Feeling a Little Angry These Days

I have been managing a lot of feelings lately. I feel so angry that social service systems ignore our basic needs like the access to basic income and safe housing. And that our accommodation requirements are somehow seen as optional and even whiny. That our need for safe materials in housing is portrayed and characterized as some sort of bourgeois attitude when in reality we are just trying to survive. We must have non-toxic environments just to stay alive. Safe housing is right up there with life's basics like air, water, and food for people with ES/MCS.

We actually aren't just trying to impress you with our knowledge of chemicals and which building materials and consumer products are non-toxic. We are not trying to sound entitled or classist. We aren't trying to sell you anything. We know this stuff as a matter of SURVIVAL. We are people who are sick and have been forced to very quickly learn to stay alive in an environment that is literally draining the life from our bodies. I realize that the 'green movement' is very classist and inaccessible to the vast majority of people and that non-toxic consumer products are viewed as 'specialty items' or somehow 'luxurious'. Only the rich and entitled should have access to such items. And here we are sick, disabled, and dispossessed, making demands for access to such items! Who do we think we are!? Why are we so special that we believe we have the right to demand expensive non-toxic materials?

The bigger issue is - WHY ARE THERE SO MANY TOXIC PRODUCTS and ingredients in consumer products and building materials?! This shit is making us sick and some of us are getting sick at a faster rate. We are living in deeply contaminated built environments and ecosystems, including our food systems.

I am so enraged that the very social service agencies that should be protecting marginalized folks are actually actively oppressing people with ES/MCS by denying necessary services and access to basic income and safe housing. And these are the sorts of social service agencies where Social Workers are employed. It is very challenging for me, both as a Social Worker and a person who is disabled by ES/MCS to not BE VERY ANGRY.

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 :)

2nd Year ES/MCS Anniversary Update

It was May 1, 2013 that I became TILTED and experienced the health crisis that I am still recovering from. That first year was marked by body rebellion, full chaos and profound uncertainty as I met with several specialists and underwent test after test after test. I was flailing through day to day life in a dazed neurological fog. I negotiated a number of necessary transitions during that first year. My partner and I moved into a house that was safer than our previous apartment and we worked very hard to completely detox our lives. I had to leave my job because the building that made me sick became entirely intolerable to me. It was not an option to continue to work, so I started graduate school. It was a very confusing time and I was very isolated from family and friends. I was not only housebound, but also mostly bedridden and unable to function for many weeks and sometimes months at a time.  I wasn’t sure if I was dying, or what the hell was going on and no one else seemed to know either, including all of the specialists I’d seen. 

 Our current medical system is poorly equipped to deal with multi-system illness, nor is it equipped to deal with the broad spectrum of illnesses that are arising as a result of our increasingly toxic environment. New paradigms are emerging, but change is always slow and we all know that matters related to the environment are not a priority for our current government. And sadly, those of us at the front end of this public health crisis are not going to get what we need from our family doctors and until more research dollars are allocated to environmentally linked illness, we will continue to be delegitimized. The good news is that the province has provided $560,000 to support annual fellowships over three years, which we result in six new fellowships for family medicine graduates. This will allow graduating physicians to take an extra year for training in Environmental Health. This will translate to more health care for folks with environmentally-linked illnesses in Ontario and it shows that the Federal Government is aware of this health issue and is at least starting to take steps to address it. It gives me some hope.

         The second year of my illness has been marked by medical diagnosis, increased knowledge, healing, disability accommodation, and moving towards finding joy in my ‘new normal’. I had 10 solid months in my graduate program where I was working from home on my internship, an online course, and my thesis. This really allowed me the opportunity to have some control over my exposures and keep them to the bare minimum. I met with the Environmental Physician whom I’d waited 18 months to meet and thankfully, I wasn’t disappointed. I was deeply honoured to find that I was meeting with a Physician whose work I was familiar with through my research. He spent five hours with my partner and I and he really shed a lot of light and clarity for us. I made a lot of major lifestyle changes in the last year at the suggestion of my Environmental Physician.

Prior to becoming ill, I was already consuming a mostly (65-75%) organic diet that was comprised of what I thought was a healthy dose of vegetables. My Environmental Physician (EP) suggested that I should be eating 100% organic all the time and that I needed to consume between 9-12 servings of vegetables and fruits everyday. I have multiple nutritional deficits and malabsorption issues and so the idea was to just blast the body with what I have come to call “dense nutrition”. It is a lot of work to eat that many vegetables and fruits and so I have had to work really hard at it. I have spent and continue to spend several hours a week doing food preparation and meal planning in order to meet my “dense nutrition” goals. I finally gave up the only two non-organic foods that I had been clinging to for a long time - potato chips and take out burritos. This was not easy for me to do, because over the course of the last two years food has been very challenging. My partner and I used to really enjoy eating out and it is simply not an option for me anymore due to cleaning products used by restaurants, questionable food ingredients, lack of organic options, poor ventilation, and fragrances worn by other patrons and staff. We continued to eat ‘take away’ food on occasion, but I have given that up too. It just isn’t worth the damage it does to my guts. What I miss about eating out was more about the social aspects, than the actual food. The food we eat at home is superior in quality because we know exactly where it comes from and it is impossible to eat out when you have food restrictions.

           I was living with IBS for many years prior to becoming TILTED, but when I got sick it spiralled out of control. I was just a ball of inflammation and almost everything I ate made me sick. I have been struggling with chronic, widespread inflammation as part of my illness. I developed a number of food sensitivities and went through a major elimination protocol and had to give up a wide variety of foods for a really long time. This year, I learned a lot about how my IBS is connected to my ES/MCS from my EP. He introduced me to FODMAPs nutrition protocol and this has literally transformed my gut health over the last 9 months. In fact, I have been able to start eating a wider range of foods and returned many previously not-tolerated foods back into my diet, which has been glorious. It has been a long long road to gut health, but I have truly accomplished a great thing and am very pleased with that aspect of my healing. Even though at times it has felt very restricting to go through this healing process with my guts, in the end it has been worth it. The reduced inflammation in my guts has decreased my reaction times and ES/MCS symptoms and has increased my overall enjoyment and relationship with my food. YES!

Cardiovascular exercise has become a huge part of my recovery over the last nine months and was also recommended by my EP. I can still remember how angry I was with him when he suggested that I exercise, especially in light of the fact that I had been bedridden for months at a time. But I was and am very committed to my recovery and his reasoning made sense. Many doctors prescribe oxygen therapy for folks with ES/MCS. My EP was open to prescribing oxygen to me, but he wanted me to try cardiovascular exercise first because it does have the same impact, which is forcing more oxygen into the bloodstream and cells. I started off slowly and worked my way up to 20 minutes/day of cardio, five days a week. Over the last 9 months, I have added a lot of core and strength training to my workouts. This has strengthened my heart, given me more energy, improved mitochondrial function and just made me physically stronger overall after spending the better part that first year in bed. I am simply not as active as I used to be because I don’t go places. I have to make a daily effort to move my body, work my heart and practice healing visualizations.

It took many months, but I have finally triggered my sweat response and I sweat on a regular basis now. This is a major breakthrough in my recovery because sweating is one of the important ways that the body removes toxins from the body. I didn’t realize how problematic it was that I did not sweat, because throughout my life I thought I was just lucky! Most folks with ES/MCS have poor detoxification systems and have to work hard to assist the body in that process. Many folks use sauna treatments for detoxification, but this was not an option for me because they are often made of cedar and are in places where there are pools that use chlorine, both of which I am unable to tolerate.

Meditation practice has been an important part of my recovery over the last year, although, in truth, I was only practicing 20 minutes a day regularly for a total of three months. I found that I really struggled with this practice because it was hard on my knees to sit for extended periods of time and I was also experiencing barriers related to practicing alone. I felt really isolated in this practice, didn’t have anyone to talk to about challenges that I was facing and it was also triggering other issues for me. After three months of solid practice, I gave it up and started cross stitching, which essentially gave me the same benefits of calming my upregulated nervous system.

I started a new treatment protocol under the care of my EP, including a wide array of amino acids to address my mitochondrial dysfunction, as well as a number of vitamins and other supplements which have been having a positive impact on my health as well. My partner and I purchased a good quality all metal design air purifier for our home, which has been so life-altering.

Obtaining a formal diagnosis has lead to increased disability accommodation at my school, which has made attending classes much more tolerable. At my request and support of my doctor, the Accessible Learning Center purchased two air purifiers for my classrooms and this has made a huge difference for me in the classroom. They also purchased non-toxic dry erase markers for my classrooms, which has has been massively helpful as well. I also have printing accommodations and am able to receive library books in alternative format. Accommodations continue to be a work in progress and it is certainly not perfect, but the Accessible Learning Center and the Diversity and Equity Office have made my graduate school experience possible. We have come a long way together since first term, when I had a major health collapse after attending classes for six weeks.

In all, my health has improved tremendously in the last year, however, I have really had to re-define ‘health’. Despite the fact that I feel I am 70-80% improved over last year, I am still mostly housebound. I am bedridden and unable to move at least 4-9 days out of the month with extreme musculoskeletal pain, neurological fogginess, and crushing migraines. I am still unable to travel, access public spaces and walk safely in my neighbourhood. This year I have come to discover that this may just as good as it gets and am learning to accept that maybe this is my new normal. I have had moments of frustration because I have worked so hard to get well and have followed every single recommendation, protocol and prescription of my EP. I have been fully dedicated to my health and wellness and have literally done everything within my power to recover. It is my full time job. I literally spend HOURS and HOURS of my week engaged in all of this healing activity and sometimes I just feel discouraged, like I should be healed by now! I keep expecting that ES/MCS is just going to go away and become a distant memory of a bad time in my past, but that is just not happening.

Which brings me to the present day.

As I look toward this coming year, I really want to start focusing on finding empowerment with what is, instead of continually hoping this is going to go away. I need to accept that this is my new normal and that while I can experience varying degrees of health, my life is just not going to be what it was. Two years later, I am still mourning the loss of my life and my lifestyle and I just don’t want to live with the burden of those losses for the rest of my life. There are so many people out there with this illness who are wayyyy sicker that I am, take for example Amelia Hill in Australia. Her story is just heartbreaking and yet, she manages to be so positive and inspiring. 

In September, I will be completing an internship with the Diversity and Equity Office and will be developing educational resources on ES/MCS for the University as part of that placement. I will continue to collect and analyze data for my thesis and continue to build my professional identity as a social worker living with ES/MCS. I hope to have more opportunities to engage my school community around access barriers related to indoor air quality and synthetic chemicals. I hope to find my voice and confidence in my experience instead of wishing it away all the time. All along, I have just wanted it to go away and to not be something that I had to think about, or talk about in my life. I have been embarrassed by it. Most of the healing activities that I take part it are motivated by my wish to make it go away because I do not want to have this illness. I do not want to talk about it. I do not want to explain it. I do not want to have to educate anyone about my experience. I don’t want my experience. But if there is anything that I have learned this year, it is that I can’t blast it away with nutrition or exercise or meditation or supplements, or yoga etc... These are all activities that will promote and support my health, but will not take away my chemical injury. I would like to come to a place where not everything is about making it go away, but rather learning to live well with it and to live a fully authentic life as I am, not how I wish I could be and not how I was.
Letting go.

~*~*~*~*~*

Links: 

http://drclaudiamiller.com/about-tilt/

http://news.ontario.ca/mohltc/en/2014/04/building-expertise-in-environmental-health.html

http://johnmolot.com/wp-content/uploads/2014/11/John-Molot-CV-2014.pdf

http://www.cdhf.ca/bank/document_en/32-fodmaps.pdf

http://www.foustco.com/airpurifiers.html

http://www.ecosmartworld.com/non-toxic/

http://m.adelaidenow.com.au/news/south-australia/amelia-hill-is-a-prisoner-in-her-bedroom-allergic-to-the-modern-world/story-fnpp66pk-1227346910484

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