So many people sent me the recent — let’s call it crowd-sourcing — article detailing a young girl’s hideous epilepsy story and asking for the public’s help, that I’ve lost count. That we live in a period where literally everything is a reality show makes me ill. Crowd-sourcing medicine? Give me a break. This is my response to the parents via the New York Times and the f’d-up medical business community that pretends to Science:
Don’t cut out your child’s brain until you’ve tried cannabis medicine. “Fixing” your child is the hardest, most fruitless journey you will embark upon. The opposite of that is not acceptance. There is healing in the legion of people who know your suffering. Healing and curing are entirely different things.
aren't facebook groups for cannabis treatment a kind of crowd-sourcing? folks even call on the "hive mind" with their queries. i actually think it's a good way to let people know that doctors don't know much when it comes to neurological disorders, and to let this mother know how far from alone she is in her journey.
ReplyDeleteI wish you could talk to that mother directly.
ReplyDeleteWith you. I’ve used crowd-sourcing to fund Rob’s sequencing, but there’s ethical and unethical crowd-sourcing when it comes to medicine. I deplore that NYT series as well
ReplyDeleteI hope the family reads your words.
ReplyDeleteI thought of you and Sophie when I saw this. I thought it a strange way to make a major decision about the health of their child and whether or not to have her undergo brain surgery - irreversible brain surgery.
ReplyDeleteI had to reread your comment to the parents a few times to fully grasp although the most important bit about cannabia was clear. The parents in their fraught state may not have the ability to understand the rest of the comment. And yes medical business but perhaps something in the comments will help them. The cannabis suggestion for example.
ReplyDeleteJust went to a conference for nurses and midwives and there was a session on medical marijuana and damn those drug companies are gettin' into it aren't they? I thought of you and Soph.
ReplyDeleteAll love, dear Elizabeth
I just read the headline and knew this would twist you up and as R said I wished you could speak to that family. Sending love, Rebecca
ReplyDeleteIn desperation and at various levels of experiencing the pain of incurable illness, especially of a Child, people often feel so alone in their struggle that they often solicit the Hive Mind or collective of groups of the genre of illness they are battling. I cannot judge nor fault anyone for what their Journey is and where it takes them, tho' my Hope is that those early in the Journey seek the Wisdom of those who've been on the Path a very long time and have more Sage advice that isn't just 'profitable' to them personally... since with the Medical community and anyone prospering off of the suffering of any illness or disability can be Suspect at best.
ReplyDeleteThat's probably EXACTLY the kind of response those parents need! Send it to them!
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