A palliative care patient talks about the value of hope – and a special memorial project for her daughter. She recorded her life story as an audio book.
“Hi, I’m a Christian, 33 years old, a mom and I feel healthy most of the time. However, the medicine says otherwise,” begins a posting on Christin’s Instagram channel “our.best.journey”, with more than 40 thousand followers. Christin is a palliative care patient. One that “wants to educate, encourage, give hope.” She was diagnosed with aggressive breast cancer in the 27th week of pregnancy and has had the status of “incurable” since her daughter was ten months old. Today the little one is three and a half years old. “I know that it is possible to find your way back to life despite such a difficult fate,” Christin writes at the end of the post.
In the interview she talks about a very special project that gave her some lightness back – even though it is so incredibly emotional. She recorded her life story as an audio book.
BRIGITTE.de: Christin, when most people hear the word “palliative patient” they think of imminent death. Can you explain and describe what it means to have a life-limiting diagnosis?
Christin: Unfortunately, all chemotherapy treatments failed for me; I was considered to have had no treatment, at least according to my clinic at the time. I really felt so bad in 2021 that I thought I wouldn’t live to see 2022. When the palliative care team stood in front of me, I didn’t want to be treated by them at all. But palliative care is a broad spectrum. It doesn’t automatically mean you’ll die in the next few weeks or months. It is a very holistic treatment that combines pain medicine and naturopathic applications. For me it was the best medical team I have ever had. Personally, it is important to me to show that you can be happy even during a palliative period. I have endless hope, I’m alive. Nevertheless, I have to say, I am an exception.
As the mother of a young daughter, how do you deal with your diagnosis?
My daughter doesn’t know anything about my illness. She knows that I go to the doctor every two weeks and that Dad will pick her up. And when she comes home, she can wake me up because I’m usually in bed. In the evening we order something to eat, that’s our ritual. But unless I have to go through chemotherapy again, we won’t talk to her about it at home. I am currently receiving immunotherapy and am doing well with it.
Of course I have some limitations and side effects, but otherwise I’m a completely normal mom, a completely normal wife. It depends on the day how much space the topic gets. Often there is no space. But when my next examination is coming up, it will take up a lot of space.
You took part in the “Family Audio Book” project and created your audio biography. Terminally ill mothers and fathers who can no longer accompany their children into adulthood take part free of charge. You can get in touch and get an experienced audio biographerthe page. Why did you decide to do this?
This project is worth so much, it needs to get a lot more attention. I found out about it through Instagram. But at first it was irrelevant to me. I didn’t want to do that because it requires you to agree with your head that you’re going to record something for when you die. Then a fellow patient told me that she had an appointment at the end of the month to record a family audio book. She died shortly beforehand. That was the turning point for me. I said to myself: I need an audio book like this for my family, immediately!
How did that go?
I got my appointment within two weeks. We conducted the conversations via Skype, but they usually take place in persona. I answered all sorts of questions: What did you like to do as a child, where did you like to play, what did you like to eat? Those were impulses – it’s up to you what you want to tell. At first I was worried about someone knowing so many things about me that no one else knew. But I quickly fell in love with my audio biographer. She always encouraged me to say, “It’s just part of your life.” That was a nice experience.
Did this sad occasion to talk about your life also have a fun side?
That is hard to say. It wasn’t fun because it’s an experience you don’t want to have. At the same time it was beautiful and funny. I’m actually a very funny person and I laugh a lot. That’s why outtakes became part of the audiobook. Moments where I slip up and have to start over. They’re really funny. In another chapter I have put together my favorite music – including the music from my teenage years, when I listened to “Tokio Hotel” at the age of 15.
How extensive has your audio book become?
We had planned three days, but I was finished after just two days. I sat until 4 p.m. and talked almost non-stop for eight hours. I had a really sore throat and headache afterwards, but I just couldn’t stop. I had put up a family photo that I often had to put away because the tears came. That didn’t happen. I also addressed personal words to my husband, my in-laws, my parents and of course my daughter. I think my audio book ended up being about six hours long.
What makes this form of memory so unique for you?
I knew I wanted to leave something personal for my husband and daughter to accompany them. So I had started writing letters to my daughter, but they always said the same thing: “I love you with all my heart, I’m so sorry for how things turned out.” This repeated itself. When my audio biographer asked me what I had done so far to make something personal, I told her that I had written a letter to my daughter for her wedding. That I wish her to be happy with her husband. She then asked, “What if your daughter never gets married? Or if she marries a woman?”
How are you feeling now that you have your own family audiobook at home?
The first thing people forget is the voice. If a child loses a parent at a young age, by the time they are 30 they no longer know what their mother sounded like. This is also why the audio book is my most valuable possession and one that I will pass on. It’s a calming feeling to have. Since then I just feel free.
Thank you for the interview.