Conversation with Mom

My mother flew to Tennessee from Florida to help me recover from my latest hospital visit while Eric had to be out of town for his workshops. A couple of days ago, while we were sitting together in our living room, I asked her what one of her earliest memories was of any doctor trying to figure out why I had a “cold” every single day or even the reason all my organs were reversed (even my heart is on the opposite side). The following is what I wrote, summarizing what she told me.

When you were three years old, a hospital in New Hampshire decided to do a sweat test on your brother after he was born. I had no idea what that even was. Back then, questioning a doctor’s decision was practically unheard of. At 24 years old, I was navigating parenthood with three children, and I had to trust and do what the doctors said. Their word was law. The idea of questioning a doctor seemed almost taboo, and accessing your medical records was not allowed. Unlike the present, where we can simply pull up health information on our phones.

I assumed the test was related to your persistent coughing and thick mucous along with breathing difficulties that your brother was now exhibiting as well. Naively, I thought the test would pinpoint a cold or allergy. Little did I know, a whole different reality loomed with no answers until over a decade later.

Before the test, your grandmother dropped a bombshell of an opinion—a sweat test supposedly assessed mental capabilities, she firmly said. Panic set in. Remember, it was the beginning of the ‘70s, so there was no internet and no easy access to information at all. In hindsight, she likely heard it from someone at church, her work, or a neighbor down the street. And now that I think about it, the lack of resources and connectivity at that time made everything more bewildering.

Fast-forward to the actual sweat test, which measures salt levels on the skin to see if you both had Cystic Fibrosis. At the time I was thankful that the test for CF turned out negative, but the underlying issues persisted. The constant coughing, runny nose, ear infections, and labored breathing remained a mystery.

Even a decade later, in Boston, another sweat test was administered, officially ruling out Cystic Fibrosis, again. However, relief flooded in, not just from the repeat negative result, but from a long-awaited diagnosis—finally a name after all those years. Kartagener’s Syndrome and Primary Cilia Dyskinesia. It was determined after they took a biopsy from inside your nose to test the cilia. However, because it was so rare and a relatively new discovery, doctors were never in agreement on how to treat both of you. So it was still a journey into the unknown.