Sunday, August 8, 2010

One Brave Cookie

There are so many things I can use to describe bravery.

I can think of a dozen off the top of my head: a 5 year old on her first day of kindergarten, a soldier leaving on the bus for boot camp, a woman giving birth, a victim facing an attacker or abuser; bravery takes on many forms every day. And if you asked these people, I think they would describe bravery as digging as deep within yourself as you can, and standing up to whatever it is that frightens you or threatens you. And those same people would tell you that bravery comes with a side of fear, a cup of unknown, and a whole plate of gratitude.

In the past few years, people have called me brave. Quite a few people, in fact. And every time I would shake my head, mainly because I didn’t feel brave most of the time, and when I did, it was usually because my loved ones had just given me yet another pep talk.

This is why.

Six years ago I was a live-in nanny. One night, after the girls were all tucked in and the only sounds were people walking in the apartment above me, I was washing my face before I, too, climbed into bed. As I was rubbing my face, I felt this jolt on the left side of my forehead, a sensation I still, to this moment, have a hard time describing.

That first jolt came with a hesitant mix of fear, surprise, and an odd feeling of fascination. I touched my face again, poked and prodded it, and nothing happened. So I splashed water on my face, and it hit me again: a bolt of lightening through my face, hot and electric, hard enough that I had to grip the sides of the sink to keep standing. That time, the fascination was gone and all I felt was fear.

I called my dad that night, to discuss that “jolt” with him. My father is a pediatric anesthesiologist and the running joke in the family is that Dad would tell you to “take Tylenol” if you told him you broke both your legs. But that night he didn’t tell me to take Tylenol. In fact, he said “huh” a lot. He told me to call him in the morning. I figured, like most things, I would be completely fine the next day. But I wasn’t.

The next day, in fact, I remember walking to my then-boyfriend’s apartment in Harvard Square (this amazing man has since become my husband). It was windy, and the electric pain came back so hard and fast I stopped dead in my tracks on the sidewalk, and turned my back to the wind—turned away from the wind and away from the pain. I must have looked ridiculous, spinning on the sidewalk. And then I froze. I was afraid to move. I remember thinking that I was going to be stuck on that sidewalk in Harvard Square, forever. But I turned, slowly, and made my way to my boyfriend’s, where I climbed into bed. I was in that bed for days. I was in too much pain to do anything. Every time I touched my face it felt like I was holding a live wire to the top of my head, as the current ran down, through my eye, to my front tooth.

Meanwhile, my father was doing some research. He called the head of Neurology at one of the best hospitals in Boston, also a friend. My father told this man that he thought I had Trigeminal Neuralgia.

Trigeminal Neuralgia (TN) is described as “a nerve disorder of unknown origin that causes sudden, shock-like facial pains, typically near the nose, lips, eyes, or ears. It is said to be the most excruciatingly painful human condition in the world.” Trigeminal Neuralgia is considered a “rare” disease by the NIH: “for every 100,000 people, an average of 4.3 people will have TN with a slightly higher incidence for women (5.9/100,000) compared with men (3.4/100,000).” What still remains a mystery about Trigeminal Neuralgia is the cause.

I knew none of this at the time, and my father’s information was limited as well, which is why he called the Neurologist he knew. The Neurologist asked how old I was, and my Dad told him I was 25. The Neurologist’s response was: "That’s impossible".

This man’s reply set the tone for the fight I was about to step into. My father, too, was incredulous at his response. “As a physician,” he told me, “you don’t say the word impossible.”

Most people develop Trigeminal Neuralgia after the age of 50. Most people. But I soon learned that thousands people who are under the age of 55 have Trigeminal Neuralgia or facial nerve pain. Teens can develop it. Babies are born with Trigeminal Neuralgia. Try looking at one of those tiny babies screaming in pain and saying that it’s impossible they have a disorder that causes the worst pain known to humankind. Try telling me that, and see what happens.

The short story is this: I spent the next 5 years in excruciating pain with cyclical periods of remission. The bad days were truly awful, and therefore the good days were truly a blessing. On a bad day I would have over 200 nerve “attacks”. On a good day, I was a normal girl with an intense job, a fiancĂ©e, a wedding to plan, and Thanksgiving dinner to cook. But on a good or bad day, I quickly learned I had to work to help myself. I saw 6 neurologists and read countless articles, studies, and dissertations. I read two books. I elected to have sinus surgery because my clogged sinuses made the pain even worse. I have horrifying stories about how doctors treated me. And I have magical stories about how doctors treated me. Sometimes they are stories about the same doctor.

I saw three Neurosurgeons, one who said he wouldn’t touch me, one who agreed happily, and one who tried to cancel my surgery the night before it was scheduled. I took a path that was full of detours, holes, rocks, cliffs, sunshine, and green lights. I took this path not because I wanted to, but because I had to, because there was no one who would help me, truly help me, except myself and my loved ones who would help point me in the right direction.

This isn’t to say that I knew all of this. I had no idea what would happen to me. I had no idea where my life would go. I was scared to death. Sitting in pain, drugged beyond rational thought, unable to kiss my husband, unable to eat anything I had to chew, unable to shower or dress without tears, unable to sleep without narcotics, all of that was not in my life plan. I cherished my relationship, I dreamed of children, I loved my job and was proud of my work. I had so much to give to the world. It wasn’t time, yet, to give it up.

I just kept all of those things in my head. I wanted my life back. And as my mother said, “It’s a good thing you’re so damn stubborn.” She’s right. I wouldn’t take no for an answer. I wasn’t going to give up to this monster. There were times that I thought I would have to, times where my husband or my sister had to hold me as I sobbed, talk me down through my anger and fear. The fact that I owe certain people my life will never leave me, because despite what they say I couldn’t have done this without them. They led me through the moments of darkness so I could be fueled to fight some more.

The turning point came about four and a half years after that first jolt of pain, when I read two books that I ordered from the Trigeminal Neuralgia Association, a nonprofit and an online network where I was able to connect with other patients and learn a lot of information, which, in equal amounts empowered me and scared the living crap out of me. I read about all the surgical options and found the one I knew, I just KNEW, was my answer—a Microvascular Decompression. I also knew, because of my research, that a Microvascular Decompression (MVD) is most effective for Typical Trigeminal Neuralgia (which I had) and is most effective if done within the first five years of the onset of pain (a milestone I had just reached). I had developed allergies to the most effective TN drugs—3 of them—and I saw this surgery as the only option I had left.

Microvascular Decompression is a neurosurgery that focuses on the root of the Trigeminal Nerve, located behind the ear. The theory behind an MVD is that a blood vessel is pressing or looped around the nerve, wearing away the protective sheath and rubbing against the nerve fibers. Moving the blood vessel away from the nerve and putting a protective layer between the two—often Teflon—removes the compression, and, more often that not, the pain itself. Often a thin-slice MRI will show any compressions, but in my case, after 3 different MRIs, no compression was visible. I knew I was just about to have my skull drilled into, and my brain moved over with, essentially, a little brain shoehorn, all without proof that a blood vessel was to blame. But I had to do this—from my perspective, it was a necessary step.

It was a Thursday evening in late January, 2009. I had an amazing day at work—so much love and support from my coworkers, including one friend who braided my hair, leaving out the part that would be shaved off. I came home determined, with plans for a huge dinner and an evening in the arms of my husband. I got a phone call almost immediately after I returned home, from my surgeon. He mentioned that there was a slight problem, and that the Chief of Neurosurgery wanted to meet with me. Next Tuesday.

It was almost a cartoon moment—I shook my head for a second and said “but my surgery is tomorrow morning.” Yes, he said, that would be canceled.

And I just said “No”, like that could have made a difference. “No,” I said, “I don’t understand.” And then I got mad.

I told him everything I had done to prepare; I told him I took two weeks off work. I told him my mother had flown in from London. I, ridiculously, told him my hair was already braided!

I was shaking. Everywhere, shaking. He told me he would look into another option, and we hung up. I pressed the button on my phone and just started to pace, talking to myself like a crazy person in the street, never having felt so helpless. I called in reinforcements.

My father answered the phone, groggy, as it was about 1 AM in Italy, where he was working. He listened and asked for the surgeon’s phone number. I gave it to him and hung up, wringing my hands, still pacing. When my husband came home, I didn’t even know what to say; I don’t think I was coherent, but I did get most of the story out between my tears. And as I did, I felt the last threads of hope drain from my body. I became so angry and so hopeless. I said, “This is it, I’m done. I have no more options. I’m done.”

At that moment, I had nothing left, no more fight. I was exhausted from pain. I was tired of fighting, tired of swimming upstream, tired of being so numb. I was tired of being drugged to the point of not being able to spell 5 letter words; I was tired of living a shred of the life I knew I wanted and used to have. I was done.

However, the moments tick on. My husband, my mother, and my sisters just kept telling me, “we can do this, we will get through this.” After another hour of weaving a phone web between the Neurosurgeons, my father, myself, and a nurse, the agreement was made that I would meet with the Chief of Neurosurgery at 8am and if he felt comfortable, I would then take the afternoon surgical slot, at 2pm.

I’m not completely aware of what was said on those phone calls, but I do know that my father was able to play some medical and political cards. As grateful for that as I am, it still makes me angry that without him, I wouldn’t have had that meeting, or that surgery.

The next morning, my husband and I drove to the hospital in an odd fog. At the meeting, I was seething, yes, but I was also petrified. This man sitting before me had just tried to toss me aside, and he could do so again. He had the power to change my life, and I was acutely aware of that. I was like a Sunday school student, my hands folded in my lap. I answered his questions, I nodded politely; I even smiled. He told me he had to be sure I did not have MS. I said that the 6 specialized physicians I had seen all agreed I did not. I had Trigeminal Neuralgia. And at the end of the meeting, he told me that yes, he would do the surgery, but he also very clearly said that he did not think he was going to find a blood vessel pressing on the nerve, and that we needed to have a plan B. We decided a plan B would be for him to “rough up” the nerve to help prevent the errant pain signals from being transmitted, and that there would be some numbness associated with this plan. I said yes, knowing, knowing, knowing with everything in me that he would find a blood vessel.

I will never forget slowly waking up from surgery, slowly becoming aware of sounds and voices, being aware of how ill I felt, being aware of how people were talking to me and I was talking back. And then the nurse said to me, “Someone is here to see you…” And I opened my eyes to see my husband’s sweet face, smiling. I saw him and I closed my eyes again. Seeing him was enough.

Then he whispered to me, “Baby, you were right; they fixed it! They found the veins; you were right!” And I remember nodding, and smiling, and squeezing his hand, not having any words. There just were no words.

After that there was a stream of people, two at a time, coming in. I remember their voices; I remember their words, I remember their kisses. I remember feeling pain and discomfort and nauseous and semi-conscious, but never, ever, had I felt as whole.
And never, ever have I been as grateful as I was for that moment, for those people, and for the fight we fought. For the fight we fought and the fight we won.

What I did I would not describe as brave. What I did was a necessity. From my perspective, I did not have an option. The bravery came from the people who supported me, who stood by me, who held my hand and understood, who lifted me when I needed it, and who helped give me the gift of my life back. Those people are brave.

And it is because of those people that today, when the wind hits my face, I do not turn away. I turn toward it, I close my eyes, and I say thank you. Thank you.



Footnotes:

About Neuropathic Facial Pain and TN, The Facial Pain Association, Inc.
Mark Obermann, “Treatment Options in Trigeminal Neuralgia, ” SAGE Journals Online, 29 Jan. 2010 < http://tan.sagepub.com/content/3/2/107.abstract>

19 comments:

  1. Kate, what an amazing story and so incredibly written. Working with you professionally throughout this time period, I never had even an inkling of what you were going through. This is truly a testament to the kind of person you are. If not brave, well then let's say tenacious, dedicated, driven and inspiring. I am so happy the surgery was successful! You already had my respect and admiration, and this is just another reason why.

    Kathleen

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  2. Kate!
    You are not only one brave cookie.. You are one tough cookie... & one AMAZING cookie!

    xo
    Maggie

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  3. No other word but "WOW," Kate.

    Always my respect and support...

    -- Alex

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  4. Thanks to all of you for such kind words! I really am blessed to have people like you in my life.

    My biggest goal right now is to raise as much awareness as possible so people know what TN is, but also so that patients don't feel so alone. It's a very scary and isolating disorder. If you know anyone who could benefit from reading this, please pass it on!

    xoxo

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  5. You are a very cool (& articulate) cookie - had no idea you suffered so deeply & long - bravery is not giving up! You took on the fight & won. Thanks for sharing as it enlightens mysterious stuff yet applies to many peoples' 'silent' conditions.
    Ride with the wind, cowgirl!

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  6. Wow--this is an amazing story, and I had no idea you were facing this challenge. Thanks for writing and sharing! And what a hard-won happy ending!

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  7. I've always thought i've had TN, and after changing neurologists i have found one that agrees with me. The only thing is, I've had 2 MRI's and nothing has shown up.
    Your story i found by chance, and it made me cry. Medication isn't working, so i'm thinking of surgery. How is your life now after the operation? Absolutely pain free?

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  8. Hi there. Yes, my life is completely TN-pain free. Obviously it's taken time for my head/scar to not be sensitive, and it's taken time to get used to NOT having attacks. The shower scared me for a long time afterwards. :) But I am not exaggerating that this was the best decision I've ever made. Please email me if you'd like to talk further. I'd love to help you in any way I can. (key-ee-cee@hotmail.com)

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  9. Kate! Kate. What is there to say? No one could ever understand what you suffered. Bravery is sometimes about making a choice between two options, and sometimes it is of the "I-simply-have-no-choice but to face this" variety. Just doing the only thing you CAN do. And THAT is the bravest bravery, putting one foot in front of the other every day.

    I will never forget the day you came out to Daniel's Baptism - a windy, cold day in the midst of one of your worst TN stretches. You were smiling, swallowing back the pain and the tears. And you were there for us - brave in your generosity. A gift to us.

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  10. Kate, so glad you shared this. I am proud to know you, if it's fair to say I know you at this point. You are beautiful. Thanking God that your suffering has a happy ending.

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  11. Carrington, thank you. I think we know each other--but I can't wait to see how adulthood has made you more beautiful too.

    Kate, I hope you know that you were (are are) one of my very few rocks over the last few years. There were days I could not have gotten through without you. You made soup, you called all the time, you took care of my home while we were in the hospital. There's nothing that can express my gratitude except by saying that I love you and can't thank you enough.

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  12. I love your tenacity to not give up the fight even in your darkest hour...even when you didn't want to fight anymore. You made that phone call to your dad. You could have just curled up in a ball and cried yourself to sleep, but you kept up the fight. I'm so happy you did. I'm so happy it worked out the way is was supposed to.

    I have been pain free for almost a year, thanks to a combo of drugs that finally worked. I am even decreasing the dosage and so far so good.

    Thank you for sharing your triumph and here's to a great journey ahead of you!

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  13. Wow, What an amazing story so well told. I had TN for almost 3 years and finally had MVD surgery done last year. AS I was reading your story I felt as If I was reading mine.
    Linda

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    1. I was just diagnosed with tn I am very concened about the side effects of the med. and very afreid of the surgery. Do you have any advice for me.
      thanks
      tanya

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    2. Tanya, please send your email and I'd love to help!

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  14. I just happened upon your blog after doing TN-related research on behalf of my husband. My name is Jane, and I live in North Carolina. I am so happy to see a success story after witnessing the person I love the most battle this disorder. I know your surgery was years ago, but I was wondering how you are feeling today (at the end of 2014). Has the MVD still prevented the pain from recurring? My husband, who is only 27, was recently diagnosed with TN, and his medication is not working. We are looking into other options, but the idea of him having brain surgery seriously scares me. I would love to talk with you in more detail if you are willing. My email is goodsonjane@gmail.com

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    1. Jane--I emailed you and would love to help! Sorry for the delay...

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  15. You know, it is yet another act of bravery to write this story. You are going to give so many people the hope they need.
    I'm so proud of you and every time I hear this chain of events I tear up because of how close you came to NOT being ok. And I just can't imagine you without your big smile. I love you, you stubborn Taurus, you. <3

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    1. There's so much I couldn't/wouldn't have done without you! Hugs, my birdie bird.

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