Hope is tricky business. On the one hand it keeps me alive, it fuels my tenacity, it helps me take a deep breath and do my best to understand other people’s perspective so I can better build communication bridges.

But begging for my life on the internet, staying alive month to month on donations from strangers, attempting to get a foothold of logic in policies and ways of thinking that are entrenched in illogical bias: these rob hope of its strength. And when you’re approved for Medical Assistance in Dying (MAiD) on quality of life, despair is an easy thing to teeter into.

Severe ME in Canada: a Herculean effort to survive

That said, I’m grateful for MAiD on quality of life, because it helped me step away from one measure of terror: the terror of the brutal kind of death I face when I run out of money. But having to choose any kind of death is still terrifying.

While it gave me the only empowerment I have right now, it’s not the empowerment I’ve been fighting for. And when I get a month away from running out of the GoFundMe money that’s been keeping me alive, I feel myself start to teeter into despair. That’s combined with the fury and frustration that I am facing an entirely avoidable death. This to me is the equivalent of dying by slipping on a banana peel.

So in writing this, trying to pull my thoughts together through brain fog, which I liken to a drunken librarian wandering around a decrepit library trying to find things, so intense is that impairment, I’m realising you don’t know who the heck I am.

The Canary has written some articles about me. In brief, I’m a 45-years long Epstein-Barr virus (EBV) myalgic encephalomyelitis (ME) patient fighting to survive in Canada. I live without even a medical services billing number. This means there’s no data for tests, medicine, or proper physician education to be created. It means the system fails to estimate the amount of money for the disability and disease supports I need. If a healthy person were to try and survive on my current supports they would become disabled, deteriorate, and die.

How do I communicate the Herculean effort it takes day by day to simply survive?

A former supervisor of mine said to me about 25 years ago:

it must be nice to be a PWD (person with disability) on assistance; you get to sit around, eat bon bons, and watch TV.

After I took the knife out of my chest, my reply was:

No, it’s like being a very large tiger trapped in a very small cage chewing on the bars.

A week in the life of a person with ME and no support

On a week to week basis, this is just a tiny sample of what I deal with:

• Advocacy: pulling together my long viral ME beleaguered brain. My dyslexia uses five times more energy to process reading and writing, and this collides, worsening this. In June for instance, I had to turn my journey through hell into a haiku for the British Columbia budget committee to advocate for ME patients in my province.
• I put together a petition to the government of British Columbia. This calls for an end to the systemic neglect of people living with ME. I’m constantly pushing it to accrue enough signatures to have an impact.
• Attempting fruitlessly to get a constituency appointment with my Member of the Legislative Assembly (MLA) David Eby, who’s now the premier of British Columbia.
• Producing a podcast, managing a GoFundMe, and doing social media updates.
• Speaking to and educating politicians, bureaucrats, advocates, journalists, lawyers or doctors with energy I don’t have, just to have a chance at survival. Each time I think if I can just say it ‘right’, use the ‘right’ words, be some kind of magically eloquent TED Talk, that maybe this helps me, maybe this saves my life, maybe this stops happening to people like me. The pressure is immense. But bias is a roadblock. In one alarming exchange with the Ministry of Health, the director emailed me with blatant misinformation that ME is diagnosed when you rule out everything else. I had to share the World Health Organization’s criterion.

No medical care and limited disability support

• Attempting to get physicians/specialists who keep playing ‘pass the potato’ to look at what research there is into my disease. This is so we can try what is available and covered within the system. Due only to lack of disease and disability supports, I have deteriorated from 9 health issues at the beginning of my disability journey to now over 30 health issues.
• Medical trial and error outside of the system. This has involved reading countless medical papers. The process is brutal and problematic all on its own, but there is nothing else for people like me.
• Obtaining critical support devices like braces, orthotics, shower supports, accessibility/mobility devices, a bed, etc. These are either not at all or only partially covered, and require impossible paperwork. I’m also experiencing prejudice from the government medical request division. People hired as medically trained bureaucrats are acting like they’re medical providers. For example, medical providers are disregarding assessments. Instead, they have asked for naked pictures of body parts to assess requests without having the in-person data, my full file, or liaising with other providers to be able to understand what they’re looking at.

All on top of the day-to-day

But then there’s day-to-day things like medical appointments, treatments, and picking up pharmacy and supplement items. Every day, I have to remember to take those numerous medications at different times of day and in the different ways they need to be taken (AKA with food, different times than other meds).

That’s all without managing my baseline needs that my disability makes into a kind of Sisyphean nightmare. This includes things like:

• Getting groceries.
• Attempting to eat healthy – even though I’m no longer physically able to cook or wash dishes.
• Dealing with the expense of not being able to wash dishes (AKA paper plates, disposable cutlery, etc).
• Having to buy water to drink since the water in my apartment makes my digestive system radically worse.
• Using the bathroom an unusually high amount because of my edema. Just having to get up to use the bathroom is a massive energy expenditure.
• Trying to manage without housekeeping or laundry supports with no energy and no physical ability to do these things.

Because of all this, I regularly end up at tenancy risk or I dangerously capsize myself.

A constant battle

As I deal with all this, I experience regular daily negative health impacts because of systemic ableism and disability bias. For example, in a 20 minute mobility scooter trip I will have at least a dozen encounters that live in the land of ableism or disability bias. Full on disability prejudice is a little overtly less common but when it happens it’s crushing.

It’s even present in my home. The management in my government-run low-income older people and persons with disability housing have subjected me to this repeatedly.

I have been engaged in a 14-month and counting battle to get management to fix the downstairs duct work when it started ventilating into my apartment, and precipitating multiple health impacts. This included the huge stress of being forced to take this to the residential tenancy board of BC.

Eventually, they cleaned the building-wide duct work – for the first time in the 24 years I have lived there.

This is just the smallest taste of what I have been going through for decades.

Let’s be clear, I do all this through excruciating pain levels. I haven’t seen pain below a 7 out of 10 for the better part of 5 years. The only part of my body that doesn’t hurt is the tip of my ears.

And that doesn’t even touch on the crucial human need for social connection and some measure of something that resembles fun. If I didn’t have something to look forward to, how do I pull together the fortitude and courage to keep fighting?

Social isolation of an ‘invisible’ illness like ME

So, if in reading all of this you think ‘how in God’s name has she kept it together to keep fighting?’, know that the vast majority of people would have given up long ago. Both friends and medical providers have regularly said to me they wouldn’t know how to do even a quarter of what I’m doing.

Then there is the difficulty of ‘invisible’ illness. Friends often tell me, ‘it’s hard to understand how sick you are because you pull yourself together when we see you. You don’t let us see you when you’re falling apart.’

But my knee-jerk reaction is to hide how sick I am. This is because when I first became disabled by myalgic encephalomyelitis at my second round of Epstein-Barr virus at age 29, I lost every single solitary one of my friends. I can’t afford to become more isolated than my disease already has made me, because I would definitely fall into that chasm of despair. My disease already limits the amount of friends I have due to low energy.

No support to live: I’m not okay

But the invisibility of facets of my illness doesn’t mean I’m okay, and it sure as heck doesn’t mean I’m faking it. The invisibility is often a result of my propensity to mask symptoms. ME patients can sometimes short-term push outside our energy envelope, but as one physician said, if you do that it’s like borrowing money from the mob – you will pay and then some. This is most often how people with ME worsen and die. Maeve Boothby O’Neill is one of the most documented and horrific examples of this, but her story is not at all rare.

And that doesn’t include the day-to-day disability and disease bias that I experience. Less than a month ago, I learned a friend of a friend (a retired nurse no less), thinks I’m faking my condition. This is systemic miseducation. It is what happens when there’s extremely limited research money for any disease that afflicts women at higher rates than men – as almost all long viral diseases do.

The situation is no better in any other country. So you can see how this lack of correct medical provider education affects not just public policy or medical experience, but causes misinformation with friends and family, impacting connection.

I can’t do this alone – here’s how you can help

So I continue to fight, but I can’t continue to survive by myself.

If you have the courage to see yourself in my story, in my fight, and you don’t want this to happen to you or your loved ones, then I ask you to stand with me. The petition is the easiest and quickest way no matter where you live, keeping in mind what happens in one part of the world affects us all. Disability is something that comes for everyone. And my particular disease – long viral myalgic encephalomyelitis – is coming for 36 to 37% of the whole world, so it will impact you.

The simple act of signing a signature might seem small, but it has been my experience again and again that the little things can make a big difference if enough people act.

Don’t let bias and prejudice steal your hope. While hope is indeed tricky business, know that when we hope together, that not only do we have the greatest possibility of change, we also have the lowest risk of slipping into despair.

Featured image via author

By Marcia Doherty

This post was originally published on Canary.