Thank you so much for telling your story so honestly and beautifully. Thank you, too, for helping us to learn more about epilepsy and cannabis. We are so sorry that we haven't helped your daughter and millions like her. We are so sorry that we've actually done so much harm to her and have continued to turn a deaf ear to your appeals for partnership. We are sorry that we haven't disclosed our unethical relationship to big pharmaceutical companies and how this has utterly influenced our outlook and judgement, as well as our hospitals' malpractice lawyers and our peers. We are sorry that we've prescribed dozens of little studied drugs in mysterious combinations and then had the nerve to put down your own studies about cannabis, demeaning you as "just a mother" and "unreliable" and "prone to the placebo effect." We are sorry that the treatment for infantile spasms is exactly the same as the one you embarked on twenty years ago with your daughter and has the same results which are abysmal, yet we continue to resist, openly, an option that might be better. You are right. We've fucked up. Most of all, though, we are in awe and thankful that you and legions of other parents of these children that we haven't helped have not been defeated by our obduracy.
How hard are you laughing?
I've gone over and over this thing for a couple of days and really did some soul-searching, trying to unravel my own insecurities, hubris, faults, etc. I always come back to our story, though, and the twenty year tail I carry around with me.
There is no such thing as vindication, and if there's anything I've learned over the years, it's as difficult to shed those last vestiges of desire for it as there is to drum up the will to keep going.
Here are two Venn Diagrams that my friend Greg made for me to use in my presentation. I was hoping that someone would have asked me for a copy, but -- well -- you know how that went.
In case you're like me and can't confess to not quite understanding a Venn diagram, here's a verbal explanation:
- Sophie has been alive for 7,226 days (as of this past weekend)
- Of those 7,226 days alive, 4.1% or 271 of them have been seizure-free.
- Of those 7,226 days alive, 454 of them have been on CBD. 6,772 of them were on pharmaceuticals alone.
- Of those 7,226 days alive, 0% or 0 of them have been seizure-free while on pharmaceuticals
- All seizure free days have been while on CBD and none have been while on pharmaceuticals alone.