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I know you know I've got this great writing gig over at marijuana.com. What you might not know is that Saturday (two days ago) was Purple Day. I'm not so into these days when we mark whatever hell is closest to our doors, but I do feel you can never be too aware of the effects of epilepsy, so I wrote a little personal piece for the website.
I'm no good at raising money anymore and am too mouthy to be much of a lobbyist. I have a problem with authority, to tell you the truth. In fact, even this past Saturday night, I had a deep and involved conversation with a developmental pediatrician who was compassionate, enlightened and a bit of a mansplainer, all rolled into one. I have to tell you, though, that despite my sharing Sophie's success with cannabis, he didn't ask me a single question about it. In lieu of doing anything constructive about this or perhaps admitting that the fault lies with me (I must sound dumb or offensive or crazy or something), I've decided that this is a rule and not an exception. His eyes didn't exactly glaze over, but he made more effort to disagree with me about my assertion that it's unethical to prescribe five drugs for a child with a seizure disorder that's already failed nine. When I told him that I've probably met or know of thousands of children with refractory epilepsy and have yet to meet one whose seizures stopped with the fourteenth or fifteenth drug, he disagreed and claimed to know some. To be fair, he admitted that it was often "the honeymoon effect," and his eyes flickered when I told him that Sophie had never been on a honeymoon so I was pretty certain that the cannabis wasn't working because of this phenomenon but was actually working, like, for real! I won't even mention the glaze his eyes took over when I casually dropped the little bomb that Sophie's seizures began after her initial vaccinations and worsened when she was vaccinated again while being treated with steroids.
Sigh.
The kind doctor is doing beautiful work with the disadvantaged and foster children -- and I'm cognizant of the fact that perhaps the fault lies with me and my ability to be persuasive and diplomatic and sensitive. Oh, and to be careful with that edgy, angry thing I do. I admit that when he declared his alliances with Various and Important Associations and Pediatric Monoliths, my own eyes glazed over.
The rift is enormous, you see, and I've no interest in vindication.
In any case, I can tell a story, can't I? My ability to do so is probably the only remnant of my sanity left after these twenty-one years.
Here's the link. Show it some love and share it if you think others might benefit.
Purple Day
You feel like the crazy one when nobody will listen to your truth. You're not crazy.
ReplyDeleteI tried to leave a comment on Marijuana but disqus doesn't like me. The article is wonderful and sad, bittersweet I would say. I especially love Sophie's necklace. Take care.
ReplyDeleteDisqus doesn't like me either.
ReplyDeleteBut I like you. Another amazing piece of writing and yes, this is so obviously what you're supposed to be doing.
Why won't these doctors listen? I simply do not understand.
Heartbreaking and hopeful. Not angry at all. Love Sophie's necklace too. What do you think got into De Niro?
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It's SO frustrating (even for me) to hear that he didn't ask a single question about Sophie. Regardless of his preconceptions you'd think he'd be curious about her story. An incurious doctor is not a good thing, in my book.
ReplyDeleteI know I've said this before but can't help saying it again. Your daughter doesn't owe anyone by being a science experiment but I don't understand why they aren't knocking down your door to study why the pot is helping her!
ReplyDeleteIt has nothing to do with how you do or don't explain anything. It's on them that they aren't curious.
I maintain (and I hope I always do) that curiosity is what sets people apart. Those who are certain that they know better and are so involved in their own story that they fail to wonder what they don't know are not people with whom I am inclined to spend much time. It is hard, frightening, vulnerable work to stop our own narrative and be curious and I admit to sometimes preferring to stay in my own little bubble. However, being able to acknowledge that we all have a particular lens through which we see the world (as when you noted that you glazed over while he was talking about his credentials) is an important step. If only more people in authority were taught to do that, you might not have a problem with it. Love you. Keep on keepin' on.
ReplyDeleteThat was a moving Purple Day post. And your conversation with the developmental pediatrician - whom you describe as one of the relatively better guys - was absolutely infuriating. For the most part, I've been spared, that sort of arrogance from doctors, at least in recent years. (I have my fair share of horror stories but they're from the early days.)
ReplyDeleteLike so many truth tellers, you will be dismissed at best, scorned and ridiculed at worst. And, eventually, people will come to understand that you knew what you were talking about all along. So it goes. xo
ReplyDeleteI agree with Tara's comment above. Just read your excellent Tina Turk post and all the comments. Bravo!
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