Introduction To: Inside Curable Lives

Introduction To: Inside Curable Lives

By Suzanne Stewart.

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”, came out in September. 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 medications as well as medical marijuana. Episode 2 finished and posted in October. I was happy to be able to participate in both of them. 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”.

Suzanne Stewart

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,“Inside Incurable Lives”, were an extension of that feature documentary called “Becoming Incurable”. Victoria then made a Facebook page and it became a platform for the chronic illness and pain community. She has become a “voice” for those of us who live with chronic illness and she is showing our side of this painful journey. She wants to do whatever she can so people learn about the feature documentary. Below I’ve posted the YouTube links to the two video compilations that are also posted on Victoria’s Facebook page called “Becoming Incurable”. It has the same name as her feature Documentary.

But before we get to the two video compilations in which the chronic pain communities on Facebook and Instagram 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 compilations and the three persons in the larger documentary, I wanted to know what her 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 Victoria Suan:  

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

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

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation.  For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

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Authored by: Suzanne Stewart

There are 9 comments for this article
  1. Butterfly Protocol at 5:07 am

    TERRIFIC effort, and ever informative!
    Our Founder has one such compelling ‘story.’
    We are a bit confused, however, by the semantic dissonance between the Title of your article, “Introduction To: Inside Curable Lives”
    and, the title of the featured video,
    “Inside Incurable Lives.”
    We point this out purely because we would LOVE to RT this out to the broader community, but hesitate to do so as a result.
    We’ll come back periodically to see if this has been edited, or PLEASE tweet with @emergVictorious tagged and we’ll get it out to everyone!
    Thanks for your supportive, eyeOPENING work!
    TheButterflyProtocol™ Team

  2. Sheldon at 8:11 am

    I would love to help people understand and see what it’s life to live an incurable life of pain and all the stress of the so called opiods epidemic is having on these patients

  3. Cynthia at 5:12 pm

    Wow, thank you for,this….I’m feeling hopeful that the other side of the story might get out, eventually. I appreciate what Suzanne and Victoria are doing…very much.its just flat out wrong, what has been happening.

  4. Judy at 2:28 pm

    WOW!!!!! I just watched both of the YouTube videos, and there are no words to explain my feelings. BRAVO!!! to Victoria Suan for putting these out there!!! And BRAVO!!! to Suzanne Stewart & all the others for being so brave to share their stories. I think EVERY Politician, EVERY Doctor, The President & his Drug Commission, (specifically Chris Christie & Jeff Sessions), EVERY person in a position to make irresponsible rules that hurt the entire Pain Community, even the CDC, FDA, DEA, and Big Pharma should see these videos. And EVERY news station that has jumped on the “opioid epidemic” bandwagon, should see these videos to better understand living with chronic pain. WELL DONE, Victoria & THANKS SO MUCH Suzanne for sharing this with the National Pain Report. 🙂

  5. Tricia S at 10:45 am

    Can I first say how beautiful you are, even in pain!
    Thanks for sharing these videos, website, etc. with the community.

    I have had chronic pelvic pain since 1997 due to misdiagnosed endometriosis. I’ve since had 5 surgeries just for endometriosis, but I also have chronic inguinal hernias (I think it’s an even 10 now!). In their efforts to keep the hernias closed, all different types of mesh were tried, which caused even more pain.

    Since my last surgery I’ve had my pain meds reduced, not because I was ready yet, but because my doctor is afraid. I’ve been his patient since 2003.

    As Dr. Ibsen says, “The insanity of this situation could not be more dire.”

  6. scott michaels at 9:30 am

    Before i too become a suicidal statistic, does anybody know of any doctors that prescribe high dose pain relievers in souther ca. I live between LA and san diego. Dr tennant does not answer his phones or return messages so any body else. The paim is now completely un bearable and kaiser wont do a thing
    Shoehause@gmail.com

  7. Signe Topai at 5:36 am

    First, I want to Thank you Suzanne and Victoria for the videos. Occasionally, you will hear on the news the effects the opiate epidemic as on chronic pain patient , but it is always concludes with the miracles of other modalities of treatment other than opiates… physical therapy, exercise, and dietary changes. As if we haven’t already spent years and hundreds of dollars practicing other modalities of treatment.
    Suzanne, Victoria….you must dig deeper! Everyone can feel sorry for the chronic pain patient for ten minutes but to actually show the civil rights injustices going on. They need to see the patient who loses her leg because she can’t get treatment. The women being arrest by police officers and forced to take a sobriety test because she as a cane in her car. The patient in a debilitating flare that is turned away by the doctor on call or Urgent care due to an opiate contract. One he or she as never violated! Show the thousands of dollars of hospital bills and ambulance charges because the patient couldn’t be treated. All the tragic stories we read on this site mean nothing unless the injustices are shown to the public. Please dig deeper!! Show the WHOLE STORY!!!!

  8. Nancy at 2:30 pm

    Thank You Suzanne and Victoria. My pain meds, for my fibromyalgia, have been reduced to a third of what they once were because of the new prescribing rules. I was not/am not addicted to them, I am merely dependent upon them, as a diabetic can be dependent upon insulin. Our voices need to be heard and our stories need to be considered. I am blessed in that I can still work as long as the job requirements are not physically demanding. I recently had to give up one of my part time jobs because of the physical demands. I pray that the videos and the voices being raised will bring some sanity back into the discussions surrounding both real addiction and real pain.

  9. Mark Ibsen MD at 3:23 am

    Thank you Suzanne:
    This is indeed a human rights issue.
    It’s also a public health issue,
    Invisible to most,
    Occurring right under our noses.
    Yesterday,
    A patient told me a story
    Of terror:
    The patient was a victim of an armed home invasion.
    4 people invaded his home to steal his pain pills.
    One was armed with an assault rifle.
    He shot and killed the armed invader.
    The police investigation cleared the pain patient, who lost many pain pills when the police confiscated them. From his safe.
    The insanity of this situation could not be more dire.

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