Hairspray & the Threat of Physical Harm

(Note: I am emotional and am working with limited brain capacity)

Second week of classes left me incapacitated for 36 hours. Twenty-seven of those hours were spent immobilized with a crushing migraine and unable to do anything. I had to have a friend come over and feed me because my partner is currently overseas. Overall, my recovery time was less than last week, but the migraine intensity was much worse. This week there was someone sitting close to me that was wearing so much hairspray, it created a toxic cloud of pollution in the classroom. I think hairspray might be the worst of all the mainstream personal-care chemical offenders because is it formulated to stick to everything in its range. I always get crushing migraines following exposures and the inside of my sinus membranes burn for hours, even after rinsing. It is torturous.

From: http://www.encino411.com/index.php/resource/page/are-hairspray-and-nail-polish-toxic

I could have asked the person wearing the hairspray to move and sit somewhere else. I could have said that I have an ‘allergy’ to their hairspray. People seem to understand the concept of ‘allergy’ more than they understand toxic encephalopathy. But I did nothing. I didn’t even put my mask on. I sat with my face in the stream of air blowing out of the air purifier and covered my face as much as possible and tried to mentally convince myself that everything was ok.

It is not ok.

 So far over the last two weeks, I have spent 5 days bedridden and incapacitated from attending school. This is greatly interfering with my mental capacity and ability to work on my thesis research. I am currently averaging a two day recovery period. This week, when my migraine came on I wept and questioned whether or not it was worth it at all. Is this degree really worth the illness that I am suffering?

It is critical for me to be able to speak up about my needs on a moment to moment basis within the classroom, but it doesn’t feel safe. Both this week and last week, there were opportunities for me (or others) to speak up, but we didn’t – I didn’t. It has been established that my school is meant to be a scent-free building. It has been established that my classroom is specifically required to be scent-free as part of a disability accommodation and yet, people continue to enter into these spaces using and wearing scented/fragranced products that cause injury to me and others.

It is an insidious and silent form of oppression that creates inequities in the classroom and other public spaces. The habits and norms of personal grooming goes largely unquestioned by our beauty-obsessed society. It is a topic that feels personal and uncomfortable, but it is important to address because the use of many scented/fragranced products create restrictive forces and barriers that immobilize and marginalize groups of people. My life has already been greatly diminished by having a disability. Oppressive and invisible forces within institutions further diminish my opportunities to follow my life plan.

I want to be able to show up in the classroom and learn alongside my colleagues without the threat of physical illness. I feel afraid to speak up because I do not want to offend others or make them feel uncomfortable about their personal care product use. I want to be able to count on my allies to speak up on my behalf, but my allies are few and far between and I am learning (from my research) that they, like me, do not know what to say or how to respond to this form of oppression.

I must find my voice in all of this. And I must be able to call out people who are making safe spaces – unsafe, even if it means that I might not be well-liked. I just want to be able to move through this life and be free from threat of physical harm. This illness has deeply ‘othered’ me and marginalized me from my communities, my friends, my colleagues and barred me from indoor public space. By going to school, I am actively putting myself into a situation where I am being physically injured. It is a very vulnerable position to be in when people hold so much power over my health. 

I realize that it is my choice to go to school. I just don’t want to go through all of this and have no one even notice that I was there or the extent of the illness that I suffered as a result of having been there. I don’t look sick. I don’t look disabled. And no one sees or knows that I spend days bedridden with crippling pain when I leave the school.

Silence is no longer an option.

First Day of the Spring Term

I survived my first day back in class, but barely. I was bedridden for a full two and a half days with migraine, severe musculoskeletal pain, neurological stupor (brain fog), widespread inflammation, and tinnitus. My whole body felt like it was on fire for days and I was not particularly functional on the third day. Le sigh. Unfortunately, I was already ill by the time I arrived at school because there is so much construction in the downtown core. I had to pass by three major construction sites just to get to school. Apparently, my mask is not enough for the pollution of my city during construction season. I have been putting off buying a vapour mask for the last two years, but I think that the time has finally come.

The building was clearly recently cleaned because the hallways smelled like cleaning products, but there had been no smudging ceremonies in the building that morning. The two EL Foust air purifiers that the school purchased were running in the classroom by the time I arrived, which was great to see. The school had also purchased the markers that I suggested. No one seemed to be overly scented in the classroom – just the standard laundry soap and deodorant concoction.

I haven’t been in a classroom since last Spring at this time. During the Fall term, I was completing a practicum from home and during the Winter term, I was completing an online course. I am taking a mandatory data analysis class and I have to attend in person as a large portion of the class is a computer lab. I have been planning for this course for months and trying to figure out the best accommodations. I have mild Electromagnetic Field (EMF) sensitivity and am also extremely sensitive to the pollution put out by electronics and other appliances. Many ES/MCS folks are also extremely EMF hyper-sensitive and cannot be near wifi or computers or cell phones at all. I do not want to develop that!

Spring classes are FOUR HOURS LONG and very intensive. After about 2 hours, laptops were passed out to everyone and I really started to fade and caught myself staring out the window. My brain function was low and my heart was palpitating. Computers are most problematic for me when they run hot, but the ones in the classroom seemed to be relatively ok. I was struggling to follow what the instructor was saying, but I am familiar with the software program (SPSS) so I didn’t feel too lost. Despite the fact that I was fading, I really wanted/needed to stay in the class to see how things would go since this is a mandatory class and all assignments have to be completed during class time.

I have the option to work in my Advisor’s office and Skype into class, but the instructor has made it very clear that is not the best option. Obviously, being in class is the best option and I really needed to get a sense of how it would go and what recovery would look like in order to determine whether or not it is feasible for me at all. At the 3.5 hour point, someone came into the classroom to administer a survey to the class (to create a data set for our class to analyze) and the person was fully cologned. Like FULLY.  Like as if the person was heading out to a dance club or on a date, rather than to a classroom. This took me over the edge.  Other people noticed this too and some of my classmates emailed me about it. We don’t know how to call people out when they enter spaces that are meant to be safe for the chemically sensitive. The preliminary results of my thesis research also confirm this!

I am really healthy right now because I haven’t been having regular exposures for almost a year and I have been actively engaged in both treatment and recovery protocols. The reality is that when I leave my house, I end up sick most of the time. For me it comes down to HOW sick I am going to be and how LONG it will last.  Four hour classes during the Spring intersession are so intense, but the upside is that the course is only 9 weeks! The other upside is that smudging doesn’t happen regularly in the Spring term and there are fewer visitors in the building in general. Additionally, because all the assignments have to be completed in the classroom, I won’t have to use my brain when I am not in class, so I have more space for recovery. The downside of completing assignments in the classroom is that if I don’t have brain function in the classroom, how I can complete the assignments successfully?!

I have to engage in risk assessment related to the exposures of daily life. It is hard to determine exactly what made me so sick that first day back. I leave my house at level 0 and things just start to go up from there. The walk to school, the cleaning products in the hallway and bathroom, the student’s scented products, the electronic pollution, the wifi, the cologne and then the walk home...etc. I am unable to pin point exactly what took me down so hard.

           I have to share how happy I felt to be in a classroom! It means so much to me to be able to meet with my colleagues and be present. I feel so distanced from my educational experience and have been very isolated from my peers and all of the peripheral learning that takes place informally in an academic environment.  I just wish that things were different and that going to school didn’t result in me being so ill. I wish that I could be in the classroom and have my full brain function so that I could engage with others in a meaningful way. Instead, I am in a neurological haze and my words don’t match up with my thoughts and brain sort of slips in and out of darkness and fog.

My plan for this week is to come to class at least an hour early, so that I have some time to recover from my walk BEFORE class begins. Ugh. That will mean 5 HOURS in the classroom! It seems that the air purifiers work very well after the other students settle in and the door to the classroom is closed. They are sort of loud and create another level of vibration that is somewhat challenging for me.

              I am extremely privileged to have safe housing where I can recover from exposures and for this I am eternally grateful. There are so many people with ES/MCS who do not have safe housing and therefore cannot recover or get better after exposures. It is a really huge problem within our communities.

Links

EL Foust: http://www.foustco.com/ 

Eco-Smart Markers: http://www.ecosmartworld.com/

CERA - Centre for Equality Rights in Accommodation: http://www.equalityrights.org/cera/?page_id=674