Wednesday, January 29, 2014

Happy Nerversary, Cookie.

The other night I was lying on the living room couch with Chad, in the dark, in the silence. And in all of the beauty of that moment, all I could think about were the nights and early, early mornings I would come downstairs because I was unable to sleep through all the pain of Trigeminal Neuralgia. I would lie on the couch, trying to find a place of comfort deep, deep inside since there was no comfort to be found in any layer near the surface of my brain or body. The darkness was never good, or helpful. In the dark I would get scared and sad about the future and living in such pain. But then the dawn would eventually come, when the thought of the sun would wake the birds, and they would stumble down their tree stairs for breakfast. There's a bush outside our living room window that was often the first breakfast choice for lots of sparrows and chickadees, apparently. Those birds, chirping, tweeting, hopping, would inexplicably give me the strength to get through the day. And I will always love our couch, and that window to my mornings in our living room, for that reason.

Tomorrow, January 30, is the 5th anniversary of my successful Microvascular Decompression surgery. It's a strange thing to be on the other side of such an awful disorder. I wasn't faced with my mortality, but I was faced with living a very difficult, painful life that was not what I had imagined. It was excruciating to consider living that life, literally. And I think that's why the birds at dawn really did help--they reminded me that I just needed to fix it. I just needed to refuse to accept that fate. So I refused. And besides my daughter Grace, that is the biggest accomplishment of my life.

On the other side of it, now, what I remember are mostly the amazing things, not the awful things. The small, seemingly insignificant gestures from people that made such a huge difference in my life are the things that I find myself thinking about. A lot.

What I really want to do is turn this into a long, long, detailed thank-you note that could never ever do justice to my true feelings of gratitude. But then it wouldn't get posted tonight. So here are some highlights:

During my worst years with TN, I was lucky enough to work at an amazing place with amazing friends. I couldn't have asked for a more understanding community. My boss quietly listened, asked the right questions, and created a hammock of support and understanding. My desk-mate spent countless hours listening, handing me my heating pad named Larry, and the night before my MVD she braided my hair. My other desk-mate, without any conversation, understood how much pain walking across a windy bridge to the train station would bring. On countless evenings he would ask me when I was leaving, to simply walk in front of me as my human windshield.

My family spent years struggling with me, through diagnosis and research and so, so much fear. My sister talked me through some of the scariest, most painful moments I can remember. My father was my guide and navigator through not only the medical system but also gently pushed me to realize that I had to get over the "why me" aspect of my reality.  My parents were my champions the night my surgery was almost cancelled--both of them truly fought the system for me, and probably did more for me that night than I am even aware of. My mother then came home with me and did all the things she had done 30 years before--fed me, watched as I slept, made me drink, even bathed me. Then, I saw those actions as a daughter. Now, I see them as a mother, myself, and I understand. I understand that for her those motherly duties were as non-negotiable as my surgery was to me.

There were countless others who made huge efforts to help and show how much they cared. One friend in particular not only stocked my freezer with homemade soup, but, while Chad and I were in the hospital, she met a plumber at my house to fix a leaky radiator, with her newborn in tow. That is a friend.

I remember Chad buying me Twinkies because they would fatten me up and were soft enough to eat, and I remember how they didn't taste nearly as good as they did when I was 12. He made me laugh, constantly, even about the TN. But those are trivial things. The true difference he made was in always reassuring me that he still loved me when I felt broken and felt like I let him down because I couldn't be the wife and partner I wanted to be and had dreamed of being. I thought, so many times, that I had become a true ball and chain with none of the good and all of the bad. But he always proved that was never the case. In the first years of our marriage, Chad went through enough sickness, health, better, worse, good times and bad for many, many marriages. And I cherish him for every second of it. Chad was the one who woke me up from surgery, who whispered in my ear, "Baby, you were right--they fixed it--they found the veins. You were right!" I love that it is his voice that I hear when I remember that moment, because he suffered right along with me and he knew, he knew so deeply what those words meant.

6 weeks after my MVD, I went for a final visit to my surgeon. The last words he said to me that day were, "I hope I never see you again."

Me, either.

Happy, happy, happy 5th Nerversary.

October, 2012. (c) Tracy Emanuel 

(For those who want more info about TN, the more detailed story can be found here. And for a story about a friendship forged through TN, go here. )