Spotlight on: James Baker ????????
“Not only was I diagnosed with VS, but I have also lived with another challenging rare disorder known as Superior Canal Dehiscence most of my life. Think of it as Visual Snow, but for the ears. It’s rare to have that disorder in just one ear, let alone have it in both. Unfortunately I’m a vet of 35 years of the latter as well.
Many of the symptoms of both VS and SCDS overlap, making my tinnitus scream, brain fog so bad I wonder if I’m actually awake or in a dream most of the time, depression, fatigue, etc are all very, very intense as the two disorders blend together for me.
Here’s a quick overview of that disorder to gain context to what it’s like to live with both. When I walk it’s like thunder. I can no longer brush my teeth. It’s so loud. Talking is a chore, as I sometimes momentarily lose my hearing if I speak too loud. The Autophony really is overwhelming. It actually causes my eyes to physically shake when I speak.
I have had this vision since early life. I always thought these things were normal. The streaky lights, “after images”, night vision problems, fine static, the weird sights.
To finally find a doctor (and awesome) Optical Neurologist not only diagnose me, but tell me I was a classic case for it was a HUGE relief in and of itself. Now I at least have a name for that disorder too. And knowing the enemy is half the battle.
If my life and story can give just one person hope to keep going, then it’s worth a little discomfort in this temporary life. So why not do good, enjoy that even though I’ve lost sight. I can still see, and even though I’ve lost some hearing too I can still hear! It’s all how you look at things. Be thankful for what you have because I can assure you, the ole cliche that you don’t know what you got till it’s gone speaks volumes, and couldn’t be more true.
Link to my spiritual journey: https://m.facebook.com/story.php?story_fbid=10220624383821613&id=1295445166“
