How it All Began

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I am standing in the emergency room. The doctor who just conducted my ultrasound has left. He was young and pretty unsure of himself. I’m rarely with doctors, but my brother is one. This one seemed overly nervous; I mean more so than for a checkup. I am here for back pain. My lower back started bothering me a few days ago. Nothing too intense, but my regular doctor was on vacation and his stand-in pressed around on my stomach uncomfortably enough that I cried; then promptly sent me to the emergency room.

For some reason I think of my grandfather. When I was a child and complained of back issues after sitting on cold brick walls in the summer, he would always say “It’s because your shirts are too short.”

I subconsciously pull my sweater down lower over my pants. It’s December and it’s chilly. I still smile though. The memory of my grandfather always makes me smile. He had this crooked smile. One side of his mouth reached up, the other remained low, with a slight smirk. One eye would almost wink at you when he did this. We share this smile.

I’m pulled out of my thoughts by the young doctor coming back in with a female doctor who seems somewhat more experienced. We repeat the procedure of the ultrasound. She seems just as shocked and stumped. They asked to be excused again. I wait.

The next time doctors enter the room there are 5 of them. More pile in as time passes. The room is tiny, like any run-of-the-mill check-up room in the emergency section of a hospital. The stretcher I am on is located dead center. I keep awkwardly looking at my hand where they’ve placed venous access to draw blood or give medication at a moment’s notice. Finally, a woman with the air of being in charge walks in. It takes her all of 2 seconds to read my ultrasound. She begins by telling me her name, which I have long forgotten. The next words that come out of her mouth are: “Don’t panic. But …“

Even though these words should cause the exact opposite, I remain calm. Oddly calm. The calm before the storm, I suppose. That moment of quiet when you know your life is about to change. It’s eerie. You can feel it crawling over and under your skin. You hope your intuition is wrong. But your nervous system has been reading the doctors’ behavior since they entered the room. Your neocortex isn’t quite there, yet but your body just knows

“We’re seeing tumors all over both your kidneys. Lots of them. Tumor does not necessarily mean cancer. They could be benign. One of them is 11cm large. We need to operate and take an MRI as quickly as possible ….”

I have no idea what else she said to me that day. It ends in a fog.


A little more than five and a half years later I have another one of those moments.

I have tuberous sclerosis complex. Never heard of it before? No wonder. The prevalence of the disease is estimated to be 7 to 12 in 100,000 says Wikipedia. With a population of 7 billion that makes about 490,000 to 840,000 people worldwide. That’s between 0,00007% and 0,00012%. Yup. What are the odds, right? It’s genetic. No one in my family has it. I’m a so-called mosaic case. Again, what are the odds?! It doesn’t matter. The statistic is meaningless to the individual. I have it. I have it.

I have tumors on my kidneys and skin, in my eyes, cysts on my lungs and in my brain. My heart seems ok apart from a mild arrythmia. Oh, and the newest members on my list of symptoms are aneurisms on my arteries. 

Between that fateful day in the emergency room and today so much has happened. It’s a long story. One that I’m willing and able to tell. If you’d like to come along for the ride, while I share the past 6 years of my life, you are more than welcome.

To skip ahead directly to what is happening in my life right now, check out this post.

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