Life In The Bubble

Art Series; Pandemonium Trigger Warning

Title: “Pandemonium”

Medium: Mixed Media, including: Old computer tower, ink, acrylic paint, tracing paper, Mylar, glue, adhesive, old keyboard, sheet, embroidery thread

Size: “Trusted Society For Ethical Treatment” 19” x 5” “Political Incarceration The Asylum Era” 15.3” x 16” x 7.8” “Behind These Ableist Walls” 18” x 6.5” x 0.6” “Societies Acceptance Of Filicide” 19” 6” x 0.5, “Forgotten Form” approximately 7″ x 7″ and “Trapped In Space” approximately 5″ x 5.5”

Date: October 2020

Space is where things are housed, memories are housed within the constructs of the mind which is an internal space. Being confined to one’s mind can be torment, and in a time when asylums were used to house the mentally ill/physically disabled. Not only were many tortured within their minds from the confines of society, but they were tormented by the staff of the asylums physically. Each piece in this series builds on the ideas of each other and plays with the ideals and confines of space. They deal with restrictive nature of space, but also the openness of space. There is a metaphorical reference in my work, as an old space holds an even older space that is suspended within time in the vastness of the digital world.

Taking old space occupied by technical pieces to serve the user, and turning it a space where harm was done to those who didn’t fit into the societal norm at the time, society was reserved for those who fit into their pristine box. By removing the guts of the keyboard and computer tower, it freed up space for my concepts. I used paper, Mylar, paint, ink to create the spaces of human derangement, not derangement of the people sent to the asylums for treatment. But derangement of the people who were to help treat those housed in its confined, drab, sadistic space.

Mental illness, deformities, and abnormalities within society were once viewed as something that did not have a right to exist within the societal space. The people that did not fit into the confines of the abled bodied were deemed lesser beings and thus treated poorly. They were shipped off to an Asylum where many of them would never leave. Ableism runs deep through out history and is something that exists within the spaces of medical facilities. Through my research I found information I all ready knew, but also learnt more about the poor living conditions that woman, men and children were forced to live in for being differently abled. The morality of there being weaker unworthy people because of their abilities being different, is vastly inpatriate in nature. Ableism is truly the cultrate for this thinking. Ableism was also the basis for Hitler’s “master-race” plan in regards to eradicating disabled people, Hitler attributed to the murder of around 200,000 handicapped people between 1940-1945 (United States Holocaust Memorial Museum).

“Trusted Society For Ethical Treatment” 19” x 5”
Mylar from inside of the dismantled keyboard, Acrylic paint, India ink

“Trusted Society For Ethical Treatment” The painting an ink piece done on a piece of Mylar that was from inside of an old keyboard. The old keyboard housed this piece of Mylar this piece that existed in the internal space of the keyboard. I took the keyboard apart, painted on the Mylar and put ink on it and created this piece. This piece is representational of the trust put into those of power, doctors, nurses, physiatrists, people whom where to be “trusted.” Asylum life was not something anyone should have trust. The inhume living conditions that the mentally and physically disabled were forced to live in are currently something that is unspeakable in nature. The fact that people resulted to things like hydrotherapy, where they almost boiled people alive something unheard of today. Children were chained to radiators, walls, beds to prevent them from leaving, roaming free. It was to confine them to a space they were housed in, while being strapped into a straight jacket. Electroshock therapy was done to the extreme causing brain trauma, electroshock done right can currently help those suffering from things like bipolar disorder, this type of electroshock is not as extreme as what was used in the Asylum Era. The lobotomy evented by Dr António Egas Moniz in 1935, he thought he was helping people, but what he did was impede their abilities, a case that people tried burry was the case of Rosemary Kennedy she was 23 when Dr António Egas Moniz lobotomized her diminishing her quality of life. This piece houses all of these things on this small piece of Mylar, created to overload the eye.

“Behind These Ableist Walls” and “Societies Acceptance Of “Societies Acceptance Of Filicide” for these pieces I used the part of the keyboard that housed the keys. I popped out all of the keys, given the age of the keyboard, many of them broke. This piece is black, I did add red to parts of the keyboard base. I wanted it to be mostly black so that white would stand out more. Using emotive faces, I drew I wanted to show the varied confinement within the piece. This piece and the other “Societies Acceptance Of “Societies Acceptance Of Filicide” are to be displayed next to check other. I would ideally like sounds playing along with this grouping of works. Filicide is defined by the Oxford dictionary as someone “who kills a son or daughter; a slayer of his own child.” There are many instances where this seems to be an “OK” thing for a parent to do, more often then not society feels for the caregiver more so then the individual who is suffering. It is as though the life of the person whom is disabled/mentally ill is not as important by societies standards going to show the deep-seated ableism in society. The space in society that occupies more room for ableism and filicide is still growing and not shrinking.

“Political Incarceration The Asylum Era” 15.3” x 16” x 7.8”
Mylar from inside of the dismantled keyboard, Acrylic paint, India ink, dismantled computer tower, tracing paper, Mylar, Adhesive

“Political Incarceration The Asylum Era” The larger piece that has work all around it and all within it is based inside and on an old computer tower. How are used to house memory for the computer disk drives the motherboard all of the things within the external space and internal space have been removed to be filled with artistic images. Images on tracing paper that have been solidified with paint and then Marge podge to over top and I took more of the Mylar from within other keyboards and cut it up and pasted it in the piece to represent slides of blood in pain and anguish from the asylum era How are used to house memory for the computer disk drives the motherboard all of the things within the external space and internal space have been removed to be filled with artistic images. Images on tracing paper that have been solidified with paint and then Marge podge to overtop and I took more of the Mylar from within other keyboards and cut it up and pasted it in the piece to represent slides of blood in pain and anguish from the asylum era.

“Forgotten Form” and “Trapped In Space” these two pieces were initial concepts but I decided to include them as a part of the final project each hand embordered piece took around ten hours each. The two are to be displayed together. These pieces are representational of how people whom were taken to asylums were forgotten. They were perhaps trapped within one’s mind, more so after being lobotomized. The shape of human trapped within space of the asylum and now forever trapped within the thread of my work. Never to escape the space that confined them. There are many stories of haunted asylums’ the energy caused by filicide is locked within the walls of asylums, causing a disruption in time and space. Forever trapped within the space of confinement, now confined to the articles on the internet, and trapped within the threads and fabric where their images came to be.

References

Chow, Winnie S., et al. “What Drives Changes in Institutionalised Mental Health Care? A Qualitative Study of the Perspectives of Professional Experts.” Social Psychiatry & Psychiatric Epidemiology, vol. 54, no. 6, June 2019, pp. 737–744. EBSCOhost, doi:10.1007/s00127-018-1634-7.

“filicide, n.1.” OED Online, Oxford University Press, September 2020, http://www.oed.com/view/Entry/70186. Accessed 13 October 2020.

Heuring, Darcy Hughes. “‘In the Cheapest Way Possible…’: Responsibility and the Failure of Improvement at the Kingston Lunatic Asylum, 1914-1945.” Journal of Colonialism & Colonial History, vol. 12, no. 3, Winter 2011, p. 3. EBSCOhost, doi:10.1353/cch.2011.0033.

Hutchison, Iain, and Dee Hoole. “Discharge, Disposal, and Death: Outcomes for Child Inmates of the Scottish National Institution, Larbert, and Stanley Hall, Wakefield, to 1913.” Journal of Family History, vol. 45, no. 2, Apr. 2020, pp. 207–227. EBSCOhost, doi:10.1177/0363199019865918.

Karlsson, Sandra. “‘You Said “Home” but We Don’t Have a House’ – Children’s Lived Rights and Politics in an Asylum Centre in Sweden.” Children’s Geographies, vol. 17, no. 1, Feb. 2019, pp. 64–75. EBSCOhost, doi:10.1080/14733285.2018.1474173.

Lux, Erin J. “Susan Bartlett Foote. The Crusade for Forgotten Souls: Reforming Minnesota’s Mental Institutions, 1946–1954.” Journal of the History of Medicine & Allied Sciences, vol. 75, no. 1, Jan. 2020, pp. 121–122. EBSCOhost, doi:10.1093/jhmas/jrz049.

Mcneil, Elizabeth. “KENNEDY FAMILY SHAME Hidden Daughter. (Cover Story).” People, vol. 84, no. 11, Sept. 2015, pp. 52–58. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=109265050&site=ehost-live.

Raoult, Sacha, and Bernard E. Harcourt. “The Mirror Image of Asylums and Prisons: A Study of Institutionalization Trends in France (1850–2010).” Punishment & Society, vol. 19, no. 2, Apr. 2017, pp. 155–179. EBSCOhost, doi:10.1177/1462474516660696.

Reinhardt-Wood, L., and Kenneth T. Kinter. “Inpatient Psychiatric Rehabilitation: An Alternative to Bringing Back the Asylum Dawn.” International Journal of Psychosocial Rehabilitation, vol. 20, no. 2, July 2016, pp. 55–58. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=121016146&site=ehost-live.

Søndenaa, Erik, et al. “The Characteristics of Patients with Intellectual Disabilities Held in Forensic Asylums in Norway: 1915-1987.” Scandinavian Journal of Disability Research, vol. 20, no. 1, Jan. 2018, pp. 131–138. EBSCOhost, doi:10.16993/sjdr.1.

United States Holocaust Memorial Museum. The Murder Of The Handicapped. Holocaust Encyclopedia. Date Of Access September 30 2020 https://encyclopedia.ushmm.org/content/en/article/the-murder-of-the-handicapped

Walbaum, Sharlene D. “The Invisible Woman: Susan Carnegie and Montrose Lunatic Asylum.” History of Psychiatry, vol. 30, no. 4, Dec. 2019, pp. 409–423. EBSCOhost, doi:10.1177/0957154X19860035.

Is Illness Really Taboo?

As someone who sometimes needs a wheelchair, I need someone to push me around. Something I have noticed while I am in wheelchairs people never make eye contact with me; they always talk to the person that is pushing my wheelchair will call the person pushing the wheelchair at handler so they won’t view me they won’t connect with me or get down to my level. If they do talk to me, they speak to me like I have a developmental disability. The ableist mentality comes in because people correlate a wheelchair with someone lesser than, so then they talk down to them. Assuming someone is mentally incapable of having a conversation because they are in a wheelchair, it is ableist.

I’ve been talked to like I’m a child. I have been ignored to the point where they’re asking my handler everything; they want to know about me because, according to them, the person who does not know me can get the information out of my handler. After all, why would they even talk to me? Ableism is garbage, it’s toxic, and I’m sick and tired of it being propelled forward in society and stink stereotypical views of people portrayed in the media.

My lifelong dream was to be a doctor. I am a patient. And I have had to research excellent links to facilitate my care—the lack of funding awareness and overall understanding of what I live with. More often than not, I have been met with doctors who have told me my diseases do not exist. Just because something is rare doesn’t mean it is a myth. Seeing is not believing; this mentality is problematic as rare diseases are not always seen on the outside of a person’s body. We may not see what is making someone sick; this doesn’t mean they are lying. Invisible diseases are not seen, and the reality of not believing is damaging to patients who are battling an illness; isolation can be traumatic when fighting for your life.

There are over 6000 rare diseases globally, and millions of people suffer from rare diseases, and millions of people are not heard. I cannot tell you the isolation and the frustration that comes along with being rare. People around me have told me they have not heard of what I have; therefore, it does not exist. This is a false way of thinking; it is inappropriate; it creates isolation, creating fear and misunderstanding. There needs to be understanding. Awareness is where things start. Start small start building now for a better future.

I have nearly 13 years of research that I’ve done myself about my conditions and try to get you to see the other side of reality, which is the world of the chronically sick. A world that is viewed as lesser than, that is considered to be more inferior in value. And I’m here today to tell you I have value, and I am a university student, I am an activist, I am an advocate for people with disabilities, and I believe in changing the toxic narrative of ableism. I will continue to do what I can to show people that I am still a person regardless if you can see my face or not with the mask I have on. I have feelings; I have emotions; I have dreams I have once.

I want to be successful like everybody else. Just because I am sick does not mean that I am lesser than it does not mean I have less to offer; if anything, I have a different perspective to bring to the artistic table—one to show you that just being sick isn’t all there is. Yes, I am showing you a video of myself receiving IV hydration at home, but my words are actual, and I’m doing this voice-over on a good day. Some people see one or the other as an example when I go to school and when I was able to go to the building itself, I wasn’t looking like this because I was having a good day is and I wasn’t severely dehydrated like I am now.

Ableism is something we all face when we live with chronic health issues; being treated differently and discriminated against comes with being sick. The overtones of ableism may not be evident at; first, it is essential to notice the ableism within society and address it. Being ill or disabled does not mean you are lesser than; this thought pattern is inherently ableist. Remember, you are a vital part of society because there is only one of you. No matter what the ableist society tells you, you have worth; you matter; you are a human and deserve to be treated as such.

Thank you for taking the time to read my blog. I hope you have a wonderful day. Feel free to check me out on social media. @AriCubangbang | Linktree

Behind Surviving Chronic Illness; Ari Cubangbang

I am a writer, an artist and a student at AUArts. I live with multiple rare diseases and complications from them. I have had non-modularly familial papillary thyroid carcinoma, which spread to my muscle and lymph nodes. I had bilateral radical neck dissection, which resulted in me having muscle, lymph nodes, and thyroid removed. The surgery resulted in me now having chronic hypoparathyroidism and hypothyroidism. A year later, I was diagnosed with paracervical cancer, a year after my first cancer.

A few years later, I was diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder. In short, EDS causes me to experience frequent dislocations of my joints, esophageal dysmotility, chronic pain, frequent bruising, extreme fatigue, and more. EDS causes my body to dump nutrients, and I do not absorb things properly, which results in needing to take pancreatic enzymes regularly.

Hyperadrenergic Postural Orthostatic Tachycardia Syndrome is a rarer form of POTS. HyperPOTS causes me to have blood pressures 220/110 and tachycardia of 185 bpm. I am chronically dehydrated and have too much norepinephrine in my system, which causes anxiety and insomnia. I also live with Mast Cell Activation Syndrome; this illness makes my body seem allergic to everything, causing throat closers and causes multisystemic issues. Some of my lesser diagnoses are pernio, Reynaud’s phenomena; I take upwards of thirty pills a day to make my body function and keep me working.

I was told I would not be able to go to school nor have a normal life. While I do not have an everyday life, I do what I can to busy my mind and keep a positive outlook. I find cultivating a positive headspace has helped me in many of the traumatic medical situations I have been in. I am blessed to be alive and am grateful to be going to university to chase my dreams. As someone with disabilities, I know the educational system can be frustrating to navigate but advocating for ourselves is vital to helping others understand our needs. It typically takes disabled students too long to get their degree; I try not to allow that to affect me negatively as I am working towards a future I want with my schooling.

I am an advocate and an activist and am against the systemic issue of ableism. Ableism is discrimination towards people with disabilities, and the world is made for the non-disabled. I hope one day the systemic toxicity comes to an end, and we can all work together for a better future, one that is inclusive of everyone with disabilities. I create comics, I write daily, I am an advocate/activist, and I enjoy cosplay. Cosplay is costume play; it is an act of dressing up as your favorite character from a video game or a movie. I volunteer and advocate for people with disabilities. Disabled voices and rare voices need to be heard. The time for inclusion of all is now.

Ableism A Systemic Issue

A short film can be viewed on my youtube channel. NAKED; THIS IS NOT A NUDE FILM BY ARI CUBANGBANG – YouTube

I am a passionate artist, I make art when I can and wanted to share a video with everyone I have created about chronic illness and how it impacts my life. I do talk about ableism a lot this is because it is a systemic issue and something I truly want to see change.

Surviving Chronic Illness Comic #2 The Mistake

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Isolation In Illness

Isolation in illness, my life is not void of this, perplexing, filled with uncertainties and the thought of people leaving as quickly as they have walked into my life. I have not come to the conclusions I have without much thought and experience. My experiences have led me to my views.

Isolation is being ill alone. Even if there is a group of people around you, you feel alone. They can not relate to the pains and trials you face alone. Health privileged people have a hard time grasping the realm of the chronically ill. Health privileged people do not understand the cost of illness, whether financially or mentally.

I respect those in my life with health privileges, but they can not relate to the isolation I feel in my illness. I battle diseases that no one can see; I deal with complications of conditions causing pain within my joints, bones, organs, even my skin. But they can not see it nor relate to it. Someone who lives with a similar illness may very well be able to tell you they are able to relate to your illness.

Thus, I am blogging again as I have in my past, looking for people like me. People who can genuinely say, “I understand how hard it is to keep going.” The reality is, it is hard to continue moving forward. My phone doesn’t ring; there is no anticipation of weekend plans or the hope of being invited to an event. I don’t game with anyone anymore. My boyfriend calls me and we talk, we laugh over a video call or we watch shows. I am blessed to have him in my life, I have finally found my person, the person I know is my forever. The little things he does brings me great joy. Besides my boyfriend calling the other ten to twenty calls I get a week are from doctors. It is not complaining to share your story. I will not be quiet about the reality of the hardships people like me face and say nothing about.

I am tired of being alone in this battle, being quieted by social media, being shoved back down by an ableist society. This kind of treatment is isolating. Why should I be quiet? Why should I not speak up? People can not handle my illnesses because they are ill-equipped, not because I am. I am the one living with diseases and striving for life. While doing so with a boyfriend who supports me, I still long for that group of friends to call my own. A place where I belong, a place where we can lift one another up and have a girls night.

I will expose the cracks in society made by ableist intent. I have started to wonder what happened to humanity, abandon the sick and leave them high and dry; how is this being humane? It is inhumane to leave sick people, and it is an ableist capitalist society fueling this toxic viewpoint. Why do people say things they do not mean? Why do people make it seem like they will stay when they leave? I am blessed and grateful to have my boyfriend and parents check in on me from time to time. However, what about the people who have no one? Who has had their entire family turn their backs on them because they are ill? What about the people who fall through the cracks and give into depression and end their lives? What about us, the disabled, the suffering, the ones that are battling brutal battles alone, in isolation. Why is the world so cold to people? The only explanation I come to is because of ableist intent.

Isolation plagues me when my phone doesn’t ring; I give into the internal ableist voice, telling me I am not good enough and worthless. When this is untrue yet, it is easier to believe when there is no one around you physically to make you feel as though you are worth it. I struggle with thoughts of ending my life; I will not lie; I have tried to end my life in the past. The thoughts linger, and sometimes the pull to end my life becomes something I don’t want to fight anymore; when that happens, I reach out to my therapists, I endure more therapy. I talk through the pains; I work through them. I became stronger because of it. I am strong because I had to be, but I am tired. I do not condone anyone ending their life because of chronic illness. Reach out to the people around you, those who you know you can lean on, and if there is no one, perhaps start therapy. Therapy may not cure the isolation, but it will help you come to a road of healing and understanding and will help you reach out from the depths of your disparity towards some chance at hope. I can’t promise it will be ease, the road is hard, you made it this far, do not quit on you.

Advocating For Yourself

Something you’ll have to continue to do throughout your disease journey or chronic illness is advocate for yourself. What is advocating? Advocate is defined as “[a] person who is appointed to advise on and protect the rights, needs, etc., of a vulnerable adult or child, and act as his or her representative” (“advocate”). When you are ill being an advocate for yourself will become a full-time job. It is critical to take breaks, and remember you matter, the journey may be hard but you do not go it alone. All of us living with complex illnesses are doing the same.

It is essential to advocate for yourself because you must keep your best interest at heart the entire time. Advocating for yourself never stops; this is something that I have wanted a break from numerous times, but the reality of my illness means I cannot stop. I must continue to advocate for myself, or I become the one that suffers. If I do not advocate for myself, doctors, nurses, paramedics, anyone in healthcare could end up harming me if I remain silent. I need to tell the healthcare providers what I need. Just as you need to tell your healthcare providers what you need, this means being open and honest about what is going on with your conditions. Telling doctors, nurses, paramedics, or anyone else involved in your care what you know works for you or doesn’t. Many times, we take what someone in healthcare says as law, and there’s nothing else to do about it. If you know a treatment option will not work for you it is vital to speak up and tell doctors, it is after all your body that is affected by treatments. There are a lot of things within your power to help you get the care that you need.

Examples of getting the care that you need. Something I need is Hydration Therapy this is called Hypodermoclysis. Hydration Therapy keeps my body hydrated because the diseases that I have chronically dehydrate me; this creates a sense of feeling like I am hungover all of the time. Not being properly hydrated can lead to dire consequences. My rare diseases make me feel hungover because my body is not retaining any nutrients; my body dumps all nutrients and hydration out of my body. Getting hydration was something that I needed to do as I advocated for myself to be able to get Hydration Therapy.

If I would’ve just said nothing to doctors, my blackouts would’ve progressively gotten worse, and I would’ve potentially ended up having life-threatening episodes because of dehydration. Dehydration is very dangerous, and it is something if gone untreated can cause dire side effects. I am not a doctor; I am a patient, and as someone that lives with chronic dehydration, I know when my body is becoming more dehydrated because of the symptoms that I encounter. By talking to my doctor and telling him that I need more hydration more often and working with him and other healthcare professionals, I have been able to get onto an HDC. HDC is a transdermal (meaning in the skin) hydration, it does not travel through the vehicle of a vein, this type of treatment is benefiting me for now and I hope it benefits me in the future. I am hoping I do not need to get a PORT as that would be the next step if HDC does not work.

Hydration Therapy can increase my quality of life, and that is why I am using it, to make me better, not make me worse. If any treatment is making your body worse you need to tell your doctors, they can change the treatment plan and potentially do something to help you. I have noticed with myself and other people the unknowing feeling of whether they should say something to a doctor about something not working for them. If you don’t say something to a doctor and something they are doing to treat you is causing harm, that’s not good for either party. It is essential to speak up for yourself and know what is working and what isn’t working for your body; this way, you can get the best treatments for your disease that you need.

Everything that you do starts with advocating for yourself. It comes down to figuring out what you can do to help yourself in the long run because you know your illness best, you know your body best. Even though your doctors may have other people with similar diseases, everybody’s body is diverse. Suppose your body is not responding to typical treatments like somebody else; you need to be looking into other avenues. I know it can be a very exhausting process. It is not easy, and it does take time. When you live with chronic illness, you become a professional patient in a way—taking the time to learn about your condition and focusing on what you need from your doctors to help you have the best quality of life possible. It’s essential to tell your doctor all of your symptoms, educate your doctor to inform them about your symptoms.

Keep moving forward, keep advocating for yourself to get the best quality of life. You can do this. You can survive through the hardship you are facing; it all starts with you. Thank you for taking the time out of your busy day to read my blog. I will be here next week on Thursday for another blog post. See you soon survivors.

Works Cited

“advocate, n.” OED Online, Oxford University Press, March 2021, http://www.oed.com/view/Entry/3022. Accessed 9 March 2021.

Ableism and Chronic Illness Part 1

         Illness is not taboo, or is it? Ableism is something within society that procures misrepresented ideological views of the disabled and the sick. Ableism is discrimination against people who are disabled. The world is set up for people who are non-disabled; this is a fact. Before I get into the details of my video, I want to share a little bit of something that happened to me when I was in a wheelchair once.
         As someone who sometimes needs a wheelchair, I need someone to push me around. Something I have noticed while I am in wheelchairs people never make eye contact with me; they always talk to the person that is pushing my wheelchair will call the person pushing the wheelchair at handler so they won’t view me they won’t connect with me or get down to my level. If they do talk to me, they speak to me like I have a developmental disability. The ableist mentality comes in because people correlate a wheelchair with someone lesser than, so then they talk down to them. Assuming someone is mentally incapable of having a conversation because they are in a wheelchair, it is ableist.
         I’ve been talked to like I’m a child. I have been ignored to the point where they’re asking my handler everything; they want to know about me because, according to them, the person who does not know me can get the information out of my handler. After all, why would they even talk to me? Ableism is garbage, it’s toxic, and I’m sick and tired of it being propelled forward in society and stink stereotypical views of people portrayed in the media.
         My lifelong dream was to be a doctor. I am a patient. And I have had to research excellent links to facilitate my care—the lack of funding awareness and overall understanding of what I live with. More often than not, I have been met with doctors who have told me my diseases do not exist. Just because something is rare doesn’t mean it is a myth. Seeing is not believing; this mentality is problematic as rare diseases are not always seen on the outside of a person’s body. We may not see what is making someone sick; this doesn’t mean they are lying. Invisible diseases are not seen, and the reality of not believing is damaging to patients who are battling an illness; isolation can be traumatic when fighting for your life.
         There are over 6000 rare diseases globally, and millions of people suffer from rare diseases, and millions of people are not heard. I cannot tell you the isolation and the frustration that comes along with being rare. People around me have told me they have not heard of what I have; therefore, it does not exist. This is a false way of thinking; it is inappropriate; it creates isolation, creating fear and misunderstanding. There needs to be understanding. Awareness is where things start. Start small start building now for a better future.
         I have nearly 13 years of research that I’ve done myself about my conditions and try to get you to see the other side of reality, which is the world of the chronically sick. A world that is viewed as lesser than, that is considered to be more inferior in value. And I’m here today to tell you I have value, and I am a university student, I am an activist, I am an advocate for people with disabilities, and I believe in changing the toxic narrative of ableism. I will continue to do what I can to show people that I am still a person regardless if you can see my face or not with the mask I have on. I have feelings; I have emotions; I have dreams I have once.
         I want to be successful like everybody else. Just because I am sick does not mean that I am lesser than it does not mean I have less to offer; if anything, I have a different perspective to bring to the artistic table—one to show you that just being sick isn’t all there is. Yes, I am showing you a video of myself receiving IV hydration at home, but my words are actual, and I’m doing this voice-over on a good day. Some people see one or the other as an example when I go to school and when I was able to go to the building itself, I wasn’t looking like this because I was having a good day is and I wasn’t severely dehydrated like I am now.
         Ableism is something we all face when we live with chronic health issues; being treated differently and discriminated against comes with being sick. The overtones of ableism may not be evident at; first, it is essential to notice the ableism within society and address it. Being ill or disabled does not mean you are lesser than; this thought pattern is inherently ableist. Remember, you are a vital part of society because there is only one of you. No matter what the ableist society tells you, you have worth; you matter; you are a human and deserve to be treated as such.

Allow Yourself To Grieve

What does surviving chronic illness look like? It starts with realizing you are sick, you have a chronic condition, and it isn’t going anywhere. While it may be something of a challenge as you got through the roller coaster of grief, I can tell you that things will change once you get to acceptance. Not everything will be solved right away; it takes time. The grieving process starts with denial, anger, depression, bargaining, and lastly, acceptance.

Denial is the first thing to set in; there is an urge to fight the diagnosis, disbelief that one’s body is not working like it once did. Denial is a challenging first step; at times, I knew I wanted to be healthy; I wanted to be more like my friends and keep up with them. Over time I realized I couldn’t, and I wasn’t invited to events. Eventually, the isolation of having people leave made me slip further into denial; I didn’t want to be sick, I thought I could subsequently be healthy again. This thought pattern led me to anger.

Anger with illness part of the anger we feel can stem from internal ableism. Ableism is discrimination towards disabled people; the world we live in is set up for non-disabled people. When I got sick, I had some amazingly bad self-hatred going on. I couldn’t keep up with my friends; I have to miss out on events. I spent more and more time in bed and felt like I wasn’t achieving anything. My anger was directed inwardly, and this took me the path of depression.

Depression is an easy phase to get stuck in, and I have met many people with chronic health conditions that have been stuck in this state. Inward anger fuels depression and makes it more difficult. It is a challenge to deal with all of the doctor’s appointments, labs, the tests at the hospital, and eventually, all of that became all-consuming, and I wasn’t leaving the house for fun. Every time I left the house, I felt like I was going through illness motions again. I could maybe ask a higher power to make everything better, and so I began to bargain.

Bargaining praying to God, begging for things to be different. If I do this, you will heal me. No, no one made my illnesses go away; yes, my cancers were in remission. Still, at the beginning of being diagnosed with the rare diseases, I have this tiny blip of hope or something that was telling me I would be able to get away from it all at some point; maybe if I change my behavior, I would get better. Sadly, this was not the case; the only way to get better with a chronic illness is to gain acceptance.

Acceptance realizing you have an illness or illness is when you can start your journey with healing your mentality. Knowing your diseases will not go away and know they do not need to turn you into a negative person whose sole purpose is to be down on themselves is how one can come to acceptance. Knowing deep down I had value how I got to a place of acceptance; I was not merely my diseases; I was more, I wanted more than being hostile and angry. I wanted to feel at peace, and the way I go there was realizing I needed to accept myself full-heartedly.

It is vital to remember it is ok to grieve; we must mourn the loss of a healthy life. Without suffering, we are putting ourselves in harm’s way of potentially getting stuck in the process along the way. It is ok to feel it; it is ok to go through all of the grief motions; you need to go through all of the grieving waves to get to acceptance. It won’t be easy, but it will be liberating once you get to the point where you know you have what you have, and it will not go away.