Yesterday I spent my clinical day in "therapeutic communication" (that's fancy nursing speak for listening) with an individual who has ALS. I was shadowing a nurse on the floor and this individual picked me out of the flutter around them and began to talk...and talk...and talk. This seems to happen frequently as I meet and interact with patients at the hospital and I am not experienced enough yet to know if it is that way for everyone, or if it is something about my face or demeanor that draws people into unloading. This person literally talked for nearly three hours, telling me their life story, relating things up to and past their diagnosis, at times the memories bringing them to tears, which I subsequently would blot from their cheeks as they spoke, unable to move their hands to do it for themself.
As they talked, I found my mind would drift back and gently touch our own weird, emotional journey through Alexander's and Joseph's illnesses. I found myself half waiting for openings that never came to share our story too, to communicate that we too had been through the unthinkable, the unusual, that we too had gone through something complicated and strengthening. But I refrained, telling myself, reminding myself that this is their time, their turn, their story. The deeper I get into nursing, the more I come to realize that Joseph's illness and our journey together is not going to be a front and center story. It will color and influence what I do; it gives me a frame of reference. And most every person who has ever gone through anything weird medically has a deep, driving need to tell their story. Sometimes it can almost seem like a competition - who has suffered the most. Who is strongest. I believe this comes not so much from ego as from a need for validation, to know this was not undertaken in vain and that someone has seen, heard and cares. It can be addictive though, this desire to talk and share and shock. For a time I was angry at anyone with a so-called normal life and wanted them to know just how freaking lucky they were. Then I wanted everyone who was to be fearful of their child having their tonsils out or tubes put in their ears that they were silly for complaining or thinking it in any way compared. And I wanted to force people to hear, to listen, to know. It was as if I were angry at anyone who had been blessed enough NOT to know.
As the years have gone by, the anger has left me, transforming to a kind of dejected helplessness for a time, with a sense that my support or caring doesn't really matter due to the depth of my powerlessness and that my story, no matter how moving, is small in the huge world of human suffering. Yet I feel chunks of that now giving way to something different and more peaceful. I can't do everything, it is true. And as wonderful as he was, Joseph was a small boy in a great big world, a sad story in a wilderness of suffering and bleakness. But there is this little something now, coming to me. I can comfort. I can care. I can make it as good as it is possible to be under the reality of what it actually is. Not everyone has to know about Joseph to know what we have been through has done for me nor to be touched by the blessings of his life, illness and death. It doesn't have to be so in-your-face for me to be honoring him, honoring myself, utilizing what is left now that he is gone. The depth or seriousness of a patient's diagnosis truly does not matter. What matters is another human being is fearful or sorrowful or lonely - three of the most poignant, soul-stirring words in the English language, and that I have been given a brief chance with each of them to do something about it. That they need to be heard and at this point in life, I am uniquely situated to hear them. But doing this requires I give up my need to be heard. This is difficult in some ways; there is this fear, you see, that Joseph is being forgotten, spurring a desire to speak of him in any situation to anyone who will listen. In other ways, it is validating and easy; no amount of talking, bitching, complaining, fighting, spitting, searching or crying has yielded a different answer for me. He is still gone. There is a kind of peace in accepting I don't have to speak to make him remembered and people don't have to know his name or even his story to be touched by him. He is in ME. If I manage to touch someone, then they have been touched by Joseph by proxy. I can embody those things I admired in my son and go forward secure that I carry him not just in my heart, but in my actions.
Nobody ever felt heard or understood by someone insisting on prattling on about their own situation, no matter how similar, no matter how moving. People need silence, the center light, undivided attention. If I am going to be the nurse I want to be, I have to let go of this childish need to plunk Joseph into the middle of what I am doing at any given opportunity. I must let someone else's suffering occupy that spot. On some level I am learning it is okay for me to do that. It doesn't lessen his place in what I am doing. If anything, it amplifies it. In holding him softly, I hold him close.