) I am now being told one of the problems may be complications with my heart. That would answer a lot of questions and fill in a lot of gaps-and although the idea of something being wrong with your heart may be frightening to many, the fact that it may bring me an answer, the fact that this may mean the book isn’t shut yet on this illness, that there may be another solution, makes me welcome the challenge.
It is my boyfriend’s week off from work, and I have not been able to do anything for days. I managed to make it out for a drive on a nice day when it wasn’t too humid, and we stopped at the bookstore, one of our favorite things to do, sat on the floor in one of the aisles and read for a while. I was so proud of myself when I came home. I thought this was the beginning of an upturn, but alas, later that evening, I was proved wrong. Very wrong. Unbelievably wrong.
I am sitting here in the living room watching him do dishes. I am too nausceous today to even enter the kitchen until they are out of sight. I watch him, cleaning them, and I just want to tell him to run, to go on without me. I want him to have a better life than this. If I can’t escape it, at least he can. Quickly my thoughts jump very far out of this moment, and into the future-I wonder if he would ever want to marry me, and why. I wonder if he believes this is forever. I wonder if, he ever did want to marry me, I’d be well enough to enjoy my wedding day. I’ve been dreaming of that day my whole life-will this disease take that away from me too?
I move over to the couch, put my head in my hands, and sob. Something that is not abnormal for me to do, and not abnormal for him to see. He comes over to me, and as usual, asks me what’s wrong. I give the usual response-citing that I fear I will never get better, and asking him why he is even with me. He begins to list many reasons, some of which even sound like me and the person I am. The person he is describing is trapped in this sick body, and is kicking and screaming to come out. I hear the words he is saying, and it is as if he is describing an old friend. The qualities sound like someone I know-the things she has done sound familiar, it’s as if he is speaking of an old friend but I can’t quite remember her name. Her name is on the tip of my tongue-what is it? But this person is me. Was me. When my health left, did the qualities that make me who I am leave too? Or will they live forever, even if that part of me is dead? And what point does it become who you were, and not who you are?
I hope he remembers me for who I was. Or is it who I am? I am not so sure anymore. He reminds me of a day in New York City, about a year ago, in an attempt to remind me of who I am. It was a Fall day, and I woke up that day feeling better than I had in a while, so I turned to him and said, “let’s go to New York.” I drove the 90 minutes into the city, which, according to Dave, takes strength in itself. After a very long, fun filled day, I was exhausted, and we got lost trying to find the subway to take us back to where I parked the car outside of the city. We were walking down a dark, filthy street, when I began to cry. I was in terrible pain, and I feared we would not be able to get back to where we came from. It was at this point that panic had set in, and I was questioning if I’d even be able to drive home, fear and dread rushing over me, thinking the worst was about to happen-what if we couldn’t get home tonight?
Suddenly, we saw a taxi cab fly out of nowhere into a hydrant, just missing a store. Without thinking, I ran up the street to the cab, afraid that the driver and passenger were seriously injured. I didn’t even know if Dave was running behind me-I forget to check if he was nearby. I forgot that I was just crying, and that I was in pain, and that I was in a deep set of panic of my own. The girl in the back of the cab opened the door, blood dripping down her face, and a kind stranger who had run out of a store handed me a paper towel to give to her. Minutes upon minutes passed by, an ambulance came, we gave our story to the police, and I tried my best to keep the woman calm. I don’t know how much time passed, I was so lost in the moment, but after everything settled down, and we turned to walk down that same dark, scary street, Dave looked at me and said, “You know you were crying right before that happened, right? Then I just saw you turn and run up the street. It was as if you weren’t just crying and in pain.” He continued to tell me this over and over again on the way home, and still a year later, he reminds me of this story. This story, where my need to run into the face of danger and help a stranger, this shows me who I am. Who I AM. Even in the depths of pain, who I am rose above it, and I forgot about myself in the instance where someone else was in danger.
That’s the thing about this scary (chronically ill) world we live in. It has prepared us for danger. It has showed us who we really are. It has made us look into the face of danger and run straight into it. When that cab hit the hydrant, I didn’t run away from the scene, I ran straight into it, a skill I learned and mastered while navigating through this scary, unending maze. Every single day we run into the face of danger-whether it’s getting into the car to run an errand, taking care of our children, or simply (and the word to use here definitely isn’t “simply”) getting out of the bed every morning-we make a choicee to run straight into the face of danger. We don’t wake up to birds chirping, we wake up to a brick hitting us in the face with the pain. But, we get up. And eve if we don’t get up, we open our eyes. We choose to say, “not today, you won’t get me today”, and we brave another day, head on, right in the face of danger.
I’ve said it before and I’ll say it again-I don’t regret having this illness. It has given me some of the qualities I most admire in myself and in others I have met who share my pain. Strength. Strength that most of you probably don’t even realize you have. I’m here to tell you-deciding to wake up in the morning, KNOWING you will face this pain again? The greatest act of strength and grace that ever been known.
Oh, and what Dave loves most about me? My heart.