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.  

'Used to Be' Narrative.

I have been thinking a lot lately about what I am calling the 'used to be' narrative.   

It goes like this:

"There used to be someone who worked here that had that problem"

"We used to have someone with that illness, so we implemented a scent free policy"
"We used to be a scent free building but then the person who was sensitive left, so we just stopped enforcing it"

"Oh yeah, I have heard of that.  There used to be someone around who had that too.  I wonder what happened to them?"

I never actually MEET people with EI/MCS, but I do I keep hearing about all the people with EI/MCS who 'used to be' present and participating in society, but are now relegated to the margins.  I would like to meet and know these people who 'used to be' around.  What happened to them?  What injustice did they face?  What struggle did they participate in? Where are they now?  What supports do they have?  How are they supporting themselves since they are no longer able to work?  

Every time I hear this narrative, it cuts right through me because I also a part of this narrative.  I will be (and already am) that person that 'used to be' here.  I spent four years struggling to make my previous workplace safe for me and ultimately had to leave.  I spent the next year trying to make my school safe for me and ultimately had to move to part time studies to reduce the amount of time spent in the classroom.   It is a daily struggle to NOT be the person who 'used to be' here.  

R E C O V E R Y?

I haven’t been writing much lately, which I think is directly related to feeling well.  When I feel well, I find that the last thing in the world that I want to do is think about being sick.  I started really working hard at being well starting in March, in fact, I started thinking a lot about R E C O V E R Y.  This was a big step for me because there isn’t actually a whole lot of information out there about recovery from MCS.  If and when I have come across information about recovery, it is attached to a big promise and a hefty price tag.  

Personally, I think that I have come through a natural progression of recovery because of all of the massive changes and accommodations that I have had to make to my life.  I had to move out of an multi-unit apartment and into a detached home where my partner and I could have control over what was coming into the house.  It took a lot of work, but we created a safe space within our home.  I was working full time and also part time and I had to leave that work because it was no longer an option for me. I decided to go to back to school but then found that I couldn’t manage my full time program and had to switch to part time studies. I stopped going almost everywhere.  My partner and I developed many protocols for managing contamination of the house.  I learned about masks and respirators and how, when, why and which kind to use.  

My immune system was in chaos and I could barely function and in addition to being so extremely sick, we were also making all of these major life changes at exactly the same time.  We moved into our home in late August 2013 and it took about seven months before I stopped having constant reactions and the chaos began to subside.  I couldn’t think about things like “recovery” when my body was in a constant state of chaos.  But things slowly started to improve and by March, I was spending less time in bed and my reactions were not lasting as long.  Like anything, I think we adjust to our new less-able way of being and learn new limits very quickly, although, I wouldn’t say that those months went by quickly.  They were the most isolated months of my entire life.  Time was dragging heavy heels and the days felt like months.  At my worst, I spent 20-25 hours a week living in a bathtub filled with hot water, baking soda and epsom salts because it was the only place I could be where I didn’t feel pain.
Isolation is the hallmark of this illness.

I was never a super social or extroverted person to begin with, but I was employed in the social service sector for over twelve years, so I was accustomed to spending a lot of time with people in my week.  I also had a very active photography career, which came to a grinding halt when I got sick.  I used to be pretty engaged within my community and hosted many art and food parties, which also just stopped.  Everything just stopped, well, I guess I was the only one that stopped because the world went on without me. 

 There is nothing quite like developing an obscure chronic illness that no one has ever heard of, that is hotly contested, poorly understood and grossly misrepresented in the media.  Both my family and my friends were a little confused by all of it and it took a long time for me to be able to communicate about it in a way that made sense to me, let alone to others!
The hardest thing about getting sick has been slowing down and not being able to do all the things that I used to do or go to any of the places I used to go.  I was a busy, independent, strong and active person living a very full and completely blissed out life!  I just don’t have the freedom anymore to just pick up and go anywhere or live with any amount of spontaneity.  I have to plan and strategize every trip outside of the house and I also have to strategize every person’s visit with me inside of my house.  I have to think about everything that I do and how I am going to get it done without being exposed to the triggers that cause my immune system to spiral into chaos.  Even my back up plans have backup plans and evacuation plans and plan Bs and Cs and all the masks to go along with it.  I also have to work extended recovery time into my life because attending one class at school might just leave me bedridden for an hour or two or a week or two or a month or two! Who knows?!  My life has become very small and has made me very dependent on others, which is extremely difficult and frustrating.  I just miss being able to just pick up and go visit someone or go out for supper or take a trip or grab a coffee or go to the library or pick up snacks at the fucking grocery store.  I can’t do any of these things anymore.  

Recovery from this illness is not like recovery from the flu where you wake up one day and all of your symptoms are gone and you feel better.  I have a chronic illness and recovery for me has been a journey. There are good days and there are bad days on this road to wellness and I am learning to be patient, loving, kind and gentle with myself in the process, while managing my expectations.