The lived experience, Episode 9 – This week: Hester, Part 2

Last week we heard about the beginning of Hester’s life. Today she talks about her illness.

She got married, became pregnant and with that began a period of many sad, difficult experiences. The first pregnancy ended in miscarriage. The second pregnancy brought a daughter, who was a single-born twin. Another pregnancy followed, which also ended in miscarriage. Then a second daughter was born, her parents divorced, and a third daughter was born, also half of twins. “This youngest daughter still suffers a lot from that. She feels like she is still looking for her other half. The amazing thing was that during that pregnancy the eldest said that I had two babies in my belly and she also suffered from the loss of that other child. I was bleeding, but also remained pregnant, so the situation was clear for us. My childbearing years were intense because of this and have worn me out. Moreover, I already suffered from TMS (Tension Mysositis/Myoneural Syndrome); I was really always in pain and, like my mother, was often close to exhaustion. Subsequently, my husband also became seriously ill and, in addition to non-regular medical treatments, it took time before he was able to function properly again. When our youngest daughter turned 3, both my parents passed away in one year. All in all, we have had some really tough years. At a certain point it also turned out that, in addition to my pain complaints, I had a heavy toxic burden. I think that as a child I was already emotionally exhausted and that my survival instinct and the spiritual knowledge I already had got me through my crisis.”

With this term ‘crisis’ she refers to her illness of five years ago. After the first miscarriage, friends gave her a book about spirituality that gave her a feeling of ‘coming home’ and that encouraged her to go deeper into that area. “From then on, like some kind of hungry soul, I read, read, read, even though after high school I thought I would never read again! For me, the essence of my soul lies in spirituality and creativity, and that reading has helped me to find something to hold on to. For example, I have come to see that I am not the type to ‘market’ myself. Work where I have to profile myself commercially… that is not for me. For example, I like to write, but publishing my children’s books… I would have to find someone for that. Also poetry, mandala drawings, postcards… I can’t make a business out of it, but now that I’m better, unlike during my illness, I finally feel the space to think about how I could handle that.

Our family grew up and I certainly experienced joy and gratitude in it. Still, in retrospect, I think I was in survival mode a lot. When the kids had moved out, life felt like a dark hole. Existential life questions arose about where I come from, who I am and why I am here. I thought: ‘I just have to do something in society, otherwise I am a ‘failure’ and then I picked up something that again did not suit me. We moved many times and everywhere I tried to make a fresh start. With volunteering and various artistic activities I certainly had happy years, especially from 2011 to 2018. After that I followed a therapy that completely destroyed me. Moving, going through menopause, physical complaints, blockages in the emotional part of my brain… I wanted to take a kind of sabbatical, but the chosen therapy turned everything upside down and said that afterwards I could let all of my pain go and then I would be ‘done’ with it. However, that form of therapy does not examine in advance the state of your emotional stability and capacity. I panicked and my whole system said ‘no’; I was too full with everything.

Although I now see that the collapse was necessary, because as a child I had really locked away everything, it was extremely intense. I had never learned to really feel and then when I fell ill, feeling was all that remained. I could not ignore it anymore: I had to feel and feel everything, in the two and a half years that I mainly lay in bed. At the same time, my brain actually did not have the capacity to process all stimuli and emotions. I felt like I was going crazy and it actually seemed that way. This led to a procession of health care providers prescribing me a range of medications and, in particular, psychotropic drugs. It is my firm belief that they have largely only made me sicker instead of better. It made me even worse than I already was. They put a veil between my physical body and my soul; this is how it felt: as if due to the negative power of the medication I could no longer tap into my own strength and the light within me, my self-healing capacity.

Years later I started to wonder what it was that I had really needed and couldn’t find or get from any therapy or healthcare provider. I think what I would have needed is to lie on a treatment table with someone in a very safe space and be touched in a very gentle way, which would have allowed me to learn to feel again. I needed a therapist who, in tiny steps, could take me closer to the pain of the past, to the moments when I had felt unheard and to the pain and sadness that had become stored in my body as a result. An example of this is that my tonsils had to be removed. At the time, parents were not allowed to stay with their children and very young children were then utterly alone in such a hospital. That frightened me so much that I left my body. I fell unconscious and saw the whole operation, the doctor with the lamp on his head, the surgical gown, the high chair, the balloon… I saw everything, but I hid that experience deep within me. The fear of abandonment, which I already had, was further fuelled by this and during my illness I noticed that my body wanted to rid my body of all those events stored in my cell memory.

More things have happened that all fit within that framework. Some of them also have to do with that previously mentioned guilt-shame-infamy program that was so deeply embedded in my mother. If something was supposedly my or my mother’s fault, it created shame and then I or she was an embarrassment to the social environment. That is a very toxic dynamic to grow up in. The conviction arose that if only I didn’t do this or that or the other… then my mother wouldn’t be so unhappy. Originating in church dogmatics, there was also a lot of fear of going to hell. Because of my illness I came to see that all that burden was not mine, but my mother’s and that I don’t have to carry it.

It was no easy feat, however, to work through all of that. I was ill for about three years and there were times when I cried for ten hours a day; sometimes there was howling and screaming, of desperation and anger and compulsions, and the effects of the medication. I tried to get rid of everything and talk it off, so I sometimes talked all day and regularly went from one panic attack to another. There was actually no way to live with me at that time, so it was also extremely intense for my husband. In the end it was all healing, for me, for him and for our relationship, but it was a tough journey we had to go through.”

She tells how she slept only three or four hours a night for four years, how her nervous system was so overworked that she was both hyperactive and apathetic, depressed and manic as well as psychotic, and how she has seen as many as 50 therapists and how none of them could help her any further, especially since there were times when she could only talk for five minutes before she was totally exhausted again. “I also received a lot of criticism, that I was selfish and had to think about my family, that I had to adopt a different mindset, that I had to be a bit more positive, that I had to continue with certain trajectories longer, although everything inside me screamed that I was unsafe. The anger of others, however unjustified, then fed my guilt again. I found all of that so complicated because I felt that the way I was… that that wasn’t my true self. I really wanted to get better, but I couldn’t and it made me desperate. I was afraid I would not survive it all. In the end, the solution only came when I stopped looking for it.”

Next week we will read the conclusion of the conversation with Hester.

Posted in Interviews by experience experts.