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 :)

Ongoing Challenges with Essential Oils

One of the most common questions that I get is related to whether or not I can tolerate essential oils. The answer is no, I am not able to tolerate essential oils since my chemical injury. My brain is unable to tell the difference between a synthetic fragrance and an essential oil. The vast majority of essential oils on the poorly regulated market are riddled with solvents and pesticides. Even when I am exposed to high quality, therapeutic grade, organic essential oils, I still have reactions and become very ill.

After having a really positive experience at a lavender farm, I decided to experiment with some controlled exposure to Lavender EO, as well as Peppermint EO in my home this Spring. One of my dearest friends and chosen family is an aromatherapist and she mailed me very high quality oils from her apothecary for me to experiment with. I chose peppermint and lavender because they are plants that have close contact with and because they are known to be helpful in treatment of migraines (which I suffer endlessly with).

Unfortunately, I wasn’t able to tolerate the essential oils and my experiments have not been successful. I will continue to work at this in my recovery, but I think that EO medicine is too potent, too concentrated and impacts my system with too much immediacy.

I just can’t tolerate it, but that doesn’t mean that I never will…

Before I got sick with ES/MCS I used essential oils all the time. I have learned that I also likely misused them a lot and likely sensitized myself to oils because of the many ways that I misused them. I was never clear about about how much you are supposed to dilute them. I also used the same oils year after year after year, without switching things up. I didn’t use oils as medicine, I used them as perfume. Essential oils are too potent to be used in this way. They are powerful medicine and need to be used with great care and under the guidance of a certified aromatherapist.

Personally, I think that essential oils should never be worn as perfume or diffused on the body in shampoos, lotions or creams. They are medicine that are meant for individuals. Like other medicines, they shouldn’t be shared with everyone around you. Your medicine is between you and your essential oil. There is no need for it to be spread around to people who may not need the medicine. 

I guess you might be asking yourself, "why bother experimenting?" The truth is that I experiment because one of my dearest friends and chosen family is an aromatherapist. It has been very challenging to share space with her over the last two years, but it is a major priority in my life. It is important for me to recover enough to be able to not have reactions when in her presence. She has also made a lot of changes to be able to spend time with me and so I am just trying to also do my part, in as much as I am able.

When people respect your access needs, it is an act of love and a form of collective care that has transformative power!

I can’t recover alone.

I am endlessly grateful for the people in my life who really work hard to accommodate me.

Exercise, Sweating, and Nutrition

Over the last five months, I have developed a regular habit of exercise on the recommendation of my Environmental Physician. I participate in a minimum of 20 minutes of a sustained 108 heart beats per minute - six days a week, no matter how badly I feel.  The only exception is when I have migraines because I literally can’t do anything during those stretches of time, which can last 24-72 hours and render me completely incapacitated. When my doctor suggested exercise, I have to admit I was really annoyed with him. I just spent all this time describing my symptoms of fatigue, lack of balance, nausea, dizziness, and musculoskeletal pain and there he was telling me to jump around and get my heart rate up? The audacity!

The truth is that I would do just about anything that he told me to do because he is a very well respected physician, so I made a strong intention to follow his suggestions and treatments with diligence. Much to my surprise, he was right. Exercise really helps me to manage my fatigue and increases my energy. It also creates new pains in my body that make it harder for me to tell the difference between pain caused by my illness and pains caused by working out. Somehow I am experiencing this as positive?!

My body doesn’t sweat. I never realized that this was an issue until I met with my Environmental Physician five months ago. I always thought I was just lucky! I was always that person in the crowd who didn’t sweat at the gym, at the beach, or while dancing at the club in my youth. My clothes never got smelly and I didn’t need to wear deodorant. Ends up that I am not so lucky after all. Sweating is one ways that the body detoxifies itself. My detoxifying system is already challenged and so not being able to sweat just creates a whole other issue for my health! The good news is that last week, after five months of hard cardio workout - I FINALLY SWEATED! This is a massive success for me in my recovery.
 

In addition to exercise, I have also started visualizing and talking to my cells. To be clear, my doctor did NOT suggest this to me, but it came about as a result of our time together. He had drawn a picture of a cell, to assist him in describing the dysfunction of my mitochondria to me. This image imprinted on my mind’s eye and I refer to the image especially during cardiovascular exercise to try to stimulate my mitochondria and support the cells in doing their metabolic work!

Another key aspect of my current recovery has been getting my IBS under control. I was diagnosed with IBS several years ago, but I really hadn’t figured out how to manage it. My Envrionmental Physician suggested the FODMAP nutrition protocol and it has literally changed my life. He also educated me about how my ES/MCS is related to the inflammation in my guts. FODMAPs has transformed my guts in a profound way. The main culprits for me were onions and garlic. Every meal I have ever made or enjoyed eating started with onions and garlic! Removing these two foods from my nutrition regimen has paid off in big massive ways. IT IS ALL ABOUT THE GUTS! I have worked hard to reduce inflammation through nutrition and supplements and I have increased my green vegetable intake to between 8-11 servings per day. I have also increased my good fats, amino-acids, magnesium, and fermented foods. My nutrition is spot-on these days and the last five months of committed focus has really paid off. I really have my doctor to thank for that.

Canary in the Classroom: Introduction

Canary in the Coalmine is an idiomatic expression that refers to the literal use of caged canaries that were used in coal mines in the 19th and 20th centuries.  Miners would take canaries into the mines because the tiny birds were sensitive to toxic gases and fumes.  When the canary became ill or died, miners knew that they must quickly leave the coal mine.  The canary in the coal mine acted as a warning sign of pending harm.  Many people with illnesses that are caused by the environment identify with the canary. I am a queer woman living with chemical injury and at this point in my journey I am also a social work (MSW) student and therefore find myself in the classroom.  

I have faced a multitude of barriers as a student in my first semester of school as my accommodation requirements are not well understood.  I have debilitating chemical sensitivities and become very ill when exposed to everyday chemicals commonly found in the environment, such as perfumes, after shave, deodorants, lotions, markers, glues, inks, laundry soap and softeners, air fresheners, oils, cleaning supplies as well as gas exhaust, laundry exhaust, lighter fluid, deet, fumes, paint, plastics, adhesives, synthetic furniture, pesticides, herbicides, fungicides used in agriculture, etc.  This chronic condition has many names - chemical injury, multiple chemical sensitivity, environmental illness, toxicant-induced loss of tolerance (TILT) and it is sometimes described as a 21st century disease.  

I have been managing this condition since May of 2013, so it is still a very new experience for me.  I have spent the last nine months researching this condition, while also experiencing its debilitating symptoms, navigating a health system that does not understand the condition, advocating for policy changes, spreading precautionary awareness and education, while struggling to access public space.  

I hope to use this space to begin compiling resources related to accessibility issues and chemical sensitivity. People ask a lot of questions and I have to explain what is happening to me repeatedly because it is very misunderstood and so I want to create a space where I can easily direct people to content that fits my understanding of my experience of chemical injury.  I will also share websites, resources and materials that I have found helpful.  I am currently student, however, it is not my intention for this space to be academic.

Thanks for reading,

Canary in the Classroom