|Photo by David Johnson|
I love my children. Each of them so different from the other, none lacking in any way to the next. But, let me tell you….no two are more different than the twins, Emma Jane and Sara Jane. For those of you old enough to remember The Odd Couple (dating myself here), Emma would be Oscar. Always just going about her business, moving in and out of our days with interesting random facts and very dry humor. Not much bothers Emma – or so we think.
One of the greatest gifts Lupus has given me is time. The first moments I began to realize this were the days following my “code blue” episode in the hospital almost two years ago. Time became something I paid attention to. It almost took on a three dimensional property. I felt it everywhere, yet nowhere. This all pervasive gift that no matter how hard I tried, no matter how precious, I could not hold on to it. It meant everything to me, and it meant nothing.
Letting go of time has allowed me a place of stillness; and in this stillness, I have rediscovered my children. Hours, upon hours, upon hours, have been spent with them by my side. In hospital rooms, in bedrooms, next to my chair or sitting in the kitchen, I have been awakened to the miracle that resides within each one of them. Some days I feel as if I am seeing them for the very first time. I may have been a much healthier person two and a half years ago, but all the health in the world does me no good if I am missing the very thing that makes life worth living. The people I love.
It was during one of these moments that Emma and I were having a rather passionate discussion. As is quite often the case in our home, we were discussing the issue of social justice; which eventually leads to topics like philosophy, politics and religion. Yes, these can be rather deep discussions indeed! The topic de jour revolved around the concept or perception of space. I was trying to describe the idea of interdependent origination and its affect on our actions in this world. Simply put, cause and effect. Taken to the smallest degree, one understands the butterfly effect. Moreover, the responsibility we have as human beings to our world and all that is in it.
I was trying my best to give examples of how close we are, in reality, to those that live on the other side of this globe. I began by telling her that if someone in our immediate family was hurting we would not think twice about helping them. I then moved out into space and spoke of her grandparents, then her friends and then the people that live in our town. I kept going until the borders reached out past the country in which we call home. I then pointed out the dilemma this creates if we are truly all connected; if my actions really do have an impact on my friends in Africa or the glaciers in Antarctica. Just because we do not understand the consequences within our limited understanding of time, does not make it not so. Nor does it make it less important.
I then moved on to something I thought would be easier to relate to. The human body. Much like Jesus talks about the Body of Christ in relationship to the church, there is an obvious property of interconnectedness. Comprised of many parts, all very different, all playing different roles – yet when left alone, quite useless; and when damaged can lead to the destruction of the entire body. At this point, I was becoming quite passionate. Lost in the enthusiasm of my feelings with regards to this subject, it took me a bit to notice the pain that had found its place within Emma. It was then that Emma spoke words that that I will never forget.
I do not know if it was the look on her face, or the utter sadness in her voice, or the words that she spoke, that had the biggest impact on me. Most likely, it was the collective effect of all three. She looked directly at me, and in the quietest of voices, with a tear in her eye, she said this:
“Why can’t the world just bend down and help the wounded foot?”
I weep as I type this. The very reading of it floods my heart with emotion. Pieces of a seemingly disconnected, chronically ill state of being, woven together in one moment. If I had not gotten sick, my spirit would not have broke. If my spirit would not have broken, I would not have searched for a better way. If I would not have searched for a better way, I would not have found the way to peace. If I had not found peace, I would have no concept of the beauty of time. If I did not understand the impermanence of time, I would never have been in that moment. If I would have never been present in that moment, I would have never – never – heard the words so eloquent, the sound so beautiful, the message so true that flowed from the innocence and wisdom of my daughter.
But I did.
Whether we choose to understand it or not, we are all connected in this life. The voice I use, the food I eat, the things I buy, the time I spend, the words I write, the phone calls I make, the emails I type, the help I give, the hurt I cause… Just like the whisper of the butterfly’s delicate wings or the devastation of an earthquake, nothing is independent. Life is a tangled web of interconnections, being constantly transformed by the choices we make.
I guess when I found out I had lupus I was presented with choices I needed to make. I am actually thankful that I was given the opportunity. Being present in the lives of my children is a choice I may never have understood if not for that opportunity. To really hear them, to let go of time and space has simply melted away barriers that once took up so much energy to maintain. I’m amazed at what came so easily from Emma’s thoughts that day. Their impact on me personally as well as my views on social justice issues has been great. Written in my heart forever.
If I had not gotten lupus…