There are many realms and layers of influence, the places where our lives intersect intimately with others. Any way you categorize life there are crossroads with other souls. Work, friendships, and these days the vast interwoven web of the world are all places of connection. This can be especially true around important life changing events. Parenting for instance changes a person – hearing the plight of any child awakens empathy forever after. It may be especially true with cancer – which is nearly as common a life experience as parenting. To live your life after a cancer diagnosis is to perform a a series of death defying acts.
As you may know I work in a medical office. As the referral coordinator I am generally clued in anytime someone in our practice gets a cancer diagnosis, simply because I am the one that arranges insurance pre-authorizations and appointments with specialists. Often times I do not know the people. Sometimes I do. Sometimes people make seemingly miraculous recoveries, and regularly people die. There are many patients in the same boat as me, doing fine while under surveillance. Clearly it can be a bit triggering to be doing this work. I think my experiences in Cancerland give me an added edge, helping me to be fierce when dealing with the insurance beaurocrats and their flow charts.
Last week a friend got some very final news. Since then I have been very aware as I go about my days that she is living her last days this week, or maybe next. I am so grateful that I had a chance to talk with her about her impending death when I saw her last. It is also a gift that she called and spoke with me for a few minutes so that I could say goodby to her. I promised her I would become more involved at the non-profit she founded, and that I would dance at her memorial service, which she is visualizing as a party. Life doesn’t get any realer than that. Sometimes our death defying acts come after we pass.
Then there is the blogosphere. Time spent writing and time spent reading the blogs of folks on WordPress. I am so lucky to have connected with so many others who are negotiating through cancerland this way. A few are writing about how their life is post treatments, others simply reporting on their initial treatments, and some telling stories of their metastatic disease. These metastatic folks are somehow simultaneously preparing for their own death, while hoping to live as long as possible to be with their beloved loved ones. Mostly everyone is just trying to deal the best they can with the hand they have been dealt.
When someone I know and love personally gets some bad news about their health it requires some amount of processing. Somehow being able to talk to them makes it easier to assimilate the reality of it, and to accept it. In the same way seeing the body can help the grievers to process the death of a loved one, physicality helps us to truly know something. The virtual connections can result in some tears shed too, like when one of the bloggers I follow get some bad news. These tears do not lessen the importance of the loss of someone closer to me, it is acknowledging that we are all one. It is acknowledging that even if I am not in their inner circle I know enough to know that the world is losing something precious if they depart.
I think about all of them a lot. My loved ones , the patients, and the other bloggers. Even though I don’t know what many of them even look like. I wonder how they are doing, and what might help them to be in the best possible place for themselves. Though I believe in miracles, and hope desperately for them, the reality is a whole lot of people die from their cancering. This includes some people very close to me, patients in my work life and other bloggers.
“If something is worth doing, it is worth doing badly.”
I reach out to other bloggers with comments, and wonder if I am doing more harm than good with my encouraging words. What do I know of the inner most struggles of these others? Do my comments come across as a kindness, or as some sort of weirdness from a stranger. This world of blogging in which the writer exposes their soft underbelly can create a sense of intimacy and comradely between strangers. Or perhaps the intimacy is mostly one way? It is so easy to relate to the plight of others when it is written with such searing truth and vulnerability. Does knowing that the person commenting has walked through the cancerland portal make a connection more “real”?
I find myself reaching out, even though my thoughts and experiences may be wildly different, and of no use to anyone, I still reach out. I choose to follow the words of Ruby Rowland, 90-something mother of a friend, “If something is worth doing, it is worth doing badly.” And hope for the best when I make comments. Because I know that the kindness of strangers got me through some difficult moments. Because it means a lot to me when others read my words and comment. And because it seems to me that the wisdom of others that I have found useful, might be helpful to others, and so I ought to pass it on.
In person, with the people I know, I can express my love by cooking for them. At work I can process my triggered feelings and do what it takes to get the best care possible for the patients. In the blogosphere? I make comments on other blogs when really what I wish I could do is go over to their house and feed them, or do laundry or some practical hands on comfort. Which would probably be pretty weird since I am a stranger despite what kinship I may feel for these other cancering folk. Yet weirder and unprofessional if I were to call the newly diagnosed patient, whom I don’t know, and offer such things. But in the Blogosphere the real stuff is said, the hard and the tender. Like an intimate conversation with a stranger on a train – it is real.
As I get farther away from my own diagnosis and treatments I can’t help but realize that in most ways I have left cancerland, though the possibility for recurrence remains like static in the background of my life. Perhaps I reach out because it helps maintain a realness to the experience of undergoing diagnosis and treatments. Like saying to the universe, That really happened, right? To read the words of others is a reminder that it really did happen. So there is some service to self in this as well. Perhaps blogging is a sort of mutual aid association?
Though cancerland is not a club anyone wants to join, it does permanently color the world in new hues, and once you see the “new colors” of cancerland you can’t unsee them. Which make the “normal-land” just a bit alien. At times it feels like getting a cancer diagnosis is leaving OZ for Kansas. (Or ought that be Cansas?) The thing is most of the people walking around me are still living in OZ. By reading the blogs of others who are sending dispatches from cancerland, and by blogging my own reports from that strange world we are both making acts of validation:
“Yes what happened, it really did happen.”
“It isn’t something to Get Over.”
“It is neither good nor bad, it just is.”
“A lot of it really sucked, though some of it was strangely wonderful.”
“No one is alone in this.”
Which is why reading the words of women living with metastatic disease is so important. By doing so I am admitting to my own mortality, it is a means of looking at a possible future with humbleness. It is a way to remember the very real aliveness of those who live with that particular ax over their head. An ax which might yet take my head in the future. By reading their words without flinching I become a bit more human. By commenting I hope to convey that they are seen and heard, that their words have impact. In all the pink hoopla of breast cancer – there can be a lot of turning away from that painful side road. By reaching out to those in that realm I want to convey some light to them, because I know there is a difference between living with metastatic disease and actively dying, even though I can not really know how it feels it be in their corner of Kansas. There are infinite combinations of feelings and perspectives on the human journey, no matter where we travel.
Ironically it is the ones new to treatments who are often expressing the most pain – they have just landed in Kansas and are understandably a bit bewildered. They haven’t figured out yet how they are going to come to terms with their membership in the cancer club. Though really I am not sure anyone ever truly comes to terms with it.
Sometimes at work I become a bit triggered. I get the facts without any of the clues as to how well the person is or is not handling it all. Unlike the reports on the blogosphere there are no emotions expressed openly in chart notes and pathology reports. Which somehow makes it harder to wade through at times. It is funny to me how the absence of emotions calls up so many. Regardless I need to be calm and collected in order to go through the questions posed by insurance in order to get them the care that they need. I am not a care provider, I am just an office girl in the back. One that usually does not interact with the patients. Still I have cried when I have heard that a patient I didn’t even know has died.
Written words connect us through the heart, they offer realness that has a power to inspire or change us. This is why I blog. This is why I comment on other people’s blogs. It is to offer up a glimmer, it is to honor those who have gone, it is to document life. To interface with others who are living their own version of death defying acts of daring is to feel more alive. We lend strength to the efforts of others when we show up with our hearts open. Whichever realm that may be in.
P.S. I feel tremendous gratitude to the women & horse performers who grace this post. Their acts of sheer audacity are inspiring even 50 or 100 years later. If they could do such amazing things then surely the human capacity to thrive despite facing danger is immense enough to see us all through.