Getting comfortable in the box

Six years ago this past February I was put into yet another box.  I had been put into many boxes before that time and will continue to be.  Boxes help people sort you out.  It's a thing.  Because of my early traumatic experiences with being put into boxes (broken home then broken marriage) I think I am averse to them and try to limit my own boxing of people.

It's actually kind of amazing when you manage not to do this 'boxing' or pre-judging of people. Humans are surprising. Including myself.

The box I was thrown into happened at a major turning point in the life of the modern day human in the so-called developed world.  It happened a couple of months before my 40th birthday.

This pre-40th birthday box is something I struggle with. I've blogged here about it and in fact this box is responsible for me reactivating this blog.  The box is labelled Multiple Sclerosis and it is still just as uncomfortable as it was six years ago when I was first thrown into it.

When I first received the diagnosis I reached out to the society for people with this disease. I found out that their purpose was to streamline the delivery of the medications. I was put in touch with friends of friends that had MS. All of them were on an assortment of medications that I had also started to accumulate:  various muscle relaxants and painkillers. One young man was on sixteen different types of pills with half of them prescribed to counteract the effects of the other half.

This scared me into rustling around the academic journals I had access to where I learned that the pharmacy industry invented the term 'disease modifying medication' in order to be able to sell a whole new line of very expensive drugs that, when tested on rats, showed that they might stop progression.  The notion of what exactly progression is was also quite spurious in the medical literature.  Astoundingly, lesion damage and progression was fully acknowledged to be an area that was not understood, at all. One series of articles identified that the placebo effect was remarkably high in nearly each and every study of MS 'treatments'.

So, I climbed out of the box that my doctors were putting me in and climbed into a new box. Yes, I have MS but no, I am not doing it your way.  I follow a very rigid diet that has substantial amounts of research that makes sense to me. My lesions went down, my neuro was impressed. That's enough for me.

Except, when it's not. This week has been a painful reminder that I need to take care of some of the realities this box contains for me. I spend much of the time forgetting that I'm in this box. I feel very fortunate in that. But it's always there and my acceptance of this is taking a very long time coming. I am loath to spend time discussing this box and now see that perhaps this is not the healthiest approach. It's time to perhaps decorate this box and get comfortable and reach out to others in a similar box. It's not going away.

Default World

I am midway through my drive across Canada (from Vancouver, BC to St. John's, NL). I have taken a day to regroup and write. I have only one week left on the journey and have had no time to write or read.  I have been driving and having power visits and brief social interactions to do with my concurrent LettuceConnect.ca Harvest Trek 2012 venture.

I have been away from home for over two weeks and returning to it last night was strange. It doesn't feel like home now. Daughter is firmly ensconced in university so she is not here. There are no animals to greet me.  My Toronto residence seems to have taken on a temporary quality. And I don't mind. I did enjoy my comfy bed last night and will again tonight before leaving for the east coast of my journey early tomorrow morning.  But beds are quite mobile and after camping in the open for three nights in the Rockies and on the Prairies I am pleased with how easily I coped with a nomadic type of existence, even if it was only for a very short time. Being a nomad suits me and although I'd had inklings of this part of my character before the trip I now see how solidly it is part of me. It has bloomed, as it were.

I find this lack of personal emotional engagement to my return to Toronto quite interesting and might just be the most important take away from my trek across Canada. I have little vested in Toronto anymore since friendships cross many borders nowadays. I own just a tiny bit of property. My return to the city was also met by my respiratory system with a permanently slightly congested nasal system. That is another strongly received signal. Perhaps my already compromised state of health might fare better in a location not covered by a thick layer of car exhaust fumes.

In my journey so far I've also had ample time to contemplate life, the universe, and everything (well beyond the factors of 6 and 7 or 42 for you non-mathematician types). I have also faced the reality that my reality is self made. This may sound like a rather obvious thing to some of you more grown up types but I've known for a long while that I'm emotionally less developed than most of my peers.

I have learned that each and every day gives me the prospect (or blank slate) of shaping my reality and this is really quite an astonishing discovery to me.

I am still getting used to the idea and yet a part of me has reawakened too. This feeling of a blank slate is like the resurgence of a long ago feeling.  A feeling that was sparked by certain teachers, books and my parents when I was a child.  Heroes like Terry Fox running through my hometown in my youth also helped stoke that feeling.  My re-visitation of his memorial on Terry Fox Day solidified the reawakening.

In the copious amounts of tears that I shed while at and after visiting his memorial I was left with the certainty that reality is something each and everyone of us shape.  And I am hopeful that I am ready, willing, and able to rise to the occasion.

I cried with new found admiration for this young man
at his stunning memorial overlooking Lake Superior.
Terry Fox is a perennial hero.

Awakening the privilege within

I snapped last night.  Publicly.  And then, like a "typical woman", I started crying.  I use quotes because that is what the man said after I had snapped at him and then started crying.

Here is what went down.  I was attending a community cafe event.  He was being critical of the food being served at the event and while he was talking I brought out the food I had brought.  Because,you see, the food that was being served at this event didn't meet the criteria of the diet I follow because I have MS.  He did not know this and unthinkingly made another negative sarcastic comment about the fact that this was some kind of cafe where people brought their own special food.  Yesterday was a challenging day for me on many levels:  emotional, physical and professionally.  Suffice it to say that his comment upset me and contributed to the isolation I was feeling on all of the aforementioned fronts yesterday.  So I snapped.  Not in a freak out way.  I merely addressed his unthinking comment by angrily informing him of my truth.  And my truth is so painful and was so pervasive to my every ounce of being that yesterday it brought me to tears to face it publicly with this unthinking and unaware man who is likely living in his own circle of fear and oppression and had the misfortune to try and vent that on me last night.

His truth probably involves watching (yet another) group of mostly white middle aged women 'helping' out the people in his poverty stricken area of the city by sweeping in with their 'high-falutin' ideas and feeding people cheap food (his earlier negative comment was to do with the fact that he felt that the $5 meal price was a bit high for the quality and quantity of food he had eaten...I responded by saying that I was sorry to hear that he felt that way and I would tell the organizers this feedback).  At the table where we were both sitting were a few of my other friends from outside the cafe that were both in attendance for their first time to this event so there was other socializing occurring beyond the interaction I had with this man.  So when his next comment was delivered after I had hauled out my own food (again, feeling very isolated in the community cafe with respect to the diet choices I have made, in full agreement with my neurologist, since I could not partake of any of the prepared food on offer).  All of these thoughts and feelings were floating around when this man made his unthinking and uninformed comment.

So I snapped.  I told him that the only reason I was eating my 'special' food was because that I could not eat any of the food on offer because I follow a special diet due to having a medical condition that prevented me from eating many ingredients.  He said, in a slightly sarcastic tone, "What, like one of those food allergy things that is so popular nowadays?"  The anger was palpable in my voice when I said, no, I have multiple sclerosis and follow a diet to hopefully prevent going blind or ending up in a wheelchair.  At that point the emotion overtook me and I started crying.  I then said that the day had been really rough (which it had) and this was just the straw that broke the camel's back.

I was humiliated.  I have never broken down so publicly before in a setting where I knew people in a quasi-professional way.  But what happened next was that I was engulfed by arms and hands that immediately reached out and across from the two friends at my table. Immediate support was offered.  Kleenexes were offered by a stranger at the end of the table.  And all this was offered to me, the white middle aged woman.  Not to the man whose anger and isolation was so much less apparent to anyone looking just on the surface.  

This man's comments will forever remind me that yes, to some it may appear that those of us that call ourselves social justice activists are just privileged (mostly) white folk.  There are many that have had a long life time of poverty and seen repeated cycles of efforts by people of privilege coming in to 'rescue' them from their plight. And, in all honesty, that includes people like myself, because even though yesterday was a rough day, my life is basically charmed.  And I got the immediate arms and hand of support - and the kleenex.

We are all in this together. And those hands and arms that reached out to embrace me last night need to be there for all of us in the literal and metaphorical sense.  I have had many dark days in which I felt there was no arms or hands out there to help me and in many ways that was my truth as a single parent struggling with health issues that went undiagnosed for years.  As someone who still faces a mountain of challenges I am grateful that I was given an opportunity to receive immediate support in a setting that is hoping to be the first community cafe in the city of Toronto.  A cafe that is meant to support the people that live in the area.

Daughter and I, Ottawa, 1995

The Protein Prerogative: Market Mondays

I first found solace by preparing food from scratch in the kitchen as a child - I even had a recipe published in a community cookbook back then.  So I guess I could say the preparation of good food has been a lifelong passion for me. In early adulthood I became interested in food mechanics and that led to me learning more and more about the different types of food and sources of nutrition.


In my evolution into a full blown hippie I had the mandatory vegetarian and then vegan phase.  And upon my first major episode of what was eventually diagnosed as MS I voraciously devoured all the current scientific literature (there is very little) and other respected material on food and disease.


Thus, suffice it to say that I'm an autodidactic food warrior.


And my knickers are really in a knot about protein these days.  Last weeks Toronto Council Committee meeting that squashed the possibility of urban chickens in Toronto added oil to a simmering ember.


Everybody worth their nutritional salt knows that protein gives us the most energy bang for your buck.  That's why the mega-food industry created a whole new market aimed at sports enthusiasts that centred on protein.  Protein shakes are something that many of us consume as a result.  It used to be that mom would go outside to the coop and pluck a few eggs to fry up for breakfast.  Now people reach for the whey powder and the blender.


Food sovereignty centres around protein, in my not-so-humble-autodidactic-view.  On one side of this issue are the people screaming for sustainability: ergo meatless mondays etc.  On the other is the organic food lobby:  Whole Foods meats Birkenstocks.  Or to boil it down to what these two sides tend to really represent:    vegan/vegetarian versus carnivore/pescatarian.


Having been an ethical vegetarian/vegan for a number of years I recognize the gleams of the fervent believer. Part of me is still very sorry that this option didn't work out for me....at about the five year mark of this 'lifestyle' I was craving fish so badly I 'caved'.  Remarkably I felt the energy difference almost immediately.  It wasn't until years later, when I was delving into all the nutrition literature, that I understood what had happened to me on that vegan/vegetarian diet.  My five year stint eventually led to a reduction in energy and a confusion of my body as to how to best replenish it.  My self published vegan cookbook had ample recipes with all the right protein combinations and I made them regularly yet I was still looking for more.  This is why I returned to dairy so quickly and then eventually 'succumbed' to the energy lure of fish and then 'happy' meats (ethically farmed or hunted meats).


So protein is a bit personal, to me.  Especially since I now follow a diet that prescribes a very strict regimen in order to prevent any more myelin sheath from being damaged and may even help to rebuild the stuff that is already damaged.  It is a strict but simple approach and the previous link gives all the science behind it.  It is simple in that it is very easily outlined:  no gluten, no dairy and no legumes.  But the execution of this diet is anything but simple.


Coprorations are out to make profit - they distribute shares to people (or other corporations) that believe that they can make a profit.  I think the Occupy movement has managed to illuminate this plain and simple Business 101 fact home to us.  We are also starting to recognize that our policy makers should be democratically elected but often are simply pawns for the powerful corporations that hire lobbyists that 'hire' politicians.  As my mother, the accountant, is fond of saying, we should always follow the money.


If I was a food corporation looking to make money for my shareholders then I would like to do it in the most efficient manner possible.  Not necessarily effectively, although my food product labelling may claim so.  So what if you were looking to provide a protein product efficiently?  You certainly wouldn't choose meat, poultry, fresh dairy, eggs or fish unless you could factory farm or unethically harvest fish.  You likely wouldn't choose nuts due to allergy concerns.  You'd look around the world and see what protein based substances grow quickly and easily and can be processed into protein products and you'd end up with two sure fire winners:  soybeans and dairy.  Michael Pollan told the food world a few years ago that Americans are basically walking corn stalks due to the pervasive nature of corn and it's derivatives throughout our food chain.  I posit that the sustainable food movement might transform people into dairy laced soybeans and they will be aided and abetted by the handful of global multinational food corporations that not only feed much of the world but also control the food for most of the world.


Like religion, food can be a force that divides or amalgamates communities.  In my solace laced kitchen during the last week I pondered the negative affect that my neurologist approved diet has had on my ability to go out and easily commune with food.  In a world controlled by huge food companies that seek efficiency I realized that this is not likely to change anytime soon, if ever in my lifetime.  And in a world filled with ignorant policy makers like those on that city council committee, I won't be farming my own protein source anytime soon here in Toronto.


But I can start screaming from my soapbox (blog) about it.  The sustainability of our food system is NOT about reducing your meat intake - although that helps.  What would help sustainability (and overall health!) even more would be a commitment by each household to create at least one meal a week, from scratch, with food that is ethically grown - and ideally from a local farmers market that has ethical vendors.  Market Mondays, anyone?

My body is a cage.

Yesterday was a bad MS day for me.  I am considering using a cane when walking in public so that I can be certain of maintaining balance.  It might also help remind me that, um, I have balance issues.  The thing I don't like about carrying a cane is the actual carrying of it.  My arms are in pain when I have bad days and carrying something might prove to be very annoying.  And you know what else is annoying?  Non-working accessible door openers.

Earlier in the day yesterday I read of someone whose mother died of MS at aged 58.

The inner dialogue kinda took off from there.  Add an argument with my daughter and I've pushed myself into an early grave with blindness and the complete lack of mobility preceding it.

What exactly is 'living bravely' with a chronic disease supposed to look like?  Does this mean that when you have bad days, like the one yesterday, you shut up and put up?  You try and stuff those dark and twisty thoughts deeper into the closet of one's mind?  On days like yesterday I have a sort of temporary schizophrenia.  My 'higher' voice says things like: "Oh c'mon, you're not that bad, you are walking and can see...don't mind the bit of eye trouble you are having today and that balance thing comes and goes...and I know the arms are painful today but that also comes and goes."  My "lower" voice says things like:  "You are physically washed out, how could you be dreaming of starting a business that requires any sort of manual labour...you're an idiot.  Why can't you just focus on using your brain to earn a living?  Isn't that why you went to graduate school for a decade?  It's too bad you didn't finish that phd...you wouldn't be in such a panic now, would you?  It'd be nice to have the benefits of a tenured job now, wouldn't it?  I guess you are really meant to be one of the have nots in this world, you really are a loser."

And on it goes.  A good cry sometimes helps, and it did yesterday, a bit.  I actually turned to music for relief.  A friend of mine made a request for my ten favourite songs of all time.  So I got working on a youtube playlist which will greatly exceed ten songs but will provide a nice distraction from life's realities for awhile.

Peter Gabriel - My Body Is a Cage - The funniest videos are a click away

Cheer your way out of an illness.

Telling me to cheer up or imply that I am not welcome unless portraying a cheery disposition implies that I have control over my physical and/or mental circumstances.  Waking up and being unable to fully function physically on a regular basis is no fun.  And, fyi,  there seems to be no cause/cure other than the lesions on my spinal cord.  I repeat, there is no known cure or cause.  So no, I did not bring this on myself. And lately I have completely reverted to the only pragmatic solution my budget allows - following a very restricted diet.

I agree that being in a good headspace is important when you have a serious illness.  But sometimes attitude does not overcome physical realities.   This past month has been disturbingly difficult for me.  The prolonged lack of employment is like a game of dominoes on my central nervous system.

I don't know if one can ever accept shitty things about one's life and circumstance.  I think the great literary works of art (and the visual/musical ones) serve as testament to the profound unease (and/or *dis* ease) that many of us struggle with.  One just learns to ignore and batten down the hatches, more often than not. I think I've been pretty good at the ignore part and I'm a mere novice apprentice for battening down the hatches.

So advising me to cheer up does not validate my reality.  I have an illness that can not be meditated away.  As far as I know.

Diets, Fads and Religion

I recently interacted with a couple of people who I didn't realize were animal welfare activists.  Not PETA members but apparently just as fanatical.

When I told them I had been a vegetarian and even a vegan for a number of years in my late 20s-early 30s they seemed to get quite animated (i.e. there is hope...we can draw her back).  They seemed about to crush my argument of losing energy while on a vegetarian diet when I pulled out the big guns and told them that I was no longer a vegetarian because of medical reasons.

That confounded them and I could see the disbelief in their eyes.  I repeated the phrase "We all have our own beliefs when it comes to our diet" a number of times in a number of different ways.  One of them was dismissive, immediately.  I felt the need to explain even further and was flustered by not remembering all the fancy names for the chemicals and the reactions that take place in the stomach when certain foods are eaten by people with certain auto immune diseases.

It brought to mind a potluck dinner party I went to in the last year where there was discussion about what ingredients were in certain foods (undoubtedly instigated by myself since being gluten free always inspires this).  After about 10 minutes of lively discussions by pairings in the entire party (we were all in the kitchen gathering our plates of food) someone piped up:  "Remember when we went to dinner parties and nobody talked about dietary restrictions?".  All of us laughed because yes, I think the 21st century has brought an awareness of food and health issues and the scientific research has advanced enough so that even an individual who is not a food scientist/nutritionist/doctor can assess for themselves how they feel eating certain foods and eliminating others.

For example, have you ever given up gluten?  When I first gave up gluten I felt a definitely lifting of "brain fog" that I had no idea was even there.  I've talked to others about this and it is not uncommon.  Unfortunately that is not why I remain gluten free.  I follow a specialty diet since I have multiple sclerosis.  My logic in doing so is:  a) I can't afford the traditional treatments; and b) there is not a lot of evidence that the treatments do anything.  So since I really don't have anything to lose and can possibly prevent blindness or a wheelchair in my future (or worse) I might as well give this a go.  And from nearly 5 years of experience following the diet I can say that the diet affects my quality of life too.

As I attempted to explain this, the looks of disbelief in the eyes of the animal rights activists I was talking to broke my heart.  These are people that haven't faced these type of choices and they were regarding my own choice as evidence that I was some kind of wacko.

This is the way many  people regard religious fanatics too yet mega food corporations have embraced them. These companies are merely exemplifying the age old truism:  "Religion makes money".  I find it offensive that people automatically dismiss diet restrictions as a fad when many people are following them for real health reasons.  These same people might respect a muslim for their halal food choices or a jew for their kosher choices in the interest of embracing religious diversity.  I don't really expect that to change anytime soon but by writing this perhaps I will enlighten just one person.  As one activist I had contact with for many years used to say in the face of clear public adversity:  "We soldier onwards."