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As Kevin and I travel the cancer road together one of the things I am increasingly aware of is the way illness increases intimacy and erodes privacy. Let's start with intimacy.
Ever since we became a couple intimacy has been one of our guiding principals, not only physical intimacy but emotional. We have tried to maintain a deep sense of honesty with one another, which deepens into a more meaningful kind of intimacy. As he's become ill, that intimacy has increased. The bathroom is no longer such a private place. We've talked more about bowels than is likely wise. We have had some big, hard conversations and more are likely to come.
What's more, my barriers to intimacy have eroded. I have cried in the arms of nurses, doctors, strangers in the grocery store. I have been prayed over by people I didn't know ten minutes earlier and I've accepted their prayers gratefully even if it is a version of prayer that I don't participate in. I have been clutched to the bosoms of women I will never see again. And I am grateful for it all. These intimate acts are gifts when I need them most, providing comfort and the possibility of hope.
But too much intimacy might suggest that nothing is private anymore, and that's just not true. All of this intimacy needs to be balanced with privacy. In the hospital Kevin has been poked, prodded, examined and measured via every orifice and fluid. He is asked questions that seem intrusive and has to give the information freely and honestly, because it all has a bearing on his health. Because of this I am trying to maintain as much of his privacy as I can.
I don't go into his bags without asking. I make all the doctors - including the silent interns - introduce themselves before they can be in the room while he's being examined. I make sure he can shut the door when he goes to the bathroom and isn't interrupted if at all possible. I ask why, why, why so often that some of the doctors are now telling us why before I can even ask.
I want to ensure that Kevin has as much authority as possible over his own life as he walks this path. And privacy is one piece of agency that reminds him that he is still whole, still a man, still his own self. (Mind you, I have and will make mistakes here. But at least I'm aware and trying.)
For all that we need intimacy, we all need private time as well, especially when ill and facing the big issues. I'm honored to be the guard dog at the door.
(c)2014 Laura S. Packer
I honor you, guard dog with a heart and a mind and a clear sense of proportion despite all the challenges. You model for us what we can be. Sending love --
ReplyDeleteYou are a wise soul indeed Laura. I remember caring for my father when he was battling cancer, privacy was indeed a luxury. Bless you for being so mindful of his needs.
ReplyDeleteLove to you both.
Laura, from the perspective of a nurse, I want to tell you that you are doing the right thing; just the right thing; precisely, intuitively, absolutely the right thing.
ReplyDeleteIt is an aspect peculiar to caregiving to cross the boundaries, metaphorical and physical, from a social distance to an intimate one, within mere moments. A knock at the door, “Hello,
I’ll be your nurse this evening. How are you feeling? I’m going to palpate your abdomen, tell me if it hurts.”
They will not remember to guard his privacy, though they will (they ought, they must) respect it. They will choose safety over dignity every time. Both can be managed, if you can help them see how. Dignity will come to mean something other than what it did, to you both.
They will cause him pain; they will bear witness to it; they will do their utmost to relieve it.
They are people, too. Just folks. It is important to remember. It is however their obligation to be caregivers first, and just people second.
Above all, they care. Every person who walks into that room; every person who sees his chart, every consultant and service person you encounter; they care for him. They care for you.
They carry you in their hearts, home to their dinner tables, to bed with them at night, seeing their children off to school. You are not alone.
thanks Tess. We are getting good care, very compassionate and kind. Thanks for the reminder. And thanks for telling me I'm doing it right. I'm so damned scared I'll screw up.
DeleteYes. You have a wise, tender and loving heart. I've been a Hospice Volunteer and an ER volunteer and the dignity of privacy, of knowing who and why - make a difference. Still keeping you both tucked in my prayers.
ReplyDeleteLaura,
ReplyDeleteYou are so smart! You've stepped into an incredibly difficult role and you're doing a great job! I'm proud of you. And honestly there's no one I can think of who would be a better guard dog for those they care about than you! Love you
Laura your love, compassion and sense of what is right has always held me in awe. I continue to be inspired by both you and Kevin. I am honored you have included us in your journey. I pray that we all benefit from your honest perspective.
ReplyDeleteI wish we were local enough to be some of the people giving you unexpected and comforting hugs. Kon and I have you very much in mind and are wishing you the best.
ReplyDeleteI've watched two other friends battle cancer. Both did way better than their initial prognosis; one being cancer free for years despite only being given months to live and the other still being clear for longer than expected given the type of cancer he has. They're both doing great and tell me that treatments get better all the time. Here's hoping you get the same happy breaks and get through this as quickly and painlessly as is possible!