As I approach the day of my surgery, I have been thinking of all of my symptoms and wondering which may finally be a thing of the past and which ones will hang on due to the pesky dehiscence on the other side of my head. Here is my little list:
SCDS Symptoms I Simply Won’t Miss
- Walking with a cane
- The way people look at me, down at my cane, back and me and then immediately away, when I walk with a cane.
- Hearing my heart beat loudly when I walk up the stairs
- Watching the world bounce to the beat of my heart when I walk up the stairs
- Hearing my neck muscles move
- Hearing my eyes move in their sockets
- Hearing a “swoosh, swoosh” (pulsatile tinnitus) in my left ear first thing every morning and last thing every night
- Hearing fluids moving in my head (what ARE those sounds anyway?!)
- Being afraid to walk into a store
- Feeling my flight or fight instincts kick in when I walk into the store…. like a field mouse in an open field of vultures…. my body simply knows it is not a safe environment
- Feeling like I’m about to fall — all the time
- Being too exhausted at the end of the night to read a book well to my daughter during book time
- Watching my vision bounce when I eat a potato chip
- The awful realization that my brain isn’t able to work the way it did before. Now parts of my brain that should be working on reasoning and thinking have been reassigned to the impossible task of connecting the mixed signals of my visual and vestibular systems
- Waking up in the middle of the night and remembering that soon someone will cut through my skull in order to fix me
- Having to hold a shopping cart for balance at a store
- Declining any invitation to go out because I am afraid I’ll get too dizzy
- Migraines…….every day.
And because I fully believe that there are often good things hidden in the bad, here are a few unexpected blessings that my SCDS has brought me:
- I’ve experienced an outpouring of love and support from my community of friends, family and even slight acquaintences through words and actions
- I’ve gained an understanding and compassion for those with disabilities. I’ve learned that there are many, many people who are better than me at showing this compassion (like the hair stylist who cut my hair in a fashion that will hide my head being shaved —- and she chatted comfortably about brain surgery while doing so).
- I’ve realized that even when I’ve read an awful-sounding symptom and said to myself “I will just die if that happens to me”…. when it did happen, I did not die.
- I’ve seen that my dear 11-year-old son’s first reaction to me having a cane, was not to freak out, but rather to pick it up and begin dancing a Fred Astaire style dance.
- I’ve held hands with my 9-year-old daughter through doctors visits and tests, and together we have found that quite often the “scariest” things are the things we don’t know much about or understand.
- And, finally, I have found that by losing my balance physically, I have gained balance in the way I view the world around me.