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 :)

Dr. John Molot at Toronto Public Library

Dr. John Molot, Environmental Medicine Specialist and Author is going to be giving a talk at the Toronto Public Library on Wednesday, December 2, 2015 at 7pm.
If you have the chance, it is very worthwhile to hear him talk.

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.

Lavender Fields & the Possibility of Space

Last Summer, my partner and I were driving down a country road and came across a small Lavender Farm. By small, I mean their plants are only 4 years old. It is a very new crop for them. I was intrigued by the cute purple signage and picturesque landscape of the farm, so we decided to drive in and check it out. It was late August, and the lavender was not in bloom, but they had a store inside of their the barn. I was feeling brave and decided to go inside and much to my surprise, I didn’t have a reaction! There I was having this deeply sensory experience that wasn’t making me sick. That day really marked a big big step in my recovery. The farmer showed us around the farm and explained the distillation process and the history of the land and his family’s connection to it. There was a huge outdoor distiller and the rows of lavender grew in the background. I was awestruck. I thought it was literally the most beautiful place I had ever seen and all at once, I imagined my life magically unfolding in purple fields as I stood there intoxicated with the place.

The possibility of place is really powerful when you don’t belong and there isn’t any place for you. When everything around you makes you sick and leaves you holed up in a room with an air purifier for days. When you can’t even walk around your own block in your neighbourhood without getting sick. When you can only access your own backyard for a short time, a few days of the week. The possibility of there being a place for me brings me to tears.

It makes me cry.

That lavender farm represented ‘place’ for me.

We bought two 1st year lavender plants from the farm and took them home and planted them in the garden. I fantasized about lavender for many months to come and occasionally stuck my nose into  a jar of lavender tea over the winter months to inhale it and remember the day and the place (again without reacting). Winter came and I started germinating lavender seeds inside the house. I was inspired by the plant and I experienced great calm and pleasure while envisioning row upon row of of purple. I germinated soooo many seeds that I ended up not having enough space for all the plants when Spring came and had to give them away!

The lavender plants that I grew from seed are already bigger than the plant (now in its second year) that we got from the farm! They are doing so well. I hope they all survive this coming winter. I love lavender plants. They don’t don't like to be fussed over and coddled indoors. They want to be in the earth and left alone once rooted. Best plant ever. The farmer told me that lavender is not easy to germinate from seed, so I guess I am doing something right.

I love germinating seeds indoors during the late winter. It fills me with hope for Spring. It connects me to the earth during really isolated times. Last winter was particularly hard on me. Our neighbourhood has a lot of homes that use wood stoves for heating and unfortunately, I am extremely intolerant to burning wood, burning anything really. Burning in general causes me to have reactions. Between the wood stoves, the excessive idling of vehicles, diesel fumes from snowblowers and the small flood in our basement last winter, I was pretty sick, housebound and holed up with my air purifier. I am always grateful for indoor growing and the chance to touch earth and watch seeds come into being. It is especially satisfying during those long, late winter days when everyone is quite ready for Spring!!  In many ways, I think I might even love the germination of seedlings better than the actual plants once they are in the ground! I love new baby plants!

Lavender has played an important role in my recovery and my healing journey over the last year and for my birthday all I wanted was to return to the Lavender Farm, surrounded by people who love me. I wanted to have a picnic beside the purple fields and to walk slowly up and down the rows of lavender. I wanted to bring together people that I felt supported by during the last two years and share space with them. I didn’t actually know whether or not I would tolerate the lavender fields when they were in bloom, but it seemed worth the risk to me. Luckily, the day was perfect. I felt loved and supported. I don’t know if everyone really knew how much the day meant to me or not. There haven’t really been parties in my ES/MCS world, so that day was pretty special to me and was certainly the highlight of the last two years of my life.

I was happy.

I felt loved.

I was born in strawberry season, but in the years to come, I would like to always celebrate my birthday during lavender season instead.

Love.

Group selfie from the my Lavender birthday party.
That is me, in the front wearing the red hat. We are all blinded by the sun!

Documentary - The Sensitives Kickstarter

Filmmaker Drew Xanthopolos has recently launched a Kickstarter campaign to help complete his documentary film about living with Multiple Chemical Sensitivity.

Drew spent over three years following three families whose lives have been altered by MCS and hopes to show how ordinary people are driven to the fringes by this highly misunderstood medical condition. He hopes to create both awareness and empathy about the experience of MCS that is often dismissed.

You can pledge support at bit.ly/SensitivesDoc.

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

Bathroom Talk...

Our shower has been in need of caulking since we moved into our house two years ago. But we were unable to procure caulking that would be safe for me. We did find one that we thought might work, but the US company only shipped to Canada by the truckload and we only needed a few tubes. We recently found a caulking that seemed to be positively reviewed by others with ES/MCS and it arrived from the US this week. Of course, what is good for the goose, is not always good for the gander, but we couldn’t put it off any longer without risking a mold problem. We needed caulk and we needed it now. I couldn’t smell the caulk, but I was still reacting to it even though I was sealed off in my ‘saferoom’.
Simple home maintenance is always extremely challenging and stressful, and finding materials that I will tolerate is extraordinarily difficult and expensive, so we tend to get a little avoidant about it. Unfortunately, avoiding house maintenance tends to lead to bigger problems. My previous landlords would agree. [Laughing] I never let them do work on my apartments because inevitably they would use toxic chemicals. I was mild to moderately sensitive to chemicals for many years before I became TILTED in 2013.

Having our bathroom out of commission has caused me to think a lot about water conservation and the other activities that take place in the bathroom. My partner and I have been having bucket showers, which I find strangely romantic. It makes me nostalgic for camping and for my time in India. Bucket showers are not a long term option in our house because decontamination showers are a mainstay in the household. However, I can see us continuing to have bucket showers with some frequency.
It seems that the toilet is one of the biggest water wasting structures in the house. Living in the city makes it harder to design waste management strategies for the yard, however, one day I could see myself with a composting toilet and extensive grey water systems. In the meantime, it might be an option to divert urine into the compost. Human urine is liquid nitrogen and can be collected and poured onto compost. My partner and I have been actively engaged in intensive organic gardening for the last six years. We are long time members of a Community Garden and have worked as volunteer gardeners for the Food Bank. Since moving into our home, we have started all of our plants from seed and have built our own garden beds in our yard. I am also actively growing medicinal flowers as part of my personal healing process with plant medicine. I think our compost would benefit from some nitrogen.
It is good to practice sustainability and water conservation in daily life and I am working hard to find gratitude under the circumstances. It makes me feel very vulnerable to bring things into the house that can make me sick because this is my only safe place right now. Still, I am happy that we are finally dealing with the caulking and in the process I am learning many important lessons about water conservation, diverting human waste and glorious compost for my herbal healing!