hopes and dreams

When I called my brother Scott, who lives in Tucson, another man answered the phone.

“Is that you, David?” I asked, recognizing the voice of my brother’s childhood friend.

The two of them were driving around San Francisco after having had early evening gin and tonics in celebration of their reunion. Scott, in town for work, was visiting David who I think lives in Presidio Heights with his partner Larry. I spoke with David for a long time getting the update on him and on one of my favorite places in the world. At one point in the conversation the two of them drove past my old apartment on the corner of Bush and Powell, and a flood of memories bathed my brain.

“It’s sunny and seventy degrees here,” David told me, “and we went for a long walk at Crissy Field.”
“Here, it’s snowing and almost dark,” I replied, dreading an approaching blizzard.

David reminded me that we were going to do a house swap sometime. He and Larry would come vacation here while Michael, Calvin and I would fly out to San Francisco and stay in their home for a week or two. I told him that was no longer an option.

“Now that we’re treating Calvin’s epilepsy with cannabis, we can’t board a plane to go anywhere,” I said. “Marijuana is still a Schedule I drug. We’d be breaking the law.”

Having said that, I imagined the warmth of Italy, of Brazil, St. John, Portugal, San Francisco, Hawaii—all places I crave to visit again but cannot, at least not with Calvin, and equally impossible for Michael and I to leave him behind.

I went on to tell Scott and David about Calvin’s progress with the cannabis oil. Earlier in the day I’d looked back at past calendars searching for Calvin’s highest clobazam dose and his lowest weight so I could calculate his overall benzodiazepine decrease. In doing so, I learned that we’ve weaned Calvin off of over sixty percent of his clobazam since beginning a homemade THCA cannabis oil last February and having added a CBD cannabis oil in November. I told them how much calmer Calvin is and how he is finally—for the most part—walking by himself after nearly nine years of practice under the influence of myriad dizzying pharmaceuticals.

The next day in the shower, I recounted the phone conversation to Michael. I recalled the months, if not years, of utter mania that Calvin experienced on high doses of three pharmaceuticals, and my comorbid frustration, anger, exhaustion, despair and tears that accompanied it. Recently, I had read a past blog post in which I described spooning nine anticonvulsant pills into Calvin’s mouth after a seizure. I’d seen old photos of Calvin in a stupor, his eyes vacant and half-mast. I’d watched old videos of Calvin screaming at the top of his lungs behind a drugged-up, screwed-up face, his arms flailing, his feet stomping, his fingers snapping and his teeth clenched into a deranged grimace.

“Oh, yeah, I remember it all,” Michael lamented.

I went on to point out to Michael that, in the middle of this benzodiazepine withdrawal, Calvin is having roughly the same number of seizures each month as he did a year ago when he was on sixty percent more benzodiazepine but no cannabis. Now, he is no longer having seizures during the day and hasn’t for over five months. Granted, some of his nighttime seizures are more convulsive, but this could be due to the withdrawal itself. And, thankfully, he is bouncing back from them amazingly well.

I spent the morning after phoning my brother missing him, hoping he’ll come visit and replaying our conversation in my mind. It made me think of Calvin’s neurologist who prescribed his first benzodiazepine, clonazepam (Klonopin) when Calvin was just three years old. I wondered, with so many other drug options, what compelled the man to do it and why did he refuse to recommend taking Calvin off of it considering it wasn't meant for long-term use and considering that I pressed him so hard and so long. I wondered if he was just covering his ass. I knew he didn’t have a child with epilepsy so I doubted if he’d seen—first hand—the destruction that benzos can do to a developing brain, can do to a family, can do to our hopes and dreams.

I thumbed through more old photos of Calvin and dreamed about what kind of a boy he’d be if he had never touched a benzo. I wonder if he’ll ever regain what he has lost, if he’ll ever lose the psychomotor hyperactivity, the irritability, the finger snapping and eye poking and teeth grinding and gastrointestinal upset that I reckon could be caused by the benzos. I wonder if he’ll ever say Mama again, or be able to tell us what hurts, or be able to feed himself, or be rid of the seizures that plague us all.

I worry and wonder, but I also continue to dream, looking to cannabis and hoping, someday soon, we can board a plane and bring our boy back to sunny San Francisco where Calvin's story all began.

April 2011, one of Calvin's many dreadful months

No comments:

Post a Comment