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.

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

Rough Winter & Safe Housing

Many people with ES/MCS do not have access to safehousing and so I recognize that I am extremely privileged to have a home that is mostly safe for me. I also recognize that I am very privileged to have a partner and the resources to be able to secure safe housing. It took a lot of work to make our home safe, but from time to time the house is not a safe place for me. Being a student and managing this illness is very complicated. Even if I don’t leave the house or go anywhere, I still get sick at home. I need to have a lot of flexibility in my schedule and I have to take advantage of brain function when I have it. 

http://www.riddc.org/cross_disability/images/safe-housing.gif

Back in November, there was so much road construction happening in my neighbourhood. Projects were rushed to get completed before the snow started to fly. It seemed as though every street in the city was under construction. I was having exposures from the constantly idling trucks and heavy-duty construction vehicles spewing diesel fumes day after day. My house is well insulated, but it is not impermeable. When it is toxic outside, it is also toxic inside. And when it is toxic, I am unable to do much of anything because all of my body systems descend into chaos on account of the whole 'canary' thing. All I can do is wear my mask and lay in my ‘saferoom’ day in and day out and wait for it to end. Following these sorts of exposures, I usually have about 24-36 hours of normal functioning before I spiral into a migraine that lasts between 24-72 hours.

Later in November, we had a massive amount of snowfall in a short period of time and then it all melted and our basement flooded. What a mess! We (I use ‘we’ lightly here because I actually didn’t do any work) cleaned up and dried out the mess very quickly, but in the process the entire house became contaminated due to circulating the air from the basement throughout the house. All of the towels that were used for cleanup became contaminated and then the washing machine and dryer got contaminated when the towels were washed in them. It was a mess. We were very worried about mould, so we (again, using ‘we’ lightly) tore out all the floors in our finished basement. I was sick for many days and was confined to one room in the house for many weeks and had to take time off from my practicum placement.

There is one room in the house that is sealed off from the heating system and the rest of the house. I call it my ‘safe room’. I keep this room sealed off in the winter because when I am sick I am unable to tolerate our gas furnace. Eventually, we will have to change our furnace, but we simply do not have the money to do this right now.

It has been very cold this winter, which means that the neighbours with woodstoves are supplementing their furnaces by burning wood. The smoke from the woodstoves makes me extremely ill and keeps me from being able to go outside. I have not been able to go for walks as much I did last winter. Also, when it is extremely cold, people idle their cars in theirdriveways for very long periods of time and the harder our furnace works, the more it makes me sick.  Sigh. And the snow blowers, which are more toxic than the cars...etc...

Needless to say, it has been a rough winter.

But there is a silver lining here...

My Environmental Physician wrote me a prescription for an air purifier. We decided it was time to invest in one so that we can better manage the times when the house is not safe. It was a very costly purchase and so we decided to buy it for Christmas. It arrived by post on Christmas Eve and it has just been a lifesaver. I was able to spend time outside of the ‘safe room’ and enjoy visitors during the holidays. What a blessing! I still haven’t been able to be out of the house much this winter, but at least I can be safe inside the house and not be confined to one room.

One Year Anniversary.

May 1, 2014 marks one year since the chemical injury occurred that I am still recovering from.  I have decided to write a blog post summarizing the year, although the details around the chemical injury will remain obscure for personal reasons.  Those early months were just chaos.  I had no clue what was happening to me, all I knew was that my brain wasn’t working clearly - I was dizzy, nauseous, weak and was experiencing memory loss, confusion and fatigue.  I was smelling everything all the time, everywhere that I went, even from across great distances.  It was like a switch got turned on the day of my injury and I couldn’t find the off button for my senses.  For example, I’d previously not noticed the downstairs neighbour’s air fresheners, laundry soap and scented cat litter, but after my injury it was permeating into our upstairs apartment.  I was incapacitated by scented products that previously didn’t bother me.  I could no longer walk or ride my bike to work because laundry exhaust, diesel fumes from vehicles and other sources of air pollution, such as the nearby auto body shop, were incapacitating me before I even got to work.  It was very scary and confusing.  My body was responding like I was being attacked and I was entirely immobilized.  My employer was required to accommodate me and did so by moving me to a scent-free satellite office in a LEED certified building.  I was extremely lucky to have had that as an option because my office had become entirely inaccessible. I had to drive my car with the outside air sealed off and the recirculation vent on and all the windows sealed tight, even on the hottest days of that summer (this method of driving my car has continued to the present day). I just could not get well, no matter what I did or how long I rested.  In addition to my neurological symptoms, I became sensitive to a broad spectrum of foods and suffered with intense digestive problems (IBS).  It was like every system in my body stopped working and it literally took everything I had just to go to work every day and most of those days are a blur.

My partner and I had to move out of our apartment which was located in a light industrial area because our neighbourhood was being demolished to make room for a four lane highway.  In addition to the pollution from demolition and road construction, there was also a gas leak that resulted in mass evacuation and a house next to our house, burnt to the ground. It was just one thing after another and my system was overloaded.  We had to find safe housing in a detached home where we wouldn’t have to contend with other people’s use of toxic products, smoking, air fresheners, laundry, etc.  We were privileged and resourceful enough able to be able to afford to buy a small detached home, but it took a lot to make the house liveable due to the previous owners use of air fresheners and other scented products.  I stayed in a tent in the backyard and at a friend’s house while the house was cleaned and treated. The carpets were torn out and the house was washed from ceiling to floor with boiling vinegar.  We had jars of vinegar and baking soda in all the rooms, as well as zeolites, bamboo charcoal bags and we had three ozone treatment blasts.  The learning curve was very steep.  I used online support groups extensively to get information about how to manage my symptoms and how to make unsafe housing, safe.  It was a very challenging time for myself and my partner and I was sick all through this process.   

I had applied to grad school long before I got sick in May and I had some real concerns about whether or not I was even going to be able to attend school. Before accepting my offer of admission, I met with the disability office to discuss my situation and they were very willing to accommodate me and stated they would make the necessary changes in order to ensure that my access needs were met.  I was happy and relieved to hear that it was going to be possible and so I resigned from my job and accepted my offer of admission.

The accommodations haven’t been super effective and school has been an ongoing struggle.  It has been very personally disappointing for me because I had been wanting to go back to school for a long time. Some of the accommodations include: hanging posters about reducing scents and an email was sent out to all staff, students and faculty. They agreed to hold my classes in carpet free classrooms and advise me in advance of any renovations or maintenance in the building.  I have an individualized plan that allows me to access electronic materials, such as e-books or scanning my books because I am unable to tolerate printed material, especially new books and freshly photocopied documents. My professors have been asked to not use dry-erase or other markers in the classroom.

Unfortunately, it has not been enough to make school safe for me and my first term at school was the sickest I have ever been since acquiring this illness.  I was bedridden and housebound for two months in November and December.  I wrote all my papers and attended my lectures from bed and completed my presentations using Skype.  I was extremely ill and my symptoms were worsening and I developed migraines, severe nausea and musculoskeletal pain in addition to my other neurological symptoms (stammering speech, memory loss, stupor, loss of balance, etc).  I describe this time as the “collapse” because everything literally stopped.

I stopped accessing all public space in October 2013, with the exception of school and an occasional visit to a burrito restaurant which I can access during non-peak hours if there isn’t anyone in there who is too scented (this is my special treat).  I have not been able to visit with my dear friend who is an aromatherapist and part of my chosen family. I have missed out on all the major holiday celebrations with family and friends. I have one friend whose home I have been able to access regularly in the last year.  In the last eight months, I have been into the grocery store with my mask on a handful of times.  I stopped going to yoga, to my chiropractor, to my dentist and to my massage therapist all because of use of products that trigger my health issues.  I have literally dropped out of public life.  For the last several months, I have had two states of being:  bedridden or housebound.  Housebound is the (not-so-obvious) preference. During the winter, I was able to get outside for walks frequently as the air in winter is much more tolerable than the warmer weather.

I have told some of my friends about my illness when it has come up organically.  Having people over means having to request significant accommodations from people.  I am assuming most of my friends just think that I was really busy with the move and then really busy with school and adjusting to life as a graduate student, which is very true, but it is not the only reason.  I guess I kept thinking that this would go away and that I would get better and it would not be an issue that I would have to tell everyone about.  I hoped that the illness would just go away and everything would just be the way that it used to be.  But it never did.

It has been a year now.  A very lonely and very isolated year.  My life has been completely altered in order to eliminate toxins from my home and body and to reduce the exposures in my daily life.  I have struggled to come to grips with living with a chronic illness and for the first time in my life I am dealing with issues of accessibility.  I am also managing my health in a context of medicine which contests the existence of my illness.  I have been on a waiting list since August 2013 for the Environmental Health Clinic and have been told I may be waiting another nine months before I see a Environmental Physician or get a formal diagnosis.  

As May 1st approaches I have been experiencing many different emotions as I reflect on the last year and all of my experiences since becoming ill.  I have come a long way in this process and I am in a much better place than I was even six months ago.  The learning curve has been steep.  I have safe housing, I have been able to heal my gut bacteria and my detoxification pathways are finally working. As a student, I have been able to take the time to research and learn about MCS/EI and access existing research and journal articles. I am able to eat many more foods and have navigated the complicated realm of respirators and masks.  I have learned about what I need from the people around me and how to ask for help and speak up for my needs.  I have a solid protocol for keeping my house safe and I have learned how to make my own personal care products.  My partner and I have figured out our finances, radically altered our lifestyle and I have reduced my course load to part time in order to effectively manage both my health and my education.

I am in a very good place in my life right now and I am beginning to think a lot about recovery.  What would recovery look like for me?  I am learning to accept that my life may never be what it was, working 50+ hours a week in multiple jobs and projects.  My life was quite fast-paced, sometimes chaotic, focusing on pleasing others, making money and never saying no.  I have altered and restructured my entire life this year and I have learned many things as a result of this illness. I am learning to be thankful for my illness and what it has brought to my life. I used to take so many simple things for granted, like going to the library, hugging my friends, visiting the grocery store or going to yoga. I don't take anything for granted anymore. I am so blessed to have what I have - safe housing, a loving partner and family, financial resources and tenacious resourcefulness. Possibly the most important thing that I have learned this year is about who my friends really are, which is a very important thing to learn in this life.