I developed sudden onset post infectious headache after having viral meningitis. The headaches were so bad that I could not function for years. Instead of graduating high school early with several years of college credits and even the opportunity to do prime research in the area of developmental biology and bacterial enterocolitis, I was bedridden for days that flowed into weeks and years.
I was treated with increasing doses of triptans and tricyclics with disabling side effects on their own. Several neurologists told me that all headaches are migraines so the treatment should work, and if it doesn’t, it is all in my head (which it is in a sense). I finally came across a neurologist who had a little more knowledge of autoimmune sterile headaches and was willing to change course allowing me some recovery on steroids, and newer approved biologics. While there are European approved biologics that cross the blood-brain barrier, the use would be off-label in the US, and I cannot afford it, so I am only partially treated.
I finally looked at resuming my dreams of continuing my education. I applied to a university that offered a great diversity of courses and research. When school started I was still not well enough and had to defer for a year. The first year provided to be a test of the ADA. My headaches are made worse by the same triggers as my asthma; pollution, poor health, and disturbed sleep. Everywhere I went on campus, the dorm, lecture halls, and administration buildings, I encountered someone smoking, using incense, or fragrances. I was exposed to significant VOCs such as fresh paint, pulling diesel exhaust fumes into the building, mold, etc. I had a roommate that even opened the windows during the fires to air out the medical marijuana he was using, which housing told me was his right.
Nowhere was safe, except the library, but how would I get to it? Where would I sleep, get food, get instruction? At the time, they did not allow remote attendance. I was so ill with life-threatening asthma, and in so much pain from severe headaches, I could not complete that semester. The next semester, COVID happened – Yeah – There is a silver lining in the dark cloud of this terrible pandemic – I could attend remotely.
My home is unfortunately in one of the top 10 worst air quality cities in the country. Soot from fires, seasonal allergies, dust, and record heatwaves caused a concentrated attack on my wellbeing. No amount of HEPA filtration could keep the pollution out. Houses are meant to breathe. My medication was changed to trial a new type, which was less effective. I had not gone back onto the high dose steroid regimen again, and my headaches and asthma again took over my life.
Will I be able to attend remotely for most of my courses? Will I be able to get a quick response when the air quality in the facility I need to be in is causing me to be sick? Will I be able to have flexible scheduling and perhaps complete my work independently? I hope so. I am looking at other universities’ student accommodations, and I am hoping my university will adopt some of them. Other universities and public institutions have great policies on fragrance, controlling smoking, allergens, and VOCs. I contacted some of the other institutions on how they implemented their clean air practices and shared the information with the university. The university has much better workplace accommodations for the same disabilities than it has student accommodations, so it is a start.
I am hoping to see more education and mitigation of poor air quality and the health effect on post-secondary education, housing, and the workplace in general. For now, I remain the veritable canary advocating for better practices while trying to get a recognized degree from a great institution.