Documenting The Documentary Journey

Life in the bubble is a documentary that is being made possible by Storyhive and Telus. I have been granted an amazing opportunity to share what it is like to live a bubble life. As someone who lives with my sock to life outside of my bubble is scary. And I feel like it’s time to tell all.

People like me don’t live “a normal life” we adjust to different kind of normal. A life living with limitations. We still live. We just don’t live like everyone else.

Life in the bubble is challenging. My life is constantly advocating for myself. While I would love to tell people that it gets easier, it doesn’t. Life with illness is a challenge in itself and when you are stuck inside most of the time it should make it more difficult and disheartening at times. I have struggled with many aspects of my illness and many of the struggles I have done alone. Advocating never stops and it’s something that I have to continue to do. It is perpetuated by rare disease complex illness and a life lived separate from most of society.

I am excited to share the journey with you whether it is just a glimpse into some of the things I live with and talking with others and what they experience. The rareness and complexity of the illness is something that needs to be known. As someone who has had to change my life drastically and bubbled myself so to speak I have learned different ways of coping and finding things to do to keep my joy for life alive.

I find it interesting that at the beginning of the COVID-19 pandemic how many people were having such a hard time staying indoors, perhaps it’s my introverted Ness which made it a little easier, at times I did find myself to get rather depressed. However overtime being alone I noticed I had time to write my book. I wrote a book about the things that I live with about the things that I faced which aren’t just diseases. I’ve written countless short stories, poetry, working on Scripps. I’m drawing much more regularly than I ever have before. If anything the COVID-19 pandemic sparked a creative fire within me. Thus I decided to apply to the Storyhive All Access Documentary Edition. 

When my friend sent me the link to apply I looked at it and I got teary-eyed I wanted it so badly. I wanted to be seen and heard and I wanted others like me to feel the same. Even if I can’t reach out to them or find them I know there’s other people like me out there. We may be fewer and far between but we matter so do our stories. Us sharing what we’ve been through is of vital importance. While connecting with other people who have mast cell activation is difficult to say the least, I hope to show the struggles of the illness to the best of my capacity. I also want people to see what it’s like to live. Not give up, not give into the illness that tries to beat you down it tries to steal your humanity. Life and illness is still life worth living.

As the creative juices get flowing and I start thinking more about the documentary and honing in on one of my diseases I wanna share as much as I can information wise and experience wise. if my friend never would’ve sent me that application I wouldn’t be where I am at now. There’s a lot of work to be done and I was definitely overwhelmed after the first two meetings. However, I now feel like my thoughts are beginning to organize a little better and perhaps it’s because my pain is managed better today, I remain hopeful and vigilant with working on this. I am immensely grateful, I feel blessed for this opportunity and I’m going to do everything in my power to make it to the best of my abilities. It is my first film, and I’m hoping that is the first form of money. I can already see other ideas formulating and percolating within me for awareness purposes and reaching out to other people in the community of rare disease.

I have always been an activist, and an advocate for as long as I can remember. I did have some time where I needed to get some major therapy to work through some issues after my divorce but I am much better now at least mentally. My mentality has help me get to this point where I feel I have the capacity to help others again. And of all I can do with this film is show people what it’s like, and explain to others how to not give up and how to continue moving forward while being sick. I will feel like I’ve done my job. Our hardships can become a offshoot for other people to find healing and hope to get to that place of acceptance. While the road to acceptance is hard long and challenging I wouldn’t change it for anything. I want to help others get to where I’m at, because they deserve it, just as everyone deserves love and respect, everyone deserves to be heard and to live their life.

I am excited for the future. I am excited for this documentary. I’m excited to connect with new people form new connections and I hope to make a positive impact on other peoples lives.

Thank you for taking the time to read my blog post. I know that I had been tardy and I hadn’t posted a lot as of late. With a lot of medical things and stress in life getting in the way I felt like I was drowning for a bit. But I feel like I’m getting back on my feet again and I feel like I’m ready for this chapter. I’m excited to see where this goes and I’m excited to share this journey with you as I document my journey with my documentary. Whether I write it out here on my blog or if I write it all in a book I think documenting the process will help me in the future to recall the things that I need to do to have a place for making another film. I am a visual and audio learner, The process of me writing things down and also hearing me read it out to myself at the same time will help me to remember things to the best of my ability and I think this is the chance I have been waiting for for over a decade. 

Published by Ari Villain

Artist and writer. Living with chronic illness and writing about it. I have survived two cancers, I live with hyperadrenergic postural orthostatic tachycardia syndrome, ehlers-danlos syndrome, mast cell activation syndrome, jaundice, esophagus dysmotility, Chilblains, Raynaud's, migraines, asthma, and more. I have mental health problems which I am not ashamed of, I have CPTSD, anxiety, and depression. My medical history is extensive, but I will continue moving forward. I have hope to help others not feel isolated alone, and forgotten by an ableist society.

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