intro’d to Jennifer via her tedsummit 2016
it doesn’t matter what you once were.. you can’t do it anymore..
15-30 mn around world have disease. 1 mn in us
dr’s don’t treat us and science doesn’t study us.. how could a disease this common/tragic have been forgotten by medicine
9 min – problem with hysteria.. can never be proven.. absence of evidence.. and in case of me – psych explanations have held back biological research.. ie: in us.. $2500 for aids $250 for ms $5 for me
10 min – how much trouble we were having being taken seriously..
11 min – everything to do with who’s stories we believe..
15 min – how many lives could we have saved decades ago if we had asked the right questions.. how many lives could we save today if we decide to make a real start
16 min – even once the true cause of my disease is discovered..if we don’t change our institutions and our culture.. we will do this again .. to another disease…. science and medicine are profoundly human endeavors.. dr’s.. sicentists and policy makers are not immune to the same biases that affect all of us.. we need to think in more nuanced ways about women’s health..
our immune systems are just as much a battle ground for equality as the rest of our bodies..
we need to listen to patients’ stories .. and we need to be willing to say..
i don’t know
i don’t know is a beautiful thing.. i don’t know is where discovery starts.. and if we can do that.. if we can approach the great vastness of all that we do not know .. and then .. rather than fear and certainty..maybe we can read it with a sense of wonder..
unrest – doc
1:15 – sickness/death doesn’t terrify me.. what terrifies me is that you can disappear because someone’s telling the wrong story about you
1:16 – i remember thinking that there’s no one coming to look for me because no one even knows that i went missing
1:18 – the only way anything is ever going to change is if people can see us
fractal ing on tech as it could be..
all the voices
1:28 – you have to be able to hold 2 things in your head: this illness destroyed my life; but what it showed me i could never give back
the forbidden cures