When it's just easier to die.

Article on CTV online about those suffering from long-Covid, and chronic mental illness seeking medical assistance in dying.

The government as a body is telling people that they're willing to assist them to death because they don't have enough money to live with dignity. That is a pretty clear signal to me that, unless you are able-bodied enough or able-minded enough to work to produce profit, then you don't have any place here.

This really hits home, this is something I've thought about often. If my health keeps going, and it's just too much of a struggle, I'd liquidate my life and just end it as painlessly as possible. 

Being hospitalized was so difficult, and I had my mother to help me. Alone, I don't know if I could do it. The financial strain. The stress. The loneliness. The support systems are just not in place. You need money. 

 I saw some tweets pass about folks being denied help from disability programs, but being approved for medically assisted suicide. What message does that send? 

People with Disabilities are choosing to die through Medical Assistance in Dying (MAiD) because they can't access the money they need to live.

Does that sound like a society that is fair to you?

— Naheed Dosani (@NaheedD) July 12, 2022

right now in canada there are human beings having to choose medical assistance in dying because they cannot afford to live. they cannot afford rent. they cannot afford medications. they cannot afford food. the pathologies of poverty are killing people. what about this is just?

— Andrew Baback Boozary MD (@drandrewb) July 12, 2022

Hospitalization, bile, barf, blood . . . and more!

Well, it's been a while.

I was hospitalized from October 25th 2021 to February 22nd 2022. I've been home over a month now.

I'd been having some gut pain, that felt like severe indigestion. I was powering through it, but my stomach was hard, and I had trouble moving. It would come and go. I didn't have the money to see a doctor on the private side, so I was betting on it just going away.

On the morning of the 25th, the pain came back, and since I work from home, I told my boss I was going to lay down for a bit. Soon I was throwing up bile and was on my knees, unable to move. I asked my mother to call 9-1-1.

I was transported by ambulance to Pierre-Boucher Hospital, where I was put in a triage room. I was forgotten there for what felt like hours. I was unable to move, and in extreme pain. I kept saying "Aidez-Moi!" and eventually somebody found me, and yelled at their co-workers about forgetting me. I was in Emergency Care for a while, where I was heavily drugged, but remember several beds all lined up with other Emergency patients. I was soon put in a shared room. 

I spent three weeks at Pierre Boucher. My memories are not good ones. I was in pain and couldn't move. I relied on rude orderlies to clean me, or to go to the bathroom and it was dehumanizing.  When I went for scans, I'd be in dank basements. My roommate had a lot of loud guests, who were sometimes crappy folks with shitty opinions. 

I was told (or at least my family was told) that I had severe pancreatitis, with a major infection. I continued to throw up bile, my stomach was rock hard, and I couldn't move my torso. Tubes were put in my nose to supplement my nutrition. 

I remember not being allowed to drink water. It was hell for me. I remember thinking about water and thirst all the time. Sometimes I would sneak some. 

When I was taken into care at Pierre Boucher my mother gave them my anti-depressants. Unbeknownst to me (since I was in and out of consciousness) I was not being given my drugs. After two weeks, I stopped sleeping, and after 5-6 days of no sleep, I went into a psychosis. 

I was extremely paranoid. I believed the male orderlies were disgusted with me and actively trying to harm me. I thought there was an elaborate situation that involved a managing nurse being drunk, a shooting, and intentional, malicious intent towards me. 

I called my mother (which I don't remember) and my brother, and after a while they realized something was wrong. I can remember talking quickly and explaining the situation to my brother (there was a shooting, I don't feel safe here). My brother called the hospital and alerted them to the situation.

I was then under the impression I was moved to a basement, and had some sort of Stanford Experiment situation going on. My reactions were being tested. I thought I was being pushed in order to illicit specific reactions and possibly uncover hidden trauma. 

I pulled out my feeding tube. 

I thought my nephew was there, and my brother, and that they were in another room talking about the psychological experiment and my nephew was upset about it and my brother was explaining that it was for the best. 

My mother tells me shortly before the psychotic break, my eyes darted back and forth and I was speaking increasingly fast. I completely lost my mind. I don't know how long it took to find it. Memories are fuzzy. 

Shortly after this I was transferred to the CHUM hospital. Night and day. The CHUM is brand new, state of the art, and offers private rooms with beautiful views of the city. Pierre-Boucher looks like a soviet hospital in need of major repairs. 

My view for several months.

I was at the CHUM until the end of February. For months I was bed ridden and had tubes in my nose for force-feeding, and also to empty my stomach of bile. I threw up a lot, until they put a 2nd tube in me (for the bile). I had a tube put in my side, where bile came out as well. 

Tubes and blood.

They went back and forth with tubes, they would think things were better, and remove the tubes, and try and have me eat for a few days, and when I would throw up bile, they would re-insert the tubes. There was a method to it, they'd put lubricant on them, and have me drink water to swallow the tubes. One time a less experienced nurse tried to do it and just kept stabbing me in the sinuses, hence the blood in the picture above. 

They installed a "picc line" which is a permanent port for intravenous drug administration. 

They had to wait for the severe infection to lessen before they could operate on me. 

I became diabetic. 

I went to countless scans, drank awful liquids, has procedures done where they went in through my throat with large tubes. I would cry and panic before hand, it was so awful. I begged for them to sedate me. 

They would just show up in my room and say "time for a scan" and I would never know what type of scan it was. Sometimes I'd be in the big one, sometimes it was x-rays, sometimes I would have to stand on this large moving platform that would move me around. 

Sometimes they would say "time for a procedure" and then I'd get nervous. Procedures weren't about discomfort, they were usually painful. I never new what I was heading for.

At one point they brought me in for some kind of procedure that involved me on my side, and their using mechanical arms to stick needles in my sides. I remember it being painful. 

The worse was the procedures where they would go in through my throat. They were terrifying. I have a strong gag reflex. They were just the worst. 

In December, the hospital ward was closed to visitors due to increasing Covid-19 numbers. This lasted for weeks, into January. I spent Christmas and my birthday alone. I remember nurses coming in past midnight to give me a shot of painkillers, and I mumbled, "It's my birthday." They wished me a happy birthday but I didn't believe them. 

On January 27th 2022, I was operated on. They removed my gal bladder and looked in on my pancreas (which was mostly dead). They made a bypass from my stomach to my intestines, because I now had gastric paralysis from not eating food myself for several months. The bypass would allow food to bypass my stomach if necessary. They also inserted a tube in my stomach, where liquid nutrition could be directly pumped into me. 

The official report says:

Diagnostic postopératoire: Obstruction troisième duodénum, pancréatite nécrosante.

Opération pratiquée: Gastrojéjunostomie, jéjunostomie d'alimentation, cholécystectomie.

I woke up to a shock. I was in a lot of pain, and when I looked at my stomach, the surgery had been more intense than I had anticipated. The surgery scar/wound was nearly 9 inches long. My insides hurt. 

Post surgery realness.

I told the nurses I was in pain, and they gave me some type of painkiller with a button so I could self-medicate. You could press it 4 times an hour. They took it away eventually because they said I pressed it like 157 times. But I was in pain.

Post-surgery was rough. I could move even less and was in a lot of pain. I was on opioids. Not that I wasn't before surgery. I can't even imagine the amount of drugs I'd been on. 

Because of the danger of opioids I could only get shots every 6 hours. I watches the clock like a hawk.

Eventually a nurse found me crying alone and saw my mental health was not great. She then allowed my mother to come and visit me on occasion. It made a world of difference. Being in constant pain alone, feeling no care or affection for weeks was brutal. 

A few days post-surgery a nurse came in and started talking to me. This guy wasn't my favorite, he always seemed annoyed and I got strong "I don't like you" vibes. He told me I had to start getting up and walking around and basically that I was being a baby. I was devastated. I did not consider myself to be lazy or a shitty patient, and I could not imagine getting up and walking. I couldn't even sit up. It took me another week or so before I could move around well. 

Then, the goal was walking as much as possible, to get me ready to go home. Eventually they also started giving my soft foods to try and eat. They supplemented my calories with liquid nutrition through the tube in my stomach. They call this gavage in French, which is technically also a word in English, but people don't seem to know what it means. It's tube feeding / force feeding. 

They sent me to "the pain clinic" where I was jabbed for painful spots, and then stabbed with a needle to administer some time of pain killer. It was a procedure that was painful and difficult. A lot of the procedures I went through I went through without any information. I was never aware of how much pain I would have to tolerate. It was always frightening. 

Soon the nurses started asking me to do my own diabetes needles and shots, and also start paying attention to the gavage, since I would have to administer it myself once at home. This made me really nervous. Pre-surgery they had a representative from the company that made the gavage pumps visit me for a tutorial. I had a panic attack and cried. She left. 

After a few weeks, I got the good news that I was no longer diabetic. A small portion on my pancreas survived. I cried with relief. It was good news. 

Throughout this period, my friend was navigating disability insurance and taking care of the paper work. Early on in my hospitalization I was completely incapacitated, and remained so for months, so her help was invaluable. She has previously worked for Services Canada, so she knew what to do for unemployment insurance, until long-term disability insurance could kick in. She took care of everything, and I would occasionally sign something or have to call in somewhere and tell them she was helping take care of me and that I was authorizing her to speak to the insurance company on my behalf. 

During this period my dog with with my mom, who was in communication with my friends, and was visiting me once or twice a week. My friends had messaging groups to keep each other abreast of my status. 

I facetimed with my brother and mother often. We had a nightly call. As I started feeling better I could text and talk on the phone. Some days I didn't have the energy to. Some days were good days and I could.

My mother would visit me and be encouraged after a good day, and then I'd have a bad day and cry and moan about the pain and she'd leave discouraged. 

One day I asked the nutritionist if I could eat some solid food, and asked for one of those grocery store-style sandwiches that's white bread and chicken salad. They're all soft and mushy. She agreed, and I started getting them as a meal, with yogurt and crackers and cheese. They'd give me Ensure (which I wouldn't fucking touch with a 10-foot pole) and ice cream and a lot of protein rich soft foods. I'd get the soup of the day, but enriched. I did not want to eat any of it, with the exception of the chicken sandwich. But after a while, I hated eating. It was all the same, and it was a struggle to eat as much as they wanted me to eat. I was surprised by the amount of sugar and processed foods they gave me. 

They were also supplementing my calories with over-night force-feeding. So I would wake up feeling bloated and disgusting, and then they would expect me to eat breakfast. 

At one point they gave me muscle relaxants post-surgery, and I had to stop taking them because I would sleep until noon and be useless all day. 

There was also a point where I refused a pill to help me sleep because it gave me crazy fucking nightmares. It was like a night terror pill. When I mentioned it to one of the nurses he said, "oh yah I know." 

At one point in February they told me they were going to send me home within a few days. I was terrified. I had constant medical care for 4 months, and now I'd be on my own, managing my own drugs, and also administering my own nightly force feeding. 

I cried from panic several times. 

On the day I left, I wore pants and underwear for the first time in months. I joked to the nursing staff that my legs were hot.

My brother, was really excited about my release. He'd been very positive throughout my hospital stay. He visited often. He planned on being the one to pick me up and drive me home. 

We went through the drive-thru at McDonald's and I got a children's cheeseburger. It was the best food I'd had in months. 

My dog was happy to see me, but he was also happy to see my brother and mom. He was just happy to have family over. We thought he'd keep trying to stay with my mom, but he didn't. He slept with me every night, and even cuddled, which he never does.

I had a weekly visit from a nutritionist, who would review what I'd been eating and make sure I was eating enough protein. As I ate more, she diminished the amounts necessary for my force feeding. 

I detest force feeding so much. It's a disgusting feeling. I've been off of it for a few weeks now, and I'm over-joyed by that development. The tube itself will be removed by the end of the month. Then I will be able to let the wound heal - and finally not have open wounds anymore. 

There's a section of my upper butt/lower back that I still have no feeling in. I think this might be because of the epidural I got during my surgery. I also have a large section of my left thigh with no sensation. I can actually feel the large dead spot. It's very weird feeling. This happened one day when I was getting an injection in the thigh. I was getting daily injections in my thigh to avoid blood clots. The injections burned, and one day they must have hit a muscle.

It's been a slow recovery, and I need to see a physiotherapist because my muscle pain is significant. Some days by the end of the afternoon I can barely move. Sometimes I go to bed partly due to exhaustion but mainly because I can no longer move my body. 

It's been a lot. I've only touched on some of what I went through. 

It'll take me a while to heal, and to just process everything that happened. 

I am still in shock from it all.

Conan Talks About Norm Macdonald

 The passing of Norm Macdonald was a hard one for a lot of people. I adored Norm, I own Dirty Work on DVD for crying out loud. 

Like others have been saying, Youtube his greatest hits, "the moth joke" and the Courtney Thorn-Smith / Carrot Top joke.

A relapse in time.

 It is now Tuesday.

Thursday, we had an emergency plumbing situation at the duplex. It involved opening walls at my mom’s place, and water accumulation in the crawl space. What we thought had been resolved, had not been. The emergency plumber mentioned all the corrective work that would be needed, and I spiralled.

I went upstairs, to bed, and did not sleep. My heart raced. I was ill all night, running to the toilet, I tried to stick to the edge of the bed as not to disturb my dog. He kept trying to sleep between my legs or in the nook behind my knees. He became hostile and irritated. He would stand on my legs and stomp. He is not a dog who is sensitive to when I am ill or in pain. When I had bronchitis and would have coughing fits and have to shoot up to cough and breathe, he would refuse to get up from between my legs, half asleep and adamant I go around him. 

My chest was so hot, I couldn’t put my head down to the pillow, not fully, because all I heard was my heart racing. All I was hearing was how hard my heart was working, how close it was to exploding.

When I say my heart raced and my thoughts spiralled, I don’t think that does the experience justice. 

My chest was hot, as if I’d swallowed too-hot coffee that then seeped through my throat and lungs, spreading throughout my ribcage. But it never cooled, and there was no relief.

My mind was barraged with incessant thoughts. This place is a money-pitt, I cannot afford it, what have I committed my mother to, I am unable to take care of myself, I will lose my job, we should sell the duplex, what if we do not recoup our money, all of it can go to my mom, where will I live, how will I take care of myself, I can’t move, that takes money and energy, I am alone, how can I do this, if my mom dies, I have nothing. 

There was a lot of focusing on losing my mother, and what that would do to me. How that would feel. In earnest, it felt like she was dying, like I was losing her. That I was actively grieving and losing her. How alone I would be. How nobody will ever love me like my mother loves me. There is no love so unconditional, not that I have experienced. 

Thursday was sleepless. I e-mailed in sick Friday around 5 am, and when my mother came upstairs to check on me, I was still spiralling. I would have bits of sobbing, and was also trying to figure out emergency cleaning services for our crawl space. 

I reached out to some friends, and those who live with anxiety shared breathing exercises and some prompts. I tried to breathe it away. Sometimes it would mellow things, sometimes it was like throwing an ice cube onto a bonfire. 

I have not had a panic attack, or suffered acute anxiety in years. Not since school. I naively, thought those times were behind me. 

I had been off of Effexor for months, and even through the pandemic and quarantine, I thought my depression was level, and relatively good, considering. But I was clearly wrong.

Over the course of Friday I also asked around if people knew of any emergency services. I called a help line or two, 

“Are you suicidal?”

“No.”

That’s the extent mental illness emergency care.

I called 8-1-1, the social side first, who of course confirmed that CLSC wait lists are months if not years long. I remember asking about services in English and they said that list was over 5 years long.

I called the EAP line at work, and they said it would take 3-5 days for someone to get back to me, and that the services were only short term, 3-4 sessions. So again, nothing long term, and nothing in the realm of emergency help. 

I called my family doctor office for an emergency appointment, I would get one for Tuesday. 

I was unable to eat, I was so anxious and nauseous and panicked. I managed 4 triscuit. I drank water. 

Saturday morning things were not getting better, and I asked a friend if she would be willing to drive me to the hospital. She was pro-active and said to keep her on stand by if I wanted to go. I took a shower, and put on clean clothes and asked her to bring me to the emergency room. I ate a banana before leaving, I drank water. I brought myself a bottle. I tried to wear clothes I would be comfortable in if hospitalized. Layers. 

The drive was more pleasant than I would have expected, since my friend E is a trained interventionist and just a really good person to have in your corner when things aren’t going well. Her tone was even and calm and she made me feel calm. Even when she drive the wrong way up an emergency bridge meant only for ambulances. The signage was shit.

She dropped me off and I cried thanking her. I made my way to the emergency ward, through taped off areas and security stations asking us to change masks and sanitize our hands. 

Once in the ER, I told the nurse I was having heart palpitations and trouble breathing and that I was having a panic attack that would not end. 

I sat until the triage nurse could see me. Maybe 30 minutes. Once seen, I was given a yellow bracelet. 

Yellow is potentially covid-related, green is not. 

They called me in for a quick ECG, in one of the ER consult rooms. I went back to wait. They called me in to give me an Ativan. I went back to wait. The took my blood pressure. I went back to wait. Eventually I saw a doctor, and he said they would do a blood test, but that things looked good. I went back to wait. I was called for the blood test. The doctor told me things looked good, that I would get some emergency meds (clonazepam) for a week, until I could see my family doctor.

He said I could go home, I asked how I would get through the night (since it was now past 10pm, and he said he would give me a pill, something in the Ativan family). 

I got to the hospital around 12:30 pm, and left around 10:30. I took a cab home. 

I got home and took the pill, and slept for a few hours, but woke up often.

Sunday was a hard day, I still felt like I was in crisis and I did not know what to do. My mother came upstairs and stayed with me. I cried. I rested. I hugged her.  I still did not want to eat, but for some reasons bananas were it. And remain it. I had a banana. Then 1/4 of a bagel.  My mother spent the night, I cried myself to sleep. I was afraid. I was fragile. I felt like nobody could help me. I felt impaired. I felt disabled. I felt like I would never be able to take care of myself properly. I was afraid that the comfort I had then and there with my mother, in her arms, was the only comfort I would ever feel, and that it was all I had, and that it would soon be gone, because one of us will outlive the other, and I very selfishly hope it’s her.

My friend E dropped off food, frozen dishes and fruit and things to get me through. An additional kindness.

Monday was more of the same. Less painful physically.  Uneasy. Fragile. I felt like I was a wee bird. 

My friend checked in, but I didn’t know how else to tell them I wasn’t doing well.

I was able to have some soup. Small portions of food.

Today is Tuesday. I was feeling low-level anxiety about the phone call with  my family doctor at 3pm this afternoon, and I was not incorrect in my intuition. 

My doctor sounded tired and uninterested. It felt like I had to tell him what I needed, he made no suggestions. He said he would prescribe a low-level Effexor again, for 2 weeks and then check in. I said I needed therapy, and he said everything is full. He offered no suggestions. He said he could send me a referral for the CLSC wait lists. When we hung up, I did not feel seen, or helped. 

I cried. 

I told me mom I guess I would be going back to work tomorrow, to which she replied I should call him back and ask for an extension. So I did. His secretary was irritated and said he would call me back at the end of the day.

He called me around 5:30, and I asked for a referral to a therapist, and he said it would come with the CLSC referral, that they were one in the same. i asked about going back to work, and he said he’d give me a note to be off until Monday. He did not offer it. I asked for it. 

He sounded tired and uninterested, so I tell myself he is also burnt out. He is also going through a lot.

But as someone who still feels a hair away from a crisis, I am devastated  by the emergency services I was unable to find. I feel abandoned and completely disillusioned by the mental health marketing of every goddamn thing. 

It’s all bullshit hash-tagging and sales speak, the bare minimum. Add the terms mental health, diversity and if you’re dangerous, social justice to your buzz words and then leave us all to rot. 

I have never felt so fragile. 

I feel like I have been snapped in a way that’s never happened before. I feel like I am walking on eggshells, but I am the eggshells. 

When 2020 becomes 2021.

I have been off of work since the 23rd of December. I am, 8 days later, still exhausted. This year has been difficult. The quarantines, working from home, job stress and job change, health concerns, the American election, racial justice protests / the murder of civilians, the climate crisis, my body, my health, my limitations, my damage, all of it at once, and yet sometimes only one of those things, very loud and in painfully great detail.

I've not written much this year, as I've been tired and feeling generally untethered. I spend my day sitting at home, in front of a computer - so to continue to do that in my off time, I hold no desire for. I sit and think and compose thoughts to myself, but do not want to sit in front of a computer, again, so everything just drifts off. 

The last few months have been about accepting a new position at work (a one-year contract) which will increase my salary by about 100$ a month. Not nothing when all you have is debt. 

In a few days, I will have a room-renter. In her early twenties, she will rent the room for a few hundred dollars a month, which will help me throw money at the ever-present aforementioned debt. 

Lately I've been thinking a lot about how the things you own end up owning you. How these social contracts of ownership and adulthood, only ever just reinforce dependence on a system that uses you so fully. I think of the alternative, working hard on the land and isolating yourself - but being fundamentally lazy, that only seems like an answer for the highly skilled and motivated. I am neither of those things.

I've been watching a lot of horror films over the holiday. Zombie films are always fascinating to me, because of the way in which people are represented as ultimately selfish and child-like. Yes, but also, there is so much reassurance in the group, which really is dependent on the reproduction of invisible rules. How these invisible rules are not necessary, but are, in a world that reproduces them daily. 

I think of a mortgage. I think of borrowing large sums of money from a bank in order to slowly and painfully, reimburse them. I do not own my home. The bank does. I take out a loan, in order to pay for repairs and improvements. I have hundreds of thousands of dollars in mortgages and loans - and who am I? My job isn't great. It's an entry-level clerk job. I have no wealth. I've only been able to access these funds due to the government's name on my cheques and the amount of capital my mother was able to bring to the transaction. 

I think about if a bomb hit tomorrow. With the world in disarray - would all of the automatic payments keep taxing my accounts? What are the financial rules when we are so close to it all falling apart? 

This past year has been difficult.  It's been confusing and anxiety-provoking. This isn't unique to me. I think we're all looking around and seeing how fragile all of it is. How neighbors can be helpful, but they can also be fucking anti-masker idiots who would risk us all to not be inconvenienced or directly interpellated in any way. 

This year has further isolated me. It's been difficult, but on some days, not so much. I have, after all, lived this way for over a decade. 

I look at some friends differently. Some are incapable of being alone. Of making small sacrifices. Not many people are able to stay home, alone, for the greater good. That speaks to a great weakness. We all have our frailties, being alone is not mine. 

Looking forward to 2021, I do not expect much to change. I will be working from home until at least the summer, I will be working this new contract, and learning new things, and being challenged. I can, however, return to my clerk job if this new job does not work out. A subtle safety net that makes all the difference for me. 

The winter and the dark make quarantine harder, so as we push through 2021, the weather will improve and the sun will come out. 

I don't know that things will ever go back to how they were before 2020. Too much has happened. Political systems have been shown to be lacking in a way that even the obtuse can't ignore. The fragility of it all, is so obvious now. Our dependence on commercial systems. How quickly panic can spread. How little it takes for things to get scary. 

I don't expect 2021 to be any easier. Just different. 

For now, all I am is exhausted. 

Ghost of a Podcast - How To Face My Face

In a Crisis, We Can Learn From Trauma Therapy by Eva Holland, and EMDR links.

In a Crisis, We Can Learn From Trauma Therapy by Eva Holland on the New York Times website. The article talks about E.M.D.R. I listened to a podcast episode by Rich Roll where EMDR was discussed briefly as well, apparently, it came about through the studies/practice of a therapist who would take walks with their patients, and the discussion coupled with looking around had interesting effects.

Anyway, Eva's article is about cultivating resilience in difficult times. It's an interesting thing accessing all sorts of media about wellness and mental health now that the usually neuro-typical are living through the 2020 quarantine and general garbage fire.