Giving Thanks With Thoughtful Giving: Trigeminal Neuralgia

Meet the Mitchells. 

 

Jesse and I met in kindergarten. (I'll spare you the elementary school stories because Jesse is tired of hearing them.) Alecia and I met in middle school where she proved her ability to play the flute, while I learned my lips were the wrong shape for the instrument. So, in high school, they were both drum majors while I used my big mouth to cheer for our teams.

Photo snapped in between Jesse's happy smiles, but Alecia provided hers!

I still remember their wedding day in our home church: Alecia's red hair vibrant beneath her white veil.  Jesse's trademark grin larger than normal. Me realizing we were all grown up.

Even now, when I think of them, I see Alecia's red hair and Jesse's smile; I feel their joy and kindness; and I hear music.

They're the friends I may not have hung out with all the time, but when I did, I wanted to be my best self.  Still do. They're the kind of friends that before doing something questionable, I wonder what they'd think about it.  Not because they're judgmental, but because they're nice, good people and I'd hate to disappoint them.

Because Jesse and Alecia believe in the good of mankind, they often find it.

Jesse said recently, "I've been married to Alecia for 16 years (17 in December) and have had 19 surgeries in that span. I apologized once to her for all of this being my fault, that I'm sure she never thought of her life turning out like this. She just told me, 'I said I married you for BETTER or WORSE. This is just the worse part. It WILL get better.'"

Jesse has Trigeminal Neuralgia. It's often called "the suicide disease" because it is so agonizing that many prefer suicide to living in fear of pain's power. A small breeze, a baby's touch, or even a smile can provoke an unfathomable jolt of pain.

Jesse explains it best:

"I try so hard to not be discouraged, to keep trusting that He will provide. He has thus far. Man, have we ever been a part of some wonderful blessings and miracles.... It's getting easier to let go and for me to quit trying to be "the one in charge," because this life isn't mine. It's HIS. I try to remain positive and try to help others who become sick and feel the way I have.

This disease, Trigeminal Neuralgia (where a blood vessel or artery wraps around a portion of the Trigeminal Nerve, rubbing away the protective sheath surrounding the nerve, causing intense pain each time the vessel pulses or moves),  takes away so much of who the person once was.

removing stitches

I've had two brain surgeries to treat this disease. I had the first, a MicroVascular Decompression, in September 2009. Eight months after that surgery took place, it failed. I had a second brain surgery in June 2010 to sever the sensory portion of the nerve. 

You almost live in a cocoon, a sort of hermit, scared to death that another 'attack' will hit at any time. These attacks have been described as feeling like being struck in the head by a lightning bolt, stabbed by an ice pick, struck in the head by a cattle prod, or biting onto a live, active electric wire. Through research, actual case studies and surgeries that have taken place recently among those like me who have had the sensory portion of the Trigeminal Nerve severed, we now know that those sensory fibers can in fact regenerate and reconnect to each other, causing that pain to resurface.

Unfortunately, exactly that has happened, and I'll have a third brain surgery to cut the entire Motor Cortex and Sensory portion of the nerve, resulting in what looks like a stroke-type of condition on my face; whereby, I will have no ability to smile, no ability to chew or to open my mouth, but I'll take that over pain like this any day."

badge of courage

Not only does Jesse have Trigeminal Neuralgia, but he's also been plagued with horrific sinus surgeries and complications--which resulted in MRSA, numerous PICC lines, and carrying an oxygen machine with him.

Jesse posing with one of his many PICC lines

Although he is an intelligent, hard worker, his illnesses resulted in the destruction of his career. Alecia's teacher's salary couldn't pay all the bills of a growing family, so Jesse was forced to apply for disability. That, too, was a struggle, but he was eventually granted it. As a result, his children have no health insurance because the stipend pushed them over the limit for Sooner Care. His COBRA runs out this month and the medicare won't kick in until this summer.

The Mitchells are good, hard-working citizens.  When do they get a break? I've spent so much time being angry for them.

Yet, they express gratitude, focus on blessings, and inspire many.

Through his pain--in spite of his health--Jesse encourages fellow TN sufferers and families, inspires friends and strangers, uses Facebook for the power of good, supports his children in school activities, cheers fanatically for sports teams, etc.

And one must ask why. Why has this happened? Are these illnesses connected? Does Jesse have bad genetic luck or is there something more?

When will things get better?

Here's where we come in.

The Mitchell family has an opportunity to go to the Mayo Cinic in Minnesota to meet with Jesse's dream doctor.  Someone gave them plane tickets.  They feel this is their chance to get it right. To learn why he's had so many complications.  To have an answer so he--and his family--can heal.

"Though my family and I have struggled mightily all along, I've never given up HOPE. If you give up hope--h-o-p-e--then you have nothing. It's my daily goal to give at least one person a semblance of HOPE, to let them know that there is an end to what they're going through."

When I asked permission to tell their story, Alecia said that she was honored that I would share their stories and loves that their story shows the goodness of others.

See? Good people.

Another drastic surgery must be intimidating. If the world has to continue without Jesse's smile, so be it. Because their goodness will still be here. We need more of that.

I often want to help people, but don't want to give money to an organization that will spend it on postage stamps or CEO salaries.  If you prefer a direct approach as well, please donate to Jesse and Alecia's family here. During this month of giving thanks, please consider thoughtful giving.

Most of all, please keep them in your thoughts and prayers the week of November 18.

Like End Trigeminal Neuralgia on Facebook. Find more information here.

And just for funsies...

 High school sweeties:

Twenty year reunion:

*all photos courtesy of Alecia Mitchell