J’aurais aimé…

J’aurais aimé te parler.

J’aurais aimé échanger.

Mais plusieurs années ont passé, où ce n’était plus possible.

Le vide s’est établi depuis longtemps, mais la perte était en suspens.

J’aurais aimé continuer à rire.

J’aurais aimé te serrer.

J’aurais aimé continuer de te protéger, mais je n’en avais plus la force.

Et ce n’était pas mon destin.

Tu as toujours été tellement fragile, trop fragile pour m’élever.

Tu l’as gardé près de toi, l’homme de nos chagrins, l’homme de nos douleurs.

Il était plus important que tout.

Et il n’était rien.

J’aurais aimé plus de soutien.

J’aurais aimé être mieux aimée.

Mais ce n’était pas mon destin.

Va vers la douceur, va vers la chaleur.

Repose-toi bien.

Il n’y a plus de rancœur.

Votre mère ne mange pas

Une phrase constante à chaque appel pour m’informer que ça ne va pas.

Une phrase constante sans aucune arrière-pensée venant de l’interlocuteur médical mais qui me tue chaque fois.

Les médecins me parlent, comme si c’était la première fois qu’ils m’expliquaient que ma mère se meure.

J’aime bien cette expression car elle appelle à une autonomie, une décision. « Se mourir », « se laisser mourir ».

« Votre mère ne mange pas. »

Au début, je craignais qu’une vieille femme souffrant d’Alzheimer avancé serait laissée pour contre et oubliée à l’hôpital ou elle a été amenée pour une coupure qu’elle était trop agitée pour suturer.

Je ne m’attendais pas à devoir lutter contre l’acharnement de ne pas accepter sa fin,

Bien sûr, j’ai eu 5 années pour me faire à l’idée. La perdant doucement, inexorablement, pour toujours.

« Votre mère ne mange pas. Les préposées ne la forceront pas par peur de pneumonie aspiratoire. Je ne recommande pas un tube de nourrissement. »

Bien sûr, laissez-la en paix.

« Votre mère ne mange pas. Il faut une endoscopie et/ou colonoscopie pour voir pourquoi. »

Non, non, il ne le faut pas. Pas de tests invasifs, non, je dis pour la deuxième fois en trois jours.

« D’accord, nous garderons son soluté pour un maximum de 48 heures et si la situation ne se règle pas, nous allons l’envoyer aux soins palliatifs. »

Pourquoi pas maintenant ? Quelle qualité de vie voyez-vous chez elle ?

Je le pense mais ne le dis pas car j’ai eu à lutter et je n’ai plus l’énergie pour continuer.

Et elle ne m’aurait pas écoutée. Une religion qui croit que la vie est trop sacrée pour offrir une minuscule autonomie de décès, peut-être ?

Oui, oui, tous les médecins sont fabuleux (nausée).

Pour vivre, sûrement, mais pas pour mourir.

Les jours passent. Des médecins sans nom lui ont enlevé mais ensuite remis sont soluté.

Sans m’en parler.

« Voter mère ne mange pas. »

Je sais. La blâmez-vous ?

Ou moi peut-être ? Allez-y, ça ne sera jamais pire que ce que je me suis déjà dit, en insistant pour ma survie à gérer de loin.

« Puis-je avoir votre accord pour lui enlever son soluté ? Il faudrait aussi arrêter les prises de sang. »

Mais qu’est-ce que vous attendiez, bordel ? Combien de fois vous avez forcé quelqu’un à piquer une très petite femme sans défense avec seulement la peau et les os ? »

« Nous allons la garder ici, il n’y aura pas de transfert aux soins intensifs. »

« Votre mère ne mange pas. »

La même médecin qui a oublié la majorité de notre discussion précédente.

« Avons-nous votre accord pour l’envoyer aux soins palliatifs ? Il faut que toute la famille soit d’accord. »

Vous voulez dire qu’après 6 semaines vous allez enfin faire l’effort de parler à mon père qui est la presque chaque après-midi ?

« Pouvez-vous le préparer ? »

Je n’ai fait que ça depuis 5 ans, docteur.

The Hidden Secret of Long-Term Disability Insurers

I will find out next week if my country’s public service finds me disabled enough to obtain a disability pension.

I didn’t want to apply for this pension, as I don’t consider myself disabled.

I consider myself to have an energy depleting illness that makes me unable to work enough hours to make 70% of the salary I was making when forced to apply for Long-Term Disability (LTD) benefits through my employer’s insurer.

This is the threshold of disability to receive monthly benefits under the contract agreed to by my (former) employer and the insurer.

I was forced to apply because the insurer threatened to cut my LTD benefits by $1,545 – the maximum amount a person can get as a disability pension.

Very few people ever receive this amount, as you would need to have worked at a consistently high salary for decades never stopping for things like illness, a maternity leave or a layoff (the pension amounts are based on how many years you have worked and your salary level, minus the seven (7) you received the least income).

I worked for 32 years (granted, not always fulltime) and benefited from a reasonably high salary for the last 10 years of my career and would receive about $600 per month.

Cutting benefits by $1545 per month for non-compliance is plain cruel, but as they say, “cruelty is the point”.

What’s more, if you apply and get denied, the insurer will use the same pressure tactic to force you to fill an appeal. If this appeal gets denied, you will then be directed to bring your case to a tribunal of last instance.

This means our taxes are going towards paying public servants to review the applications and appeals of people like me, for the sole purpose of reducing the LTD payment expenses of large private, for-profit companies.

While they spend hours reviewing our cases, pay doctors for reports, etc., individuals who desperately need disability pensions as a sole source of income, wait countless months to have their applications reviewed.

If we’re approved (doubtful because the proof of disability threshold is much higher than to obtain LTD benefits), our taxes pay for a portion of the LTD benefits that should be at the charge of the for-profit companies.

And the clincher, the payments are retroactive. This means that years’ worth of payments are being poured from a government pension program, into the pockets of insurance companies.

The retroactive payments go to the insurer.

I still spend most of my waking hours working to find a road to recovery. Filling forms telling the world I am useless did nothing to help me achieve this, on the contrary. It took me two (2) weeks to recover physically and emotionally from applying.

Next week, I’ll find out if I need to spend more of my lacking energy and endurance filling forms and arguing to save a large for-profit company some expenses.

It feels like work I’m doing for the insurer, while spending money and the little energy I have, to also prove to them that I cannot work.

Remember though, “cruelty is the point”. The insurer wants to stop paying me completely and the quickest way for it to happen, is for me to die.

In my darkest days I hold on to that thought, and keep living.

Lettre d’amour à moi-même

Je suis un peu en retard pour la Saint-Valentin, mais bon.

Décembre à très bien été, malgré le passage des Fêtes où je me retrouve souvent complètement seule. Je bénéficie parfois d’un appel vidéo d’une amie, mais pas cette fois.

On s’habitue.

Je venais de finir un livre que j’ai adoré pour son message : « The Lady’s Handbook for her Mysterious Illness ». Sa lecture m’a permise de revivre le début de ma maladie, mes multiples rendez-vous médicaux pour trouver une solution qui me permettrait de retourner travailler (jamais pour pouvoir vivre une bonne vie, seulement « travailler »), les tests médicaux, mes visites auprès de praticiens du bien-être, les déceptions, la peur, la perte de mon travail, de ma carrière, etc.

Revivre tout ça et comprendre.

Revivre tout ça et me pardonner.

J’ai fait tout ce qui était possible de faire pour aider mes médecins à comprendre l’urgence de ma situation.

Je n’ai pas quitté le travail trop tôt, je n’ai pas mal géré les multiples batailles bureaucratiques.

J’ai fait tout ce que j’ai pu faire pour sauver ma vie.

J’ai arrêté de travailler « tôt » parce que je savais que si je tombais encore plus malade, personne ne serait là pour m’attraper et me soigner.

Ma tête continuait de penser que j’étais bien entouré au travail et dans ma vie, mais mon for intérieur me savait seule.

Et mon for intérieur avait, et a toujours, raison.

En janvier, j’ai voulu préserver cette paix intérieure si chèrement gagnée, mais je savais que même six ans plus tard, la vie trouverait d’autres façons de me déchirer.

J’aimerais croire que c’est pour me faire comprendre d’autres réalités que je refuse d’admettre, des réalités qui me ferait grandir, mais je n’y crois plus vraiment.

La grandeur d’âme est devenue inutile en ce monde.

Je surmonte chaque semaine, des monologistes qui ne me voient pas, qui tentent de me convaincre que ma situation pourrait être pire (évidemment !) dans le seul but d’esquiver rapidement et totalement ma douleur.

Je survie à plusieurs plaies ouvertes d’émotions. À des douzaines d’abandons qui n’arrêtent pas.

J’offre de mon côté une loyauté inébranlable au bien-être de mes proches, une grande capacité d’écoute et de résolution de problème (sur demande). Un sens de l’humour béton qui a fait rire des légions.

La majorité évite même un petit « bravo » pour le long et pénible chemin que j’ai parcouru.

Alors je me le dis pleinement : « Bravo !!! »

Chaque nuit, d’horrible visions me guettent de mon tout près future. Je les enfouies et je survie.

Chaque nuit je rêve d’être entourée : réponse de mon subconscient au désert de mes relations.

Trop longtemps j’ai crû qu’avoir peu de gens autour de moi était un signe qu’il manquait quelque chose de vital à ma personnalité.

Maintenant, je sais.

Le manquement est dans les autres qui ne veulent pas m’accompagner.

Je dois persévérer.

Uniquement pour moi.

January – Part 2

These past years, as I faced more and more personal challenges and saw more and more people leave my life because I was “no longer fun”, I became more worried about the tone of my blog. Along with a lack of physical endurance, it was one of the reasons it was so hard for me to post anything for a long while.

What I was living made me so angry and sad, two emotions people tend to avoid like the plague, that I thought it best to protect my audience from myself. Now I say: “screw that”.

Life is sadly not a beer commercial, where you are always enjoying yourself, surrounded by good people, food and drink.

Self-censorship was the reason why I cut out a good chunk my last text, discussing my mom getting an official Alzheimer’s diagnosis (she’s been slipping away for 5 years now and no longer recognizes me as her daughter), as well as the foreseen death of her last sibling, my aunt of 91.

Because I have been unable to travel since 2019, I was only in touch with my aunt through phone conversations. Despite refusing to access social services and many of the residence’s supports, she had someone who until her last few months, provided her with mani-pedis, accompanied her to run errands, and grocery shopped for her. In the end, she wasn’t in pain and died quietly in her apartment, accompanied by a nurse. She had also told me a few weeks earlier that she was ready to go.

The bureaucratic and financial burden stemming from the death of a close relative, is huge. Even the most basic estate liquidations, where very little money is involved, can be costly, trying, and last for years.

This is why I spent many conversations over years, trying to convince my dad and aunt to arrange their affairs. It didn’t work.

My dad can’t fathom dying and still has my now legally incompetent mother as his executor. I don’t even know if my aunt had a will. If there is one, it hopefully doesn’t also name my ill mother as an executor.

Neither had set up Power of Attorneys for their care or financial needs if they became incapacitated. They also hadn’t provided me with important financial information. I even tried to get my aunt and my dad to talk more and share information with each other, to no avail.

For decades before, my aunt refused to learn anything about the internet and my dad, although he did learn how to send emails at the community centre, refused to pay to have access at home. It was not due to financial constraints, but a stubbornness that was beyond my understanding and capacity to break through.

This is why, my first reaction in getting the sad news was one of annoyance at how much effort it would take to settle her affairs. My second reaction was to refuse to be involved in any way. I know you can refuse to be an executor, but apparently not when you are the last remaining relative and there is no will. We shall see.

I also told my nearly 90-year-old dad not to get involved before a will was found, but he chose to take on the task of organizing the funeral and meeting with a notary.

I’m torn between guilt, happiness watching him feel important and capable in taking over, and deep worry that he’ll die trying.

Be good to the people you love folks, and plan for debilitating illness and your death. You might avoid the former, but you will not avoid the latter.

My aunt was kind enough to at least set up a pre-arranged funeral package, but the funeral home still coaxed my dad into paying an additional $800. Some of it was warranted, I’m sure (copies of death certificates, notifications to financial and government entities). But there were repeated errors in the death announcement, the posting came a day before the 1-hour visitation and its date and time disappeared after the posting was up for only a few hours.

This meant that it was extremely unlikely that people would show up to it, yet 30 chairs were set up for the event (and probably charged to my dad who had already told me he might be the only person there and for all I know, wanted it that way).

How much this was due to my dad lacking proper understanding under the stress or the funeral home being vultures, I’ll never know. What I do know, is that my dad sat there with 29 empty chairs, until a family friend I had contacted the day before, was generous enough to show up on a very cold day.

This image broke my heart in a thousand pieces.

I cried for my aunt, for my dad, for my mom, and for me.

Everyone keeps asking: “she didn’t have any children?”. As if everyone had children and never outlived them.

My aunt lost her husband, a brother, a sister to death, and my mom to an illness that made herself and everyone else, disappear. Both my parents have lost all their siblings.

How many family members do you have? How likely are they to outlive you? Do you have kids? How many live near you?

My aunt had friends for many years at the residence, but she developed difficulties in speaking and was apparently made fun of enough that the friendships ended. The same thing happened to my mother when she first started showing signs of dementia. Old people are just as cruel as the young, really.

How many close friends do you have? How likely are they to remain as such in your older years?

Do not have a stroke or any debilitating illness in old age folks, or you’ll be left out in the cold.

I speak from experience.

Or…

…maybe, just maybe, as my grandmother used to say, “have a heart” towards others in need in your lifetime and hopefully, others will too.

January

I have been delaying write my fist post of the year. I cannot bring myself to say in any way, “Happy New Year!”

After all, I could always resume my many experiences of the first month of the year with my own saying: “Nothing good ever happens in January”.

Personally, nationally, and globally, there have been no HNY in over five (5) years and my optimism is in neutral. Superstitiously, I wonder if things will improve if I lower my expectations to nothing.

In looking at my current life, 2024 will be nothing but difficult. I want to lie to myself, deny, think about anything else, but faith will catch up with me, it always does. In the meantime, I am determined to squeeze out every little bit of goodness I possibly can.

I make no resolutions, except for “Less reading, more living”. I wrote this off the top of my head in an email to a friend. Who am I kidding though. Most days, reading is the only thing that keeps me from going off the deep end of despair.

I am a little late in reviewing 2023 (and really, really do not want to), but I can at least share my favourite books of the year, which happened to all be non-fiction:

Apparently There Were Complaints – A Memoir by Sharon Gless

Christine Cagney was my idol growing up. Sharon Gless is nothing like the character she portrayed on Cagney & Lacey, but I loved her authenticity and sense of humour.

Nothing But the Truth by Marie Henein

I did not expect a cut-throat criminal attorney to write so warmly and deeply about her family. The chapter dedicated to her uncle was absolutely wonderful.

The Last Doctor – Lessons in Living from the Front Lines of Medical Assistance in Dying by Dr. Jean Marmoreo

Not an easy read, but still very informative and written in a caring way.

The North Star – Canada and the Civil War Plots Against Lincoln by Julian Sher

The things I do not know about the history of my country could fill libraries. Canada is not always son the right side of world changing events.

The Lady’s Handbook for Her Mysterious Illness – A Memoir by Sarah Ramey

I highly recommend this book to everyone, especially those who do not question why countless women can be ill without a medical system approved diagnosis.

It helped me heal my soul after many very trying years. It was written so well; it made a very difficult subject easy to read. The text was also space out enough to allow me time to reflect on my similar journey and helped me find deep compassion for my decisions over the last years.

Maybe I did not fail, repeatedly. Maybe instead, I saved myself from much, much worse.

Despite the external evil forces of bureaucracy and greed that are surrounding, I would like to heal my soul even more in the coming year.

And write more, while censoring myself less.

I simply cannot yet live, with low expectations.

Twitter – A Eulogy

I joined Twitter in 2011, under an anonymous account to post freely without putting my job in jeopardy. I populated my feed with accounts of journalists, policy wonks and researchers from many fields, traditional newspapers, and newer outlets. Being a librarian by training, it wasn’t hard to evaluate the level of authority of the accounts. That was then.

I reposted and quote posted a lot, but I remember taking a long time to risk sending my personal thoughts into the world.

In 2012, I created another account under my name to use in a more networking and professional way. It did not work.

Even later, I created an account for my blog activity… it died of boredom.

When my city got overrun by hooligans in February 2022, Twitter was a quick way to find local news, including which parts of downtown to avoid on an hourly basis, how to find help and connect with neighbours.

Then The Billionaire bought it in October 2022. Soon after, I requested my archived info and deleted two of my three accounts.

Why am I mourning Twitter?

Because I enjoyed all the political banter, often following debates live with running commentary and me trying and (surprisingly often) being witty enough to garner Likes and positive comments.

Politics and positive comments? ON TWITTER? Yes, the beginning was fabulous.

Former Prime Minister of Canada, Kim Campbell, responded to my comment with a smiley face, folks. A SMILEY FACE!  And yes, it was really her because back then, there was an identity verification process that truly worked.

I had fun convos with my all-time favourite Sci-Fi star who shared much of her mental health and sexual harassment struggles, Claudia Black, and was able to tell her directly how much I appreciated her work. (No, I am not a stalker – she lives too far away for that 😉.)

When I was at my lowest health wise, I found a fabulously knowledgeable community whose members directed me to medical research and helpful resources happy to receive only my thanks.

During the pandemic, Twitter was the best place to get timely and pertinent information and any appropriate research. Many were also open to answer questions. Dr. Tara Moriarty, provider of free invaluable Covid data from Canada on is still there, and others are too.

Were there a bunch of pretenders and charlatans? Yes, but they were usually not verified (remember, the verification process was a legitimate filter back then) and those that were, were resoundingly taken to task with more expert information.

Having a problem with a delivery, cell phone, or cable service? How about a chain store? I would tweet and get a detailed response in minutes. How else can you get such a quick response time with people who can fix your issue or give you an appropriate update, in minutes?

I will miss this efficient time saving convenience So. Damn. Much.

Twitter is now known under another (ridiculous) name, which I refuse to use. My remaining account is still active and gets hit by bought sexbots with every post and comment I make.

It’s the price I am stuck paying to continue to interact with the kind and helpful souls I met there, who for many reasons, have not migrated to another platform. Not former politicians or TV stars, but regular decent and caring individuals.

I am truly mourning this platform and feel incandescent rage towards The Billionaire for ruining it all for us, over a fragile ego endeavour.

None of the platforms that came up wanting to replace it (Bluesky, Mastodon, Spoutible, Threads (owned by another billionaire)), are making the cut and the evil unleashed by The Billionaire will never go away.

But it was fabulous while it lasted.

Christmas Wishes

The Christmas season is upon us. Everyone out there being merry.

I have a special thought for all  those sitting by the bed side of a very ill someone and those who have lost a loved one recently, may it be physically or emotionally.

I see you and send you warmest wishes for the load to lighten.

To everyone out there, take very good care.

Begin, again. (Not a Taylor Swift song)

In 2016, I enjoyed reading Felicia Day’s You’re Never Weird on the Internet (Almost) and a sentence struck deep into my soul: “Eventually, I emerged from my own private Hades.”

I didn’t remember how long ago it was, I thought I read it once I was stuck sick at home. I was floored that I had that feeling already nearly two years before going on permanent sick leave.

I’ve taken the long way to say, very tentatively after having so many bricks fall on my head over the last six years, that I made it through enough of my personal Hades, to come back here and talk about my experiences without overwhelming the reader with sadness and pain.

I have many ideas for new posts, some will come to fruition, others not. Stay tuned.

Like the yogis say, I begin.

Again.

Comment ça va ?

Avant la pandémie, c’était la question polie à laquelle on répondait généralement « bien merci, et vous/toi ? » avant de passer à autre chose.

Pendant la pandémie, elle est devenue une question piège. Au fil des mois, il devenait plus difficile de répondre aussi simplement car pour plusieurs, les ennuis s’accumulaient.

Certains intimes, la posait avec compassion, en vue d’un échange réel. Trop peu, malheureusement.

D’autres, submergés par les tracas ou pour les éviter, ont tout simplement arrêté de l’utiliser.

J’aurais aimé qu’après des années de pandémie, on aurait perdu l’habitude d’utiliser cette question avec légèreté et qu’on serait parvenu à l’utiliser pour renforcer des liens de manière plus personnelle avec les gens autour de nous.

Mais, non.

De mon côté, je la pose comme je la posais en 2020 – dans le but de soutenir et de comprendre, suivant toujours mon mauvais pli d’essayer à tout prix d’aider.

En 2023 par contre, il n’y a de place que pour le positif. On est passé du « ça va bien aller » au « tout va très bien ! ».

Parce qu’allez mal maintenant, c’est comme tombé malade – ça représente une faille de personnalité.

Vive le déni, quoi !

Depuis plus longtemps encore, cette question est devenue une bombe à retardement pour moi.

On croirait qu’après cinq (5) années de troubles de santé, les « amis » et même les plus lointaines connaissances auraient une idée de ma situation. Eh bien, non !

Comment ça va ?

J’ai essayé d’éviter de répondre, j’ai essayé de répondre le plus succinctement possible, j’ai essayé d’expliquer. Dans presque tous les cas, la réponse est la même peu importe le mode de communication – un lourd silence qui précède souvent une disparition pour une année, ou de manière permanente.

Non seulement on m’offre le silence, mais il est souvent précédé de l’aveuglement et suivi de vantardise.

Car ces demandes se présentent toujours avec un biais précis – la positivité. Sûrement que je vais mieux, sûrement que je travaille, sûrement que je voyage, sûrement que je vois ma famille dans une autre ville, sûrement que je peux me déplacer pour aller les voir.

Sûrement qu’on a une image de moi qui malgré toutes ces années, ne répond en aucun cas à ma réalité. Et à chaque demande, on me rappelle cruellement ce que je ne peux plus faire.

Est-ce qu’on fait ça avec tout le monde ou seulement les égarées comme moi ?

Je dois avouer que lorsque je n’ai pas de nouvelles de quelqu’un, je pense souvent que c’est parce qu’ils sont pris par de belles choses dans leurs vies et non des tracas.

Le déni, l’aveuglement, le silence, la vantardise.

Rien pour créer des relations durables et enrichissantes.

Mais on n’en a pas besoin, vous me dites – on a les voyages ! La course ! Les promotions ! Alouette !

Alors soyez préventifs et concentrez-vous là-dessus et arrêtez de me poser vos questions bidon qui ne servent, au bout du compte, qu’à un préambule pour vous vanter que « tout va bien » même si souvent, ce n’est qu’un mirage.