Computer Trouble

I am now in the last term of my graduate program and really feeling the stress of looming deadlines. I don’t have the capacity to push myself, there is nothing more to push. My body not only protests, it also revolts! There is no option to push through, work harder, do more, suck it up…
I must be ready to submit my thesis for review by the end of this month, so it all needs to start coming together now! I really got off track with my project this summer when I lost tolerance to the computer that has been safe for me throughout my program. Something went wrong with the machine during the heatwaves and since then, it just runs hot all the time. The heat from the machine off gasses a fume that sets off my reactions. I spent the majority of my summer trying to find alternatives and experimenting with various borrowed laptops, and being sick from experimenting. Seriously. That is how I spent my summer. I finally settled into something that was working for me in the fall term, but that involved working outside in my three season room. Now that it is winter, it is not an option to work out there. Moving inside to work on a computer that makes me sick has been a bit of a nightmare actually. Losing tolerance to computers puts so much of what I CAN do, at risk. I use the computer to communicate, hold video conferences, write papers, write letters, read journal articles and books, attend classes and appointments. It is the tool that has allowed me to continue to be connected to the community, and to make a living. It has been heartbreaking for me to lose tolerance to it and it has made finishing my project very complicated and overwhelming. And now facing deadlines…
Oy!
You just can’t imagine (unless you live with this!)
My partner, who provides a great deal of both tangible and emotional support for me will be away during the month of January due to a family emergency. This means that I will working through this month, getting sick on the computer, and also having to manage our household alone. Luckily, I have amazing people in my life who are willing to help pick up groceries, run errands, do the shovelling, which will make a huge difference for me. I am extremely privileged to have that. Many people with ES/MCS do not have that, or some have had it in the past, but slowly lost their supportive community over the years. I recognize my priviledge in having a partner.
It has been a challenging time and will continue to be a challenging time. I could really use some extra support, boosts of confidence, love, and validation right now because I am not even actually sure I can do this thing that needs to be done.
The last 50 yards are always the hardest, I know – but this feels almost impossible. I am trying to be open to the prospect of failure and convincing myself that failure is a valid option, and so is “good enough”.
I am so ready to be moving forward. This year, I will need to continue to explore computers that I might be able to tolerate, or I will need to just give it up entirely. In some moments I feel relieved at the prospects of living my life without a computer, and other moments I feel horrified. My body really just needs a break from computers and maybe once all of this is done, my body will recover from these exposures and I will be able to continue use the computer as my access tool again in the future. That is my hope.
In the meantime, I need to buckle down and flesh out my chapters, manage my health, and maintain my nutrition. I need to work extra hard to take care of myself and listen carefully to what my body has to tell me. This will pass. My partner will return. I will finish this project and it will be ‘good enough’. I will not have to pay for an addional tuition and all of this will be behind me by spring!
I hope.

End of Coursework Reflection

I am in the home stretch of the coursework of my graduate program and I am having a lot of mixed feelings about it. It has been a long, hard road that has been deeply complicated by ES/MCS. A long strange trip, indeed.

I have one last policy paper to hand in and I am finished. I will still have another year of practicum and of course, my thesis. But I will not need to attend classes and subject myself to exposures that leave me incapacitated for days. There was a 9 month stretch last year, where I didn't have any in-person classes at all and my health improved tremendously. I have a great deal of hope about getting back to that place.

School was a good alternative to working, because I simply wasn't able to continue at my job after I acquired ES/MCS. It was impossible. Even with the various accommodations that I negotiated at work, it wasn't possible for me to continue to be employed. School allowed for flexibility in my schedule that made it possible for me to heal and recover. I was able to utilize telecommunications and Skype to attend lectures when I was unable to function. Once I was able to get a diagnosis (a year into my program) my accommodations increased tremendously, for example, air purifiers to my specifications were purchased for use in my classrooms. Diagnosis also made it possible to access a treatment protocol and I had a better sense of what was happening with my health. Eighteen months is a long time to be really really sick and have no idea why it is happening or how to get it under control.

In retrospect, being in grad school was the best option for me through my illness. The stakes are just not that high in grad school. Worst case scenario, you get a bad mark or have to rewrite a paper. In all of the jobs that I have ever had, the stakes have always been very high. I was employed in the field of social work for 12 years before going back to school. I was doing direct service/front line work and that is simply not an option for me anymore. Returning to school offered me the opportunity to develop new skills, update my theoretical knowledge base, and have a recovery-based educational sabbatical. I was not only exhausted and burnt out from my years of front line work, I was also profoundly sick and disabled by the neuro-immune symptoms of ES/MCS. My life, seemingly overnight, became very very small.

There has been a great deal of uncertainty for me in recent years as I move through my recovery. I am used to dreaming really big and working really hard and making things happen. I am used to being able to make a good salary and feeling independent. Managing expectations has been an important part of recovery for me, because the reality is that I am not the person that I was and my life has been altered in massive and significant ways. Finishing school and moving into the next stage of my life feels very uncertain for me, but I am better positioned with a fresh Masters of Social Work degree than I was with a 12 year old Honours degree in Psychology and Religion.

I am going to miss the classroom and the insights that I have gained. I am going to miss the conversations and social aspects of being with others who share my perspective. I am going to miss the Professors who inspired me and believed in me and encouraged me to stick with it when everything inside of me was begging me to just stay in bed and fade away. This illness has been very isolating for me. It has been a struggle to keep up with my readings and writing my papers when my brain function comes and goes like the wind and I have to spend days on end in the dark.

It is sort of a miracle that I made it through the coursework at all! Oy! I don't want to jinx myself - I do have one policy paper left and 200 hours of practicum AND MY THESIS left to do. I guess I shouldn't be too quick to attribute my success to a 'miracle'. 

What is left for me to complete can all be completed from home, with the exception of some focus groups that I will be holding as part of my thesis research. I will not have to attend campus with any regularity and that is a huge relief for me. It will make it a lot easier to manage my life and my health. When I have a term with a class, I can't do anything outside of going to class. This results in four months of being homebound, having very minimal visitors, spending many days and nights incapacitated, and struggling to complete my readings, do my research and write my papers. 

Nothing about going to the school has been easy. I had to negotiate a disability identity in order to access the accommodations that I required. This was a very confusing experience for me and I didn't always feel comfortable identifying as disabled, and yet, if I didn't I couldn't get the accessible learning and accommodations that I required in order to continue with my studies. In hindsight, I can say that perhaps grad school was also the best place to be negotiating a disability identity. I have had to negotiate many marginalized identities throughout my life and adding one more to the long list has not been easy. Social justice, critical and disability justice, transformative and environmental justice frameworks have really empowered me and provided me with theoretical tools to make sense of my experiences. School has been a relatively 'safe' place for me develop knowledge, practice skills, and expertise, while I recover from ES/MCS. 

I have worked long enough in my life to know that grad school is not anything like the 'real world'. Not in any way. I recognize the privileged position of being a student and a researcher within an academic institution. As I move closer to the end of my program, my uncertainty about the future becomes increasingly salient. It took me five terms to figure out how to use my privilege as a student and how to be successful as a student and now it is all coming to an end. Out in the 'real world' my marginalized identities will be much harder to negotiate. I know this very well. I have no illusions about higher education.

Did I mention I was having mixed feelings?

Life as a student has become a sort of manageable way to live. I have a lot of access and equity support, and accommodations. I have been able to do research that interests me and is relevant to my life and my communities. I have been able to establish myself as an expert among academics and educate others about ES/MCS. School has helped me feel validated in my identities, even my marginalized ones.

I have to be perfectly honest and say that I have no idea what comes next. But I do know that it will not involve working inside of an hermetically sealed building with poor air quality and circulation. 

And that is a reason to smile :)

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

Canary Rarely in the Classroom

Do you find it strange that this blog is called “Canary in the Classroom”, but I rarely ever actually write about school? My experiences as a student as my experiences as a person with a newly acquired invisible disability go hand in hand. I first got sick in May 2013 and I started my program in September 2014. After 7 weeks of being in the classroom, I became extremely ill and ended up entirely bedridden for two months. I finished my first term remotely, including all of my presentations and group work. Following that first term, I was quite ready to drop out of the program. I was discouraged and I was so sick I could barely move. Attending full time classes at my school was an impossible feat.  I was vomiting in the bathroom on a regular basis.  I was nauseous, dizzy, uneasy on my feet and too foggy to even speak in class. Staff, faculty and even visitors were wearing fragranced products. My classes were full of students covered in fragranced personal care products, the dry erase markers, the burning sage from smudging ceremonies in the Aboriginal Faculty, the cleaning products, hand sanitizers, scented garbage bags, poor ventilation in areas with computers and printers, freshly printed materials in every class and everyone’s brand new books, highlighter markers...etc.  It was just impossible. I wasn’t getting anything out of my classes because I was literally a fog-brained-zombie sitting in classrooms filled with “chemical soup”, unable to speak, process or think. I was spending almost all of my good mental energy sending emails and trying obtain support of some kind. I couldn’t go near my books, let alone bring them into my home or READ them.  I was fading fast.  It is not a wonder that after two months I collapsed into a health crisis. At that point, I didn’t have an accommodation plan beyond the posters that were put up and the emails that were sent around by the Diversity and Equity Office. 

By the end of that first term, I was ready to drop out and had convinced myself that there was really no way that I could be successful in the program. I had one professor who really took my concerns to heart and responded with a great deal of compassion and took great effort to understand my concerns and also communicated my concerns to other faculty and students. At the end of that first term, he called me to discuss my experiences in the faculty. I was in tears as I expressed all that I had gone through that term and how sick I was. He knew that it was my intention to do a thesis on the subject of ES/MCS and he suggested that the part time program might be more manageable for me and he agreed to supervise my thesis if I chose to continue on in the program.   

Every part of this illness has been one big painful loss after another big painful loss.  This illness has taken most everything in my life that I cared about and in those early months I did a lot of grieving about it. It didn’t help that my doctor told me I was mentally ill. Nor did it help that I was generally met with disbelief and my experiences were almost constantly delegitimized. Switching to the part time program signified that my career goals were radically shifting and that I had to reconsider everything about my education goals and about what sort of work I would be able to do in the future. ES/MCS has literally controlled and determined everything about my life and experience since I acquired it and it is painful to have to succumb to it.  It is like having your free will taken from you and suddenly, you can’t just do what you want to do anymore.  Ultimately, I did choose to switch to the part time program and I also switched my academic focus from clinical to community, planning, policy and organizations (CPPO). It had become clear to me that I was unlikely to ever be able to work directly with individuals and families in a clinical setting. I also chose to do a thesis, which was not a mandatory part of my program, in fact, very few MSW students do a thesis.  I chose to do a thesis for a few reasons, first and foremost I will be honest and say that a thesis exempted me from four classes and frankly, the less time I am in those classrooms, the less time I am going to be incapacitated, which is my number one priority. Secondly, I had spent a lot of time researching and learning about ES/MCS since I’d become ill in May 2013 and it just made sense for me to continue to do what I was already doing. Also, it was becoming clear that I needed to use my time in school very carefully and try to establish some sort of niche or speciality for myself in social work. As a social work student, I have been encouraged to practice a great deal of reflexivity and to consider how my social location and positionality intersects with my experience as a social worker. ES/MCS and the experience of being discredited, devalued - othered - has dominated every aspect of my life since May 2013. Finally, it is glaringly obvious to me that there is a massive knowledge gap in the literature about the lived experiences and marginalization of people living with ES/MCS. It is profound to me how little people know about it, including professionals working in the field of disability and accessibility. I feel like I have had the burden of having to educate everyone around me about ES/MCS and about how to best support and accommodate me. It has been an exhausting process and journey, especially considering I didn’t even really know exactly what was happening to me until my very recent diagnosis in October. Completing a thesis provides me the opportunity to focus my attention on ES/MCS and to hopefully make a difference in the lives of people with ES/MCS in some small way by adding to the literature and improving conditions in my school. I didn’t choose this thesis, it chose me and we are still working out the details. I only hope I can be well enough to get it all done in time.

I haven’t been writing much about my experiences in the classroom because I am either too sick (going to class) or I am just too busy (trying to keep up).  I haven’t actually been in the classroom since last spring! Yes, it has been almost a year, but I have kept a journal where I have written down my various experiences when I was in the classroom. I am going to try to write more about my experiences, both good and bad in the classroom in the coming months.