By Anup Shah, MS3
There was nothing boisterous about him. He just preferred keeping quiet. When he walked in a room, you hardly noticed he was there. Don’t get me wrong. He enjoyed our company – he just relished it from the background.
That’s why on the night of Nov. 18, 2013, when my maternal grandfather, Kanaiyalal N. Parikh (whom we all lovingly referred to as Dada) went into ventricular fibrillation and ultimately lapsed into a deep coma, my family couldn’t wrap it’s head around the idea that he suddenly wasn’t there. He was always there. We had grown so used to him just hanging around.
Two days later though, after the doctors brought Dada out of hypothermia and the neurologist determined that he had maintained only spontaneous brain activity, reality began to set in. Over the next 13 days, my extended family and I (all 12 of us) would traverse an emotional rollercoaster that ended in the longest, most difficult goodbye of our lives.
In our medical ethics courses, we’re taught a myriad of ways to talk to families with terminally ill patients on life support. Never leave a shred of doubt, but also never leave false hope. Take your time and listen. Silence is often the most important part of the conversation. Always be empathetic. (That last one I now realize is impossible unless you’ve been through it yourself.)
I always wondered how families could be so obtuse and oblivious to medical reality and why someone would put a family member through days, weeks and even months of silent suffering.
You see, faith and hope become most powerful when we’ve been betrayed by our own abilities to solve life’s problems. As a person in medicine, there is a fine line between what I can do and what is left to the powers that be. So naturally my initial reaction was to look at this from a medical perspective. But when the neurologist updated us on Dada’s limited brain activity, that fine line suddenly emboldened.
The neurologist hadn’t ruled out the possibility of Dada waking up. But the chances were very slim. Still, that sliver of hope, that 5% chance that we in medicine so often relegate to the medical miracles, was everything my family needed to keep the faith. My father, a physician himself, found a paper from Johns Hopkins on Day 2 showing that waiting 72 hours after hypothermia for resolution of brain activity had proven benefits. To be fair, my father is the optimist of the family, but we were all keeping our hopes up.
By Day 4, Dada’s entire body was functioning normally except his brain, and although the prayers continued and faith remained, looks of worry and reality began to gloss over some of the faces. This is when I started hearing the stories about my Dada.
When he moved here from India in 1979 at the age of 47, he was coming from a very meager, lower-middle class background. He came to find that one opportunity. Of the many places he went job hunting, one was the MD Anderson Cancer Center in the budding Texas Medical Center to inquire about a position as an X-ray technician.
He had trained for six months in 1955 and had worked as a tech from 1959 until 1961 – all in India – and quit when someone told him that the radiation exposure would one day kill him. But desperate times called for desperate measures and he went to MD Anderson not once, but four times. The fourth time he went, the HR lady looked at him and said “You really want this job don’t you?” He told her how he had already booked his return ticket to India in 2 weeks and that if he couldn’t find a job by then he would give up and go back. A few days later on Jan. 26, 1980 he started as an X-ray technician. He cancelled his return ticket for Feb. 6.
For the next 29 years, he would work tirelessly until the age of 77, saving diligently in the hopes of providing his children and grandchildren better opportunities than what he had. At his retirement party in 2009, his supervisor of 28 years said, “I have never met someone who, no matter how much you asked him to work – even if he worked 3 consecutive 8-hour shifts – never complained once and never ever made a mistake.” This was my first time hearing any of this.
On Day 5, we all woke up together – though most of us hadn’t slept – and drove to the hospital to visit Dada. Things were starting to turn a corner. His FiO2 was brought down from 60 to 30% (FiO2 is the percent of oxygen in the air being passed from the ventilator to the lungs – the FiO2 of the air you and I breathe is 20%). His respiratory rate was being brought down. To us, this meant that he was slowly weaning himself off the ventilator and that he may resume more brain activity. To the doctors, it probably didn’t mean much. Yet we continued to pray.
Dada had an unshakeable faith that whatever happened worked out for the best. When I was 3, we lived in Queens, NY and I had been hospitalized twice for cold induced asthma exacerbations. Dada’s response was “whatever happens is for the best.” My mom always tells me how livid she was when he said that, but how that, had I not been such a sick child, we may never have made it back to the warmer Houston climate and that I may never have had the chance to grow up with my extended family. I’ve adopted this attitude as my own for the last several years, and I can safely say that it somehow never fails.
On Day 8, things took a turn for the worse. His FiO2 was back up to 60 and his ventilation rate was increasing. Up to this point I was coming at least once a day to the hospital to pray with my Dada. He had set times that he liked to pray and I’d do my best to come see him at those times. I was starting to beat myself up over the fact that even though I was on my surgery rotation, I could feasibly make it to the hospital everyday and spend just a few minutes with him – and I regretted not doing that more the last two years.
In addition to everything else, my grandfather had been one of the biggest supporters of my medical school endeavor. When I got the famous matter-of-fact, congratulatory phone call from Dr. Stephen Greenberg about my admission to Baylor College of Medicine – the one that often leaves you wondering if you had just been pranked – Dada was the first person to know.
Throughout my first two years, he has provided me all the support when I needed it. He wanted to, even at the age of 81, take care of his grandchildren rather than them ever having to take care of him. A week before he went to the hospital, we had gone out for lunch and before I left, he grabbed my arm and asked me how much money I needed for school. As I always did, I told him I was fine but a part of me wishes I had just asked for something one last time.
On Day 10, the neurologist signed off. The prayers continued, but every minute I was there became more and more emotionally draining. The next few days would be spent just gathering the family and figuring out the next steps.
On Day 13, before we let him go, there was deliberation as to how we would proceed afterwards. The topic of body donation came up, but a few of my relatives seemed uncomfortable with the idea – thinking that it didn’t comply with our spiritual beliefs and that my Dada may not have wanted that.
This is where I interjected.
I brought up another conversation I had had with both of my grandparents more than a year earlier after finishing my anatomy course. I remember trying to explain to them what exactly it was that we did in anatomy – and instead of wowing them I just ended up just spooking them. But I followed it up with the notion that one body donation goes on to teach four or five medical students, and that those medical students go on to save thousands of lives in their careers. When they looked at it this way, my grandmother (who was a teacher in India) and my Dada both felt this was something in which they’d want to take part.
A few hours later we let him go.
This type of goodbye – where the plug is in your hands and you control what happens to your family member – is the toughest goodbye imaginable. I felt like I was giving up on him, but at the same time couldn’t bear to see him lingering in this limbo. We wanted him to be at peace, but we also didn’t want him to leave us. Nobody deserves to experience such a dichotomous decision.
Ultimately when it comes to our own, rationality and statistics and science and medicine go out the window. It doesn’t matter how slim the odds are. Faith and hope will carry a family when times are desperate, much like it did with mine for 13 days. Much like it did with my Dada for 81 years.