Cary’s classic column from TUESDAY, JUN 19, 2007
I am a secular person, I do not like the color pink, and I need to manage my disease my own way.
I am a 47-year-old happily married woman with four children who was recently diagnosed with advanced breast cancer. It’s been a shocking, overwhelming experience. I never thought I was at risk for breast cancer. I was a “granola” type, breast-feeding my kids until they were toddlers and insisting on brown rice and whole wheat bread, exercising, eating lots of fruits and vegetables, etc. I know you can’t tell me where this came from or why I have it, but maybe you can help me with a few of the “social” problems that have developed as a result.
One problem is kind of minor, and one more major. The small problem is that I live in a Midwestern, conservative city. On the one hand, lots of people have been phenomenal in stepping up to help us, bringing meals and offering rides to my kids. But there are some very conservative, very religious people approaching me. I have some people wanting to pray with me, and sending me cards with the message that “God is great” and if you put things in his hands everything will be OK.
There is even the message that God gave me this for a reason. This makes me sick. I believe in science, and biology, and random acts of illness. There was no plan to give me cancer. It is not comforting to me when people suggest otherwise. I believe God may be present in the love and kindness I see around me in my family, and in many of my friends and even strangers who show they care. But I do not believe God is controlling my cells. How do I deal with these people?
The more major problem is dealing with my in-law family. I married into a Greek family 20 years ago. It was a rocky beginning, because they wanted me to convert, marry in the church and baptize all of our kids in the church. And they used all kinds of emotional manipulation to achieve what they wanted. Well, they didn’t get what they wanted, and my husband and I moved away from the family and established our independence. We’ve been happy, and had established an equilibrium with the family. We have a visit every year or two, and I am polite and gracious, and they enjoy the fact that we are raising beautiful, well-adjusted grandchildren. (The rest of the family is pretty screwed up.)
Well, now this cancer thing has brought everything to a head. My in-laws have come to “help.” They are not very helpful, and they have a very “doom and gloom” attitude. And my MIL can’t help talking about her own health tests, and aches and pains, none of which are serious. I thought they would help by playing with my kids, but they are bringing them down, too. And aunts, uncles, cousins are calling every day, telling me what to do, questioning my doctors, telling me how to feel. I can’t stand it, and I don’t know what to do.
I hate to sever some ties here for my kids’ sake, but I really don’t want these people helping me. I don’t even want to talk to them. Every time I have a conversation with them, I feel bad. I have been able to stay fairly focused and positive, but these relatives are bringing me down.
My husband is supportive of me, and realizes he made a mistake in having them come. But bless him, he just wanted to reach out to his own family during a time of crisis and get help. And he is coming to the sobering realization that they are no help, and even somewhat harmful. I feel bad for him, but I also think it’s OK for me to assert what it is I need. I need to be around people who make me feel good. My husband had tried talking to his parents about the way the family acts so aggressively, and how things that are said aren’t helpful to me, but they just don’t get it. “Oh, but we love you. We are just showing concern …”
Any words of wisdom would be appreciated. I always enjoy reading your thoughts.
I am glad that you are facing this with clear eyes.
Being a thinking, secular person, you may find it best to treat this phenomenon as a social and family-systems problem. In the way that medical professionals speak of certain disorders being “secondary to” certain other disorders, we might say that this social and family phenomenon is “secondary to” your cancer itself.
In fact, we might say that, secondary to your initial diagnosis, your Greek in-law count is abnormally high — which is to be expected where Greek in-laws are present but relatively inactive prior to diagnosis. We might also note that tests confirm the presence of opportunistic religiosity, which, while not uncommon in such cases, is of concern, as it can distort observed phenomena and thus result in faulty diagnoses.
It is suggested that the way to handle these secondary effects is to manage them in accordance with generally accepted hospital protocols.
So how is one to actually do that? How can one manage it?
Well, I think one starts with managing access. One limits who can visit and for how long, just as a hospital would. One prescribes rest and quiet. One prescribes limited activity.
In doing so, in setting limits and policing activities, one may look to some authority outside oneself to justify this. And I do not mean God — at least not God as you and I understand God. I mean The Doctor. You invoke the authority of “The Doctor.” The doctor says you can only visit for a few minutes, because she must rest. The doctor says this and the doctor says that.
People who revere authority will often turn to God, but if there is no God present, the doctor might do just fine.
In invoking such an authority, you allow the relatives to participate in a drama that they understand and believe in. Now, your mother-in-law, being an expert in medicine, may quibble with the doctor’s opinions, but I doubt that she will disobey his “orders.”
Other ways to manage access might include having your husband say things such as “She is praying alone.” Or perhaps “She is meditating alone” would suffice. In other words, give it to them in words they understand. “She is reading her Bible” might be just a bit too much to swallow, but you get the idea. Let them participate in the drama as they conceive it. And manage the situation in much the same way that a hospital manages things, by controlling access, the number of visitors at one time, and the duration and frequency of visits.
If you gain some leverage in the tangible aspects, you will feel a little better about the craziness.
Now, being a secular person and needing to manage this situation as a social and family-systems phenomenon, where would you find guidance and expertise? You need someone trained to observe and decode the response of a group to illness in its ranks. I would think perhaps a marriage and family counselor would know something about this, as might a person with a master’s in public health. Even a sociologist — one with a heart — might be of help, or an economist with a gift for visualization.
You need someone who can help you see this phenomenon for what it is, a hysterical swarm of pinkness flowing toward the victim, like blood flowing to the affected area.