The first shock struck in September 2002. I ignored it, thinking it was just some weird
thing my body was doing. I’ve had many
odd things happen concerning my body, but they were always passing fads and
that’s another story. This shock felt
like I was zapped in the face. It was
quick and it didn’t hurt, but I was startled.
The next one happened a week later and same as the first- quick and
painless. A week later, I got another
one. This cycle went on for about a
month and then the shocks came more frequently.
During the second month, I was getting them several times a week. Now, my face was not my face anymore. I was getting them several times a day and it
really freaking hurt! By January 2003, I
finally received a diagnosis after months of waiting on the doctors. I had trigeminal neuralgia.
The pain was so excruciating. It was like nothing I had even heard of and
apparently it was rare, especially in young people. I was 23, but I had just celebrated my
birthday in the midst of this new trial.
The entire right side of my face felt like it was burning while at the
same time I was enduring electric like shocks.
As one subsided another was triggered, so it seemed to never end. To top it off, there was also the sensation
of someone stabbing my brain with an ice pick.
The only relief from the pain was when I fell asleep.
At this point in my life, I was caring for an
infant, my third child. All I wanted to
do was give her kisses on her cheek and belly, but I couldn’t. I nursed her and then handed her off to my mom. I could barely brush my teeth or eat, and
talking just wasn’t in the cards for me, because all of this triggered more
pain. I managed to nurse her for a year,
but I had to forgo taking any medications.
Some might consider this crazy, but I had my reasons. I survived that first year, which in my
opinion was one of the worst in the 12 years of having to endure what others
have coined “the suicide disease.”
Crying is a way of consoling one’s soul, and I
couldn’t do that either. All facial
movement only triggered more pain. So I’ve
learned to be a statue while my own body is my worst enemy. There is a saying, “We are our own worst
enemies,” and trigeminal neuralgia, or TN for short, takes that saying to a whole
new level. To the outside world, I look
fine, but I die inside on most days. I
do my best to get along in life, but I lost many friends and family to this
disease. They didn’t know how to be a
part of my life, so they just left, usually believing that it was I that didn’t
care. So I’ve learned to cry inside
without movement, without feeling.
Most people talk about hope and how you must have it
to move on. I have hope, but I think it’s
different from the popular version. I
have hope I’ll get along in life. I have
dreams that I pursue and look forward too.
I have hope that my children will have better lives. But as of now, I don’t have hope that this
will go away. I’ve been told I didn’t
pray enough or hard enough. I’ve cried
out to God and do believe my prayers have been heard. I believe this with all my heart and
soul. But I have a strange suspicion
this is the thorn in my side, the one I’m supposed to move on with and be
successful in spite of.
What caused this?
No one knows. I’ve had several
MRI’s that returned results with nothing of concern. For the most part, I’ve lived a healthy
lifestyle. I could have been a bit more
active, but due to my condition, I am limited on what I can do and when I can
do it. My only guess is an abnormal
amount of stress, which peaked around the time of my first shock.
My life with trigeminal neuralgia has been one hell
of a roller-coaster ride, one I did not stand in line to ride. Because of the way in which my body and my
life have been ravaged, I call this disorder a demon. It’s a demon inside me, and I struggle every day. I fight to keep it from getting the best of
me. I fight to keep friendships and
family. I fight not looking back on all
that I’ve missed. I fight looking too
far forward, aware that a life with disability is not compatible with well laid
out plans. I am just now in the process
of embracing that life is now and I’d better enjoy it, even if enjoyment means
movie marathon after movie marathon with no popcorn.
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