Behind the Scenes: My News Interview

I was recently interviewed by a news station about my Visual Snow story! It is set to air on November 5th in the 10 o’clock news on Fox Carolina. Find out how I struggled to not mumble and puke all over the news anchor and how, together, we blew some minds wide open…

A few months ago I wrote my very first blog post about my two-year journey through Visual Snow Syndrome (If you’re wondering what in the world is VSS? Find out here) and how I battled through negative doctor reactions to my symptoms and incorrect diagnoses… finally discovering Visual Snow Syndrome through Google searches… and eventually having to diagnose myself with it.

Since then, I’ve learned very much and very much has happened.

We did crazy things like this:

Visual Snow Syndrome
Visual Snow Syndrome

And then there’s…

a New Phase of Research (Docs are working towards a treatment!) We need help to raise funds to begin. Please visit our Go Fund Me link here.

an Awareness Video (Me + giant TV on head = Good Stuff) Watch the 3 min YouTube video and read more about why I did it here.

a New Forum at VisualSnowForum.com (woop woop!) Handy Tech-e Hubby made it so we can more easily discuss important info. If you haven’t checked it out and joined already, jump in! It’s free and open to anyone- you don’t have to be a VS sufferer.

…and a TV News Interview I did! I am so excited to tell you about this, that I have basically already passed out.

Here goes:

After years of strange looks and harsh questions from doctors, and a diagnosis of Persistent Migraine Aura, I gave up seeking treatment. There wasn’t one for Persistent Migraine Aura anyway, and my doctors made it clear they weren’t even sure that’s what I had, just that they didn’t know what else to tell me. Around this time I moved to a new state and didn’t seek out a doctor. Eventually, I came to find out about Visual Snow Syndrome, and the research, and that it was exactly what I was experiencing. I wrote this blog post about that journey and I’m glad I did because LO AND BEHOLD: One of my local news stations wanted to interview me about it!!!!!!!!!!!

With one caveat: they wanted me to have a doctor to interview too. I called about 30 different Neurologists and Neuro-Ophthalmologists in my city and asked if they had ever heard of Visual Snow… not one. Not only that, but many of them had 6-9 month-long waiting lists. I found the Neuro-Opto with the shortest waiting list and decided to heck with it and made an appt. Armed with this new knowledge (literally), I walked into an appointment with Dr. Mitch Wolin and the expectation that I would be greeted with the same hurtful looks and questions. I rattled off my list of symptoms and shakily handed him the documents, nearly ducking as I waited for his response. “Why yes, of course, you have Visual Snow.” UHMMMM Can you répétez s’il vous plaît?????

Me: So… you’ve heard of this before?

Doctor Wolin: Yes. I have seen a few patients with it.

Me: Would you be willing to let a news crew interview you about it?

Doctor Wolin: Sure.

There is a hole in the ceiling of that exam room where my brain exploded.

To further add to my complete excitement/bewilderment/disbelief/body-is-there-but-brain-has-clearly-left experience, he then spoke these crazy words:

Each month I give a lecture at the hospital to students of the University of South Carolina School of Medicine. Would you like to come to the next one and speak about Visual Snow?

I somehow refrained from the urge to jump about wildly and scream like a little schoolgirl.

Me: Yes. That would be *nice*.

People, I was completely cuckoo. I don’t even remember the rest of the appointment. I floated out of the building and floated home and did all of my jumping and giddy screaming there.

Fast forward to earlier this week.

The news crew wanted to set up two opportunities to film: One here at my home with my family and my personal life with VS. And the other at the hospital lecture with my doctor.

It must be said that while I can sit behind this screen and pour my heart out to you in writing, when it comes to public speaking I am exactly a stuffed piece of taxidermy. That mumbles.

I resembled said stuffed piece of mumbling taxidermy here on my couch with the beautiful news anchorwoman at my side and the giant light and camera in my face. If I slumped over and passed out at any point, they never did say.

At one point they went into my kids’ room and got some footage of them playing. To a 3-year-old, I think it looked something like this: Towering giant walks into your room carrying a rocket ship on his shoulder. You drop all your toys and your mouth. He commands, “Do not look into the rocket ship, son. Just pretend the rocket ship is not here.” (Blink.. Blink…)

The interview was successful in a relative sense. There were so many things I did get to talk about, but also so many things my frozen brains left out.

A few days later, we all met at the hospital for the lecture: me, the news crew again, Dr. Wolin, three hospital/doctor assistants, and six students from University of South Carolina School of Medicine, beamed in via Skype. There was a podium, and a mic, and several rows of seating. That podium tried to be the death of me. Right in the crosshairs of two large cameras and 12 pairs of eyeballs.

What happened in the next 10 minutes is nearly beyond words. I will do my best, folks.

I was under the impression that I would be speaking to students, but in fact they were university hospital residents (doctors)! They had never heard of VS and were very intrigued! I was able to talk about every symptom of VS (the static, the afterimages, the palinopsia, the BFEP, the floaters, the vibrating, the light sensitivity, the tinnitus, the whole enchilada) and I was encouraged to explain everything! The latest research in the medical journals, the upcoming research, how doctors are misdiagnosing or dismissing patients, etc. Not a thing was left out and it was all caught by the news camera on my side of the screen. Dr. Wolin did an interview with the station as well and told them that he does not believe it is as rare as we think it is, due to patients being disregarded or sent to therapists and doctors not knowing what to make of it. He said it is “humbling” when your patient comes to you with the research papers and a self-diagnosis and they are exactly correct. He said all of this right to the news camera! IT. WAS. SO. AWESOME.

There was room for questions and answers from the doctors after I gave my story, and the more they asked me, and the more they discovered, the more they were just blown away. Their faces were full of surprise, mouths wide open, hands in the air. I think the only two people who weren’t falling out of their chairs were me and my doctor. I don’t even know where the words came from, the clarity I finally spoke with, and the functioning of my brains. I didn’t mumble or space out, although I was again that stuffed taxidermy. I could have been thrown down a set of stairs and not lost my shape. But I’ll absolutely take it. I had a lot of people praying for me in this moment, and I am truly thankful for the strength I received from the Lord to stand up there and hold it together. It was not my own.

The hospital’s media relations specialist attended the lecture and was also completely floored by our condition and these tough circumstances. This story is set to air on November 5th in the 10 o’clock news on Fox Carolina (the November Sweeps) and she wants to assist me in reaching out to all of our other local media and newspapers to help us spread the word.

All of this was just… I can’t… Incredible.

And that’s not even enough. It’s not me. It’s not “Congratulations, Jackie! Thank you!“… it’s this: I was in the right place, the right time, with the right people, and the right opportunity, a strength that was not my own, and I am on the receiving end of an incredible reception from a crowd of people who knew nothing about this and wanted to know so much more. I am in shock. I am in a state of humble gratitude.

November is a little ways off, but it’s actually good news. The Sweeps season is known for more in-depth stories rather than tiny news-flash clips.

Fingers crossed. Toes crossed. Prayers going up! THANK YOU for your support!

Comments

  1. Cari Sherrod says:

    Awesome, Jackie!!!! I’m so glad it went so well. One day when a cure comes through, you’ll probably look back at this being the first, real game-changer! So proud of you!!

    1. Jackie says:

      I certainly hope so! Thank you, Cari!! xoxo

  2. Nichole Magner says:

    Wow, just wow Jackie! You are such an incredible person and so inspiring. I am so very proud of you and the opportunity you’ve had and knowing that because of the awesome woman of God that you are is why everything is coming together for you. I am filled with hope after reading this blog! I will continue to follow you and your stories and sharing them for my friends and family to read.

    1. Jackie says:

      Thank you, Nichole! I miss you girl! We are certainly connected, I think of you with every post! xoxoxo!!

  3. Donna says:

    You are an incredible woman, Jackie! You didn’t cower when doctors dismissed you,,, instead you armed yourself with what little data was available and attacked this head-on. You conquered your public speaking fears and you opened so many eyes… I am so proud of you!

    1. Jackie says:

      Thank you, Donna! xoxoxo!!!!!

  4. Jean Abbott says:

    Girl, you rock! It took tons of courage to step out of your comfort zone and do what you did. Even though you and your precious family are missed here in PCB, you were right where God wanted you. Thank you for being obedient and following the Father’s leading.

    1. Jackie says:

      We miss you too, Jean! Thank you for the support! Lots of Love xoxo

  5. Liz Ulrich says:

    I’m so happy how God has lined everything up for you! From moving your family to a new city in a whole new state and all of your awesome new experiences and opportunities! What an amazing story and thank you for sharing! You are such a huge inspiration to many! 🙂

    1. Jackie says:

      Thanks, Liz! I am nothing but shaped by beautiful friendships with wonderful women God has placed in my life, such as you!

  6. Jeffrey says:

    🙂 Thank you.

    1. Jackie says:

      Thanks for the support!

  7. Alexander Allum Hvaal says:

    Thank you, Jackie. Just wanted to say thank you for standing up for the visual snow cure campaign. I have visual snow and will continue to donate. Prayers gone up aswell.

    1. Jackie says:

      Thank you!

  8. Astrid says:

    Heey I wonder when or where we can see this intervieuw ? 🙂
    will it be placed on the internet?

    1. Jackie says:

      Hi 🙂 It will be aired in November, but only on TV in South Carolina. After it airs, there will be an internet link to see it. I will post the link on my blog page! And I’ll be sure to update this post when I know the date in November 🙂

  9. Mom says:

    So proud of this awesome daughter, woman, friend, family – LOVE. There will be a cure 🙂

  10. Erin says:

    Yay! Wow! This literally brought a tear to my eye. God is so good. It makes me think of a quote I’ve seen a lot lately about how He usually won’t move a mountain out of our way, but if we do our part & look to Him, He will help us climb it. You, lady, are climbing high!

  11. Jackie,

    Amazing story! Congratulations on getting this far! I’m a mom with a son who has been suffering from visual snow for so many years since he was in high school. I have done so much research you have no idea since this started back in 2009. There was minimal information back then. This year has been mind blowing. The internet has tons of information. I have a blog if you would like to hear my son’s story. I will be updating it really soon. Good Luck to you Jackie and may God bless you!

  12. Julie L says:

    Hi Jackie,

    My visual snow started back in September of 2016; feeling like I’m spending money on doctors for them to tell me they don’t know what’s going on. I was wondering if you could send me the link to the TV special, if it’s still available. Thanks!

    1. Jackie says:

      Yes, you can watch the segment here:
      http://jackievest.com/2014/11/watch-me-on-fox-carolina/

  13. Jonathan says:

    I am very hopeful that you will see this message. I was blown away when I was researching visual snow syndrome online and came across the segment featured on Fox Carolina. You see I live in Inman SC and I have suffered with VS for nearly eleven years now following a “minor” concussion. I spent two years seeking help but I was ridiculed by physician after physician. After I was made to feel psychotic by the omnipotent medical community I finally gave up and stopped searching for answers. I have recently began researching my condition once again and I was very surprised to finally see a name for this condition and that other people were experiencing the same thing. I am very happy to have ran across your segment and I plan on making an appointment with Dr. Wolin right away.

    1. Jackie says:

      Wonderful! I hope he can at least give you the assurance you need to know that this is a thing, and there is research going on, and when something comes available, he will be there to help us.

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