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.

Personal Agency or Chemical Warfare?

http://scent-smart.ca/

For the last several years, I have worked extensively with health and safety committees, disability offices and other administrations regarding scent-free spaces, policies and procedures.  And the thing that comes up all the time is related to "personal agency".  Like somehow people covering themselves in hazardous material, which then vapourizes into the air all around them and all over everyone who is in close contact with them is some sort of personal right??

I vehemently disagree that people should have the right the poison everyone around them.  It is one thing to choose to poison yourself in the comfort of your own home and it is quite another thing to contaminate public air.

It is ASSAULTING!

It has already been proven that "fragrance" is toxic and is hazardous to health.  We don't let people SMOKE in public space anymore.  Why?  Because it is toxic and hazardous to health.  Perfume and fragrance is just as toxic as second hand smoke.  And your "right" to personal agency ends when it impacts the health of others and assaults the people around you.

CLICK CITATION FOR PDF - Fragrance in the Workplace is the New Second Hand Smoke.

DeVader, C.L. & Barker, P. (2011).  Fragrance in the Workplace is the New Second Hand Smoke.  American Society of Business and Behavioral Science Annual Conference: Las Vegas.

Dig Deeper

I can remember when I was first dealing with symptoms of MCS/EI and started poking around on the internet for answers - it was horrifying.  You have to dig really deep (and I MEAN REALLY DEEP) to find any quality information about this illness online. It is almost embarrassing to be honest.  I questioned my own sanity a lot, because frankly all of it did seem really “crazy”.  Even my MD didn’t know anything about MCS/EI and told me I was “just depressed”.  The severity of this illness is minimized constantly and the relationship we have with the broader community (everyone from the government, to employers, educators, medical doctors) is antagonistic.  The media does a TERRIBLE job of discussing/reporting about MCS/EI.  Good research is really hard to find and what good research there is - is poorly disseminated - so nobody really knows what is going on.

The impact that this illness has on people’s lives is really intense because we must completely alter our way of living and interacting with our environment.  It is an extreme accommodation that runs completely counter to the dominate culture.  There is no test for this illness.  It is an emerging health issue that is the result of the introduction of tens of thousands of untested chemicals that have been dispersed into the environment since the 1950s.  Medical doctors are not required to learn about environmental illness or medicine as part of their education.  Environmental medicine is a speciality and an area that is bound to grow in coming years, but change is slow.  Meanwhile, these chemicals are mixing with other chemicals and contaminating our indoor and outdoor environments and increasing the toxic load within our bodies.  The pervasive use of chemicals in all areas of modern life is making all of us sick, but some of us are getting sick faster than others, which is how people with MCS/EI came to be known as “canaries in the coalmine”.

Chemical free living is the new normal.

Now that I am a student, I have access to journal articles from many different fields of study and this has really opened my eyes (and understanding) about my illness.  I really resent that about academia though, I mean what good is research if only other academics get to read it?  Ugh.  It is so elitist.  If I come across papers that are available on the public domain, I will share them here from time to time.  

I recently found this article by Karen Ann Watson-Gegeo on the public domain. Through poetry and strips of narrative, this paper discusses the embodied experience of chemical sensitivity and the anthropologist author's and other patients' journey through altered perception towards knowledge, community and transformation in the context of a medical clinic. 

CLICK ON CITATION BELOW FOR PDF.

Watson-Gegeo, K. (2005, July-August). Journey to the 'new normal' and beyond: reflections on learning in a community of practice. International Journal of Qualitative Studies in Education, 18(4), 399-424.

What a Difference a Day Can Make.

Funny what a difference a day can make.  The day before yesterday I was thinking to write a blog post about recovery because I had been feeling so well, almost like back to my “normal”.  I’d been feeling clear-minded, the writing process was going really well, I was focused and had been symptom free for weeks.  I proactively made arrangements to Skype into my classes for the remainder of the term to avoid getting sick.  It is best for me to not go to class when I am facing deadlines with final papers because it is too risky for me. I learned this the hard way last term after an exposure at school at the end of October left me bedridden and housebound for a month and a half. I was even ahead of schedule with my papers this term and feeling really confident, healthy and strong.  
Until yesterday.
 

Sometimes I can't tell if my home is my safe space or my prison?  Both.

 
It is almost like I had a complete lapse in judgement and that I forgot that I have this illness.  Was I actually thinking that I could just GO SOMEWHERE and DO SOMETHING that I wanted to do?  I was sick within 5 minutes and faded fast into what I describe as a neurological stupor.  I spent the next 8 hours in a dense fog, unable to speak or think clearly.  I was weak and dizzy.  I laid in a detox bath (baking soda and epsom salts) for 3 hours and drank 2 liters of water in attempts to flush my system.  I loaded up on quercetin, turmeric and hemp seed oil.  I went to bed and woke up with a migraine and couldn’t move, so I laid there under the covers rocking and crying for four hours.  My partner texted me and told me to get up and eat and take my supplements, so I slowly made my way downstairs and made some food, grabbed the laptop, ginger root tea and got back into bed and cancelled my date to go for a walk with a friend.  And here I am again, in this bed, in pain trying (and failing) to focus on writing my remaining final papers.
And I just feel so sad, because had I wrote this the day before yesterday it would have read very differently.