Immunocompromised People Are Not Expendable

I will not be quiet anymore

As the pandemic continues, I continue to feel ignored. It is with distain I write this. The disappointment I feel towards society is growing vastly, like an unpleasant fungus ableism spreads across the globe. More of my immunocompromised comrades lost in the muck of miscommunications, and left to isolate. Fake news spreads like wildfire about the vaccine. Heartbroken, shook to my core, the site of things I sought to never see.

Whispers of lies, “the immunocompromised do not matter, they were bound for death anyways their death does not matter.” Words, whispered on lips of those whom pretend to care.

Being told to continue to isolate year after year, now it has been two years since I have seen a friend in person. The lack of human face-to-face interaction is changing me. Two years, what of my mental health? What of the health of others like me? The immunocompromised are not expendable, and I am tired of hearing, “they had pre-existing conditions and succumbed to Covid-19,” as the message sounds to be our deaths are to just be a casualty not spoken for during this war on a virus killing millions.

I feel as though I am disappearing, losing sight of the world outside my window. Housed in these walls with two windows to the outside world. I suffer silently no one to hear me scream, cry as I long for a visitor. Long for someone to tell me what I mean to them. Longing for things of the past which have been expunged by a virus. Disappearing into the depths of loneliness, dissolving in disappointment from the waves of selfishness in society. Drowning, choking on ableist words, being pushed into the ground, as the ableists rise on their soap boxes.

We matter, the immunocompromised matter! Our lives are not expendable because someone else thinks so. We all get sick at one point in our lives. Where is the compassion? Where is the hope? What is the lack of care towards others, because they are not directly impacted? I am lost in the mess of the world, the confusion, the misinformation is killing people like me. Make it stop! I don’t want to see more people die to something that is preventable. I am not expendable, even if someone thinks I am. I am human, I deserve to live life, and deserve to be free from the cage I am confined in because of the selfish-narcissism our society has become.

I am despondent, struggling with thoughts of hopelessness, but I refuse to just disappear. I will use my voice and my writing to continue to talk of the miss guided views and ableism which have been perpetuated by the pandemic. Immunocompromised does not mean my life is worthless or that I should just dissipate into the background. I have hopes, dreams and aspirations. I refused to lay down and die. This fight is not over and I refuse to give into the ableist rhetoric.

It Has Been Rough

I am working towards my goals, some dreams and some of the things in between. But it is rough. When you have ambition and drive deep in your being but a body that does not work nor listen it creates roadblocks and bumps a long the way.

I want to post on here more then I do, but my health does seem to dictate when I can write. I have been longing to sit down and write for a while, but the brain fog is creating blockages within the confines of my mine and I struggle to get out the words to write.

I sit here waiting for my online therapy appointment to start and remember how much harder things were last year at this time. My mental health took a dive, I was struggling to survive and yet, I am here I made it through. Things may be tough and challenging, but I am still doing the best I can to carry through. Diseases cause a pathway of distain, but can lead us to a new us and a place in which we belong.

I stopped live streaming on twitch for a long time, mostly due to the coivd19 pandemic and being frustrated, my mental health went south and my health followed suit. However, while doing nothing I realized I was making myself more sad, more depressed because my only outlets as an immunocompromised student, artist and cosplayer is the internet. The only way for me to connect with others is to be active on social media.

While I find social media draining there is also a peace and comfort I get from talking with like minded people and to me that is what makes social media click for me. It is what inspires me to continue talking, continue writing, and continue to stream on twitch and YouTube. While I feel sick, and am sick and am not doing well, doing things that bring me joy help me to cope with my mental health. When I sit around and simply watch TV I feel non existent, and I get depressed.

I want to connect with others, inspire others to keep living the lives they are capable of. When we are sick out lives are different to that of the normies, and our joys maybe more simplistic, this doesn’t make us invalid. It makes us human. We all have a life worth living.

I hope to post on here when I am able, and would like to be more frequent, for now if you do not see me on here, come on over and check out my other content. I draw creepy things live on twitch, I stream video games from time to time on youtube and twitch. And I am working towards my goals, perhaps at a snails pace but I am working towards things.

I hope to see you soon!

Feel free to check out my other links here

The Truth About Abuse

This is the symbol one can make with their hand to let others know you are in an abusive situation and need help.

What is the truth about abuse? The social stigma that is attached to it. Abusers are not generally abusive with their friends, sometimes their true nature seeps through and other times it is not. I am tired of the abuse cycle, the sleepless nights, walking on eggshells and feeling unheard.

Abuse is not only physical but also psychological. Being abused leaves you worse then you were before, it destroys who you become and forces you to crawl out of a toxic love one in which you feel like you will never heal from.

I am tired of trying to sugarcoat being abused for other people to understand. Yelling at your spouse is abuse, it is unkind, and shows lack of respect. I deserve better. Anyone dealing with abuse deserves better. Someone can not claim to love you while asserting dominance, control, and creating fear to keep you under their thumb. The reality is, abuse is real, many people do not talk about abuse as they fear the backlash from their abuser, and abusers are master manipulators as they promising change, never changing. They have no problem spinning their web to make others see their perspective only and not acknowledge their wrong doings to another person. Generally using their resentment towards their loved one as their secret fuel to try to destroy them.

Being told no one else will love you like they do, no one else would ever do what they are doing for you, is something sad to make you feel small and something to make you stay in your place below them. They will talk about their lives and what they are experiencing but shut you down and not listen to what you have to say. They will say there are to many problems, are you are to sensitive, the right person for you will accept you and all of your flaws.

People whom have survived abuse know the signs, they know what will happen should they ignore red flags. Sadly, illness can lead to the person we love and care about getting care takers burn out, and care takers burn out can lead to abuse. There is hope, there are resources available. Do not give up on you. Abusers will try everything to squash your hopes and dreams, and make you reliant on them. Do not lose yourself.

I found myself after years of neglect, abuse and depravity. I am recovering, I am bitter, but working through it. People can hurt and mar us, but we must do what is in our best interest to survive, to thrive. I have no tolerance for the tactics of abusers now and will draw a line and cut ties if I need to.

I will tell my story, I will not be quiet, I will share what I have been through, the selfishness and lies of others will not quiet me. I am making videos on my youtube channel both art related and vlog related. Lets talk a bit about what has happened and how the resentment of another person nearly destroyed me

This group did wonders for me

Find help across Canada

Insomnia HyperPOTS You Suck

When normies have told me how they can not sleep I can not relate. I have high norepinephrine in my body pumping all of the time, and at night is as though my hyperPOTS is waiting for the cover of night to mess with me. I am so tired but can not sleep. I find no reprieve in rest as I seek an unattainable feat. Slumber deep in souls peace keep is what I seek. But disease keeps me awake, a watchful eye I did not ask for. Tired now my body ache, slips on eye lids heavy, blood pressure rising as sweat and tears break free. I long for the night to cuddle me and rock me to sleep. Norepinephrine is all I find in the slumber-less land of hyperPOTS.

What I Did This Summer

One of the reasons I’ve been so busy over this summer is because I’ve actually been working more on my book which I actually completed. I am so excited to actually even say that I have finished it. I have written it over and over again over the years I’ve written it and destroyed it and come back to it and destroyed it again. There’s something about writing the book that I have just found difficult. It is a fragmented multifaceted point of you that kind of jumps around from different time periods of my life. However it is something that I have been working on for a long time I know that it is now in the final stages and I hope to be able to publish it soon.

Another thing that I’ve been doing is been doing a little reading things here there where I’ve had to like do writing prompts and then writing a short story. Over the last year I’ve had some of my short stories and some of my poetry published and some anthologies and I am very excited about the future going forward. I know when I got my first acceptance letter I actually cried I’ve never thought it was going to happen. Deep down I always knew it was going to happen because I am a pretty driven person and I don’t want to give up I want to continue to move towards my dreams and I want to continue to try to make a difference within the chronic illness community and help inspire other people to follow their passions their dreams and live a life where they are happy.

A lot of the time when living with illness we seem to get lost in the rut of being sick. I taught myself to lift myself out of the rut numerous times it is very difficult to do so but it is possible remember that you need to be your own strength. Sometimes leaning on each other is a great way of being able to continue forward but sometimes other people cannot be there for you when you need them the most so this is when it’s the most important to be there for yourself. This is why I started writing and fine-tuning my book. I wanted to be able to finish it before 2022. 

I feel as though there’s a fire burning within me that I need to let out and stop trying to expunge it. Even while I’m writing this I am favouring and have extremely bad brain fog but I know that I want to do this I want to continue my blog and I wanna continue raising awareness.

I have a lot of things on the go just as far as trying to keep myself busy mostly because of the whole Covid situation and being locked inside.

COVID-19 has really showed me who my friends are well and aren’t because through the course of the last two years I’ve had to cut people out because of their selfishness when it comes to my health and I’m not willing to put my health on the line for a visit. 

I also wanted to share I am on tiktok and make videos on there for awareness come on over and check them out. While I do not post everyday I post when I can. 

Thank you for being here and reading my post and I hope to do my best to raise awareness and to spread hope because there is hope when you’re living with chronic illness and it doesn’t have to be all dark all the time. Yes the journey is difficult and challenging and people that don’t have chronic illness we never understand it. But you know what, I understand it and I know you’re not alone because I felt similar emotions too.

Will post again soon thank you for being here and taking the time out of your busy day to read my blog. 

Summer Leaves Us Behind

Summer has come and gone, it is time to bundle up for winter. My joints all ready ache with the fall nipping near. I am excited for my classes to start this week.

It has been a long while since I have posted as I have struggled with my health dearly this summer. I got the Covid19 vaccine, just one, and I had a severe reaction. So severe I may not be able to get another one.

In the midst of summer I succumbed to my blues, my CPTSD reared its ugly head and I admit I isolated more then I should. I now wondering what a blunder I have caused for myself. I am tired and wakeful all at the same time.

I decided I wasn’t going to allow the summer blues keep me from pushing forward. I have sat may days writing on my computer. Compiling my writing into my manuscripts to hopefully be able to find a publisher’s in the new year. My lack of posts have been both because of my health mental and physical.

Due to Covid-19 I have had to switch Universities, not something I wanted to do but needed to do as I can not attend in person classes. It breaks my heart to my BFA on hold, I will be starting another Bachelors in the area of psychology.

Writing frees my log locked mind, in a time where all I have is my computer to communicate with the outside world. I apologize for the long delay in my posts. Thank you for sticking around for my mini update. I have hope in my heart for brighter days ahead, even with the clouds that have loomed over me, a breakage of hope glides me through as I write this to you.

Take care, will post soon!

The Construct Of The Apron; Cleaning Up Ableism

As someone who is creating art centered around the topic of ableism, I wanted to make something I could use but also send a message on. Ableism is something I absolutely hate; I am an activist and I will use my art to change perceptions and open people’s eyes to truth of the world we live in.            

Carving the word Ableism out of a rubber carving block

The concept itself of creating an apron is one that made me think about cleaning up society, not in a feather duster sort of way, but in a way where I show images that are disruptive to make the viewer uncomfortable. The world is flawed, like humanity itself. We are broken, as the human race and thus try to break others, societal views of breaking down “weaker people” is wrong. The social tones are unexpectable, humanity needs to heal.            

Carving faces out of the rubber blocks

Human greed fuels the ableist machine, it is the grease in the cogs that make it go round. If you can not contribute to the funds of the rich you are considered to be weaker and less then other humans. This is a corrupt society after all, one that puts finances about human life. Big pharma as an example is something that aims to disrupt and break the chronic ill/different abled and sick mind. Making pill costs not affordable makes being sick difficult and leads to internal ableism. Internal ableism stems from the societal views we are brought up knowing, that if we do not fit into a generic box we must hate and belittle ourselves.            

Printing on cloth

Working on this apron made me think of how expensive my drugs are per year, I am expected to pay around thirty-three thousand dollars a year for meds. Something I can not afford. I sure at this moment one would think, wait, we are in Canada, meds are covered right. Wrong, they are not, not every med is covered, a few examples are asthma meds, chemotherapy drugs, and Alzheimer’s meds. I had to stop taking a medication called Xolair, one that helped with my breathing and allergic reactions because it costs two thousand dollars a month. Stopping that med brought my total down to nine thousand dollars a year for meds. However, when you look at the student life, and paying for living and tuition having an extra nine thousand to fork over becomes expensive factoring in everything else. I did not cause my illnesses, and at times feel punished by society for being sick.            

The completed apron

As someone who has survived cancer twice, and lives with three rare diseases. I aim to change perceptions, and clean up society from the toxicity of ableism. This form of discrimination is not talked about enough, ableism leads to caretakers burn out which leads to abuse of the disabled and differently abled people. Ableism forms the notions that hate crimes towards disabled are mercy killings. Ableism is toxic, lets clean up society and rid discrimination of all types. If everyone comes together to make change, change will happen. I will never quiet my voice; I will continue to yell and scream into the void I will do what I can. “Be the change you want to see in the world” (Gandhi).

Surviving Chronic Illness Comic #3; Isolation

Surviving Chronic Illness Comic #3 Isolation By Ari Cubangbang Page 1
Surviving Chronic Illness Comic #3 Isolation By Ari Cubangbang Page 2
Surviving Chronic Illness Comic #3 Isolation By Ari Cubangbang Page 3
Surviving Chronic Illness Comic #3 Isolation By Ari Cubangbang Page 4
Surviving Chronic Illness Comic #3 Isolation By Ari Cubangbang Page 5
Surviving Chronic Illness Comic #3 Isolation By Ari Cubangbang Page 6

Surviving Chronic Illness; Learning About Ableist Language

Ableism And Identity

              “Move out of your comfort zone. You can only grow if you are willing to feel awkward and uncomfortable when you try something new.” — Brian Tracy.

              Ableism is something that has been prevalent in museum settings for ages, accommodations seem to only be made for those who are immobile and wheel chair bound. The disability symbol itself is a stick figure in a wheel chair, the symbol is not inclusive of people like me, I use a wheel chair sometimes, but not all of the time. 

              What makes me who I am. I am an activist. I write and speak of the social injustices towards the disabled—something which is not propelled into the limelight as much as other discrimination topics.

              Ableism is discrimination towards the disabled. The world is set up to be in favor of the non-disabled person. Not all disabilities mean being in a wheelchair; due to this social stigmatic view, the only disability radially accepted is how someone is in a wheelchair is stigmatizing and wrong. It is a single viewpoint on a massively broad spectrum of disabilities as all disabilities are not visible. Thus, I have been met with ableist hate, not only from non-disabled people but also from fellow disabled individuals.

              What is casual ableist language? Casual ableist language is so ingrained within society that many of us do not realize we are using ableist language. When we use a mental illness to describe how we feel, but we lack the mental illness, this is being casually ableist. Now getting uncomfortable is where change can happen, changing out thoughts leads to different actions. When someone says, “I am so triggered,” but lacks triggers, this is practicing the ableist language. Saying, “I am so OCD” when not having OCD is also ableist. There are commonly used words and phrases which create isolation and disconnect between the non-disabled and the disabled. This language includes the following words, dumb, blind, deaf, lame, crazy, insane, to name a few. When we use a disability as a form of mockery, we are fueling machine of ableism.

              Words have the power to heal and the power to mar; the idea of having inclusive language means updating our syntax to void words that could be used to cause harm and create isolation for those who are disabled in the ways of being blind, deaf, or dumb. Being blind, you can not see or are visually impaired; being deaf means you can not hear, and in turn, you are hearing impaired, and being dumb means, you cannot speak. Why are these disabilities used to insult or mar the general populous, is this used to make someone feel lesser then? The answer is yes, but using a disability as an insult means we are only fueling the problem, not addressing it or changing it.

              Being treated lesser has taught me to stand up for myself; it has helped me find my voice through the written word. I am passionate about changing the social stigma around disabled people. I may be disabled, but I am not dead; I am a student, a volunteer, a person who has a message to be heard, and I will not quiet myself for anyone’s comfort. Change happens when we get uncomfortable, and we learn things.