There seems to be at times this irrational fear of denial among some doctors. We have dealt with enough doctors now to know they are as different and unique in their personalities and approaches as any other group of people. There are the cheerleader 'Be positive!' doctors, the funny 'humor is the best medicine!' doctors, the soft spoken 'we'll let you know only what you really need to know' doctors, the arrogant talk over your head using big words doctors, the compassionate put themselves in your shoes doctors and then there are the serious, 'I really need you to understand how serious this is' doctors. It is the last group that I have always struggled with the most. They seem very concerned that we have a full depressing understanding of all the daunting things our future has in store. Any false optimism or perceived cheerfulness in light of our circumstances seems to send off a red flag that it is time to sit us down and force that worrisome denial right out of us. I would come to feel that almost all neurologists belong to this last group and dread any meetings with them as a result.
At times I just want to explain to them that denial is in fact a coping mechanism. Freud identified it as one of the ways we protect ourselves when we cannot deal with present realities. Some degree of denial may be a necessity, and when they drive it out with their facts and figures and truths, we can walk away perhaps more realistic but inevitably stripped of a much needed way of coping with the unimaginable.
Our first of what would come to be many denial bursters occurred the afternoon following the ambulance ride. By this point, we had been awake some 36 hours and had experienced seeing our daughter become sick instantly before our eyes, we had followed an ambulance at 4 in the morning and then we had been overwhelmed with this big new hospital and new procedures, new doctors and so many questions. I remember clearly that I had on maternity leggings and an oversized purple shirt with no make up and crazy frizzy hair and in my sleep deprived emotionally wrecked state, I know I looked like a pitiful mess of a character. This was the demeanor I had to take on for my first ‘family meeting’ that afternoon.
Sitting in the conference room was Al and I, the nephrologist (kidney doctor) at the time and a whole slew of doctors, nurses and social workers. We had no idea who was a senior doctor and who was a medical student, there just seemed to be so many of them. Somewhere in that room was a wonderful nurse practitioner who we would come to know and love, who would be there at the kid’s first birthday, who would come up and see them every time they were admitted long after they left the NICU and who closely follows their lives through Facebook. We would come to see her familiar face as a source of comfort. But that day she was just another stranger's face that looked sorry for us. Somewhere in that room was a funny young doctor who wore chucks with his Scrubs and that we would affectionately call JD after the main character on Scrubs. We would come to be glad for his rotations on for his friendly, relaxing and personable approach. But that day he was just another face, no different from the many others who I have never seen again.
The meeting was conducted by the nephrologist who was on service at the time. We would come to know 4 main nephrologists and value each of them for their unique strengths. This particular man was on service at the time so had the misfortune of being the doctor who would have to diagnose the kids and explain to us what all that meant. For playing this role, I would come to call him ‘Dr Doom and Gloom’ for a very long time. Quite irrationally it always felt like because he told us what they had, he had somehow brought this tragedy upon us. So through no fault of his own, following that meeting I would always feel quite anxious when he was on service. It took me a long time to reach the point where I truly respected him, not just because he was very much an excellent doctor, but because he wanted us to know what we were up against and own it and face it. His goal of banishing our denial was painful at the time, but arguably necessary in the long run.
As I sat there in my leggings with my wild hair and tired eyes, he drove home the point that we were talking about a very serious medical condition that would change the course of their entire lives. Although we had worked out from our move to the big hospital that going home was right around the corner, truly nothing had prepared us for him telling us he expected us to be there for another 6 months to a year. While we had seen firsthand how dangerous their condition was, the long list of possible complications from strokes to line infections to countless surgeries felt like a punch in the stomach. Suddenly dialysis became not just a scary possibility that we did not understand but an inevitable heartbreaking part of their future. His most positive statement of the whole hour was when he said they knew of one patient who had survived to 21 with the condition. He looked like this was supposed to bring me some sort of solace but somehow all I could do was think about what had happened to all of the others.
I suppose the meeting can best be summed up by the following exchange: Dr Doom and Gloom tells us that this condition will alter the rest of their lives and be something they will always deal with. In a small shaky voice I challenge that surely once we transplant them in a couple of years, everything will be okay. Like wearing your heart on your sleeve, I threw out there my remaining morsel of hope I was clinging to for dear life. We’ll transplant them and everything will be okay, it was my attempt to make peace with this awful diagnosis. And as soon as I offered up my heart’s hope to them, he replied with ‘Transplant is just trading one set of problems for another.’
And my little small fire of burning optimism against the odds burned out right then. The goal to make me face my reality was a success and I felt drained dry of all positivity, hope and comfort. Maybe it needed to happen in order for me to begin rebuilding a new vision and optimism rooted more firmly in reality. Maybe I needed to truly demolish my ordinary dreams I had so clutched to. Maybe being stripped bare is the only way you can really start over like you need to. It was probably a necessary pain. But when I think about that day, I don’t think I will ever remember anything but the empty hurt we left with. Robbed of our denial with nothing to put in its place. Forever changed.
Of all the things we have been told by doctors, there are few we quote as often as the fact that transplant is trading one set of problems for another. Having been through two transplants, I have at times scoffed at this quote and at other times, reflected on the intense wisdom contained in it. Inherently it is true because transplant is not a magic cure all. At the same time, I believe one of the best decisions I ever made was to ultimately reject this prophesy he laid out.
Over the coming weeks and months, as I began to accept our journey and our battle, I chose not to accept that transplant was merely an exchange of problems. I built up a new dream whereby transplant would be my finish line. We would keep them alive and we would give them our kidneys and we would achieve our happily ever after.
No doubt it was the most important decision I made, to have something to hold onto. To refuse to abandon all hope. To choose to fight for some light at the end of the tunnel. To insist on dreaming of a healthier future. So while I now appreciate that he made me come to terms with dialysis and that he helped prepare me for their incredibly long hospitalization, I am also glad I chose not to be defeated by that first talk and that God helped to rebuild hope in me, a hope that was as necessary as air itself to sustain me for the years ahead.