There is a young woman who lives in my current city who has had over 140 shunt-related surgeries since birth, and she’s 20 years old now. She doesn’t have the same condition as me – no one does. But I was lucky enough to meet her and her mom at the hydrocephalus conference last year and I’ve been following her progress. Within the last week she took a turn for the worse according to the updates her mom posts for everyone; this patient is allergic to nearly all antibiotics that have been created, and she’s developed an infection.

It’s especially dangerous because our shunts provide a direct path for bacteria to travel to our brains. Our shared challenge is that neither of us can get a shunt that is coated in antibiotics because we’re so allergic to a wide spectrum of them that it could kill us.

Doctors in this city had suggested that the patient could get a treatment that would somehow desensitize her to this wide spectrum of antibiotics in a city that is about an hour and a half from where we live. Her mom made the appointment and asked lots of questions, and she was told that it would take about six hours in the clinic, and her daughter would be cured. She started to have some nagging doubts despite being referred with confidence by her daughter’s trusted neurosurgeon. Doctors across the country were too scared to do this in a hospital ICU, but this doctor in a city of 65,000 could do it in 6 hours in a clinic? Her mom consulted with doctors in Boston as well as Johns Hopkins and cancelled the appointment. Everyone was of the opinion that her daughter would simply die at the clinic. She already can’t get another surgery unless she’s near death and unresponsive because her scalp is the consistency of tissue paper from all of the surgeries she’s had.

But now what? Cancelling the appointment may have saved her life, but no one really has a good idea for the next step.

I get that question all of the time: What’s next? If. I. Only. Fucking. Knew.

First: Everyone asks me what I have. I’m pretty sure I figured it out, and the doctors that I have most recently presented the theory to have agreed that it’s a solid theory, but there’s no real way to confirm it (though my Phoenix neurosurgeon suggested exploratory brain surgery in 2013 when he discovered my toughened membranes in my brain – no joke). So I still have to say that the doctors don’t really know (but I’m never wrong).

Second: After I say that the doctors can’t be sure, the response I get is, “Yeah, but what is it called?” So………………I don’t know is called “I don’t know.”

Third: The next question is always, “Is this going to kill you?” Now, I’m going to be Captain Obvious here. If no one has ever seen this before, and we don’t know what it’s called, then how could I possibly know if it’s going to kill me? My educated guess is that if my scar tissue continues to grow and take over my brain, I’m fucked. The tissue around the shunt and scar tissue that is turning gelatinous isn’t going to reverse; it will always stay that way.

What would you do if you were the 20-year-old patient and allergic to all but one of the antibiotics available in the U.S., and you had a systemic infection, and you knew that if you took another round, you could lose your ability to take any antibiotics for the rest of your life? And if the infection reached your shunt, you knew it could go straight to your brain and kill you?

What would you do if you had a mystery disease that paralyzed your face, made you walk and talk funny, and stumped over 60 doctors and it took away your life and livelihood? And what would you do if you had almost all of the doctors refuse to take you on as a patient because they don’t understand what is happening or they see no point in trying to help?