A Narrowing Window of Time

3 months ago I shuffled into a hospital with bouncing vision, the aid of a cane, and a brain that was consistently forgetting things. With a shaky hand I signed my name off to the surgical risks of brain damage, paralysis and even death. Crazy enough I will do it once more. Despite all that, I now feel more fortunate than I ever was before. Because before being diagnosed with SCDS I took so many basic and simple things for granted. Today, with one surgery behind me, and another in my future, I am appreciating the narrow window of time that I am in.

There are few things in life that can make your attitude hit the “reset button” but after living some if my life in the way that an isolated, disabled person lives, I feel find that my outlook on life has certainly been reset. In the months leading up to my surgery, I was amazed how much just walking made me dizzy. And after surgery, I have been continually amazed that I could walk without being dizzy.  In my last two months when I felt overwhelmed by one of the challenges that parenting or work threw at me, I took a walk and mentally boiled my worries down to a simple thought: I am walking without a cane or dizziness, so therefore life can’t be that bad.

But as those of us with bilateral SCDS know, this is a condition without a guide book to refer to, and each one of us who suffers from it will find out how their condition evolves in due time.  It is not documented anywhere how many cases there are in the world. There is no predicable path the deterioration of one’s balance will take. And there is no rhyme or reason to the symptoms I will get, when they will come, and how bad they will be. This is a newly discovered disease, and we SCDS’ers are like newly minted actors doing improv as we deal with this bizarre condition.

And so for this moment in time when I can walk, I am appreciate just walking. Although I still don’t have all the hearing back from my surgical ear, I adore the sounds of my children singing and playing.  Even though meeting up with friends for coffee or doing my freelance work in trendy Seattle coffee shops makes me tired, I go out because I still can function in those places. The Tullio’s effect that I had before my last surgery (dizziness caused by sound) has not yet set in.

Yet my wonderful window of non-symptoms is already narrowing. My right un-operated inner ear is home to a 6 millimeter hole in my superior canal, plus another small hole in posterior canal. My symptoms on that side were somehow masked by the symptoms of the left side, which is common. My walking, chatting, going-out-of-the-house days are numbered. Unlike the first time, the symptoms are coming back slowly and differently. In this round when I laugh, cough or raise my voice my vision trembles as if I were witnessing an earthquake, and more and more I find it hard to focus on a computer screen. Both symptoms which I didn’t have before.

Will it get worse?  No idea.  I only know that I am determined to live my life as positively as I can. And take as many appreciative walks as I can before I take the big walk back into surgery.


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