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.

17 comments:

  1. Sophie is living proof that cannabis can and does change lives for the better. You've educated so many people through your work; let's hope that people become more receptive to these greatly stigmatized drug.

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  2. I exult with you! This is a beautiful and mindful post.

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  3. I have goosebumps. I love that this morning there was no seizure. I believe that calls for some celebration. You are a wonder and such a gift to others who are looking for hope and honesty and wisdom as they navigate these murky waters. Thank you.

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  4. You and the wife of the soldier are exactly right. No one knows what the long term effect of anything will be. But knowing that Sophie has a better today and letting the tomorrow go for a bit is whats best for all.
    You know I take a medication that could have god-only-knows long term effects but I won't let that stop me from getting a better chance at today. And there's no way you could turn back.

    I exult with you in a seizure free morning. You, little surfer and your mermaid daughter have caught a good wave !

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  5. You are one strong, brave woman, Elizabeth. After all the drugs the medicos have been throwing at the problem with little to no success, how dare they question and try to criminalize the naturally sourced substance that is working. You and Sophie and the family deserve every good day, week, year you can get. I wish you many more. x0x0 N2

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  6. You are so wise. So very, very wise.

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  7. Holding my breath with you that the fiddling continues to work!

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  8. Carpe Diem my friend! Glad for your morning----may it extend and extend. I had a college professor who called that jinx syndrome the "eternal crush"----life going along so smoothly then------wham!

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  9. Ah, Elizabeth--you're digging into this. It's scary to dig into hope. I may be uneasy (grouchy?) by the expectations that you're brave, wise, etc. But I know that this framework works for you (isn't it odd how we can find some similarities that emerge from our differences of opinion).

    Anyway, my tired brain gives you a hug. And I'm super glad to hear that you might have the possibility of hope.

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    1. I like the idea od digging into hope. I'm not sure what you mean by the "uneasiness" or grouchy way you feel -- nor what framework you're referring to. Plea service elaborate, wise Teacher!

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    2. I like the idea od digging into hope. I'm not sure what you mean by the "uneasiness" or grouchy way you feel -- nor what framework you're referring to. Plea service elaborate, wise Teacher!

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    3. Rereading my comment, it sounds like I'm saying that I'm uneasy about YOU, and I apologize! I think what I'm saying here is that when people say I'm wise, part of me wants to say, "Akkkk! No, I'm just making my way through this the way any of you would! It's not my wisdom that's brought along a brain tumor to a wise person!" So I generally appreciate the warmth that's conveyed through…what…I'm not even sure. I guess I'm talking about some of the compliments as feeling distancing. If a friend touches my shoulder and makes the "This can really suck, can't it?" facial expression, that can feel really connected.

      I am truly throwing this out there without even rereading.

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  10. Who knows if there are any long term effects from marijuana. She's not getting high every day. Her seizures are being controlled. And most importantly, Sophie is part of the world again. You can see it in her eyes.

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  11. All I can say is YES! Live in the moment. It's all we have.

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  12. You always know the right thing to do. I love you. Speaking of PTSD my daughter Rachel and I were discussing the other day that she feels like she has it. In her life, as you know in yours, there is never a moment where it stops. The stress, the joys mixed in with the vigilance. The worry your child could die all of it is with her every moment of every day even in her sleep. The strength it takes to be that mother is unlike anything else. I bow to all of you.

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