As most people in my life are aware, for 6 years I battled a
demon called Trigeminal Neuralgia. TN is a disorder of the 5th
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 7th 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.
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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.
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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.