The Face of Ramsay Hunt Syndrome
This past weekend marked 125 days since I developed Ramsay Hunt Syndrome. Multiple doctors, self-advocating, and trying Acupuncture to help my nerves heal. If you've developed Ramsay Hunt (RHS) or Bell’s Palsy, my videos discuss what I've done and how I'm recovering #ramsayhunt #bellspalsy.
Learning to Laugh with RHS.
I’ve found that laughing is the best exercise for my face and when I was dealing with frustrations, depression, and heartache over a face I no longer recognized, it was hard to laugh. (personally, I played Parks & Rec on repeat and watched Deadpool multiple times).
I can’t watch sad shows, and I’m really hoping that I’m past the emotional luggage from RHS before Game of Thrones comes on! (refusing to watch trailers) I just KNOW I’m going to be mad, sad, angry, and will cry during next season’s final ride.
In browsing the internet for RHS Humor (FYI, very little found); some memes but very little. I did discover a comedian that used RHS to laugh. Comedy Brian; is worth a watch and share!!
RHS Struggles & Depression
Personally I struggled with trying to shoot a video of myself talking. I shot multiple times..and then reshot. For good measure, I reshot again. The hardest part is that I am overly critical of how I speak and what I look like on camera. The photographer side of me..hated the angles, lighting, sound and for good measure, I hated how I looked.. hair should look clean/styled, some make-up, etc. It was depressing, seeing myself, not as myself.
The reality is, I feel worse than I look. I’m tired (and my eyes show it), I have no energy. I loose my train of thought as I’m speaking to the camera and always ended up veering off course. Since my brain seems to not work the way I was used to; I now write a brief outline of the topics I want to cover. It helps, but I still end up forgetting where I was and would have to start over.
I’ve spent 47 years, learning to love my face, all it’s blemishes, sun damage and scars. My face told my story. Lines that showed I laughed alot, that I had enjoyed my life. Lines that gave me character. When I saw a photo of my face taken during during a really stressful time in my life this past Christmas;
I laughed.
I couldn’t help it. I had ZERO lines! Half of my face looked like it was 20 years old after a really bad botox job, I mean like Flat Stanley bad. Which was the image that popped into my head when I saw a face I didn’t recognize; the other half was 47 years old (+10 years of exhaustion). I was a bad remake of “Victor/Victoria” but sounded like Marlon Brando when I spoke.
January was a horrible month, with a very small break of sunshine during a weekend “girls” trip to Vegas. It’s definitely not a time in my life I want to remember.
Finding Hope with Ramsay Hunt
It was and is still hard to take a selfie. When I created the image for the video, seeing the differences in my smile gave me hope. Over the last couple of months; I would read story after story of others that were impacted by RHS. We all had the same script, some slightly different; many treated right away, but quite a few (like myself) were brushed off by doctors claiming it was just an earache. I didn’t go to medical school for a reason and I shouldn’t have to discover what I have on my own.
We all have the same self-doubting, depressing feelings about how we look, function and struggle to just do day-to-day tasks. The feeling of hopelessness when doctor after doctor tells you to be patient. That there is nothing else that can be done. Researching, finding support groups, looking for alternatives, natural remedies, ANYTHING that could help.
I found my hope by performing the hardest task; Taking selfies & shooting videos of my face as I tried to smile. Hoping that I would eventually be able to see a change. It’s hard and many with RHS and Bell’s Palsy don’t like photos or videos of ourselves because it’s just reminder of the lack of information, the lack of knowing and the idea that it may take years before we can completely heal.
Becoming your own advocate I think is recommended. I messaged my doctors and asked question after question, until I finally heard a doctor (my neurologist) give a better explanation of how we heal. She went through the MRI with me. Literally saw the inside of my head…which was one of the coolest things to see and have explained. We discussed options. She explained how quickly nerves heal. The 30 minute conversation with her provided more information that 4 other doctor visits had done.
Be your own advocate!
Feb 8th: a small, tiny, microscopic movement on the left side of my mouth!! It was enough. It was a small sign of healing.
It was all I needed.
hope.
If you have RHS, Bell’s Palsy or any other medical issue that seems to only provide hopelessness, push through, trust you will get better. Don’t let it stop you from being you. Rest when you need to. Laugh often. Refuse to let this control your life and learn that naps, are your body’s best way to heal.
