I lie back on the hard uncomfortable examining bed. I stare at 2 small vials containing nusinersen, an experimental drug, that will be injected into my spinal fluid. One is for me. The other is a backup in the event that something happens to the first vial.
My physician and a storm of various other specialists bustle about. One asks, “Can I draw your blood?” Another says, “I’m going to check your heart, is that okay?” The clinical trial coordinator hands me a consent form. The rituals of consent seem both comforting and silly, considering I’m already lying on the examining table.