Yet almost 30 years later, Lopes now lives in a small Paris apartment near the Seine.

That’s not to say daily living is always easy, Lopes added, but overall, he’s happier than he ever thought was possible in his situation.

While research into LIS patients’ quality of life is limited, the data that has been gathered paints a picture that is often at odds with popular presumptions.

To be sure, well-being evaluations conducted to date do suggest that up to a third of LIS patients report being severely unhappy.

And yet, the majority of LIS patients, the data suggest, are much more like Lopes: They report being relatively happy and that they want very much to live.

Indeed, in surveys of well-being, most people with LIS score as high as those without it, suggesting that many people underestimate locked-in patients’ quality of life while overestimating their rates of depression.

In these places, families and clinicians are often involved in fraught decisions about whether to actively end a person’s life or pursue life-extending interventions such as mechanical ventilation.

Advocates for the right to die, a movement that dates back to the 1970s, have historically raised concerns about the potentially dehumanizing nature of these interventions, which can lengthen a person’s life without improving its quality.

They specifically argue that LIS patients should be able to decide whether to end their lives or stop life-extending treatment.