Tuesday, June 13, 2017

Monsters and Men

I knew something wasn't quite right the moment we got off the plane from Charlotte. We had landed at PBI after connecting in Charlotte. We were flying back to the United States after spending two years living and working in Chennai, India. We had stopped in London for a few days which was alternatively a disorienting return to Western civilization and a complete disaster.

The next few weeks would prove no less discombobulating. At some point we decided it sounded like fun to stay in my dad's vacant ocean front condo. In retrospect, the sparseness of the accommodations -- though oceanfront -- only served to exacerbate our sense of dislocation. The reverse culture shock was nearly debilitating. I am not exaggerating. We missed India. All of us. It had been our home for two years. For the kids, it was all they had ever known. We had been surrounded by kind and warm strangers, and though we were now surrounded by family, the strangers were no longer as kind and warm. There was an appalling lack of kindness toward fellow man.

How did I know something wasn't right?

My mom didn't meet us at the airport.

I actually did not look forward to her meeting us at the airport as she had done upon every other arrival. She would meet us in the terminal, accompany us as we picked up our checked luggage and picked up the rental car. She would even ride with us in the rental car shuttle to the remote lot and if not try to help us install car seats in the rental car, then help in corralling the kids so they didn't get run over while we wrestled the car seats into the rental car. She only wanted to help. That's all she wanted to do. But I dreaded her being there, because I thought her presence would be more of a burden as Elise and I tried to manage three thoroughly exhausted, jet-lagged kids through the terminal, baggage claim, and the car rental pick-up.

But when she wasn't there, I was disappointed.

Then, I was pissed.

Where was she? We just flew all the way back from India to see her and she didn't even come to the airport?! What the f*$&!

I remember calling her after we had landed. She would be waiting for us at the house. I told her that was fine, of course, and when we did arrive, the customary meal of Publix fried chicken and cold beer was waiting for us. You really couldn't ask for a better first meal upon returning to the United States after a few years. Mac 'n' cheese for the kids. Ruffles potato chips.

Part of that visit was a trip to Disney. Nanny paid for everyone's ticket. Aunt Jackie and Uncle Bill offered up there two bedroom timeshare for all of us. They even babysat one night, so Elise and I could enjoy a much needed and long overdue night out together.

We rode the monorail from the parking lot to the front gate. (Is there really any other way to arrive at the Magic Kingdom? Take the ferryboat? No way!) I remember disembarking from the monorail. I ran down the ramp to keep up with Peter and Sam, both excited and running. At some point, we all sprinted ahead before realizing my mother, aunt, and uncle were lagging.

Because know one had still really told me what was going on, I didn't understand why she was moving so slowly. Her lower abdomen was filling with fluid and was distended, but in her effort to keep us from worrying, she never told us what the matter was or what was going on. This would continue over the course of the next 18 months, a separation of reality and what my mom chose to share with us. She always chose her words carefully when she talked to us. For example, using the word "treatment" instead of "chemo". She didn't want us to worry. She didn't want to inconvenience us or be a burden to anyone.

The biggest challenge for me personally in dealing with her illness was navigating between these two dimensions: reality and my mother's perception of it. Their divergence was greater at times, but they never came together until the day before she died, when she finally admitted to Carlton and I she was dying, something we knew 18 months ago, but she refused to believe.

Even when she asked me to drive her to a doctor's appointment to have a port installed, I don't think at the time I really knew what was going on. I didn't know what a port was or what it was for. I must have known she was sick, but I didn't grasp at the time how serious it was. A procedure she assured me would take about an hour ended up taking all day. We drove back that evening after the sun had set, me starving because I hadn't eaten anything since early in the morning, if even then.

On the drive down, she talked about a  friend from Chalmette who was killed in Vietnam. He must have been a boyfriend the way she talked about him or an unrequited love. She had been talking about him more recently, it seemed. I didn't think much of it at the time, but soon came to understand as I came to understand the seriousness of her illness why she was thinking about him so much.

On the drive home, seemingly blinded by the sea of red blinking stream of tail lights on I-95, I remember her talking about her brother, Andy, and Cousin Joe. Again, only in hindsight, did I recall the in her words the way she were coming to terms with those relationships.

I can't write about either of these interactions with the clarity I want. I can capture neither the same way I captured her last moments, though I wanted to. I couldn't write about them here. Not when she read the blog. One of the most pervasive themes of our last year and half -- Elise and I dealing with my mom's illness -- I couldn't share here at all, because she would read it. I regret not writing it down then and sharing at a late date, but that didn't occur to me until much later. By then, it was too late. I didn't begin writing about the cancer until my mom was too sick to read about it, the tale of her and her monster.

I remember constantly being frustrated by my mom's denial. The denial was so acute, I felt like shaking her to tell her, "You're dying!" It wasn't until Elise told me you can't take the denial away, because it will only be replaced with depression and hopelessness, that I finally gave up trying to figure out the "truth", what was really going on, gave up trying to decipher and decode the real meaning behind her words.

We would soon leave Florida for Washington state and to see Elise's parents in Spokane. After we left, the distension grew worse and my mom had to have surgery. Over the last year and a half I've had trouble keeping track of all the surgeries, medications, and treatments. I tried, but there were so many of them it was hard. But I do remember this was the first one. This was the moment the suspicions I'd been harboring since we first got off the plane at PBI were confirmed.

Josh called and told me he met with the surgeon after the procedure. The oncologist would never give a prognosis. He said it wasn't his practice to do so, but the surgeon obviously not constrained by the same scruples told Josh he gave her 18 months. As Josh told it, he said it as a matter of course, as though he were stating the obvious. The oncologist would never confirm nor deny this. That was when I first heard the terms "Stage IV" and "terminal". After I hung up the phone with Josh, I stood in the middle of Elise's parents kitchen and cried the hardest I would until the day I told the kids Nanny was dying. That night, I woke up in the middle of the night, next to Elise, screaming, waking myself up from a nightmare. It was the first time I had ever done that and I haven't done it again since. 

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