Environmental Illness and Having a Car

I have a very contentious relationship with my 16 year old little Honda Civic.  I have owned the vehicle since it was brand new in 1998 and I vowed at that time that I would care for and drive the car all the days of its life. In the first 11 years, the windshield wiper motor was the only part of the car that broke and it once left me stranded on the side of the road when the timing belt blew.  It has been a great little car for me.

In 2007, I fainted at a gas station while I was filling up my tank. This was a very scary experience for me and I have never been able to pump my own gas since that incident.  It was not the first time that I’d had a negative reaction to a neurotoxin, but the incident really was an indicator that life with the car was not going to be easy anymore.  There are no full service gas stations where I live, and so I had to start bringing a friend to fill up my tank.  

In May 2010, shortly after the BP Deepwater Horizon disaster I decided that I needed to address my complicity in oil spills as well as my own oil addiction.  I parked my car for three months to see what life would be like without a car.  I rode my bike to work everyday, used public transit and I joined a Cooperative Car Share program so that I could have access to a vehicle if I really needed one for work.  Living without the car was a life changing experience for me and really broke me out of the habit of driving everywhere.  I loved biking so much more than I thought I would.  It was so freeing to ride and I could actually get most places faster on my bike than in my car.  I continued to ride my bike to work everyday after the three months and the car continued to rust away in the driveway.  The exhaust from the cars that I was sharing the road with was becoming increasingly challenging and one morning, after biking to work, I fainted at my desk and was sent to hospital.  It is still unclear exactly what brought on the fainting spell, the doctor suggested maybe I was coming down with the flu or that my blood sugar was low from my bike ride.  

http://drclaudiamiller.com/

In May 2013, I was chemically injured and this time it had a lasting effect on me.  To use Claudia Miller’s terminology, I became 'TILTed'.   TILT stands for Toxicant Induced Loss of Tolerance.  TILT is a theory of human illness that explains how a person can have a toxic exposure and fail to recover.  I became sensitized to (what seemed like) everything and I was no longer able to ride my bike or walk anywhere outside and I suddently found myself completely dependent upon my vehicle to get anywhere.  

Contentious indeed.

http://drclaudiamiller.com/

For the last 14 months, I have had to drive my car with the windows all sealed up tightly and the vents to the outside closed off so that no exhaust from other cars gets inside the vehicle.  It is nearly unbearable in the summer and there have been times when it has been 110°C inside the car because I have no air conditioning. I have to turn the car off and wait a few moments for the air outside to clear before opening my door to get out of the car or for others to get into the car.  

It is so outrageous to me that I should have to drive my car in order to protect myself from car (and other forms of) pollution!  Public transit is not an option for me at all. Of course, I don’t really drive the car or go out very often, but I have a LOT of car guilt.

Gas stations have become entirely intolerable.  I have to wear a respirator mask when at the gas station and can not open the doors or windows at any point while on or near the property.  The person filling the tank (usually my partner) has to get out of the car prior to arriving at the gas station and walk home after pumping the gas because they can’t get into the car afterwards due to residue on clothing, skin and hair.  Once home, my partner has to remove all clothing before entering the house and get directly into the shower. 

Seriously!  This is my life!

What is even worse than getting gas in the car, is needing to have it serviced!  This is a ridiculous amount of trouble.  I can’t go into mechanic shops, so I have to find a friend who can meet me there to drop the car off and deal with the staff.  The car ends up getting contaminated when mechanics sit in it and when they touch the steering wheel with oil covered hands.  Other times, they wipe down the inside of the car with some toxic cleaner.  It can take weeks before I can drive the car again without a respirator mask.  

I have been quite healthy lately and have been venturing out on my bike again in the last couple of months.  I am not able to ride during peak traffic hours and I am not able to ride on the roads at all.  The upside to not being able to ride on roads is that I have been exploring the extensive bike trails within my community. It has been so delightful to ride my bike and to discover new paths to parts of the city I never knew existed.  

What a blessing it has been to be well enough to ride my bike again! There were many times over the course of my illness that I thought I would never be able to ride again.

The car isn’t worth much anymore, so I stopped paying for comprehensive insurance because the deductible was higher than the value of the car. This winter a tree fell on it during an ice storm and since I didn’t have comprehensive insurance on the car, it hasn’t been repaired.  Of course, I couldn’t have tolerated having it repaired anyway, but it is really starting to rust out and fall to crap. The sad truth is that my car isn’t going to last forever and getting another car is not going to be easy.  I won’t be able to get another brand new car due to off gassing and the majority of older cars will have had chemical cleaners and air fresheners used inside of them.  

I can't imagine life without my car because it links me to the outside world. Here’s hoping my little Honda Civic has many more years in her and here’s hoping that I stay well enough to continue to ride my bike and explore the paths and trails hidden within my city.  

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.