My beautiful broken brain

Image Credit: mybeautifulbrokenbrain.com

March 22, 2016

My Beautiful Broken Brain is an intensely personal story of a 34 year old woman, Lotje Sodderland, who documented through film her 1-year journey of recovery from hemorrhagic stroke, which resulted in Aphasia.

One night, Lotje goes out to watch fireworks in London, her hometown, and at the end of the evening she goes home and goes to bed. Midway through the night, she wakes up with an excruciating headache that is so strong that she thinks she is going to die. Living on her own, she lays in bed for a while waiting for it to happen but something nudges her to get up and seek help. She makes it to a local hotel but she can’t speak and so she can’t explain what’s wrong. She collapses in the hotel bathroom and her memories of the evening end there. The hotel staff finds her eventually and she is rushed to the hospital where her family finds her the next day.

An emergency brain surgery saves her life. The neurosurgeon explains that with a hemorrhage of this intensity and with the severity of brain damage that it causes, many patients don’t make it, even with surgical intervention. But Lotje survives. In a post-surgery self-filmed footage, she shares her excitement of not being dead. Her brother is also joyful: “She is alive! And she looks great!” Her friends and family are relieved.

Then reality hits. Lotje has Aphasia and we see her trying to re-learn how to use words. She is able to understand others and, for the most part, she can speak but she is often unable to find the right words, although they are often on the tip of her tongue. We see Lotje struggle with the first sessions of cognitive evaluation and speech therapy, the embarrassment from not being able to remember simple word, her nervous laughter, her apologies for “not making a lot of sense”, her courageous smile turning into uncontrollable tears of frustration and sadness. We see her brighten when she triumphantly comes up with the word ‘nephew’ pointing to a picture of her young niece. A few seconds later she realizes her mistake. Almost as an excuse, Lotje explains:

I was a pretty normal, busy, kind of a clever person. And now I’m starting from the beginning.

Her friends describe her as someone impassioned, who was busy multitasking, writing films, writing in general, always reading thick books, someone very articulate. Lotje describes herself as hard working, a traveller, someone who has lots of friends, someone who loves to read. Then she asks:

What if all this evidence is removed? What does that make me?

The documentary does a great job showing that stroke-related disability is often not only a loss of one function or another, it is a perturbation of one’s entire existence, of one’s self-image.

Lotje is a fighter and she has the good fortune to have access to therapy. 2 months after her stroke she enrolls in a 3-month long program in a neurological rehabilitation center for people with brain injuries where she undergoes psychological and linguistic treatment. The therapy isn’t easy, it seems to her that it will take forever to improve.

It is very difficult to be other people’s property. People taking over my plans, my life. Doctors telling me things that I don’t understand.

Lotje improves, she can now speak fairly fluently. But at the end of the program she still can’t read. Her doctor explains that the paths between her visual areas and her language areas are broken. We see Lotje typing a text but she can’t read what she has just typed.

This prompts her to enroll in an experimental therapy that uses Transcranial Magnetic Stimulation (TMS) – a non-invasive method to stimulate a small part of the brain through magnetically induced electric currents. The research study investigates whether this non-invasive brain stimulation can speed up language recovery after stroke. Lotje is asked to read words from a screen while the TMS is stimulating regions of her brain through her skull in the hope that the brain would be able to find new pathways between her visual and language areas. We see Lotje applying herself to the task with determination, over many hours, many days, and it seems that she is reading the words more effortlessly. But before the end of the therapy, Lotje experiences generalized seizure and is taken to the hospital.

This was always a possibility due to her stroke, it turns out, with or without the experimental therapy, although the TMS may have contributed. Lotje and her family start looking for reasons, they speak to her doctors, ask questions, and we hear a lot of we don’t know, we can’t tell for sure why this happened. 

The seizure is a huge setback that brings Lotje back to earlier stages of recovery. She is struggling more with finding words again. Now she needs to take medication and deal with the side effects. Her vision is also troubling her – she sees intense colors. She hears intense sounds. She turns to the camera and says:

Anything can happen, at any time, to any degree. So I better not have faith in anything.

Her facial grimace betrays how bleak that reality seems to her despite the attempt to express the thought with a smile. Lotje asks:

If the physical body – the brain – is damaged, does this extend the damage to one’s self?

A year has passed and Lotje is at a Cognitive Communication conference, speaking to an audience of therapists, sharing with them her experience. She acknowledges that therapists need to assess a person and define what the patient’s deficits are in order to conduct a proper therapy and figure out how to improve the person’s capabilities. Yet, she also shares her perspective as a patient during this process:

The experience of being defined by what you can no longer do or how you are limited becomes devastating.

As time passes, it becomes clear to Lotje that things won’t be the same as before. She realizes that she needs to come into terms with her new reality, focus on the essential and on the new things she has discovered. She doesn’t try to make it sound romantic. She admits that “it takes a very long time to get used to a new brain.”

This heartfelt documentary is an honest portrayal of the process of re-learning to live with a “broken brain”, of human fragility and vulnerability, of persisting in the difficult journey of recovery through series of setbacks and bad news, of dealing with uncertainty of whether things will ever get better or whether, instead, they will get worse, of realizing that there are  many questions that have no definitive answers or clear explanations. This is a touching personal story of learning to live with a new self, making a new life plan, and the enormous strength and optimism that it takes to achieve this feat.

 

My Beautiful Broken Brain aired on Netflix on March 18, 2016. 

 

Comments

Comments are not allowed