Back in April of this year, my health started to
improve after a solid six months of significant illness. In my writing, I often
refer to this period as the “collapse”. My body was in utter chaos and my
symptoms left me housebound and bedridden. It is next to impossible to think
about “recovery” when your body is in chaos and there appears to be no end in
sight, but in April I began to envision a symptom-free future.
This is from an entry in my journal dated April 16,
2014:
What does my life look like when I am 80% recovered
in six months?
1) I am spending time outside, enjoying fresh
air and travelling to visit places that I love - lakes, rivers and camping.
2) I am dancing and entertaining in my home.
3) I am going to a job that I love every day.
4) I am working towards my goals of owning land,
building a natural/safe home and growing food.
5) I am riding my bike.
6) I am shopping for clothing and furniture.
7) I am in a restaurant eating food.
I can remember how hard it was to actually write
down those goals and to vision what my recovery would look like. I remember
feeling embarrassed by my own goals. By how small they seemed. How simple I’d
become. I’d taken my entire life for granted and I just wanted it back. It felt
uneasy to dream of riding a bike when I couldn’t even get out of my bed, but I
felt compelled to vision it. I felt it was important for me to recognize what
recovery looked like and felt like, so that IF it ever DID happen, I’d know it
was happening! I certainly wouldn’t want to miss that!
My “Recovery Date” was October 16, 2014 and while I
haven’t accomplished everything on my list, I can honestly say that I reached
my goal of 80% recovery. I actually don’t have a lot of power over the
remaining 20% of my recovery because my illness is chronic and is not going
away. I am also quite a bit at the mercy of the people I come into contact with
and the state of the environment around me. I still end up incapacitated and
bedridden after exposures, but I recover from them faster than I used to. I
still don’t go many places and I still can’t spend time at my school or other
public places. I still have to evacuate my home from time to time when unexpected
construction takes place in my neighbourhood. I still require all of my accommodations
and I am still living with an invisible disability. Even so, I am 80%
recovered from where I was during my “collapse” and the goal now is to STAY
WELL.
I want to address each of the goals and visions
separately.
1) I am spending time outside, enjoying fresh
air and travelling to visit places that I love - lakes, rivers and camping.
This summer we were able to find a lake nearby that
was accessible for me and we visited it a couple of times. No motorized boats,
no campfires, no smoking on the beach and daily testing of water. Managing
people’s use of sunscreen was a little challenging, but we could position
ourselves upwind from folks. We also went on several long bike rides on trails
alongside the large river that runs through the Region. Unfortunately, we were
not able to go camping, but we did pitch our tent in the backyard! Navigating
campfire is going to be a bit more challenging for me. I am not able to
tolerate anything ‘burning’ and the real risk at campgrounds is that so many
people use lighter fluid to start their fires.
2) I am dancing and entertaining in my home.
I have been dancing in the house with some
frequency and trying to get a little bit of cardiovascular exercise every day.
We have had several small gatherings of close friends at the house, but we
still have not had a “party”. I used to throw some pretty epic parties! I am
not ready for this at this stage in my recovery, but oh how I miss them!
3) I am going to a job that I love every day.
I am currently working full time as a Social Work
intern with an amazing Coalition that I really admire. I am working from my
home office, so I guess officially I didn’t achieve this goal, but I feel really
good about my work right now. I also did some freelance photography this spring
and summer, which was amazing and really fed my soul. I got sick following
almost all of my photo shoots, which was the downside, but recovery was pretty
fast and the enjoyment I obtained from photography was well worth it.
4) I am working towards my goals of owning land,
building a natural/safe home and growing food.
My partner and I had a very clear 6-8 year goal to
purchase acreage and start a homestead, but that goal is a little muddied now.
I expected to graduate in June 2015, but now I won’t finish until December
2016. Job prospects are a little less clear now that I require accommodations.
Employers aren’t exactly known for their willingness and desire to hire people with
disabilities. Our reduced ability to earn money means that we need to alter
this goal a little bit. For now, we have been able to make our house safe and
plan on installing a heat/air exchange filter unit on our furnace in order to
the make the house even safer. We are building a little homestead on the
property we do own and grew food on over 350 square feet of soil. We grew and
donated food to the Food Bank on one 200 square foot plot and fed ourselves
from the other 150 square foot plot. Sometimes it was hard for me to be outside
and sometimes I had to wear my mask. Other times, backyard fires, laundry
exhaust, lawnmowers and poor air quality meant I had to stay indoors for many
days in a row. There are many challenges to spending time outdoors, but I was
out there. I grew my food this season and I helped to feed others and this
meant the world to me.
5) I am riding my bike.
I never thought I would ever be able to ride my
bike again, so accomplishing this was very important to me. I discovered that
riding my bike was actually more accessible than going on walks because I could
move quickly out of problem areas. Also, it is not unusual to see people
wearing masks while riding a bike. I still can’t ride on the road because I
pass out when I am exposed to gas and diesel exhaust, but I have found
extensive and glorious bike trails that I never even knew existed!
Blessings I tell you!
6) I am shopping for clothing and furniture.
In reality, this is likely just never going to
happen for me. Stores, including (especially?) thrift stores are so
inaccessible. In general, new things are soooo problematic for me. I fear the
day when my things start to fall apart or break. I haven’t been shopping in
what feels like forever. But I did visit some yard sales in my
neighbourhood and I did order a new bathing suit over the internet. I had to
soak it for days in baking soda and borax and washed it five times or so and
left it outside to bake in the sun, but eventually I got to wear it!
7) I am in a restaurant eating food.
I also need to accept that this may never happen
either. Eating out is such an impossible feat for me due to use of
chemical products for cleaning table tops, floors, bathrooms and windows, toxic
air fresheners and scented nasty soaps in bathrooms, other customers wearing
scented products, such as perfume, hair spray, cologne and aftershave, etc. as
well as a lack of organic food options. I am very blessed because my partner is
a chef and a baker and so I really eat very well most every day of my life.
Even still, one day I hope I can eat out. I miss it and there are SO MANY
new restaurants in town that I’d love to patronize!
A lot has happened in the last six months!
I have “come out” to many of my friends about my
illness since April. To be honest, I always thought that I would just get
better and this would just go away and I would go back to living the life that
I was living before my chemical injury, but that never happened. And even
though I am experiencing “recovery”, I am still not the same and my life won’t
ever be the same, but I am learning to live and love in the body that I have. I
am learning my limits, my strengths and I am demonstrating resiliencies that I
never even knew I had in me.
I recognize that I am really speaking from a place
of able-bodied privilege because I am now experiencing recovery. And all the
blessings that I speak of are so much easier to see and experience from this
vantage point. In the depths of my collapse, I woke up disappointed to be alive
and in my body pretty regularly. There were many mornings where I couldn’t move
at all and felt like a prisoner in my own bed, in my own body. I waited almost
13 months to meet with a specialist, but it finally happened and I finally got
a diagnosis, which has been validating after being told for 18 months by my
family doctor that it was all in my head. I have a clearer understanding of my
illness, its trajectory, my treatment options, what my accommodation
requirements look like and how I am protected by the law. I realize that not
everyone is so privileged. Many people with MCS are never well enough to be
able to access the services that I have accessed, let alone get a diagnosis or
find a specialist or afford treatment.
I never intended to study the
marginalization of people with Environmental Sensitivities or Multiple Chemical
Sensitivities in graduate school, but it has been such a massive part of my
life and identity, I don’t see how I couldn’t study it. I’d never even heard of
ES/MCS before I got sick and I still haven’t met another person who has it, but
I keep hearing about them and how they “used to be” around and how “they are
not here anymore”. I want to show up. I want to participate. I want you to know
that I am still here and I am still fighting and I am still working for both my
own liberation and for yours - even if we haven’t met.
I only hope that I can stay well
enough to get it all done.
I did a
little bit of poking around online and found this reading box, which would be
absolutely perfect! I sent the photo to
the ALC requesting that one be purchased as part of my accommodation plan. It could be signed out from the library, or perhaps
signed out from the ALC on a term to term basis. 