Friday, May 20, 2011

The Things I Can't (yet) Write About

I'm writing about most of the things connected to this cancer. Including the transformation of being a caregiver for a cancer victim to now additionally a caregiver for a stroke victim. As an aside, the stroke in some weird ways has been helpful, which I will describe below.

But first, despite my natural inclination to be as positive and upbeat as possible, it's really hard not to note how incredibly difficult it is have someone in your life have a disease and a condition like this. It affects so many aspects of life. I am not yet comfortable writing about some of these yet, both for reasons of privacy and respect for those impacted as well as to not influence how people view and interact with our family or individual members. Especially as time goes on, and this thing doesn't seem to have a resolution. But I will start hinting around the edges of some of the issues and I will note a couple things. First, this has been just an endless downward spiral, without any evidence of arresting the disease. That unrelenting slide puts enormous pressure on everyone (except Meagan right now, who because of her stroke, in largely unconcerned). That disconnect, between Meagan and those closest to her who know what is happening, is extremely challenging and a hard burden to bear. Because you can't connect on an emotional level and share the common concerns and pain. And ultimately the best relationships are about sharing on a deep emotional level.

Yet, as I indicted above, in some ways the stroke is positive. Because without it, I would be having regular pillow sob fests with Meagan about "will I make it" and it would dominate large parts of the day. So her "normal" state would be creating a lot of anxiety and high stress and emotion. Yet it would be shared and create more of a sense of connectedness and togetherness during this march. Right now though, she wants to approach every day with joy and a focus on today. If I summed it up, I'd say it's good for Meagan, and not so good for the rest of us. Because it changes the nature of the relationship.

The other aspect of this whole thing is the impact on our boys. Who are hardly boys, but fine young men, who have grown up and dealt with more than they should have had to at this age. Suffice to say, lives have been altered (not in a positive way) and there have been and will continue to be stresses, issues needing addressing, and responses to support them. In lots of ways the process has strengthened our relationship (I'm speaking of the ones between me and the boys), and allowed us to connect on a deeper emotional level. That's a good thing, especially for guys. Yet they are also young adults and have a need to forge their own path during this journey, without relying me to "solve" the problems (not that any of them can really be "solved"). It's hard to step back and let them each work it out for themselves (with outside professional support as needed). I'm incredibly proud of how both have approached this (if proud is the right word for admiration for how they have dealt with a forced, terrible situation). But there are occasions where my timely support and intervention has proven necessary. But it's come with its own cost in terms of my time, health, and sanity. It can end up dominating periods of time and make it hard to do just about anything else but address the issue and take care of Meagan.

The last aspect is the entire relationship with Meagan. A stroke changes everything. In lots of ways she is the same. In her typical social engagements with people - one on one conversations - it's probably hard to tell she is any different. She has clearly recovered aspects that were immediate impacts of her brain insult - such as her speech, her wit, her humor and her compassion and care for others. But she still carries deficits, some of which will last forever and she has new traits, and that has an impact in two ways. One, you have to develop a relationship with a new person. Two, it puts the caretaker role more front and center, and that in and of itself has implications in terms of relationship dynamics.

Pretty cryptic huh. More details will likely come in time. But it's important to note, especially as time goes on, that we are not just "coping" with a condition. It is a dynamic and highly fluid situation, with constantly emerging new stresses and issues. Which requires information gathering and learning, discussion, responses, and coping and adaptation. All of which is a huge energy, mind and time suck. And right now we are in the middle of this huge battle to control the cancer in the brain, that it's almost out of sight out of mind that the melanoma is going about its merry business in the rest of her body. So some days, early in the morning on beautiful days like today, I look out at our gorgeous garden, and just think, WTF?????

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