Ania

Open Letter to Prime Minister Trudeau and Premier Wynne: Legalize Patients

To the Right Honourable Prime Minister Justin Trudeau and to the Honourable Premier Kathleen Wynne:

My name is Ania Bula, I am a citizen of Canada living in Ottawa, and currently a recipient of Ontario Disability Support Payments (ODSP). I am also a registered medical marijuana patient.

I receive this prescription to help me manage the symptoms of moderate-severe Crohn’s disease. As a quick background: Crohn’s Disease is an autoimmune condition that affects my digestive system. Symptoms can take place anywhere from the mouth down to the anus. This condition causes my digestive system to become inflamed and swollen, which in turn causes it to be very delicate. During flares, the inflammation can be so bad that the lightest pressure causes the membranes to tear and ulcerate, causing blood loss. The inflammation can also cause blockages in my intestines that need to be operated, a loss of digestive ability leading to malnutrition, as well as causing severe pain, nausea, vomiting, and diarrhea. Needless to say, it is not a pleasant condition to have.

I have been treated for Crohn’s, in addition to other conditions, for close to a decade. The primary medication I receive is an immune suppressant by IV once every 6 weeks.

The prescription marijuana serves two purposes. The first is symptom management. Marijuana helps with pain and nausea control. Without it, many days are too painful for me to function appropriately. I cannot get out of bed, I cannot keep food down, I become malnourished and have to be admitted to hospital. Once there I am usually prescribe harsh steroids which, while helping minimize the flare, also causes damage to bones and joints already ravaged by this and other conditions.

Because I can take marijuana in ways other than through oral ingestion, it makes the pain treatment more effective. Frequently, the swelling in my intestines prevents more severe oral medications like dilaudid, Percocet, morphine, and others, not to work effectively. Moreover, the side effects of opiates can often mirror some of the same symptoms I am already dealing with like nausea.

I take small doses of marijuana throughout the day, which helps me get work done: either paid work like writing, or even just domestic chores like making dinner. For me, marijuana has been the thing that has helped the most when it comes to regaining some semblance of normalcy when it comes to quality of life. It has kept me out of the hospital on more than one occasion. It has helped me feel human again, when many of my conditions conspire to do the opposite.

In addition to symptom management however, marijuana also helps actually treat my condition. Studies have shown promising results when it comes to difficult cases such as mine. Many patients who have not responded to conventional therapies alone, have managed to go into remission when given the added treatment of marijuana.

Why am I telling you all this.

Recently, under the direction of Prime Minister Trudeau, the Canadian government has started the process towards legalization of cannabis. While this news makes me happy, there is a much more pressing issue facing patients that I believe could be addresses even before legalization can officially happen.

Medical Marijuana, ever since the new rules put forth by the Harper Government, is not covered by insurance. Not even that provided by ODSP.

The cost of marijuana is high. The standard dose of 1 gram per day can run you about $10 per day. For those of us with larger prescriptions, the associated cost is even higher. Often patients are forced to choose worse or less helpful strains in order to deal with the cost. My prescription can cost me up to $600 a month. As someone who lives on a fixed income from ODSP, that number is far beyond what I can reasonably afford. As a result I have had to go into debt to get my medication, borrow money from friends, ask strangers on the internet for monetary help, and sometimes make the decisions between groceries or my meds.

This is not a decision that should ever have to be faced by patients. Even if the mmj was only for symptom management, it would still be an essential part of my treatment. The increased stress surrounding the ability to get my medication also has negative side effects on my conditions itself, which are sensitive to anxiety and stress.

I am asking you to please help patients like me. To work to make our medicine a help and not an additional burden. Healthcare is, I believe, an integral Canadian value. We’ve built a national identity out of being the country that cares for its sick, and I am asking you to please continue that tradition. Help us get our meds covered. Help us not have to struggle to get treatment when already living on an extremely fixed income.

Sincerely,

Ania Bula

Writer of Young, Sick, and Invisible

Alexandania.com

THE VALUE OF FICTION

Growing up, my parents encouraged me to read. I have memories of my parents working with me through Polish workbooks. I have memories of my parents reading, and reading to me. One of my fondest memories is working my way through the Hobbit with my dad. He would read one page and I would read the other.

Years later, on very lucky evenings, my father would read from the tales of Sinbad the Sailor as our family sat around in rapt attention.

When we moved to Ontario, it was one of the hottest summers on record at the time. Our new home didn’t have air conditioning, which my elderly grandmother couldn’t handle very well. We would walk to the library just a short distance from our house. Gran would peruse through the small stock of Polish books, while I explored.

I think my real obsession with books started that summer.

As I got older, books became a lifeline. I didn’t have a lot of friends at school. I spend many recesses bored and lonely, until I discovered that I could bring my own books to read outside. When things got difficult to handle, I would escape to books. When I was exhausted from my busy schedule, I would relax by reading. When I was finished with school work ahead of the rest of the class, I could read secretly under my desk.

Eventually, the same people who encouraged me to read voraciously started despairing of my choice of literature. I was encouraged to read Shakespeare, Joyce, Homer, basically anything deemed to be “the classics”. The fantasy I was reading was called worthless by people who themselves enjoyed reading.

What benefit is there to stories that are made up, which take place in a purely imaginary world? On the surface fiction might appear to be nothing more than entertainment. After all, how can stories that have no facts be of any use?

It’s never been difficult for me to see the benefits of reading even the most fantastical of stories. Books of seemingly little value have had varied essential roles in my life.

Some were very practical.

As a young girl growing up in an immigrant family and community, where everyone around me spoke a language different than that of the country we lived in, books were essential in helping me learn to speak English.  When my parents enrolled me in a French school, books helped me develop enough language skills in English to communicate with people in the English city I lived in.

Some roles were more therapeutic in nature.

It helped alleviate loneliness, and later, helped me maintain some sense of balance and composure when I was overwhelmed. They gave me a place to escape to mentally when I couldn’t escape physically. They kept me grounded until I could change my circumstances. Books helped me maintain hope that someday I would feel less alone, that I would find “my people”. It would just have to wait till I went out into the world, just like it often did for many heroes.

Eventually reading in itself became a way to meet people. What better way to start off a new friendship or relationship than bonding over stories that had a profound impact on your life. “What are you reading?” is a great ice breaker.

Reading helped me develop more social skills. I always had a hard time relating to my peers, but books provided me with social scripts for different situations. Stories helped me understand human nature and human psychology. Different books, different characters, different situations, they all provide different insights into the human psyche. You learn about the author through their voice, looking at exaggerated situations in a fantastical setting can help you recognize patterns and apply them to your own life.

Even in worlds with magic, there are often parallels to our own world we can relate to: corrupt politicians, family drama and misunderstandings, abusive dynamics and their possible consequences. Books teach us to think more about the shades of grey to help us see the whole picture and not just the black and white outlines. They teach us not to take things at face value and look below the surface. They teach can teach us that villains can be victims too, and that not all heroes are heroes. They teach us that everyone has worth.

Fantasy stories, those that featured magic and real gods and goddesses, are actually what made me start to question religion. Not because the stories were atheist, many of them were quite the opposite in fact, but rather because the stories encouraged critical thinking. In stories, the skeptic almost always ended the story by being “proved wrong to not have believed”. Interestingly enough however, a lot of the questions asked by those self-same characters informed my own questioning. Unlike in those stories, including those in the bible, the proof never came. In fact questions only seemed to spark more questions.

Teaching through narrative is a tradition whose origin is lost in the annals of history. The mythology of religions is a prime example of that, where magical creatures are used to gain some understanding of the world around us. In many religious texts, the prophet or savior teaches using parables or stories. Regardless of their veracity, they served as instruction.

Many cultures feature an oral tradition of sharing stories

Stories allow us to demonstrate difficult concepts, in a way that is easier to grasp. Take the Hunger Games and the ways many people have begun viewing current events through the lens of this trilogy to notice the same oppressive patterns being repeated in our own societies. Stories allow us to present the realities of privilege and oppression in a way that generates less defensiveness but still encourages the reader to draw those parallels.

Stories are a force for social change and our society knows this. Why else have totalitarian governments and organizations banned books throughout the years?

Books like Shadowshaper, where author Daniel Jose Older weaves discussions and examples of racism, sexism, gentrifications, seamlessly into a compelling urban fantasy.

Books like 1984 that warn us of the problems of sanctioned government spying for the sake of “security”.

Books like Harry Potter that discuss the importance of combating evil and the pervasiveness of xenophobia.

Reading is also what started me writing. So often I would find myself reimagining a story and modifying a character, or some part of a story would set my imagination soaring. Sometimes, I was out of new stories or told to take a break from reading. When that happened, I entertained myself by writing me own.

Writing fiction helped me explore facets of my own personality and identity in a safe way. Writing a bisexual character helped me discover my own queerness. Writing about gender non-conforming heroines helped me process how I experience my own gender. In the same way that stories featuring characters with similar struggles also helped me work through those issues.

Fiction might be nominally made up stories, but they contain a different sort a truth. One which is less about when things happened, but rather about why they may have happened and how.

Resolutions and My Mother’s Bike

For 2016, I am hoping to spend more of my time writing. I am particularly interested in working on and even finishing some various fiction projects.  I want to write more stories, both short and long, produce more blogposts, and generally get in the habit of writing a lot every day. Writing is like a muscle, it needs exercise.

Among these projects are:

1. Hunting Blackbirds: the first book in a series set in a world where people are divided into three categories and which one you belong to determines how human you are. It explores issues of racism, ableism, sexism and oppression. Total written: 46, 382

  1. The Tsarina and the Wizard: a retelling of a Slavic/Ukrainian myth about a beautiful Tsarina imprisoned by a heartless wizard. Explores queer themes, and gender bends rolls. Total Written: 687
  2. Cassandra Prophetess of Troy: a retelling of the story of Cassandra that plays with the idea of what prophecy is and what it means not to be believed.
  3. Beauty and the Beast: What if beauty was the beast? And what if there is more to the story than we really know.
  4. Book 2 of Hunting Blackbirds: Where I explore what happens after the hunt.

One of the best gifts I received this Christmas is from my sister. It is a writing prompt book make up of 642 things to write about. I plan on working my way through the book this year, working on at least one prompt a day. Some of them probably won’t generate much, some might produce stories, but some might end up as blog posts. To that effect I start with my first one, written before midnight, because why put off something good.

Write about something that was stolen:

I went to a high school that was about one and a half km from home. Deemed close enough to walk, and it was. I would walk to school every morning and walk back in the evening. Sometimes, if it was raining, or particularly bad weather, or I was running late, my parents would give me a ride to school. I didn’t particularly like walking, especially as my book bag got heavier and heavier. My joints would ache all the time, and whenever I brought it up the answer was always the same. I was out of shape I needed to lose weight. Except even when I was going to the gym regularly, I still found I had the same problem. Back problems ran in my family, so I didn’t understand why it was so impossible that there was something really wrong with mine.

Finally I came up with a solution that would work for me. My mother had an old Raleigh bike that she had had for I think something like a decade. It had come with us from Saskatoon. They had gotten me a great bike for my birthday, but were worried about it getting stolen, so they told me to take the old bike. I loved that thing. It spelled freedom for me in so many ways. Because I could rest my backpack on the seat, my back didn’t hurt as much. Moreover, because I could ride much faster than I could walk, it gave me more time to myself. I could take the long way home and have a few moments when I didn’t have to face anyone else.

I didn’t have to meet expectations, I didn’t have to perform, I could just be me alone, riding my bike. I don’t know how many stories and fantasies I played out in my mind during those rides. The benefit of the bike was so great, that even when I walked with friends, I would still bring the bike with me.

While at school, I would lock up the bike next to the cafeteria door. The lock I had wasn’t great. Sometimes it would come undone for no reason, even when I was sure I had locked it. But still, I was lucky. Even when it unlocked, it was ok. I would lock the bike next to the cafeteria, except of rare occasions when something kept me from it. A cluster of wasps that made it impossible for me to lock it there, or perhaps too many other students were there with their bikes. When that happened, the only chain-link that would work for a lock was closer to the street.

It was on one of these occasions that my freedom was stolen from me. The lock had come undone and someone took advantage of the opportunity. My beautiful red and white bike, my mother’s Raleigh, was stolen. And I was devastated.

Now years later, I don’t have a bike. I can’t ride the same way I used to. The damage to my hip is extensive enough that I would need a custom bike to make sure I didn’t injure myself. Now more than ever though, I miss that mobility. I find it harder to move more and more. The aches in my joints, not as bad as when I had my real problem, are still becoming more pronounced. I should say something to my doctors, but I’m afraid, because this time I know I’m fat. But what can I do? I go swimming twice a week as much as I can. I even have a swim buddy to stay accountable. My energy levels are so depleted between the depression, the constant anxiety over money, the increase in pain over the last several months.

I’ve started using the motorized carts at the stores. I feel guilty every time I do. I feel like I am failing somehow, like it is the ultimate proof that I’m a lazy fat-ass. But I do it, because the alternative is that I come home so depleted, that my whole day is eaten up by one errand. I can’t afford that.

I wish sometimes that I could have one of those scooters at home. Then I could spend more time, exploring my neighbourhood. Maybe it would be easier to take the dogs outside more regularly. Explore the city a bit more. I can’t afford it though, and I’m scared to ask my doctor about it, because I don’t want to hear again about how all my problems are just caused by my weight. And so, sometimes I dream of my mother’s bike.

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Children and Disability

Ever since I turned 27, the thought of children has been on my mind. At 28, I am now a year older than my mother was when she had me. I always thought that my life would go a certain way. I would get my degree, get married, start a career, and have a baby. All of this was supposed to happen before I was 30.

Then I got sick, and one by one those dreams went up in flame.

I couldn’t go to medical school. Not only that, but I might even be able to manage a regular job let alone a career.

I got a degree, but unlike I expected my whole life, I am graduating with a bachelor with no idea of when or if I will ever be able to get more.

Some things changed, but not for the worse, just became different. Instead of a husband, I have a wife. The important part of that: the love, the support, the companionship remains the same. We live in Canada for now, which mean marriage for us is possible.

And then there are children. (more…)

Robbing Peter to Pay Paul

Growing up I used to hear this expression a lot from my singing teacher. It usually meant that I was doing something with my throat or voice which, while sounding good at the moment, could do long term damage to my vocal cords. I’ve been thinking about this expression a lot lately.

Ever since it came up during a discussion with friends. I was explaining how some of my medication I seemed to take in order to deal with the side effects of other medications. The conversation turned into a discussion of side effects and I mentioned how almost all of mine have increased risk of cancer listed. I joked that the meds I were taking risked me dying a slow and painful death, however I take them to avoid dying a slow and painful death now.

I joked that I’m robbing Peter to pay Paul. (more…)

Don’t Make Me Pee In Your Fruitloops

It’s happening again.

Someone came up with a brilliant idea. Hey, why don’t we charge money for public toilets?

The reasoning is that by charging for bathrooms, the only people who will use them are people who actually have to go. Cut down on public sex, drug use, and raise money for the city all in one go!

Except?

Except this is just another example of how often the rights of the disabled are trampled over in the interest of “the greater good”.

What’s the big deal? It’s just a bathroom? If you can’t afford to use it, just wait till you get home?

Bathroom use is one of those interesting issues. On the surface we know that it effects everyone. One of the most recognized books in toilet training is literally called Everybody Poops. We don’t need to be socially convinced that people need access to washrooms. Where we make mistakes is in taking bathroom access for granted.

For the average person, if you need to use the bathroom, it is just a matter of finding one. You are able to devote a bit of time to looking for one, and if it takes a little while to find it, you are able to hold it in until you do. Chances are you have a restroom in your home and/or at work.

But some of us are not the average person. Some people are like me. (more…)

Where is Your Condemnation Now?

TW: For Racism

During the Ferguson protests, during the Baltimore uprisings, during countless demonstrations that took place because black children, black men, and black women, are being murdered, there were countless and endless condemnations by white people of the protestors as being too violent, too angry.

Last night, white people came to a Black Lives Matter demonstration for no other purpose then to commit violence. Their purpose wasn’t to raise awareness, to express anger and hurt over government sanctioned murders. No. They were there to kill people who had the nerve to protest being murdered. They were there because they don’t see PoC as being human beings, as being people. They shot five people.

When the police responded, their response included macing protestors after they had just been shot at.

(more…)

Sometimes the Cure Really is Puppies!

For the last several months, I have been dealing with increased Crohn’s like symptoms: an increase in pain, in nausea, and in extreme exhaustion. All the tests however are coming back normal. It’s possible that one of three things are going on:

  1. The symptoms are being caused by my IBS instead of my Crohn’s.
  2. My Crohn’s is active in my small bowel and we need new tests to detect it.
  3. I am one of the percentage of Crohn’s patients who have symptoms but the location of the disease is hard or impossible to find. Crohn’s sometimes likes to hide.

The doctor’s advice was for me to “take it easy” in the hopes that less stress will mean less symptoms. This is especially the case if the bulk of the symptoms are the result of the IBS. The problem of course is that in terms of stress, I am already on disability. I don’t work in the traditional sense, though I would argue with anyone who would try to say I don’t work. (Ever try to make 70 hats in under a month? Ever write a book?)

Most of my stress comes from the poverty that comes with being on disability. I live on a fixed income that was fixed long enough ago and hasn’t accounted nearly enough for inflation. I live on an income that depends on me having to make additional money but not so much that they start docking my support. My anxiety fixates on things, sometimes legitimate and sometimes not. In addition my depression sets off my anxiety.

If I can’t actually make more money and money is the leading cause of my stress, and I’ve already done as much as possible to relieve other forms of stress, what else is there?

I’ve looked at the problem extensively, and a thought emerged. You see, whenever I am around someone’s anxiety service dog that dog responds to me in a way indicating that they want to alert me. More than once, I’ve been alerted to an anxiety spiral by a dog on multiple occasions. When that happens, my sudden awareness of what is going on helped me work on therapy techniques to draw me away from the spiral.

It makes sense. When you live in a circumstance where some measure of nervousness and worry is justified, how do you differentiate regular worry from pathological anxiety?

For some time now, I had been considering the possibility of a service dog. The biggest barriers always seemed like a lack of easily accessible information, and an assumption that the costs would be prohibitive.

Then a little bit of luck came my way. I met a wonderful person who not only had an anxiety service dog, but had gone through the process herself. Her animal is what is called an owner-trained service animal, a designation that is not allowed in some places but luckily is in Ontario. Now, I am still learning what there needs to be learned, but I can say that an owner-trained service dog is NOT a fake service dog. It is simply one who was trained by the owner rather than by a specific program however, they both need to meet the same level of qualifications.

This person was willing to help me and let me know how to go about it.

With the consultation of my friend, and the pressure from my increasing symptoms, it seemed as though we were being pushed in that direction. In addition, our dog is starting to age and it getting to the point where a younger companion could do a lot to keep her in good health and extend her life. The final decision was aided with a promise from my parents to help with some of the costs in the form of a Christmas present.

We decided to give it a go and early this week we welcomed CJ (After CJ from West Wing) to our family.

Our choice of breed was dictated by a series of considerations:

  • Our home
  • Our lifestyle
  • My ability to handle certain weights

All of these considerations pointed us to a small dog. Toy breeds are also very attuned to humans since they grow up in much closer contact with people than other breeds.

My friend helped me administer a temperament test more than once, one based on one of the recognized assessment tests out there.

I will be writing about the process while I go through it. But first…. Puppy pictures!

Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy

Don’t You Fear Terrorism

If you have any interest in the news, you have heard about the attack that took place by a stadium in Paris. The attacks on Paris were not the only ones that took place. In addition to Paris, Daesh (ISIS/ISIL) has also claimed responsibility for attacks in Beirut and Baghdad which took place just hours before the ones in Paris.

In light of the attacks, there has been an international backlash against Syrian refugees. The backlash has included attacks on refugee camps, attacks on Mosques in Canada, the US, attacks of Muslim people all over the world. It has also resulted in the US attempting to close its doors to desperate people fleeing from Syria. Politicians are announcing that they are barring their specific corners to refugees in flagrant violations of their own laws, and still others are suggesting measures reminiscent of the Holocaust and the persecution of Jews in Nazi Germany before the start of the war.

Why? Because they’ve decided that Syrian refugees pose a safety risk.

Some people have decided that the torrent of refugees is the perfect disguise for any terrorists looking for admittance to the US or any other place where refugees fleeing. This, of course, ignores the realities of the refugee process, and the fact that none of the terrorists have even been found to be Syrian nationals.

The racist and islamophobic rhetoric and actions of the last few days, always seem to be accompanied by apologists asking: “Don’t You Fear Terrorism?”

The question is meant to suddenly make these bigoted measures seem appropriate, because, it’s not racist you see, its self-defense.

But see, here’s the thing. I do fear terrorism.

I fear the terrorists who send threats to people who fight for social justice.

I fear the terrorists who put people’s lives in danger by doxing them.

I fear the terrorist who decides to shoot me or my friends because he’s decided that feminists are to blame for anything that has gone wrong in his life.

I fear the terrorist who walks into a school with a gun because a woman told him no.

I fear the terrorist with a badge who kills people based on the colour of their skin.

I fear the terrorists who see nothing wrong with brutalizing their children because of a disability, or because they are trans, or gay.

I fear the terrorists threatening and murdering people of colour for daring to exist: in churches, universities, in parks playing as children, walking home from the store.

I fear the terrorists who blow up clinics because they disapprove of a woman’s right to choose.

I fear the terrorists in government who use fear to slowly strip us of our rights.

What I don’t fear are children and terrified people fleeing their homes and everything they’ve known, who have watched their homes destroyed, and seen their friends and family killed.

The refugees are not terrorists. The terrorists we are so afraid of grew up right here.

Metropolitan Movers: MOVE FROM HELL!

I posted earlier about the “Move From Hell“. The following is the email I sent to the company on Oct. 15, 2015, detailing the whole thing. I am posting it publicly since the company has as of the date of posting this, not responded to my email except with a confirmation of receipt and a promise to respond to it within 15 business days (Which would have been Nov. 5.) 

Re: Sunday Oct. 4
To Whom It May Concern:

On Oct. 4th, 2015, I had a scheduled move with your company, Metropolitan Movers, for an in city move of a 1 bedroom apartment to a 2 bedroom apartment.

At the time of booking the move, I informed the person with whom I was making the booking that we had 3 large aquariums as part of the move, as well as a deep freezer. I described that our building had a loading room connected to the elevators.

I was quoted an estimate of two to four hours, but was warned that it could also take up to six hours.

Your movers arrived promptly, and got to work right away. I want to be clear that their first impression was of professionalism. They also made a point to make me aware of any existing damage right away, which I appreciated.

Despite the fact that the movers appeared professional, their actual work was completely incompetent. To begin with, they did not use their available equipment to complete the move. They carried every box with their hands rather than loading several on a dolly or flatbed, to speed up the process. When they arrived, almost the entire apartment was already packed up and ready to go, with the only exceptions being items which needed to be packed at the very last minute, such as food in the freezer.

(more…)