Last fall, on Halloween, as it happened, my younger son Ronan took part as a volunteer in a study being conducted at a big Toronto hospital. The study was to determine the effect of electroconvulsive therapy on chronic depression. Ronan was part of the control group, and he underwent an MRI of his brain in addition to cognitive testing. It was interesting, fun, kinda cool. Three months later, he was contacted by a doctor affiliated with the study who informed him that they had just started processing the data, and that his MRI showed a shadow or highlight on his temporal lobe, suggesting encephalitis, or worse.
Ronan is exceptionally bright, by anyone’s standards, not just his mother’s. He’s 25 years old, in his last year of law school while concurrently getting a Master’s Degree in English. He is hilariously funny, musically inclined, argumentative, a bit moody, and an admitted hypochondriac. I don’t think anyone can be expected to cope well with the possibility of brain disease, but he is probably the worst candidate. The news sent us all into a tailspin. Fortunately, he was quickly referred to a neurologist, and, several days later, we all (Ronan, his girlfriend, and I) trooped into her office, where he was given a thorough physical and cognitive examination. He passed with flying colours. It’s amazing how many animals that kid can name in one minute, and I was absurdly proud. The doctor, however, remained perplexed. Anyone, she explained, with this kind of swelling of the brain would exhibit symptoms: vision problems, imbalance, headaches, speech and memory loss, but Ronan had none of these. She ordered a full blood workup and a followup MRI, with the possibility of an EEG and a lumbar puncture, telling Ronan that in the mean time, while all this must be taken very seriously, he should get on with his life, and that we were all to stay off Google.
We all went home to ferociously Google, and immediately went down all the scary rabbit holes: brain cancer, epilepsy, MS, ALS. It didn’t help that Ronan suddenly developed symptoms: headaches, tingly arms and legs, shortness of breath. To make matters worse, the follow up MRI had been scheduled almost immediately, but no one told him about it, so he of course failed to show up. He was given another appointment a month away. Friends told us to go to the States to get the test, but his neurologist insisted that it be done in house because “they knew what to look for.” What? What were they going to look for? A blood clot? Cooties? Static?
The days turned into weeks. Ronan went to class, we went to work. His girlfriend Katherine, a bastion of courage and support, moved in with us for the duration. He signed up for therapy - psycho and massage. Occasionally, convinced he might be having a stroke or a seizure, his panic would escalate, and we would debate going to Emergency. He was discouraged from taking any anti anxiety meds because his brain was under study. When I was waiting for my own diagnosis some 18 years ago, I floated unapologetically on a cloud of Ativan, but this was not to be for Ronan. Once, thinking he had lost feeling in his leg, he had Katherine stab him in the thigh with a pin. It hurt, thank God. Friends checked in, anxious for news. I cooked, and drank, and didn’t know things.
I am not, or am no longer, a religious person. I’m a cancer survivor myself, but I don’t attribute my continued life to a higher power. I have lost dear friends and family to disease and despair, and I know that there was nothing I could do to change their outcomes. That did not stop me from bargaining. I negotiated with a god I do not believe in. I promised that if my son could be spared, I would give up my wanton ways, go to church, and, I don’t know, read to the blind. I even told Ronan that, given a choice, I would die tomorrow, forfeiting the thirty or so years left in my life, to give him fifty. “Fifty?” he said, “Fifty will only get me to seventy five!” “Yes,” I said, “but that’s still substantially more than I would get!” The point remained moot.
And so it was that he went back into the MRI tube late Sunday night, with a follow up appointment with the neurologist scheduled for Monday afternoon. This time, John joined him and Katherine for the meeting. I stayed home and cowered. Everyone was dry mouthed with dread, as prepared for the worst news as we could be, but obviously hoping for some miraculous announcement: that it was a mistake, that there was a glitch on the original MRI, or that the lesion had simply disappeared.
And that’s what happened.
Ronan was given a clean bill of health. No lesion, no tumour, no swelling, no nothing. The whole episode is under investigation, and those three aforementioned possibilities are being considered, but the bottom line is that he is, to the best of anyone’s knowledge, completely fine. We are of course dazed with relief, but somewhat lacking in gratitude, or at least I am. This should not have happened. A healthy 25 year old man should not have to spend a month contemplating his mortality, and nor should his family. We did not need a reminder that existence is precious, time is fleeting, and love, while vital, does not conquer all.
Life is slowly returning to normal. We are sleeping through the night, mostly. We have informed, reassured and thanked all our friends and family for standing by. Ronan is still short of breath and occasionally lightheaded, but that’s not terribly surprising. He is, after all, recovering from shock. I have occasional flashes of fear: what exactly happened? What if there was a lesion and it comes back? What if the second MRI is the wrong one? And if the first MRI belongs to someone else, who and where are they, and are they OK? Probably not. That last concern is the hospital’s, but still, you wonder. There is no real reason why that could not have been us.
And now I must go to church and read to the blind.
It seems a bit odd at this point to turn your attention to our podcast episode with Johanna Schneller, but it isn’t really. Johanna is a preeminent arts journalist, scriptwriter and all round great gossip. Who better to talk to the week before the Academy Awards? But more to this point, Johanna and her husband Ian Brown are parents to a beloved son who was born with a rare and serious genetic disorder. As luck would have it, we talked to Johanna just moments after I heard about Ronan’s first MRI, so you may hear me barely containing myself when she talks about Walker. Come for the tea, stay for the pathos. Either way, it’s a good episode.
So glad to hear your beloved son is ok. What a scare! How many others were also given erroneous MRI results that day or another day? Perhaps a Followup MRI within a 6 month window would be in order? I’m a big proponent of a second opinion.
BTW, back at church are ya? How about those wanton ways thingy?😂
What a brutal time for you and your family ! So happy this story ends well. I too had a similar experience with almost completely blocked carotid arteries, that were clearly visible on the scan, (and to all the doctors who saw it !) To suddenly without explanation, it is now gone. Further scans reveal they are no longer blocked. (Which apparently is impossible to happen.) It remains a mystery to this day. I know how you feel with the worry and about what test could possibly be so wrong.... however, it is beyond explanation is all I have learned from it. Thank you for sharing this journey with your fans.