The Two Kinds of Decay

Statistics

Approximately 80 percent of Guillain-Barré syndrome patients have a complete recovery, and about 10 percent recover with severe disability, though the death rate among patients is still about 2 to 3 percent even in the best intensive care units.

It’s hard to project these data onto my disease, CIDP. My disease is similar to but not the same as having Guillain-Barré syndrome over and over again, with no time to recover between bouts.

Some believe the clinical difference between Guillain-Barré syndrome and CIDP is subjective — that my disease was CIDP because I was sick for years instead of just a few weeks. Sometimes I think I might just have had a particularly bad case of Guillain-Barré syndrome.

Of course I’d rather have the common disease that people know how to treat, but there were times that I cherished my rare disease for its irrefutable proof of my specialness.

For its proof that my death, the end of the disease, whenever and in whatever form it came, was going to be remarkable.