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
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!