Last year I almost stopped writing outside of friends-only circles in all of the online social spaces I inhabit. What I needed to say was often too raw, vulnerable, or controversial to be shared without a shared context. However, friends-only writing starts getting too tight, so it is time to share a bit more context for what you might see here, either coming up as I write it or backposted from the last few months.
End of October my partner Robert was diagnosed with a brain tumor. Unexpected, almost out of the blue, but putting lots of weak strange signals from earlier months in a retrospectively coherent picture. He had two operations, one planned and another one immediately after to deal with the complications, two days in the IC, and a few weeks of recovery, which went surprisingly well.
In the meantime, tumor cells were analysed and we’ve got the difficult news: the tumor is malignant and existing treatments are limited. The forecasts are uncertain – while there are protocols, statistics, and averages, a lot depends on how his body reacts to what is there to do. Robert has finished the first round of treatment, chemo-radiation, and getting ready for more. He is also getting support in a local rehabilitation center to relearn, adjust and figure out what shapes life and work can take from where he is.
As you can probably imagine, a health emergency of this scale turns the life of the whole family upside down. Having built many facets of our life as networked autonomy is a blessing and a curse. On one side we have a built-in resilience and capacity to adapt, as well as the networks to ask and receive help. On another, it still has to be managed by the core of two adults, one of whom has to deal with a life-threatening disease.
This is where I am at the moment.
The morning after we heard about the first signs of what was there to unfold, Robert told me that he found lots of tumor humor online. I like this combination of words as a tag – it brings my attention to all of the other layers of the experience.
So, before everyday life fully takes its toll with happenings and to-do lists I want to mark this as a milestone. With gratitude to
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