Introduction To: Inside Incurable Lives

Published on November 13, 2017December 14, 2017 by Suzanne

We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis. Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony. This is the true “Opioid Crisis”. But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan. She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media. She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”, came out in September 2017. In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?” The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode 2 finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.

Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.” She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.

The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities. She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey. She also wants to do whatever she can so people learn about her feature documentary.

Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis. I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become close to several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.” She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel. Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?” My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families. Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to. But we are trying to fight because our very lives depend on it.

Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain. Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.

Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”. I think that it taught her and hopefully will teach others about “Invisible Illnesses”. She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”. She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community. If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue. I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide. It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.

Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:

https://www.youtube.com/watch?v=RjrJnriz6y8

https://www.youtube.com/watch?v=0CuFEgnz8yA

https://www.flipsnack.com/becomingincurable/inside-incurable-lives-issue-1.html?0=becomingincurable

Suzanne

Hello Luvs, I am a survivor first! I am also a Chronic Pain Patient who is hard of hearing and lives with Systemic-Full Body RSD/CRPS. It is the highest form of chronic pain, at #45 on McGill Pain Scale. Along with RSD/CRPS, I live with several other high pain chronic illnesses. In May of 2019, I had a brain tumor/auditory tumor called “Cholesteatoma” found. In July 2019, I had a Big surgery called “Tympanomastoidectomy” with a prosthetic Anvil-hearing bone to replace my diseased bones & oscillar chain. I’m Deaf/HoH & wear 2 hearing aids. I am a proud member of the Deaf community. In an attempt to keep my spirits up & to help others, I am involved with a few Awareness & Advocacy activities online: 1) I continue to be a mentor for newly DX RSD/CRPS patients for RSDSA & I do guest blogging for them 2) I'm a blogger and freelance writer 3) I’m a Patient Leader for WEGO Health 4) I’m the Social Media Assistant for Jim Broatch at RSDSA. In the recent past; I’ve helped IDA during Invisible Disabilities Awareness weeks & was featured on their "Invisible No More" YouTube Channel in 2010 or 2012. On other Social Media; I volunteer by teaching American Sign Language vocabulary for the "Deaf Socials”. I not only blog for my own therapy of sorts, but with the hope of helping others. Some other areas in which I try to volunteer when Im able, are: 1) I've been a Chemo-Angel, Card Angel, Special Assignments Angel and Prayer Angel for the "Chemo-Angels" program since 2005. 2) I've been a Patient Health advocate since 2007 3) I also have a sign Language Youtube channel where I post ASL Covers of Many different kinds of uplifting songs. (*The ASL Youtube page is found at: www.YouTube.com/ASLSuzyQ). Along with doing these things; I have held awareness events, fundraisers and have helped with other programs. In 2018, I was appointed to the US Pain Foundations Board of Directors. I stayed on for only 9 months due to internal turmoil & corruption. I tried to stay to help rebuild USPF, but it felt to me as though things went from bad or worse. My integrity pushed me to leave USPF behind and I resigned 9-2018. I always say that "HOPE is a verb, and in order to have it, you must do something". To keep it, you have to keep doing, trying and not give up. Most everything you need to know about me, or to find me on Social Media, you can find at: about.me/suzydukettes ...OR at TearsofTruth.com **I am not a Medical personnel nor do I claim to be an expert regarding any of the subjects I may write about. I write from my own experiences. Also, Please don't copy or reproduce any part of this blog without my permission. Thank you!