Another example is when she helped me move into my new house a few years ago. The move took place over the course of several days and I loaned her a key to my front door so she could move boxes in at her convenience. I had forgotten that I had given her a key until a few weeks later when I invited her over for a visit. When she arrived, she didn’t knock on the door. She just let herself in using the borrowed key. I thought it was an awfully bold move. I hadn’t meant for her to keep the key and I certainly didn’t mean for her to use it so casually. I didn’t mention how her use of the key made me uncomfortable, but I did ask for the key back. She suggested that she hold on to it in case of an emergency, which I couldn’t really argue with.  For someone in my condition, it is important to have someone who can access you quickly in an emergency. But I just don’t trust that she won’t take advantage of the situation. It’s not just the casual use of the key that bothers me. There’s a combination of her words and actions, something that’s difficult to explain, that sends the message that she has a right to have full access to my home and life because she helps me out. She becomes bossy and tells me what to do. “Stop talking and take your medicine,” was uttered most recently. The really interesting part of this is that she never treated me this way before I became so ill. Or at least I never noticed.

Let me be clear that I don’t think there is any malice at play here. Phyllis is a very kind person and I think her intentions are pure. She is just socially awkward. She just doesn’t seem to understand the unspoken rules that the rest of us understand. A few days ago, she walked into my kitchen, took all the items out of my refrigerator, rearranged the shelves, and put the items back in where she thought they should go. She did not ask my permission and we hadn’t discussed the order of my refrigerator shelves. Most people would know that that is completely unacceptable behavior, but I think Phyllis just has no clue. It may be difficult for her to comprehend how painful it is for me to lose my independence and how important it is to maintain my privacy, dignity and autonomy whenever possible. But I sometimes feel like a child with no power or voice to control my own environment. If I speak up, I may lose the only help I have to survive.

Cary, how can I set boundaries with Phyllis without threatening our friendship and my lifeline?

Sincerely,

Becoming Helpless and Nearly Hopeless

Dear Becoming Helpless,

Most everyone knows that you’re supposed to leave the hospital room when someone has to get dressed, and you’re not supposed to rearrange their refrigerator without permission. Still, for some reason, your friend does not seem to know that or does not seem to care. I wonder why that is.

I put myself in people’s shoes. I imagine what they believe and how they feel. I imagine that this friend of yours who is helping you out is doing her best. She may be anxious and self-conscious about her role. She probably believes that her take-charge, no-nonsense approach is what is required. This may have been taught to her; she may be reveling in it; she may be secretly trying to show you, finally, how things are done; she may be getting a charge out of it. She may know that she is pushing your boundaries and feel that that is the right and necessary thing.

Still, she is helping you. It is understandable that you would fear saying a word of protest. It might drive her away. But I think you can strengthen your relationship by taking her into your confidence.

Our preferences are just preferences; they do not raise us above anyone else or solidify our moral standing. We may have been taught certain manners but they are just manners. They are not central to who we are.

Central to who we are, are deeper things. We are creatures who have suffered; we are creatures who feel fear in the night and who feel pain, who have had dreams and purposes sometimes met and sometimes thwarted; we are helpless and proud and we carry with us into old age much of the vanity of youth. We are simply human, no better and no worse than anyone else.

To be simply human in need of care and understanding is not just a misfortune. It is a kind of gift. It forces us to accept this basic fact, that we are just flawed humans encountering our physical limitations, encountering our physicalness in all its messy, confounding, stubborn physicality. This is all we are, finally, on the physical plane: this jumble of weak limbs struggling to support each other; this tangle of twitching fingers stitching an agonized weave, patching some jeans, stirring some tea, grating lemon zest for a pound cake, sewing on a button. This is what the body comes to. This is what we all come to.

In yet another sense your illness is a gift: You are being slowly carried down a river that for others is a terrifying torrent of rapids approaching a falls. You are being given time; millions of others are snatched away instantly on the highways and on battlefields and in sleep; they go without any preparation. You are being granted time to ponder your life and prepare.

We all are going, so how would you prefer to go? Would you prefer that suddenly in the night your body would seize up like an engine that has burned its oil and thrown a rod? Or would you prefer to have some time to see where this all is headed, even though it is painful and sad?

I know only a little about this kind of struggle but I know enough to prefer the warning signal of illness to the smack of a bus or a gunshot or cardiac arrest. (Given the universe’s ironic sense of humor, I’ll probably die under a speeding bus.) I’m just saying, having had cancer and having thought about death, I cherish the idea of knowing when death might be coming and having a chance to prepare. This last bout was just a warning; it’s gone and is not expected back. But it taught me a lot.

As to your friend Phyllis, it’s my observation that knowledgeable caregivers ask before they do things. They pay attention to the emotional needs and wishes of the person they are caring for. Your friend is not a professional caregiver. She may not know. She may really think that her take-charge way is the best way.

I think you need to risk showing her, with love, who you really are. Ask her for understanding. At the same time, loosen your grip on these preferences. As you open your heart to her, and as she tries to accommodate you, you may find your need for modesty and control slowly begins to release its grip on you, as well.