The lived experience, Episode 4 – This week: Mirjam, Part 1

It’s sunny when I arrive for our conversation on a late summer Monday afternoon. Just as I want to ring the bell, her husband comes walking towards me from the garden. I ask him how things are going and say that I am very shocked by the news. When Mirjam and I tried to set a date shortly before, I asked if it would fit, despite the imminent moval to elsewhere. She said the moval was not so much a bottleneck. What had coloured everything differently in recent days was the message that the biopsy result was not good: the lump she had discovered under her arm turned out to contain cancer cells, despite the lighthearted reaction of the radiologist. Considering she thought she had overcome the cancer twelve years ago, this was a huge blow to her and her husband, as well as to the children and their families. We discussed whether an interview was a good idea. I kept the option open that perhaps it was even more important now that her story was recorded and heard. Mirjam wanted to think about it for a bit and I said that whatever decision was okay and that it was entirely up to her to decide if, and if so when and where we would meet. It was not long before she replied: “Yes, perhaps my story does need to be heard. It may also give recognition to talk about it. My mother passed away this spring and after everything that happened between her and me, I had so hoped to be able to live a more relaxed life for a while. We are all very sad.”

Her husband looks at me and says, “Yes, it’s intense. It goes up and down. Sometimes you have a bit of courage and at other times you really cannot believe it and you get that helpless feeling of not knowing what to expect.” While we chat for a bit, she opens the front door and falls into our conversation. We look at each other and eyes fill with tears. The fear and uncertainty cast a great shadow over what, after her mother’s death and the moval, would have been a fresh start, a phase in which she was freed from her mother’s judgmental gaze.

I step inside, into the hall; I untie my shoes, take them off and then we hug. I hold her in my embrace for a long time and feel the restlessness in her body that is so understandable.
We walk into the living room and while Mirjam makes tea, I look around. I see that the bookcase has already been partly dismantled: empty shelves, packed books. There is a table and chair by the window that I have not seen before. When I inquire, it turns out that they do indeed come from her deceased mother’s inheritance. On the table is a bunch of sunflowers with yellow gerberas and there are flowers elsewhere, too. On the plateau next to the fireplace are a dozen handwritten cards from people who want to support her. Mirjam serves the tea and starts off with one of the things that have happened in the past few days in contact with healthcare providers.

Various events painfully remind her of what happened twelve years ago: a general practitioner who thinks it is not too bad and initially hesitates with a referral, nurses who provide information that is not relevant because of previous surgeries, radiology employees who look ignorant when she comes for an examination, a radiologist who says she cannot find anything at all: “Is that not reassuring?” “No,” she had replied, “that is not reassuring at all, because you said that twelve years ago, and it was completely wrong then.” He had been a bit annoyed and had responded: “Well, if it reassures you, I can take a biopsy, but these are not very nice interventions, so you can also decide to skip it.” The air of trivialisation in the tone of voice had struck her, but she had insisted. When she came for the results a few days later and saw two people sitting behind the desk, she knew enough, with all her nursing knowledge: they only sit together when they have to have a bad news conversation. It was, indeed, and now she is awaiting follow-up examinations. Later in the conversation we address the question whether it is the experiences in the now that make her so angry, disappointed and sad, or whether those experiences touch on all the pain of the past, causing them to tear open the old wounds time and again.

We sip our tea, surrounded by the smell of freshly baked butter cake. Mirjam tells how heartbreaking it was to have to tell the bad news to the children. Unlike in her parental family, their own family culture is not one in which there is no time and attention for such sad things, but one of openness and sharing. She therefore looks back with painful feelings at the passing away of her mother and how as siblings they sat at a distance from each other around the bed, a physical representation of the lack of contact that she had experienced all her life. Almost apologetically towards her mother Mirjam says that of course there were also happy experiences, but it is the adverse ones that have left distressing, limiting scars. An example is the last Mother’s Day, on which she had not visited her mother due to circumstances. The reaction of her very old mother: “I am very disappointed; it is typically you again who won’t come… Will your own children come to you this Sunday? No? Oh, so they do not consider you important enough to come? Well, then you know what awaits you and this is only the beginning; it will all get much worse. I always said: you do not sin cheaply by not visiting me, because what you do to me, you will get back tenfold.”

We are silent together; I notice the goosebumps on my skin and I look at Mirjam as she continues: “I have never had such a bad Mother’s Day; it really felt like my mom just put a curse on me. I was absolutely devastated. You don’t want to let it in and hit you, but it does. And this was the last real contact I had with her. She passed away shortly after that and because I felt so broken, I had not called her for a while. This conversation was such a blow to me that I did not tell the children until after her death…” I ask what her reasoning was to not share it with the children right away. She falls silent and searches for words. “Perhaps fear… or shame? Suppose she is right after all…?”

Mirjam’s voice trembles; she tells what she had tried in the past and in fact is still looking for an answer to the question of what she could have done now to prevent this kind of reaction from her mother. When I ask if she has any idea how this behaviour might be explained, she says: “I think that my mother herself had a big inferiority complex, that she was actually a psychiatric patient, although she wouldn’t admit it herself. Her whole life has been devoted to cleaning the house. Everything had to give way to that and it was her way of being the best at something. Our own birthdays, classmates’ parties, weekend outings… there could be no question of it. Even the wallet had to be cleaned into the corners with a screwdriver, spice jars dipped, lamp sockets swept with a brush… I still have scars from the hydrochloric acid used to polish the stable floors. And if it went too slow or not good enough, she could get hysterical.”

Mirjam continues: “She called her own mother every day, but we did not do that with her and she found that very disappointing. When she wanted something from us that we did not comply with, she mentioned people who actually willingly did this for their parents. If we visited a friend, she would say: ‘Oh, so that is something you do have time for?’ She continuously tried to feed into our feelings of guilt. For years, such statements were mainly aimed at me, but in recent years others in our family have also had to deal with them. This opened their eyes to what was going on for decades and where I was not taken seriously. It has now hit them hard, too.” She tells how she actually has always known the relationship with her mother as one with many reproaches: “My mother thought it was very annoying that I was born in the spring. My birthday was only celebrated when it fell on a Sunday, because on other days the big spring clean-up had to be done, then the cows had to go back to the pasture and the stable had to be cleaned. Having your birthday in the spring was thus very unwelcome… I was very unwelcome… As we cleared her house, a written note with words to that extent was found… in her bible.” Again we are silent together.

Next week we will continue Mirjam’s story.


Posted in Interviews ervaringsdeskundigen.