Before I broke through the vestibular migraine hold, I felt like I was living behind and viewing my life through a window. This feeling was every moment of every day. My body wasn’t allowing me to fully comprehend my surroundings. I could see but it always felt like I was looking through a window, and sometimes not a very clean one. In the beginning it was terrifying. It’s every moment and it’s a thick glassy window.
I was banging on the window screaming out to the rest of the world and everyone was looking as if to say, “We see you. You look perfectly fine.”
Then I’d yell back, “What’s with the window?!”
“What window are you talking about?”, the world responded.
I’d feel a pang in my heart as it started to sink in. Just because the window was very real for me, in no way meant that the rest of the world could see it. If you have journeyed with a vestibular something, there’s a good chance you know exactly what I’m saying.
[Note: VeDA states on its website: “…a large portion of people with migraine often have no accompanying pain, their predominant symptom instead being vertigo (a spinning sensation) or dizziness/ disequilibrium (balance loss), mental confusion, disorientation, dysarthria, visual distortion or altered visual clarity, or extremity paresis. This presentation may result in a visit to the emergency room and extensive laboratory, imaging, and other diagnostic evaluations—often with normal results, which lead to increased confusion and anxiety on the part of the patient.”]
My understanding of vestibular migraines from the many Vestibular Warriors that I connected with was that I was dealing with a nervous system problem. My eyes fill with tears as I type those symptoms because each one makes my heart hurt. Flashes of memories dance in my head. The dizziness lasted well over a year. The rocking boat feeling lasted a solid nine months. The feeling of unease was a part of me for far too long. My symptoms involved dissociative symptoms, which include derealization (feeling disconnected from your environment) and depersonalization (feeling disconnected from your body), repeated dizziness (or vertigo), nausea and vomiting, balance problems, lightheadedness, photophobia (sensitivity to light), visual issues and feeling unsteady.
Sometimes the window that I looked through would be super clean and I would almost think it wasn’t there but then out of nowhere the smudge would return and my heart would sink. I just had that thing cleaned, what happened!? This window stuff sounds sort of trippy, right? Yeah, that’s my vestibular stuff for you, only there’s no party and no one is on the dance floor, and it’s more like a bad dream that doesn’t quit.
I learned to live from behind this figurative window. No one else could see it, so it was just a matter of building up my confidence so that I could do everything I once did but this time from behind my window. In time, I did just that. Everything I learned to do from behind my window only empowered me on my journey of healing. I went to work, was a nurturing and caring mother to two little boys, I cooked meals, just simply showed up, found the power in meditation, and eventually found myself running the trails again and finding everything I felt I’d lost- all from behind my window.
I created a beautiful life behind my window and developed a mindset that I could do anything even with my window. That’s when something magical happened.
Around fifteen months in with symptoms all day, every day to varying degrees, I started to notice that my window was slightly open. The first time I noticed it, what I felt was pure bliss. I hadn’t seen life without my window in what felt like an eternity, and I had started to forget what life looked like without it. I didn’t know whether to sob happy tears or scream, or tell everyone in a one-mile radius, so I just danced in the kitchen (more on that in Uncovering Bliss).
In the beginning the window didn’t stay open completely. It would open, and stormy days would blow it a bit closed. Eventually, my toolkit kept it open.
Every day I stop to look at the world longer than I ever did before, because with vestibular stuff there’s a before and after, and my aftermath started out a thick smudgy window with lots of rainy days. Over time, with persistence, putting self-care first, nourishing my body, refusing to look backwards and finding a doctor who understood, I stepped through. I thank the universe for giving me the support to shatter my window. These days I rarely have moments behind it. It happens here and there, and it again ignites a new sense of gratitude when I find my balance.
If you’re behind your window, I can step alongside you and point towards the direction of hope. I want you to know that you’re not alone even though I know behind there it often feels so isolating. I can only share what has helped me break my window. By sharing, it heals the pieces of me that were wounded as I pounded that window with my fists and eventually found the hammer to finish the job. By telling my story all the parts that were bruised as I stepped through the shattered glass are exposed.
For a while I wanted to be all perfectly put together because I figured then the world would never know about my secret window. Now I want to show the pieces of broken glass, so others know that it’s possible to step through. It’s not an easy journey and it has certainly left its mark, but that broken glass is now an incredible reminder of the power of the human spirit.
[this post is a chapter from my book, Uncovering Bliss]