TN Awareness, Cookie

As most people in my life are aware, for 6 years I battled a demon called Trigeminal Neuralgia. TN is a disorder of the 5^th cranial nerve, where the nerve “fires,” when triggered by things like a light touch, wind, chewing, or speaking, causing extreme, lightening-like pain. In my case it went from the top of my head down the left side of my face. Trigeminal Neuralgia is a relatively rare disease; the current statistics are 1 in 15,000 or 20,000 people world-wide, and it often affect women more than men. Trigeminal Neuralgia is the most painful disorder known to medicine.

I was diagnosed with TN at age 25, which was also rare; most people with TN are age 50+. After years of drugs and research and fighting and heartbreak, at close to 31 years old I finally had a neurosurgery called Microvascular Decompression. The MVD relieved my TN and today I live free of TN pain. I can’t tell you that will always be the case, but for now, I am thankful for every single day I do not have pain.

October 7^th is Trigeminal Neuralgia Awareness day. I’m late, I know, but I have been thinking about the things I learned from dealing with TN—lessons and behaviors that will never leave me and have shaped who I am today. So. Here goes!

 “Lessons” learned from living with Trigeminal Neuralgia:

1.    You must be your own advocate.

During my 6 years with TN, I wished over and over that Dr. Gregory House was real and not just a TV character and that he would fix me. Yeah, he's not real. I had to find a Doctor that listened and that treated me with respect and that understood (as much as possible) what I was dealing with and the kind of solutions I was looking for. And that was a constant challenge. Bottom line: the medical system does not just work for you, you must work it. Doctors have fragile egos, did not want to hear what I thought, and did not want to hear what I knew about TN. However, when you have TN (or, frankly, any other chronic issue), there is no bigger job than advocating for yourself. Write everything down. List your meds. List your appointments and who you saw. Document what they said. Part of this is because your drugs make you forget, part of this is because no one can remember a medical history that will be as long as yours, and the biggest part of this is because, most likely, you will be driving this ship and you need to chart the course. 

2.    You can do this, as much as it feels like you can’t.

With TN, I had to say those words every day, every hour, sometimes every minute. When a hair brushing across your face can send you to your knees with lightening pain, saying “I can do this” was the only way to get out of the door, to get in the shower, to put on a shirt.  It’s the only way I could continue to fight. Saying “I can do this” was the equivalent of putting up the steel wall to the pain and remembering that just as it would strike, it would also end. Until the next time.

3.    You are fine.

This was one of my worst days. But you can't tell.

This was a lie a lot of the time. But I had to fake it to make it. Especially since TN is an invisible disease. Like so many health issues people face these days, no one can see TN pain. The comment that made me want to laugh and cry was: “Oh, well you don’t look sick!” (I still have no idea what that means.) But when I was trying to have some semblance of a life, a relationship, a job, a home, I had to have the public face, the “I am fine” face. It’s the face I’d try to have even though my left eye would be tearing up from pain and the person talking to me would stop and ask if I was OK. “I’m fine, keep talking!”
It’s what I’d say to myself when I’d be stuck on a sidewalk on a bridge in the wind. “You’re fine, you’re fine, just get to the other side.”
It’s what I’d say to myself when we were out to dinner with friends and I had to stop mid-sentence to take a deep breath and get past an attack. I’m fine. I’m fine because if I don’t say that I’m fine, than I lose and TN wins. And that’s a big fight to lose. Being fine meant I had a future. I needed to have a future.

4.     You need your people.

The problem with “I am fine” is that I started to think that I could handle everything on my own. TN forces you to live inside your own thoughts a lot of the time, working out your fears. I still have this problem where I take on so much without asking for help because I trained myself not to ask for help. But “I am fine” should not equal “I am alone”. Because it doesn’t, and I learned that over the years with TN. I had friends who made the hardest days easier just by the smallest gestures: a hand on the back during an attack. A cup of tea. An umbrella to hide behind. An offer to pick up my lunch because they knew that going outside in the wind wasn’t possible.  It constantly surprised me to see people help and love in their own way; not because I didn’t expect them to, but because I never asked for it. Many of the friends I worked with during my TN years are no longer people I see every day. But they have a special place in my soul, forever.

My funny friend Allie and my stapled head.

My husband went through every moment of TN hell with me and I know it hurt him almost as much as it hurt me. My sister had more crying phone calls than anyone should listen to, and talked me off a ledge more times that I can remember. My family was afraid for me. But from my mother bathing me after my neurosurgery to my father calling to firmly speak to my doctors; each of them played a role that was uniquely needed and uniquely suited to them.  I am grateful beyond words, even today.

5.    Trust your gut.

This lesson came to me again and again throughout my TN journey. Just as I knew from my first TN attacks that this was NOT normal, there were certain things about my condition that I knew in my gut, my soul, my bones. I could trace my TN’s behavior to blood vessels, even though there was nothing showing on the MRIs. I just knew. I knew when I had to switch doctors because they were giving up on me. When I read about several different surgeries, I knew an MVD would help me. When I met my surgeon I knew he was going to help. I can’t tell you why I knew any of this. I just knew in my gut. Part of this trust in myself was simply self-preservation, like saying “I can do this.” I had to trust myself that I knew better than anyone else what was wrong with me and what would fix me.

Having TN is awful. It just sucks in so many ways (don’t worry, I won’t list them). But the AMAZING news, and the most important lesson of all, is that we are all gamblers*, and we all get more than one hand of cards in life. I had a really shitty hand for a while. Then I got a better one. But no matter what your hand looks like, it shapes you, teaches you, helps form the person you are so you can see that hand and decide what to do with it. See you at the table.

*My sincere apologies to Kenny Rogers

Click here to read about my whole TN/ MVD journey.
And click here to read about a friendship that grew from TN. 

Muma's Cookies

I've been thinking of my Grandmother today, Margaret France Crone, or Muma, as we called her. Muma would have been 101 years old on February 25th. She's still with me, I know, but I've been missing her a lot these days.

Colm has her cheeks. So do I.

Summer, 1970

I wrote this poem in 2000, when she was first diagnosed and being treated for esophageal cancer, which claimed her life a few years later. I love you, Muma. Happy Birthday.

Muma

You told me it was the depression that brought you together;

You took the bus to work each day,

stood on the corner in your stockings and heels,

auburn hair coiffed, hands gloved. He saw you

as he pumped gas; looked for you every morning,

ignoring customers to watch you

disappear up the stairs, the winged doors

wrap around you and take you away.

You told me he was afraid

the morning would come when you didn’t.

I can just hear him fumbling, bumbling:

“My name is Bernie…It is a pleasure.”

I can just feel his hand shaking inside yours, pressing

warmly with his thumb, not wanting to let go.

“That is how I became your grandma,” you said.

You told me this

seventy years later, as you lie

with seventy years worth of medical discoveries

pumping through your veins,

so much data and collective evidence, your

cells might as well be graphs; numbers

instead of blood swim through your capillary-charts.

You told me all of this in private,

but as he walked into the room, eyes so big,

so red, more scared than a lost child’s,

I knew, he too, was thinking about that time:

watching you climb the tall bus stairs,

your heel slipping out of your dark shoe.

Standing in that room, your hand pressed

in both of his, he felt the same terror

choking his heart, as if he were watching

those wing-doors swathe around you,

and take you away.

Giving Pickle Cookies

I've been riding horses since I was seven years old. Apparently I started asking for lessons when I was five but my parents finally gave in when I never.stopped.asking.them. Plus, they probably realized I looked like the awkward goose in a gaggle of first-grade ballet tutus and realized they were dancing me down the wrong path.

Eventually I had a few years of almost-national, definitely-regional success with some pretty amazing horses and extremely talented trainers, faking my way through the uber-elite horse world by cleaning stalls and grooming for myself every weekend. And then I went to college and that world was pretty much behind me, at least on a regular basis. Later on I still stood at the show ring, but usually had a rag in my back pocket and a martingale hanging on my shoulder. Sometimes I made it into the ring, schooling a horse in a warm-up class, or filling the adult eq classes. Sometimes I qualified for finals with those fill-ins. And sometimes that was enough.

All of this to say, the barn is where life gets re-set for me. This is true for most horse people; I'm definitely not saying anything new. But the sounds of the horses quietly eating hay, the background noise of the sparrows and the swallows, the smell of the tack room--those things reach inside and straighten out my soul a little, put life-sized annoyances back into perspective.

So then why did I decide to bring my five year old with me to the barn? Why did I sign her up for lessons? Why would I take away my sanctuary--let my chaos meet my peace? Because she was facing her own bit of chaos in her own five year old way. Kindergarten threw her for a loop. And going to the barn is always my answer.

She was quiet about it at first, like she is about everything. She was tentative and shy and barely spoke to Megan, her amazingly enthusiastic and empathetic instructor. But afterwards, she came alive when she talked about Pickle the pony, and she asked to go back. And so we did, several times. And yesterday, I sat in the viewing area, wrapped in the wool that I've spent years throwing over the backs of horses at shows, feeling like a barn mom. How did I get to be a barn mom? I know this literally happened a few weeks ago but when the hell did this happen??

And then. And THEN. Megan and Grace asked Pickle to trot and Grace just started posting--like really posting--up and down with each pony step, using her tiny bird legs wrapped in her almost-baggy baby britches, her little heels in her tiny paddock boots sinking down. And I started to cry. And laugh. And I covered my mouth so I didn't make one single sound. But she got it--something clicked and she got it. And I was so proud.

That's what is so awesome about riding. You try and you try to communicate with this giant animal. You squeeze a little harder, squeeze a little less, raise your right hand, change your track, keep your eyes closed, whatever. And then, it clicks. You get it; the horse gets it; it's accomplishment, but accomplishment with a good friend. And Grace had her first moment yesterday. And I was the stupid barn mom, crying with pride, laughing at myself at the same time.

I didn't know this was possible, but yesterday I loved the barn even more.

Unexpected, yes. But not surprising. For now, I'll be a barn mom on Wednesdays and a rider the rest of the week. And hey, I might wind up standing at a show ring with a rag in my back pocket, holding Grace's martingale. Or maybe she'll be holding mine. Either way it will be enough.

Are eight cookies enough?

It's been another year. And when I woke up this morning I wondered if I should recognize this eighth year, or if I should just go about my day like it's any other day. And I tried that. I did all the things parents do before 7 AM, shower and tea and lunchboxes and breakfasts and wiping noses and sidestepping and distracting and potty and ponytails and singing and finding shoes and getting more breakfast and dancing and coats and hats and mittens and keys and kisses and waving and, finally, coffee.

But it's not just any other day. I kept thinking about it. This day literally would not have happened if January 30, 2009 hadn't happened. I don't know where I would be if my MVD hadn't been successful. I don't know who I would be. I certainly wouldn't be doing all of that before 7 AM. Not even close. I wouldn't have my babies. I wouldn't be wiping my own nose, much less theirs. Would I even be getting up to go to work? Would I be sleeping in a bed? Would Chad be tired of taking care of me? Would I be able to shower? Would I still be pretending that my tears were simply watery eyes in the wind? Where would my pain have progressed to, 8 years later? I would not be dancing. I would not be singing. I know I would have forged ahead. I just don't know how.

I don't ask those questions very often, or even at all, anymore. I sometimes wonder if there are any new studies on post-MVD patients, on how long their pain-free lives last, but then I think I probably wouldn't read them. I can't live that way. If there is anything I learned 8 years ago today, it is that every day is a gift. And yes, each Nerversary is worth noting and celebrating. And singing about.

Here is Grace, with "Sing"

Happy 8th Nerversary.