For My Sister, the Superhuman

On October 4, 2007, my sister AL suffered a stroke due to a ruptured and bleeding cerebral AVM . Several months later, I sat down and wrote about the experience. My main intention was self-therapy through writing, but I also wanted to record some of the details that I thought (correctly) would fade from my memory over time.

Recently, AL and I had a conversation about how little she remembers from the weeks after the stroke (click here for a little more fore/background). I told her about my AVM journal and she was keen, so today I'm going to mail her a copy of it in its entirety. Please read on for a couple of excerpts.

In this first one, I had just learned from my dad that AL had both an active bleed and a large clot in her brain. When I first got off the phone with him, I was confused and on the verge of hyperventilating, but then my colleague, C (well, former colleague - I worked in NYC at the time) talked me down, and together we decided that I should leave work that very minute to begin the five-hour drive to my sister in Syracuse.

I was scheduled to go to China for work in three days. I took everything I would need for the trip with me (except, I realized later, my airplane ticket), because I was hopeful; a lot could change in three days. Maybe my sister would be fine in three days. C walked me to the bus terminal carrying more than her fair share and proclaiming herself my Sherpa. I was on the 2:50 bus and K left work early to meet me at the park & ride. We were on our way up to Syracuse. The ride was long and I hated it. It sort of reminded me of the time when, shortly after graduation from college, when I was working as a waitress and uninsured, I had a cyst on my head the size of a golf ball (and growing!) and K drove me from Washington, DC all the way up to Utica to see the only doctor who would remove the cyst for free - my mother. The pain had gotten to the point where I was rotating doses of Vicodin with three Advils, taking one of the other every two to three hours and I was still in a world of hurt. The present drive to Syracuse was throbbing painfully in a completely different way.

We finally arrived after about five hours in the car and were instructed by my dad to go to the fourth floor Pediatric ICU. She was stable. We walked into the PICU, and hers was the bed straight ahead and just to the left. I went to her and she looked just as she had last time I saw her. I gave her a hug and that's when she said "I love you" and I felt an immense rush of relief. She was fine! But then I noticed she wasn't really talking at all, or hardly at all. Everyone was talking to each other around her, but her participation consisted only of non-verbal communication: facial expressions, gestures, hand squeezes. A resident came over to give her a little test. He pointed to his watch and asked her if she knew what it was. She shrugged and laughed at herself and shrugged. Next, he asked her to name the object he had in his hand - a pen. She said "sand," in a rising tone, like it was a question and you could see in her eyes that she knew she was totally wrong. It was just this look of 'What am I saying?!' The resident asked her if she knew what the object was for / what people do with it, and she answered by making a writing motion with her right hand.

There were more questions, but I didn't hear them - I felt like I was going to lose it. This was bad. First, I turned around and took a few steps away from the bed because I didn't want AL to see me. Then I involuntarily sunk down to my knees. K was on me like a flash, squatting in front of me - "are you ok?" - and I was trying not to cry because I didn't want others to hear me. The situation was bad enough for AL, my parents, my brother and my other sister. Maybe because I wasn't allowing myself to cry, I was having trouble breathing. A split-second later, over K's shoulder, I saw a nurse coming towards me with a needle and asking if I was all right. I stood up, grabbed K's arm, and walked - almost ran - out of the PICU. Safely in the hallway, I let out my tears and my shock and my disbelief. That initial moment of realization - sometimes it takes seeing with your own eyes to grasp the gravity of a situation - passed, and soon I was able to pull myself together. The next two weeks were a complete roller coaster for my entire family - we dared to hope; we let the doctors' bleak assessments get to us; we knew she would be ok; we were faced with the fact that she would need long, hard, dangerous brain surgery; we saw the other brave kids in the PICU fighting their own battles with death or near-death; we watched AL laugh hysterically one day and fall into depression the next; we prayed (very rare, at least for me); we were insomniacs; we wondered when they would ever operate on her...

And here's an excerpt about AL's surgery, which finally took place on October 18. The two weeks leading up to it were hectic in the way that hospital life is. The doctors kept pushing the surgery back because they wanted all the blood to have a chance to settle down, dissolve, whatever.

When they wheeled her into surgery, my mom went with her in a crazy blue suit - half astronaut, half Pillsbury doughboy. AL went to sleep and mom joined all of us in the waiting room for what we expected to be a five or six-hour wait. We took turns going down to the cafeteria, getting coffee, walking around. Books and TV (mostly nothing on, but I do remember watching Ellen) to pass the time. There was a Mickey Mouse phone in the waiting room, and we were told we would get a call when the surgery was over or almost over. So, at the six-hour mark, every time the phone would ring, we would be all excited. But it was for other parents, other families... and the hours dragged on. About ten hours after she had been put under, we finally got our call. AL was being stitched up - the head neurosurgeon came in and told us that it had gone well, though longer than expected. There were literally thousands of vessels attached to the AVM, which they had needed to remove. So, for each of those tiny vessels, they had to cut, tie off, burn - very time consuming. We were all glad to know it was over and she was safe. They wheeled her through the hall and back up to the PICU. As we caught a glimpse of her, we could see that her eyes were both under the bandage that was holding her head together. She looked like hell, but she was alive.

The next day I got to really appreciate the shape she was in. She looked (and, I'm sure, felt) like she had gone a few rounds with a heavyweight and not been allowed to fight back and then been hit by a bus. The incision went from the center of the top of her forehead to the back of her head and then curved around and up behind her left ear. The skin and muscle had been pulled back and a piece of skull literally sawed out before the surgeons could even start working on her brain. Her left eye was huge, purple and swollen shut; her right eye was a slit. They had to increase her self-dosed morphine, which was the only medication they had found to effectively control her pre-surgery pain, to one full gram per push of the button. She was allowed one push every seven minutes. On top of all the pain, she was still having immense trouble communicating, and the morphine made her foggy and out-of-it. She was extremely irritable. She would want something described as "that" and would get frustrated when we didn't know what she meant. It was hard to bear and yet, the absurdity of the situation got the better of me at one point, and I just had to laugh. I brushed past the curtain surrounding her bed and laughed softly but hysterically next to the nurses' station. One of the nurses came up behind me - she must have assumed I was crying, which was fair enough, because there was a fair bit of that going on - and she asked if I was ok. I turned, smiled and said, "My sister is being such a bitch!" The nurse giggled and we agreed that the bitchiness was a good sign. Later, my sister would share that she really thought she wanted to die then. To just let go would have been such a welcome release. But she was feisty, and she fought on.

Don't worry, reader - it ends happily! And it makes me so proud to go back and think about all that AL's been through and how we handled it together as a family. She is an amazing girl and I am in awe of her. AL was fourteen years old at the time of her stroke. The only phrase she was able to articulate on that day - "I love you" - is indicative of her personality. She has faced mortality and depression in ways someone her age shouldn't have to. And almost the whole time, she's been able to laugh at herself.