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| from Spike Lee's great movie Do the Right Thing |
My initial thoughts on the CNN/Sonjay Gupta special on medical marijuana because I can type faster than I can talk:
1. No one spoke about the dart board game that neurologists currently play with epilepsy drugs. I've had doctors tell me that prescribing epilepsy medication is "just as much an art as a science."
2. I think any shred of hope Governor Chris Christie had to be President of these United States is officially dashed. I've always loathed the guy, but I have to say I felt almost sorry for him given how CNN chose to edit his parts in this story. Yikes.
3. Many emotions going through my head -- the obvious whys and what ifs for our Sophie, anger that political bullshit has stymied this perhaps revolutionary treatment for our children, cynicism that Big Pharma is chomping at the bit, dismay that people weren't really educated on this special about the often devastating side effects of current epilepsy treatment, including surgeries like hemispherectomies. Seriously, people -- how many people do you think are walking around with one half of their brains that knew what the long-term effects of this might be?
4. Grateful that after working our asses off educating ourselves about medical marijuana and finally getting it (thank you Realm of Caring, Ray Mirzabegian, Jason David and the Stanley brothers, Sophie is doing PHENOMENALLY WELL. She was having up to five tonic-clonic seizures a day and hundreds of myoclonics and partial complex episodes as well as atonic drops. She is now going literally WEEKS WITHOUT A SINGLE SEIZURE, and when she does have one, they are much less severe and she recovers quickly. We have been able to begin weaning her from one of the most addictive anti-epilepsy medications in the arsenal, and it hasn't been nearly as difficult as it has been in the past. (Sophie has had trials of nineteen drugs in her nineteen years).
5. Our family is in a sort of state of shock about all of this, I think. We kind of don't know what to do with ourselves. When I watched the special, I teared up a bit for Vivian and her family, but my heart was broken for my family, for my boys and for Sophie, who have endured this shit for so many years, as well as so many other families.
6. What the hey, Obama: DO THE RIGHT THING.
Reading this, I want to weep.
ReplyDeleteHell, I am weeping.
For what you give voice to, for the truths you utter.
For the clarity of your writing.
For writing in this public forum.
Thank you.
Thank you.
Yes, it is the other side of the miracle, the what if, the 19 drugs thrown at the wall in 19 years that Sophie and your family can't get back. I want to say that at least she is finally almost entirely seizure free, finally her brain can rest, but I imagine the very miracle of this on some days breaks your heart anew. It breaks my own heart to think of it so I probably cannot even fathom the pain in yours even amid the celebration. I am glad you write about it, so the whole world will know. Thanh you.
ReplyDeleteI can see it in your photos, in her face. Sophie is present.
ReplyDeleteI thought I was too tired to watch the special last night but when I'd finally gotten the dishes washed and done all the night-time chores I sat down on the couch for "just a moment" and an hour later I'd watched the whole thing.
ReplyDeleteI had the same thoughts you did, although of course, not in such a deeply personal sense. But because I do know you (in this way) and Sophie and Oliver and Henry, I couldn't help but feel involved in a way I never would have before. I also thought of all the people I know who have used and do use marijuana to alleviate the pain and the nausea of chemo. I heard that one doctor say, "This is a drug which humans have been using for thousands of years." Or something like that. I saw little Vivian stumble and be confused on her "traditional" seizure medication. I saw the powerful eyes of the Stanley brothers. I saw the true belief in the face of Sanjay Gupta. I saw the desperation, the hope in the eyes of the families who have moved to Colorado to seek what could save their children's lives.
I think that the rock is rolling down the mountain, gaining speed and momentum. I think that this train has left the station. I think that the Federal Government will have no choice but to remove marijuana from the Schedule 1 classification. I think that the parents of the children who can and who will benefit so hugely from this compound are the bravest of the brave. The most loving of the loving. This is what I mean when I talk about love being the current that runs it all.
I think about you, Elizabeth. I think about Sophie. I think of your eyes, her eyes.
I love you.
Makes me think I need to watch the special... sorry i missed it.. will do so on some computur tape of it somewhere and come back to this post... promise.
ReplyDeleteI don't doubt you're in a state of shock. You've all undergone a phenomenal amount of change! I haven't seen the CNN special, but I agree with your admonition to the president.
ReplyDeleteI am just so proud of you, so very, very proud of you.
ReplyDeleteYou are part of the tidal wave of this revolution. All of you.
ReplyDeleteWhat Mary said.
ReplyDelete