Tuesday, March 30, 2010

Blue Umbrella Sky

I want so badly to write, and I have so many things to write about. I have avoided doing this, as I almost do not know what to say that doesn't sound repetitive and almost giddy with blessings. I am so thankful to be pursuing something as important as what I am doing. I am so thankful to finally, FINALLY have a place in my heart and in my life with so much purpose and clarity. I struggled bitterly for so many years of my life, fighting inwardly and outwardly, with a kind of inner anger over my lack of direction and lack of fulfillment. I guess the world moves in its own time. I have so many deep regrets, but so many vivid lessons to counteract them. I learned and I am so much better. A better person. A better wife. A better mother. A better friend. A better caretaker of myself.

I have now lost 110 pounds. The person I see in the mirror continues to startle me with this physical transformation, with the wisdom and acceptance in my own eyes when I see me unawares. This place of self love is new....brand new kind of new. My inner image really doesn't match what I see in the mirror, and every day it is fun when I get dressed. I still feel the familiar anxiety when I pick up that pair of pants that was too tight and put them on and the butt is so baggy that it is probably indecent and frumpy to wear them. I love that it no longer hurts to move, and to feel that lack of pain on both a physical and an emotional level. I still get fretful when it comes time to shop; I suppose it will take years of unconditioning to accept that I can buy regular clothing in regular sizes. It will take a lifetime of Joe telling me I am beautiful and reveling in the hope that maybe I really am before I probably ever believe it. But interestingly, this place I am at spiritually comes with less demand for physical perfection. I am far more concerned these days that people see me as kind...or strong....or focused.

Last week I got to care for a patient who was dying of cancer. Rather, for this patient's family, who were coming to terms with the very likely possibility that for this individual, their journey on earth was drawing to a close. They were a loving bunch and I had opportunity to face many personal demons. What I found though was that rather than monsters waiting in the shadows of my mind to take me over, I had instead places of deep, abiding peace and understanding. I had not much to give other than a sympathetic presence, but it mattered. And knowing that saves me inside. There was speculation that the patient had not been getting sufficient care at home - a statement that sounds full of judgement, with implications of neglect on the surface.... until paired with a disease so universally all encompassing. Then you realize - not sufficient care can have many meanings, many implications, from the pure exhaustion of a caregiver in that role for so very, very long to a lack of resources, be they financial or emotional, for any number of reasons, from any series of angles. I faced my calling head on last week and heard it echo back to me a cry of otherworldly voice.

My home and my heart are happy. I continue to struggle against a fear of loss - it is hard not to. But I now believe that perhaps that too in time will mellow and change, forming through the span of my years into something else that yields yet more wisdom. Hard won lessons to be sure, these bits of self I have acquired, these pieces of forgiveness and purpose found sparkling among the rubble.

Friday, March 5, 2010

Long Time Passing

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.