Showing posts with label Sonjay Gupta. Show all posts
Showing posts with label Sonjay Gupta. Show all posts
Thursday, April 23, 2015
When the Moment, Much Less the Day is Everything
I watched Sonjay Gupta's third segment of Weed the other night on CNN and was struck in particular by what the wife of a soldier being treated for PTSD said about the possible long-term risks of using medical marijuana. I'm paraphrasing here, but I remember her saying she had her husband back. She said that he had his life back. She mentioned that 22 soldiers commit suicide each day in this country. She stated that even if they were to find something negative about the use in five or ten years, they would have had life NOW.
This living in the present moment thing is part of our popular culture, expressed in mindfulness meditation and in most conventional religions. We are urged to seize the moment, take each day as it comes, one day at a time and so forth. For those of us with children with special needs, particularly older ones who are and will remain utterly dependent upon us for the rest of their or our lives, this is something piercing and gets to the root of just how we cope. It's also an imperative when your child is at risk of sudden death or even an inevitable early death. Sophie, as you know, had been seizing hundreds of times a day for most of her nineteen years when we began using cannabis oil. She is nonverbal, needs assistance walking, is fed like a baby, wears diapers, has either her father or me sleep with her every night and has to have a padded bedroom so she doesn't hurt herself. When the seizures slowed down and then stopped for the most part, our family's life was so radically changed that we really didn't talk about it for a very long time. We still don't, really. I've thought about "long term effects" of using cannabis oil, and these thoughts are really no different than the ones I've had about the 22 pharmaceuticals she's been on as well. My fallback coping skill is a grim and dogged sense of humor, and there have been moments -- and minutes and hours and days and weeks and now one and a half years -- when I've wondered if Sophie was going to grow a Bob Marley-esque tumor in her brain. Please humor me and don't gasp too loudly. Like the wife of the soldier with PTSD, though, I believe that these largely seizure-free days and weeks and months and maybe even years, when Sophie is alert and sleeping well, when she doesn't do a face plant into her dinner every night or smash her head into the floor or the dresser in her room, are worth it.
That's what living in the moment is for someone like me.
My Italian grandmother, whom I've written of here quite often, was a deeply religious woman and also deeply suspicious. I don't know the expression but think there is one for someone who doesn't like to speak of anything positive because of the chance to jinx it. We're fiddling around with Sophie's cannabis oil, trying something new, and this morning for the first time in a very long time, she didn't have a seizure when she woke up. Rather than perpetuate superstition, I'm going to seize this moment and this day and exult in it.
Monday, March 10, 2014
Dispatch from the School of Revolution: CBD Edification
This won't be a post about Oliver and our efforts homeschooling. Things are going very, very well on that end, and I've nothing earth-shattering to report other than Oliver likes school!
I did read the following information, though, about a presentation given by Dr. Bonnie Goldstein who is following Sophie as we journey down the medical marijuana path. I do not know the person who wrote this out, but from what I can tell in an initial read, it does a great job summarizing some of the science behind cannabis. Dr. Goldstein is wonderful -- the kind of doctor who you can call or text at any time of day or night with questions -- the kind that you DON'T abuse with said questions and answers because you trust that she will get back to you immediately (ahem -- O Neurologists I Have Known).
Here's the link to read the summary of her talk/presentation that she makes around the country.
Email me if you have any other questions.
As we speak, Sophie has been having stellar weeks with little to no seizure activity, a revolution indeed.
Oh, and you might want to watch Sonjay Gupta's Weed, Part 2 which is airing on CNN tomorrow night (March 11th).
Monday, August 12, 2013
Marijuana Update, Number 7,567,890 in a series: The Woman Who Knew Too Much
Even though it's Monday, my favorite day of the week, I'm dragging. Even though I've already consulted with the guy who's going to paint our garage apartment, I'm dragging. Even though, I've made some requisite phone calls and taken care of some bills, I'm dragging. Even though I've done a bit of work for My Job, I'm dragging. Even though it's still summer, and I have three children about to begin three different schools, and I'm figuring out who needs what and who needs it when, I'm dragging. I just can't shake the dragging.
Have you ever seen the Hitchcock movie The Man Who Knew Too Much? It's one of my favorites -- probably because it's perfectly weird and creepy, particularly given the peaches and cream casting of Jimmy Stewart and Doris Day. I was always a good girl when I was younger, and even now struggle to be the good girl. If not always do what's right, then at the very least think right. Whenever I go to karaoke parties (ok, I've been to three of them), I always choose to sing that song because it's so perfectly ridiculous. I'm drawn to the perfect pairing of the creepy and the zen.
Listen to the above clip while you read the rest of this post.
Did you see the CNN special of Dr. Sonjay Gupta's last night? It was called Weed and featured the little girl Charlotte whose severe epilepsy has dramatically improved since she started using medical marijuana. I sat sort of frozen throughout the special and only teared up once or twice. My tears were, strangely, not the sorrowful kind but the angry kind. The update for Sophie is that I've been unsuccessful locating the high ratio CBD stuff in California. I'm hooked into a group of people, though, who are on a waiting list to get it when it's available. Let's hope that's soon. Last night's special stated that studies in Israel, done decades ago, showed a strong correlation between high ratio CBD and reduction in epilepsy. The forty some odd children who are taking Charlotte's Web now have ALL shown dramatic reduction in their refractory seizures.
Frankly, the whole thing gave me agita at the least and existential dread at most.
Don't get me started on why we are only learning about this in 2013. When I imagine what Sophie's life might have been like if she'd had the opportunity to try it back in the 1990s, I feel sick to my stomach.
Que sera sera.
Labels:
CNN,
epilepsy,
Hitchcock,
karaoke,
medical marijuana,
movies,
seizures,
Sonjay Gupta,
Sophie,
Weed
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