Saturday, April 16, 2011

two years ago

On this blog, I've never told the full story of what happened on the day my mother first showed signs of her brain cancer. This is that story, known to my brothers and my closest friends.

Two years ago, on April 16, 2009, almost to the very minute of this post's time stamp, I woke up and smelled something burning. I went upstairs to find a spotless kitchen, and my mother sitting quietly in her favorite corner of her new couch, watching Korean TV. My father was nowhere in sight.

I went to the kitchen sink and found the pot in which someone had tried and failed to cook breakfast. The pot was partly filled with water; its bottom was covered in the black char that can only happen when someone starts heating something on the stove, then turns away and forgets about it.

I called over to Mom to ask her what had happened. She got up from the couch and approached the kitchen with an open, childlike expression on her face. I asked her whether she had tried to cook breakfast, and she nodded, wide-eyed. The look on her face alarmed me: she wasn't herself at all. When I asked her what she had tried to cook, she said, "I tried to make some... some... some... chicken!" It had obviously been oatmeal, and my mind screamed aphasia. I asked Mom a series of questions-- the sort that a doctor might ask a patient with neurological difficulties: what day is it? Where are you? Who's the president of the United States? Mom's answers, and her continued demeanor, weren't reassuring.

I sat Mom back down on her couch and went to find Dad. He was in his den/computer room, typing away on his computer, seemingly oblivious to what was happening to his wife.

"Something's wrong with Mom," I said. Dad stopped typing.

"She was acting funny this morning," he observed quietly.

"She's aphasic and is acting almost as if she's having..." I couldn't say it.

"Could be a T.I.A.," Dad said. I asked what that was, even though I was pretty sure I knew the answer. "Transient ischemic attack. A mini-stroke," Dad whispered. And then he did something I'll never forget, because it was emblematic of how he handled the entire nine-month crisis: he leaned slightly toward his computer, bowed his head, and squeezed his eyes shut. I was witnessing denial. My father was blotting out reality.

"Shouldn't we do something?" I asked, feeling the urgency building. "Shouldn't we take her to the ER?"

My father-- a man with paramedical training-- said, "Nah, the ER won't take her. I'm going to set up an appointment with Dr. Reyff [not his real name]. His office isn't open yet. I have to wait two hours before I can call him."

"Why won't the ER take her if she's having a stroke?" I asked, incredulous.

"The ER won't take her," Dad said again, shaking his head. I was dumbfounded, and didn't know what to say to this. My father's shutdown was complete.

I went back downstairs and quickly emailed my brothers about the situation, including the fact that Dad wanted to wait for Dr. Reyff. My brother Sean called as he was rushing over to the parents' house; he and I agreed that waiting two hours for the doctor defied common sense: Mom needed to go to the ER now. My brother David came over as well, and it was the three of us-- with no help from Dad-- who persuaded Mom to stand up, slip on some slippers, and head out to the van so we could go to the ER.

We got Mom to Mount Vernon Hospital, discovered she had a mass on her frontal lobe, had her transferred from Mount Vernon to Fairfax Hospital, and left her there for her MRI. Some of these events are chronicled on this blog. What I didn't blog about, however, is what happened that night, after Dad and I got back home sometime after 1AM. I was furious at my father for his conduct throughout the day, and I let him have it.

"How could you insist on not taking her to the ER?" I demanded. It was the question that was foremost on my mind. "She could have been dying right there in front of you, and all you did was clean up the mess in the kitchen and go back to your computer! What the hell kind of paramedic can't tell when a patient needs urgent care? She never burns a meal! That didn't alert you that something was seriously wrong? You couldn't even recognize a cognitive problem like aphasia? All I ever had was a couple psych courses, and even I know what aphasia looks like!"

Dad's response was unbelievably lame: "I never took any psych courses, so how could I know that?" Was my father simply dodging responsibility, or was he genuinely that stupid?

My mother had often called Dad a "phony-baloney doctor." She may have meant it tenderly, as the sort of gibe a wife might use against her husband, but with her instinct for understanding people, she doubtless knew, even years earlier, that my father wasn't a competent EMT: he merely thought he was. On April 16, 2009, that incompetence could have gotten my mother killed.

Sean told me much later that, if I hadn't been home, Mom would have died on the couch. Maybe; maybe not. As it turned out, she hadn't had a stroke: her cognitive symptoms were the result of the edema arising from her brain tumor. Still, it's likely that my father-- who had revealed a shocking inability to step up and take care of his wife when she needed him most-- would have left my mother on that couch until she quietly slumped over. Had I not been there. Had I not been there to provide a sense of urgency.

My father's response to my furious questions wasn't I'm sorry, son; I fucked up. That, at least, would have been a man's response. Instead, all he did was deflect: "It's good that you can express yourself this way." Spoken with clinical detachment. The remark was so utterly irrelevant that all I could do was laugh bitterly.

"That's all you have to say? You think you're my therapist, now?" I was breathing hard, filled with a mixture of incredulity and fury. In a single day, I had lost almost all respect for my father, who had proved himself to be a coward in a crisis. The man who loved to brag about his EMT training, who so proudly wore a military uniform, had shown himself unable to rise to the occasion of his own wife's need. His role throughout the day had been little more than to fill out paperwork and to sit by Mom's side-- something the rest of us were already doing. He had shown not a single spark of initiative.

Our family had no idea what glioblastoma multiforme was when the day began, and if I recall correctly, we didn't even learn that term until a day or so later. But as the weeks rolled on, I was the one who did the research about the cancer; I was the one who guided the decision-making process as the cancer progressed; I was the one who cleaned up after my father's repeated mistakes in his care of my mother. What I saw on April 16 was that I was losing two parents, not one: my father had effectively left the building, passing off responsibility to his sons because of his own unwillingness to make important decisions or take decisive action.

What happened that day, and over the ensuing months, has had major repercussions for our family. And I haven't blogged about any of that until now.

Oh, yes: I was ignorant about strokes on the morning of April 16, 2009, but I researched them a day later, so now I can tell you this: if you think someone's having a stroke, then you've got about one hour to get that person to an ER. My father should have known that. All I had to do was use Google to find this out. Jesus Christ.

In case you're wondering: yes, many things went un-blogged during my mother's illness-- the truth about my father being the most conspicuous of those things. Friends advised me not to write about this at the time, but given all that's happened since my mother's death, I see no reason to keep this information to myself any longer.

ADDENDUM: So much credit goes to my brothers for keeping their wits that day. David was, ultimately, the one who got Mom to her feet: she had been resisting our efforts to persuade her to get in the car.

The tableau would have looked bizarre to an outsider: there was Mom, stubbornly curled up on her couch in the living room, with her three large sons standing over her. Every time one of us said, "Come on, Mom! We need to get to the hospital to check you out," she responded with an iron "No!" Her expression was a frightening combination of stony and desperate. When we shot back with a "Why?", Mom couldn't answer us-- more proof that something was dreadfully wrong. Mom wasn't the type to be at a loss for words, but that morning, all she could do was glare at us.

I remember briefly wondering whether she would struggle violently should we try to get her on her feet. David, who had more common sense than I did, didn't wait: once he saw that talking would be fruitless, he bent over Mom, slid his arms around her, and lifted her into a standing position. She didn't resist at all.


Monday, April 11, 2011

thanks, Stephanie!

I met with Business Banking staffer Stephanie today, at my local PNC branch, and she did a great job of giving me the lowdown on how to proceed with the creation of a 501(c)(3) nonprofit organization. The first thing I need to do is file with the IRS for an "exception status," and once the IRS sends back its approval, I'll be meeting with Stephanie again to discuss the next steps in the process.

I also learned that my idea of involving kids in my project is a good one: Stephanie noted that many kids, especially high schoolers, often need to meet community service requirements of some sort or other (due to involvement in a service-oriented club, for example).

So for the moment, it's going to be a matter of downloading forms, filling them out, and waiting on tenterhooks for a response from the IRS. Wish me luck as we get the ball rolling.