CN: emesis, classism, fatphobia from doctors, medical negligence, disordered eating
CN: SA, CSA, domestic violence, corporal punishment
Four years ago today, my house burnt down. I still remember the call. I was home sick, staying with Alyssa at her place near campus, when my roommate called me. At first I thought it was all part of some elaborate joke, before she started telling me that the roof had caved in, and that firefighters were still there trying to put it out.
The fire had started at our neighbours’, and then to our building. After hours of fighting a fire that ended up consuming three houses, they finally had to bulldoze the building to the ground. I lost everything.
In many ways I was lucky: I had a place to stay, I had a couple days’ worth of clothes as well as my laptop and charger from spending the weekdays at Alyssa’s. The university gave me a quick emergency grant and so I was able to buy some more clothing and replace the school books I had lost.
I had tenant insurance which helped me get a new apartment. In the meantime I had to make an inventory of everything that I had lost along with its approximate value.
Imagine that for a moment; losing everything. Imagine all the sentimental items you have, the photographs, your favourite book. There are things that can never be replaced that are gone forever. Just a few months earlier, my parents had taken the family to Poland to celebrate their 25 wedding anniversary. While there my aunt, who is an artist, gave me one of her paintings. I dragged it with us across Europe and back home. It hung on my wall for such a short time before it was lost forever. On the same trip my parents showed that they were becoming more accepting of my career as a writer by giving me a quill set. I had never even had the chance to use them.
I lost books that I had had autographed by favourite authors. Each of those had a story that went with it, like how I got to see Margaret Atwood talk about starting the Writer’s Union on someone’s front lawn. She said such nice things to me when we spoke and she signed my book. Or like Charles De Lint, who when my ex told him that I was a big fan brought a signed copy of his limited edition Yellow Dog. Those are keepsakes that cannot easily be replaced.
My yearbooks were all lost, as were the various awards I had won. Gone was the biology prize. Gone the various debating awards.
How do you put a price on all this?
In other ways however, I wasn’t lucky. Because of health related concerns and bureaucracy, I knew that in the next several months I would have to stop accepting aid for my parents. I had to save the majority of the check that eventually came in to pay for tuition for the next year. One doesn’t realize how much the various possession we accumulate over time add up until you suddenly have to replace them all at once. For years afterwards, even to this day, I have found myself missing some item, some tool, which I had had previously and been unable to replace.
A loss such as that, followed by years of poverty, can mean difficulty for a long time. Most of our furniture we found on dorm move out day, when people tossed the things they couldn’t bring with them. I don’t have a lot of clothing, and most of what I do have comes from Value Village.
The loss of my home sent me into a reawakening of my Crohn’s flares. Instead of getting better like I had been previously, I started getting worse again. I spiralled into depression which took me a long time to figure out. I absorbed the shock of the loss and became instantly numb, except that as time passed I couldn’t quite get feeling back. Numbness becomes oppressive after a while. You yearn desperately to feel again, but you almost can’t remember how. You laugh, but you don’t really feel joy. Tears fall from your eyes and you cannot stop them, but you don’t understand, because you don’t feel sad.
I wonder sometimes if I had been there, if I had seen with my own eyes, if it would have bestowed some form of closure, some acceptance of what happened. Even years later it sometimes feels like I just picked up and left everything. The fire ended up on Youtube, but it is still not the same. It is hard to believe that everything is just gone like that, and even four years later it doesn’t seem entirely real. I don’t know that I ever really grieved. There was never any time. There was always something more pressing. Maybe this is me grieving. And maybe someday I will be able to rise from the ashes, reborn.
NB: If you are related to me or to my partner, I would prefer that you not read this article. If you are a friend of my or Alyssa’s parents’ who somehow found their way to this site despite the precautions I took to move the site, then keep anything you read to yourself or if you are unable to do so, then do not read further. Do not share ANYTHING you read with either my parents or Alyssa’s. Any violation of this boundary will be grounds for me cutting you completely out of my life. You will be considered unsafe. I will consider you someone who does not respect boundaries and thus consider you abusive, and I will not keep this opinion to myself. You have been warned.
The other day, I spent an hour and a half on the phone with the Ontario version of welfare known as Ontario Works. Of that, one hour was just being on hold. It took less than 30 minutes for them to decide that I don’t qualify. 30 minutes to decide that even though the money my non-citizen boyfriend makes is not enough to cover all of our bills, it is too much for us to qualify for financial assistance. Our bills are not outrageous, but the reality these days is that life is expensive. Apartments, gas, communication, etc. the price for all of these is going steadily up while the income one can reasonably expect goes down.
Half an hour is better, I suppose, than the 6 months that ODSP took to respond. According to them, having extreme pain, not being able to walk long distances or stand for long periods of time, regularly bleeding internally, not being able to keep food down or stay out of the bathroom for more than an hour, all of this while also being immunosuppressed and so being frequently laid low with all the colds, viruses, bacteria, and more making their way through our population and air, doesn’t count as a disability. Crohn’s doesn’t count as a “A substantial physical or mental impairment that is continuous or recurrent”. Of course not! Why would something where your worst day means you in the hospital hooked up to IV nutrients, steroids, and pain killers, and your worst day happening every few months or weeks, count as a disability? It is not like being in pain, or in the hospital, or not having the energy to move because you haven’t digested food in days, impacts your ability to work. Of course NOT!
There have been lots of really good articles addressing how people look at poverty, at the unfair assumptions surrounding people who are poor, and about how insidious poverty is. A lot of these articles come from people who have gone through poverty themselves and are worth taking a look at.
One thing that people don’t seem to really look at however, is how much the systems of poverty exist to keep the underprivileged poor and desperate. How the system is particularly set up to make sure that if you are sick or have a disability that you better get used to desperation and fear. You better get used to doing without. That the system is designed to make sure that you feel useless, worthless, and like a loser. About how if you are poor, society tells you every day that you are not worth keeping alive, because clearly it must be your fault that you are poor so you deserve the consequences that come with it, even if they mean death.
For me it all started really with my disabilities. Before that I was a typical broke student. Not rich, but not really poor. My bills were paid by my parents who also gave me a weekly allowance for groceries.
Budgeting meant deciding how much of that weekly allowance went for treats and how much for essentials. It meant making sure that my monthly bills didn’t go over a certain agreed upon amount per month. It meant looking for a job to supplement that income and help take some of the burden off of my parents. But ultimately, it meant that if I ever got in trouble, if I ever had an unexpected expense or that if something bad happened, I had a safety net to fall back on. I had my parents who would make sure I wouldn’t starve, or go homeless. Who, while letting me learn from my mistakes like maxing out my credit card (of course I have to pay that off myself), would also not let me become desperate.
When my health troubles started, so did more serious concerns about money. Early on the medication I was put on was a biologic: a new line of meds that modulate the immune system in order to help prevent the immune response that is causing you problems in the first place. Because biologics are new and in many cases, still being studied, they tend to be obscenely expensive. At first, it was a hardship, but manageable. My parents were able to cover the expense, though my guilt over being reliant on them for support became even more intense. I became determined to work towards self-sufficiency.
For months, my parents and I tried to get on Trillium: a provincial prescription insurance that takes applicant’s financial information into consideration. While we were approved, they decided to take my parent’s income into consideration and the deductible was so high as to make the coverage essentially non-existent. This is a common occurrence. Despite the fact that my parents lived more than 8 hours away, it made no difference into their considerations.
When my Crohn’s kicked in, I was switched from biologic to biologic, finally ending up on Remicade. Had it stayed at that, the situation my family and I had going might have been able to continue. This was not the case however, as my Crohn’s refused to go into remission. I was getting better, but only in that I was no longer ending up in the hospital every two weeks. Instead, I was still sick, but was able to limit hospital admissions to twice a year. I was able to simply survive my flare until the next dose, and experience a brief window of seeming normality immediately after the infusion. My doctor decided that something more extreme had to be done to try and push my system into remission. I would have to go on a double dose of Remicade.
My first double dose however would be given before I could qualify for Trillium. With that in mind, I did something I had been hoping to avoid for a long period of time: I took out a student loan. More accurately, I took out a student line of credit. I used the money from the line of credit to pay for my next dose. I also used it to help pay expenses until I could find a job that would be able to cover everything: rent, groceries, everything. I was officially on my own. Months before this happened, my house had burned down and I had lost everything. I had little clothing, and not very much furniture. The insurance money had gone towards paying my next year’s tuition, as well putting down a down payment on a new apartment, and supplying me with a very limited wardrobe to replace what was lost.
I found a job that would help cover things. I was prepared to work hard. I wanted to keep this job until I was finished with school and could get my long term job/career. I knew it would be difficult, but I was prepared to apply myself and be the perfect employee. I saw myself on the path to middle class normalcy: a little difficulty in the beginning followed by relative comfort and security in a white collar/professional job. I didn’t want to be a millionaire or a CEO. I wanted to someday have a house and a car, to have a family, to have a job that I like, that makes me feel as though I am making a difference. I wanted to be able to occasionally go on a vacation, and to have fun with making my interesting recipes. I wanted to save for retirement. I wanted to occasionally be able to splurge on something knowing that while it might mean saving for a few months, it wouldn’t put my life, home, or security at risk. I still want/dream of all those things.
What I didn’t know was that that new job would send me on a path that would eventually spiral into disaster. It started out great. It was work I enjoyed: doing social media marketing, writing, with some occasional clerical work. There was variety, with me occasionally being asked to come up with a meal or event idea for my boss, doing some personal assistant work like filing papers with the court, etc. etc. A few months into my job however, trouble started brewing. My boss was considering a company move, and the hustle and bustle included a loss of her assistant dealing with the paperwork side of the business. She looked for someone new, but eventually, the responsibilities fell to me. I didn’t mind since more work meant more hours and in turn more pay. Soon however, it was clear that the amount of work expected was beyond what was feasible. I was doing the work of a marketing assistant, a clerical assistant, and a personal assistant. Soon many days would end up with me working for ten to twelve hours straight. Frequently I would work through lunch, or miss it all together. I would come home exhausted, too tired to make dinner or do anything other than go straight to sleep. While I was doing the work of three people, my boss didn’t believe the work-load to equal any more than that of half a person. She became dissatisfied with my performance, convinced that I was too slow, or just too lazy. The stress of trying to maintain the long hours, the quality of performance, all the while increasing the speed at which I completed everything began to make itself felt.
I bought a car to help mitigate the fact that the bus commute was more than an hour long, and to take away the stress of not knowing whether I would have access to the company car at any given day. With the money I was making at the time, it was within our means and would also give me more opportunities to be even more productive.
I was constantly anxious. I would receive multiple texts a day, from the office, from my boss, from clients. At times I would be messaged late at night to perform some emergency task. My inbox was constantly flooded. I was falling behind in my work, which in turn made my employer punish me for unproductivity. I was becoming sick more frequently, finding blood in my stool at an alarming rate. I was admitted for some time with pancreatitis. I began to need my medication more and more. I was constantly exhausted and felt wrung out and on the verge of meltdown. I started gaining weight due the stress and the unhealthy eating habits that became the norm of my life.
After buying the car, the unreasonable expectations, the anxiety, all came to a head when my boss gave me reason to believe that I would not receive my next paycheck. I spiralled into a state of anxiety so bad that I had to call in sick from work. I felt as though I couldn’t breathe. I looked back over what had been happening in the last few months and realized that I was in an abusive relationship with my boss. I was wound so tight with anxiety over that entire time that I became convinced that I would snap. I had a panic attack every time I heard the tone on my phone I had set as hers. I would jump whenever I heard that sound coming from someone else’s phone wondering what I had done wrong now.
I made a decision that despite all the hardships that would come from it, I still maintain was the right one. I quit. I knew that the decision was one I had to take.
I began to look for a new job right away. I went to various interviews. I was hoping that one of the other people at the company would hire me. I knew that many of the others there thought I was doing a good job. I went to interviews and finally I was offered a job. It was a bit different from what I had done in the past. This time I would be working as an office assistant in a trades industry. Things began spiraling further down almost immediately. The office was frequently dirty, with dust lining every surface. My bosses were constantly at each other’s throats. It was not uncommon for someone to slam doors, yell, or burst into tears. The whole office environment fed on drama, with everyone talking about everyone. It was a minefield of emotional stress.
My Crohn’s rebelled. Over the next several months I existed in constant pain outside of what I had learned to tolerate. I was frequently ill. Mornings would involve me struggling to find the energy to get up and get to work. I had to call in sick frequently since the dirty environment did not agree with my immunosuppressed status. My promised raise fell through when my bosses became upset with my frequent illness.
I started going to the washroom more frequently as my flare up worsened. This was remarked upon by my employers, who wondered whether such frequent trips were necessary. Though I was working significantly fewer hours than I had previously, my exhaustion worsened. After the previous work environment had set off my anxiety, this new emotionally volatile environment became too much to bear. After months of hoping everything would settle down, after weeks of looking for a new job on the side, in the hopes that I could find a new environment, sharp stabbing pains in my stomach landed me in the hospital.
The doctor in the emergency room remarked that I was flaring. I needed to take time off. She wrote me a doctor’s note telling me to stay away from work for the next week. My regular GI followed up with his own concerns about the state of my health in the last few months. It was becoming obvious that I could not keep this up much longer without serious long term consequences to my health. I needed to stop.
I applied for sickness benefits and left my work. I needed to re-stabilize in order to have any hope of getting better and someday getting back to that goal of normalcy.
Applying for sickness benefits is a difficult process on its own. It takes weeks to get approval and in the meantime you exist in a state of moneyless limbo. It is a terrifying state. You are not working and have no money coming in, but you have to wait weeks to find out if you are even approved. You worry that at the end of that time, they will decide not to cover you and that you will be without the funds you need to pay rent, your bills, or buy groceries. You have no way of knowing which way the decision will go. Many people who deserve to be on sick leave don’t get it, while others are approved. How can you tell which you will be until it is too late?
I spend Christmas in this state of limbo, relying on the kindness of friends who donated to my blog. My parents as well sent me some money for Christmas, which helped make sure I was able to eat.
Finally, I got my approval. For the next few months I was taken care of as I worked on getting back to form. Still, in the back of my mind was another fear. What would I do once the coverage period ran out? How long would it take me to find a new job, and would I even be able to work again? I applied at this time for ODSP: Ontario Disability Support Payments. With disability, I wouldn’t have to worry if I continued to be unable to work.
The frequent pain and illness were beginning to take their toll.
All around me people were warning me that getting approved for disability is close to impossible. I did my best to look for sources of income that would work with my disabilities. I found a job briefly, but soon my anxiety and my disability got in the way and I was fired. Finally this past month, I made a try for welfare. My application for disability was denied in the first rounds. I will be fighting appeals to try and get myself approved as being genuinely disabled. In the meantime however, I struggle with finding a way to survive.
In the meantime, the stress works its negative effects on my health, prolonging my incapacity.
While struggling to find solution to our monetary woes, there is also a fear in the prospect of making too much money. At what point will trillium decide that I can afford to pay $9000 every six weeks? If I manage to get disability and then go back to work, at what point will they decide that I make enough that they no longer have to help provide me with insurance for things like eye care and dental. Health insurance in general is out of the question thanks to my “pre-existing” conditions.
But still that point is far away.
Instead, I have to wait on all that until support runs out, to start working on pulling myself out of this hole, in essence prolonging the length of time I spend in financial insecurity.
I am not the only one in this situation. This is the harsh reality of living with a disability. Pain, anxiety, disability guilt, illness, and exhaustion all stand as barriers to being able to work.
Even if you are able to work, many employers are not interested in taking the risk of hiring you, lest they be on the hook for covering any long term hospital stays or disabilities. In truth it is not completely unreasonable when you consider that, at least in my case, a normal year could require a minimum of 40 sick days. Others find excuses to fire you so that they don’t have to deal with their responsibilities towards you.
If you belong to other identifiable minorities, the difficulties in finding suitable work can be even more intense. There is a societal attitude that pains people struggling with disabilities as being incompetent. If you are a woman, such a disability can further disadvantage you in the eyes of employers. If you are a woman raising a child, then most employers are really unwilling to take the risk. If you are a person of colour, you have to struggle against stereotypes and racially motivated assumptions about the source of your disability.
Many of us live on the brink, juggling our desperate financial situations with a desperate search for ways to treat our conditions. We go to doctor’s appointments, take harsh medications, spend endless hours in waiting rooms, and getting tests done. Sometimes we end up in the hospital, hooked up to drugs and IVs that only take the edge off of our sickness or pain, to maintain us until they can try the next potential treatment or the next referral.
The internet has provided a means of requesting support from our friends and/or followers, whether for occasional extraneous expenses like moving, or for more regular help in paying your bills while you wait for more permanent means of supporting yourself. Even aid like welfare does not actually provide valid means of support. The government has expectations that you be able to find shelter, buy food, and manage all of your other expenses for less than $600 a month, in a city where most bachelor apartments start at that amount.
When we try to make use of the funding support that the internet allows us we are either shamed by friends and family who insist that we should be too embarrassed to ask for the basic means to be able to survive, or we are accused of being scam artists. I have seen this repeated over and over again. In the past on my blog I have been accused of running a scam when sharing similar stories of desperation from other struggling people with chronic illnesses and impairments. When recently Angie the Anti Theist shared her own story of desperation which motivated others to start a fundraiser on her behalf, commenters have used her frequent requests for money as proof of some sort of incompetence or abuse of people’s generosity. These types of complaints only add to the weight of anxiety and burden already caused by our situation, while ignoring the circumstances that make these frequent requests necessary.
These same people who complain about the frequency of our need to share our stories, or our attempts to discuss how the systems is unfairly set against us. We are accused of just whining or not thinking positive enough. We are told that all we need is a healthy diet, or exercise, which ignores those of us who either already do or are unable to due to poverty or pain. Pointing that out of course just means that we are useless pawns of pharmaceutical companies. We are told that talking about our stories just decreases our likelihood of getting a job.
We are called lazy, we are called incompetent, we are called moochers and drug addicts, and I for one am sick of it.
It terrifies me to think I will never get out of poverty. I don’t expect to be wealthy. But I would like to be able to provide for my child and myself without having to sometimes choose between one basic over another. It terrifies me to think Thinking Jr. will grow up still on welfare. I don’t want to be dependant on this system forever.
I don’t want to be in this shelter forever.
While I’m grateful that at least we are not on the streets, I would like some stability for my daughter. It also terrifies me that I’ve never known housing stability and that once I get into my own place, I could lose it at any minute.
That’s a major thought that’s always with me: The instability of poverty.