Vulnerability in Dystopian Times

I took a walk recently with an acquaintance. It was a lovely mild winter day. We were walking in a quiet area near frozen canal waters, closed to skaters due to the mild weather.

We talked about many subjects, but in the air, was a feeling of deep worry. We were surrounded you see, by hundreds of big rigs, trucks and SUVs occupying our town.

I never expected to be forced to leave work permanently. I never expected a global pandemic. I never expected to have my city occupied carelessly and arrogantly by other Canadians. I never expected, as I told my acquaintance, that I would face a personal, global and now local dystopia.

But here I am.

And here we are.

What led us there? I have my theory, and it starts with vulnerability.

We may not realize it, but we live in a world where vulnerability is not only frowned up and discouraged, but also weaponized in a way that benefits only the evil amongst us.

Why did I hide the extent of my illness from people at work? Because I feared it would be used to toss me aside, deny me opportunities and give me negative performance reviews, leading to my firing. Had I suffered from debilitating mental health issues instead of physical issues, I would have been even more fearful.

My worries came true.  When I couldn’t go back to my extremely demanding job or even work fulltime, I was told to just do it, or leave. There was no room in that organization for perceived weakness or accommodations for an energy limiting chronic illness.

Why are so many disabled individuals denied jobs and financial support? Because there is no room in our world for perceived weakness and vulnerability. If, and only if, you overcome whatever ails you to be as productive as abled people, will you be given a chance. This is ableism.

The abnegation of vulnerability is rampant. It is at the root of the emotional repression (outside of anger, of course) at the heart of toxic masculinity, an exclusion of anything socially seen as not utterly alpha male, keeping misogynistic beliefs well fed.

On a materialistic level, small cars almost disappeared from our roads, taken over by expensive SUVs, and bigger pickup trucks to protect ourselves from others. They are here, intimidating and fueling hate.

All this refusal of vulnerability doesn’t make us more willing to help people in need. It makes people who have had to hide their suffering turn around and deny comfort to others. It stifles helping and sharing efforts and reduces them to quick monetary gifts.

Empathy, so rare these days is also often refused by the people who need it the most. How dare you think I can’t handle X?

“You are so strong”, I’ve been told. Funny how saying this often frees us from helping. Vulnerability is seen as a moral failing, leaving us with very few emotional supports.

We have homeless populations because we want to believe that becoming homeless is a moral failing and, as a society, we elect political parties that will not force us to pay more taxes to help the issue. Same with contributions to healthcare.

Which leads us back to the occupation. It started by a claim that public health mandates (requiring vaccination and mask wearing) should be lifted everywhere in the country. Loudly and consistently, they yelled “FREEDOM” and harassed others in a manner that makes you think it’s more about doing whatever they want, whenever they want, than a genuine annoyance with mandates.

In the past 2 years, you might have questioned why it was so hard for a minority of people to wear a mask for the time it took them to shop for groceries. Why these individuals often infantilize protective actions by calling mask wearing putting “a diaper on your face”. Why so many simply refuse to have a tiny needle vaccinate them. They may suffer from needle phobia and never want to admit their vulnerability, or refuse to entertain the idea of sickness and death.

Maybe, just maybe, we created a world where vulnerability is so disregarded, so hated, that many will go to war over recognizing it in any form.

I have been more vulnerable these last 3 weeks that I have ever been in my life. Being disabled and financially at risk, in a global pandemic, in a neighborhood occupied by an angry mob determined to look strong while intimidating and harassing others.

But true strength never comes from denial. It comes from the acceptance of reality and the associated fear, as well as sharing the load to overcome, whenever possible.

Until we accept vulnerability as an inherent part of our lives and strive to offer collective support, anger filled events will become more and more common in my city, and everywhere else.

New Year, New Age

A new year is ahead. Contrary to my high expectations for 2020 and 2021, I’m keeping things real this time.

I saw a little game on Twitter where you snapped a pic of a continuous loop of words and the one you fell on was to be the word representing your year ahead.

Mine was “basic”.

Can’t argue with that.

Real and basic have been brought to me by my health issues, then the pandemic.

Before Omicron slowly hit us in late 2021, I was keen to see a new life chapter unfold, to meet new people and take part in new activities.

Yes, I wrote “new” three times because the old-old is very gone and the recent old is dreadful.

I recognize how privileged I am to be able to safely retreat from active life to keep my health safer.

But I also feel deep hurt at having been retreated from active life. Professionally, of course, but also by the lack of in-person encounters, sharing and caring experiences. The emotional loneliness is choking me.

It took me quite a while to let go of the idea of getting back to being who I was before going on disability. Then longer to see that many around me were no longer interested in interacting with a different me. After countless “everything is my life is more important than connecting with you”, I finally got the message last year.

The French have a saying “loin des yeux, loin du coeur” (loose translation: far from the eyes, far from the heart). I saw it more as far from the heart, far from the eyes.

Living alone with health challenges and no family to reach out to for help offers many challenges most people around me won’t imagine. Is it a lack of imagination or empathy, or both? Who knows, the result for me is the same.

There is a hurt that is deep when you tell people about your struggles and in return, they offer silence or platitudes, never emotional support or practical help. As the popular meme goes, the ones who’d rather give me a high five than help to save me from drowning.

Refers to a comic by Russian artist Gudim
(Drowning High Five: Image Gallery (Sorted by Oldest) | Know Your Meme)

I do have very good friends who live in other cities, with whom I keep in touch virtually for shared emotional support, and I have a few acquaintances here willing to go out for walks with me every once in a while, but when you spend weeks not seeing anyone you know and are left to spend the entirety of the Holiday Season by yourself for the second year in a row, it’s hard to hold on to a feeling of mattering.

Yet I matter to myself.

So I’ve moved to stop feeling like a beggar of people’s time, a beggar for help, a beggar to matter, by letting go of the people who had brought me there. I made room for the new in order to have a different life, more aligned with my emotional and practical needs.

But I can’t move on quite yet: the pandemic won’t let me.

And the in-between is often quite frightening. I may write an entire post about my nightmares and short- and long-term worries.

In the meantime, I’ll keep holding on to the hope that this is simply another pause on the road to better.

I hope.

Resolution

I can’t share banal conversation knowing what I know.

Knowing at my worst, you had no time for me.

Too busy achieving, too busy enjoying, too busy renovating.

Making me empty promises to feel good about yourself, righteous, empathic.

I’m tired of saving you from your thoughtlessness.

Your privilege and safety blind you.

I have no time to make the scales fall from your eyes.

Will they, even?

Tell me how everything in your life has been more important than talking to me.

I should be grateful for the crumbs you’ve thrown my way?

Why? You wouldn’t.

Yes, I’m less than now.

Be grateful.

I’m not sitting in darkness.

You’re willing yourself blind.

What you don’t see can’t hurt you?

Idiot.

“I did so many fun things this summer”

“But you didn’t see me.”

“No.”

Back to Normal

We’re hearing this expression less and less now, but for the whole of 2020 and part of 2021, it was THE thing to say to get the general population to wash their hands, keep apart, wear a mask, get vaccinated. Do X so we can “go back to normal as soon as possible”.

I was hearing even then though, that we would be under a Covid choke hold for 18 to 24 months, but that message was drowned out by greed tainted with toxic positivity and magical thinking.

Even saying “the new normal” was seen in the media as being too negative a concept.

“We’ll get through this.”

“You got this.”

“Ça va bien aller.”

Gag me.

Just a few months ago, business senior managers were in a tizzy to get employees working their offices to “get back to normal”. A franchise restaurant owner near me even took to Twitter to call on the federal government to force public servants to get back to work downtown so he could make decent money again.

Another silenced message is that no matter when this pandemic ends, it has already fundamentally changed how we see ourselves and the world around us.

Due to my interest in health, I follow on Twitter many accounts of medical professionals and researchers, caregivers, ill and disabled individuals. They will never be the same.

How can they?

The hospital doctors and nurses dealing with waves of unexpected level of illness and death, the caregivers and disabled left alone to deal with their needs or those of a loved one.

The people who required surgeries to get back to a healthy baseline or get rid of their cancers who were left to face additional, heartbreaking delays. Their loved ones witnessing these events, sometimes even having to mourn preventable deaths.

The families of individuals in Long Term Care lost a loved one, often in horrific circumstances.

The elderly who living on their own or in senior residences, so isolated that they lost a major chunk of their cognitive abilities, including the increase of dementia symptoms.

I see it in both my parents and my 89-year old aunt. Both my mom and her lost their will to do things that would keep them healthy.

The parents of young children moved from the stress of having them learn online all day, every day, to sending them to school and hearing every other day about a “case” requiring them to get the whole family tested.

And now Omicron, in indoor weather, on the eve of multiple festive gatherings for the many.

There is no going “back to normal”. For anyone.

The sooner we admit this as a society, the sooner we can start to make lasting changes and heal the many losses.

But society, led by the most privileged who lost the least, still refuses to accept this.

You cannot ask the benefactors of a system to change it.

We have to start doing it for ourselves and our near and dear.

Writer’s Block

I started this blog almost 5 years ago to formalize my thoughts and experiences, try something new, and see what life held for me.

Suffice it to say, life surprised me and brought tons of new things for me to experience.

Just not the way I had hoped.

After my fabulous Australia and New Zealand trip in 2018, things went downhill fast.

I started writing about these experiences, but then slowly started censoring myself. Not that I had less to say, I definitely had more but I knew personally most of my audience and I started worrying more and more about what they would think.

The loud chorus I heard was:

– “Don’t be so negative”,

– “Be the person you were”

– “Do more”.

– “Are you really still sick?”

– “How come, after all this time, the doctors don’t know what you have?”

– “Isn’t there anything else you can do to get better?”

Then the pandemic hit and I was too scared and not knowledgeable enough to discuss much.

21 months later, I see how much damage living confined lives (even after lockdowns were lifted) and mourning the lives we all had before hurt everyone around me.

The privilege of strong finances and health has sheltered many from the worst, but not everyone has been so lucky.

For every fun or kind micro-interaction at the grocery store, the pharmacy, or just walking around, I encounter many more difficult ones, brought on by exasperated and tired people, often worried about their livelihood and/or loved ones. And even from a pedestrian perspective, the road rage on the streets surrounding me is something else.

Since I haven’t made the jump from hurt and fragile yet, I can’t come up with “the moral of this story” material, or even how we can help ourselves out of this dreck. And it leaves me with very little writing material.

But I have plans.

Happy end of the year, all.

« Née pour un petit pain »

Mes parents, grands-parents et arrière-grands parents n’ont jamais fait assez d’argent pour s’acheter une maison.

Ma mère et ma grand-mère maternelle ont eu des problèmes de santé physique similaires, qui les ont reléguées beaucoup trop tôt à l’arrière-plan de leur vie. Ma mère a dû quitter l’école après sa 6^e année pour s’occuper de sa mère malade. Cette dernière n’avait alors que 44 ans. Elle a vécu 25 ans, essentiellement enfermée dans un logement.

Malgré un grand amour de la lecture, ma mère a souffert toute sa vie de ce manque d’éducation et je me demande maintenant si cette absence de stimulation cognitive a un jeune âge, n’a pas contribué à la démence dont elle souffre depuis quelques années.

Mon père vient d’une large famille pauvre qui avait à sa tête un père alcoolique et violent. À 18 ans, bien nanti de son cours classique, il trouve refuge au sein de la compagnie où Il avait décroché un emploi de balayeur, puis de représentant à commission.

Il a bénéficié quelques temps d’un salaire élevé pour le temps, mais vendre de la quincaillerie à commission, ce n’est pas fabuleux. À force de faillites et de reprise d’affaire en liquidation de la compagnie pour laquelle il voulait tellement continuer à travailler, il a basculé lentement mais sûrement vers le seuil de la pauvreté, nous amenant avec lui.

À toutes les semaines, il me montrait son chèque de paie et me disait de combien il avait diminué. La précarité financière, je l’ai comprise très tôt.

Malgré tout, j’ai cru pouvoir faire mon chemin en oubliant mes antécédents.

Erreur majeure.

« Né pour un petit pain » est, selon moi, l’expression la plus déprimante de la langue québécoise. Essentiellement, elle veut dire que ceux nés pauvres et sans statut social vont finir pauvres et sans statut social. Aucun espoir d’améliorer sa situation.

Depuis mon enfance, j’ai détesté ce concept. Encouragée par la télé américaine et la capacité de ce pays de croire que tout le monde peut réaliser ses rêves, j’ai continué d’y croire.

J’ai fait de l’amélioration continue mon champ de bataille au niveau personnel et professionnel.

La belle affaire.

Je ne savais pas, à l’époque, que les meilleurs déterminants de succès d’un enfant (mobilité sociale verticale) étaient le niveau d’éducation et le revenu de ses parents. Avec la 6^e année d’éducation de ma mère et le secondaire de mon père, la base n’était pas solide.

Je ne l’ai compris que beaucoup plus tard, avec le traumatisme psychologique et ses répercussions dans la vie de tous les jours.

J’étais fière de faire partie de la première génération de mes deux familles (avec un cousin qui ne me côtoie pas) à décrocher une maîtrise. Pourtant, cet accomplissement n’a jamais effacé le fait que mon bac m’a pris 13 ans, avec une pause de 10 ans suivant mon burnout à 22 ans. Mon père utilisait mon succès scolaire pour bien paraître devant ses pairs, mais ne voulait pas payer mes études. Travailler et étudier à temps plein, cela m’a coûté très, très cher.

Ce sont des choses qui arrivent quand tu manques de soutien moral et financier, mais là encore, je n’y voyais rien et me trouvais seulement faible et pourrie pour gérer mes affaires.

J’ai continué de travailler très fort pour atteindre un statut qui, je le croyais bêtement, m’offrirait une protection financière pour le reste de mes jours, quitte à travailler septuagénaire. Mais plus que tout, je croyais trouver au fil des succès professionnels, une porte vers des gens qui me comprendraient et me trouveraient acceptable.

Je vous laisse deviner comment le tout s’est terminé.

Je savais bien sûr que le sort peut t’enlever pleins de choses en une fraction de seconde, mais je ne m’étais jamais imaginée que mon corps allait flancher, tout seul et assez, pour que je ne puisse plus gagner ma vie. Ça, même en ayant vu ma mère et ma grand‑mère souffrir.

C’est fort, le déni.

Et l’arrogance.

Mon corps me force à tirer ma révérence de la scène professionnelle. Sans remerciements, sans fête, ma carrière est prématurément et abruptement terminée. Avec elle, mes espoirs de vivre assez protégée et entourée.

J’espère encore éviter le seuil de la pauvreté, mais en vieillissant, avec peu d’espoir d’arrondir mes fins de mois, ce n’est pas hors du possible.

« Née pour un petit pain » englobe tellement plus que jamais je le croyais. Oui, le bagage socio‑économique, mais aussi génétique et psychologique.

Avoir su.

Et ben, je savais, mais ne voulais pas voir.

Je veux croire que mieux s’en vient, mais après avoir vécu la pandémie et vu le haussement des barrières protectives isoler les moins bien nantis, ceux‑qui manquent de santé, d’argent, de pouvoir et/ou de liens sociaux. L’inconnu me fait très peur.

Et la démence.

J’ai vu comment la société dispose des personnes malades et/ou âgées, particulièrement lorsqu’elles n’ont pas d’alliés. Le changement climatique amène avec lui des tonnes de pertes et les plus chanceux crient « après moi le déluge, bandes d’idiots ! ».

Les films américains ne se terminaient pas comme ça, jadis.

Renewal

It’s spring. The time of year when nature wakes up and transforms.

We see it as beautiful, but I wonder if this transformation is difficult for the seedlings, the burgeoning flowers, the tree leaves.

Were they lulled into winter comfort and fear the big changes coming?

Do they even know what’s ahead?

As humans, more often than not, we fear transformation and changes.

It’s my spring too.

I see life changing transformation ahead.

And I fear big time.

Because, just like seedlings, flowers and trees, most of what’s to come is completely out of my control.

My health, my income, my relationships have transformed.

More radical changes are coming.

Instead of hostile pathogens, my body is fighting itself. How much of that fight can I slow down?

No one knows yet.

This week, I had to give up my job.

A heartbreaking decision because as much as I wanted to return, I knew my body could never support again what I did before.

My livelihood is now solely in the hands of dysfunctional systems. Beyond scared.

I’m down to a minimum of relationships, most of them long distance.

Not easy for others to see me as a different person, with different needs.

I did play “well enough” for so very long.

Now a little goes a long way.

Words of support can thankfully come in many different ways to warm your heart, but…

Lifts to hospital appointments, trips to grocery stores, seeing another person’s half face as you walk together have been rare.

You can blame the pandemic, but that type of support is family support.

You don’t have one, you don’t get to have it. Lonely.

And…

One way or another, in mind or in body, I will lose my mom this year.

She’s slowly walking away and there’s nothing either of us can do to stop it.

Change is coming.

Is there better ahead?

We can hope.

It’s spring after all.

My Heart

A decade ago, I was listening to a colleague sharing her feelings about her mom’s passing. “She lived a good, long life, she said, but it still hurts so much…”

“That’s understandable I responded, your mom, is your heart” I responded on instinct.

My heart is breaking. My mom is breaking.

She’s slowly walking into a world where she’ll remember nothing.

She’s not there yet, but she’s incredibly scared.

She often talks to me sounding like a little girl. The little girl who was unjustly forced to leave school in 6th grade, to take care of her own sick mom.

The pandemic deconditioned her and precipitated this state.

“I’m not suffering”, she told me in a moment of lucidity.

But then cried her heart out when she missed the window to get her Covid vaccine at her seniors’ residence. The story of how that happened, is murky.

The pandemic has kept me away from her for a year now, on top of the 18 months my illness forced me to be away.

It’s early 2021 and I don’t know if I’ll make it back in time for her to recognize me.

More often than not, she forgets how long it’s been since she last time she saw me. Her forgetting me would be a blessing. For her.

For me, it would be just one more area of life where I no longer exist, but I will survive that if it means less pain for her.

One day soon, she’ll move from being happy to hear my voice, to bluntly wonder who the hell I am.

I’ll never be able to prepare enough for that.

Each time, is a bit more shared, a bit longer.

Until…

Getting Rid of 2020

How have you been? Did the soon-to-be-over year treat you well, considering?

Considering a global pandemic, darn it!

Didn’t see that one coming, did you?

2020 started well for me. I turned an even age number – I always prefer those to odd numbers. And after 19 months, I finally thought my medication was helping me get back on track and then… early March test results showed anomalies and my struggles with the medical system re-started.

Then the entire world closed.

Dystopian, really.

Healthcare workers at the forefront, meagre salary earners thrown on the front lines of pharmacies and grocery and liquor stores. Others losing their jobs or their livelihood, often permanently.

People losing so many loved ones, unable to see them one last time as all visitors were forbidden entry to long-term care residences and hospitals. Others having their surgery and cancer treatments cancelled, then having to go through them without support, experiencing pregnancy losses alone.

Parents struggling to perform at work and take care of their children all day, every day.

So much pain and hardship.

Then fatigue set in, summer arrived, more things opened up and we all thought the worst was being us.

Well, you know me, I rarely think the worst is behind me. 😉

Fall required teachers to go back to often unsafe classrooms, more fatalities, more hospitalisations, many of sick remaining sick long after the medical system declared them cured of the virus and struggling to earn a living.

By then however, the world’s compassion and empathy, already in short supply, withered to nothing.

If everyone is hurting, no one is there to offer solace.

How have you fared? Are you still healthy and relatively wealthy, looking forward to going back to travelling? Happy to have gotten more time with your household near and dear? Spent your summer golfing and swimming at the cottage?

Lucky you. I mean it.

I hope you see it too.

My health challenges continue to this day, but they completely pale in comparison to others in the world who have been so gravely wounded morally, financially and physically.

2021 will offer many of us a light with vaccines coming out. Distribution will be challenging even for rich countries. Some may not get their hands on them before 2022 and beyond. If ever.

We’re there yet.

Coming upon us is Christmas, with many wanting to see family members they love and who love them back in person.

Lucky you.

Maybe some of you anticipate a last Christmas with someone who’s health is fragile. What a choice – to see them in person or not.

My remaining family is three people in their late eighties. Due to my ill health, I haven’t seen them in over two years. I know I’m not alone in this predicament. This year, as they live in elderly care residences, I can’t risk for them or for me. I’ll just have to cross my fingers.

So back to in person celebrations. You’ll do want you want to do, of course. And if you do, don’t tell me because I’ll judge. 😉

May I just mention that amongst your many blessings, spreading a bit of compassion and empathy, even if it means digging deeper than ever before, could go a long way in the coming months?

For the others who haven’t been so lucky in 2020.

Desperately Clinging to Normal

In a liquor store, tired of following pandemic arrows to nowhere, I say:

“I’m looking for a dry Riesling…”

“Well, I don’t drink it.”

“But isn’t your job…

“What?!”

“… to help people with their wine selection?”

“Well, we don’t have tastings during the pandemic.”

Finally, she points at a dry Riesling bottle.

“Thank you.”

Moving to the cash, I’m asked:

“How are you doing?”

It’s the familiar routine. I understand. But who wants to answer that question right now? Who wants to keep lying?

I’m being melodramatic.

OK.

I answer that I’d rather not answer that question, and follow up with: “how are you doing?

“Not great in this place.”

All three of us are not doing well. Clearly. And we certainly did not make each feel better this morning.

But there’s noting out there to make us think we’re not alone feeling this.

It’s still all “look at all the many beautiful places I can drive to”, “look at the great meal I made”, “I sew masks”.

Every once in a while, you see a “number to call for your mental health”. Would you call?

Of course not. That’s for people who have no one.

It reminds me of my dad who drove his entire life and kept telling me it was just great to have to take the bus.

There are special activities for children, the elderly, students…

If you don’t fit in these categories… you’re out of luck.

Schools will open this fall. There will be no patios, no parks to sit in for any amount of time (I think the city even removes most benches).

We’re to think that all is normal.

It won’t be. It will be quite different, not likely good different because everything is still seen through the “normal” lens.

There is no innovation, no creativity from any level of government.

Schools, hospitals, clinics, etc. are to make do with the same amount of money in facing never seen in over a 100 years challenges.

The media sphere (social and not) is still filled with “all in this together” when at this point, most of us have seen that we’re on our own come hell or high water.

Personally, come October, I will not be seeing any of the 3 friends who have been “brave?” enough to see me in a park over the summer.

I spent 3 months (March to June) not seeing anyone I knew outside of a video call. I’m now facing many more months, including holidays like this.

I’m not alone.

Our voice just isn’t out there. Everyone else is too busy clinging to normal or fighting against those who do.

At the best of times, dark winter makes us want to scream at the top of our lungs.

People are already tired, resentful, fearful and lonely. How will the next months amplify this?

There is nothing there for most of us to hang on to.

The only governmental refrain is filled with “getting the economy going” and “keeping businesses open” and gibberish about schools.

But small and medium size business owners are super stressed, their employees bearing the brunt of their bosses and customers’ worries.

It’s not enough.

We need creative solutions to the issues will be facing.

But we can’t have solutions until we admit there are festering problems, identify them, and start talking.

Politicians can’t figure it out? Not surprising, like the heads of public service organisations, they are the winners of the current normal.

Then, crowdsource for the love of all that is good.

Stop hiding your head in the sand.

Invest in something else than construction and businesses.

Municipal councillors are the closest to their population. How about setting up some social distancing park meetings while the getting is good? Then virtual town halls, leveraging social institutions’ help – not everyone has access to a computer and wifi. Still.

Better equipped people than me, with a terrain view could come up with much more viable ideas.

There just isn’t a platform for them to be heard.

Governments need to invest in a different way of life.

We’re running out of time.