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Letter from Tina



Have you ever stumbled across something so great and rewarding that you just can’t get enough of it?  I did, and my life hasn’t been the same.  And I am more than okay with that.

Living with chronic pain is challenging.  It can be a struggle.  A daily, grind it out, beg for it to be over kind of a struggle.  Sometimes I can’t do the things I used to do be able to do, or the things that made me, me.  But I also remember how much worse I felt and how destructive the pain was I experienced before I had microvascular decompression (MVD) surgery.  I still hurt daily but knowing how much worse the pain of Trigeminal Neuralgia can be, I “face” my pain and my life differently now.  A few months after my surgery, I decided one day I did not want TN to control me and push me back down into those dark depths of despair, isolation, and depression.

So I did what the millennials do these days.. I turned to the internet. One day while I was doing some research while volunteering for the Facial Pain Research Foundation (FPRF), I was looking into the ways people get TN- especially from head trauma. That search lead me down a path that covered our military and the way some of our wounded warriors have gotten TN from traumatic brain injuries.  That got me thinking. If we are losing some of our veterans to this terrible beast called PTSD.. and some of them also have ‘The Suicide Disease’, that’s unimaginably not fair! 

I immediately thought, how can I reach them??  How can I let them know about the FPRF and the research and work that is being done to stop this pain?  How can I get to them to remind them to Hold On Pain Ends?  If they don’t know about the Foundation, then they don’t know there is light at the end of the tunnel.. that scientists and researchers are actively working to stop the pain of TN and just maybe that will also help with some of their PTSD stressors.


One of those internet searches that day led me to an organization called Team Rubicon (TR), where their slogan is “Disasters are our business.  Veterans are our passion.” 

TR is a veteran based disaster response organization that also welcomes what they term ‘kick-ass civilians’.  I thought.. Well, I love doing physical labor, helping people, and have always wanted to delve deeper into volunteering so hey, that sounds like a great place for me. Besides, I promised myself at one point during this TN journey I’m on to try to step out of any comfort zones~ to really live, think and stay positive, appreciate and take full advantage of the moments of lesser pain, and do things.  So, I signed up that day on TR’s website, completed my prerequisites, became a Greyshirt, and in less than a month I was on the way to Texas to help the wonderful people in those communities who were affected by Hurricane Harvey.

That first deployment, that week, was amazing.  We were a group of about 70 strong staying in a church gymnasium in Friendswood, TX on cots, with lots of hard work to do, little sleep, and just happy to be there.  Signing up for a disaster response organization, flying from Florida to Texas knowing nobody, living with constant pain in the form of an hidden disease, and walking into a room full of strangers was more than a little intimidating.  But by probably half a day later, I had a whole new family, a TRibe.  Meeting and working with those veterans and civilians (from early 20’s into their 70’s) that week will forever be engrained in my memory and my heart. And being able to help our fellow Americans on their worst days was rewarding and meaningful to say the least.  Sometimes a homeowner would thank us for what we were doing, but in reality we were all thanking them.  It showed me on a whole new level what true humanity should be about.  It gave me purpose.  It gave the veterans I was serving with purpose again. And the whole experience filled my soul. We drank the TR kool-aid.

The friendships and bonds formed that first TR deployment still run deep.  Those strangers who became family know much of my story.  I am in contact with at least one of them weekly, if not daily. They check up on me, inquire about how I’m feeling, and keep me motivated.  And they know all about the Facial Pain Research Foundation now.  I have made sure to make others aware of TN and the FPRF should they run across anyone who needs more information or a listening ear.  Some of my new “family members” have even donated money on multiple occasions to the FPRF!!  To me, that is love.  And it is mutual.

I went back out to Texas 2 other times on disaster response deployments in Houston and in the Coastal Bend in the wake of Hurricane Harvey.  Each time brought new experiences, a whole new wave of friends who became family, and the chance to help our fellow Americans when they desperately needed us.  Being right in the middle of the destruction from the storm, doing strenuous, dirty, physical labor at no cost to the homeowner was some of the best work I’ve ever done.  We would joke all the time that you couldn’t pay us enough to do this kind of work.

But we would gladly do it for free!  Many times, the homeowners had no insurance on the houses we were working on or had a way to pay for repairs.  Even though we were gutting, or even demolishing their homes, we were still taking a financial burden off their hands.  Sometimes there were tears, but most always there was a hug and a big thank you to our Team.  Your heart hurts for them.  It could be you or family or your friends this was happening to.  In the 3 months TR was in Texas for that Operation, they deployed over 1700 volunteers who serviced close to 1000 homes.  I am honored and humbled to be included in those numbers. 

 Sometimes, in the middle of working on someone’s house.. doing a muck out or pulling up floors or carrying debris to the curb.. I find myself in amazement almost like, “When this one nail was being made, then boxed, shipped, sold, and used in the construction of this building, I’m sure whoever put it there meant it to be there for the long haul.”  And maybe it was there for decades or longer.  And then a disaster comes in and here I am, states or maybe even oceans away to pick it up or pull it out of a wall or a floor.  And then I would go on this whole “Wow” thought process in my head about everything I see the paint, the wallpaper, the shingles, the flooring, the homeowners.  All of those things have a story.  They all had a journey. And now they are part of mine. 

In May of this year, I went on my 4th disaster response Operation, this time to Puerto Rico in the aftermath response to Hurricane Maria.  As the plane was flying in, all you could see was blue tarped roofs everywhere.  My heart sank.  Those tarps are only meant to last about 90 days. We are about 9 months out from the storm and there is still widespread destruction on the island. Seeing  so many damaged buildings from the air, I realized so much still needs to be done to get Puerto Rico and its citizens back up and running. 

Again, I walked into a room of Team Rubicon Greyshirts who quickly became like family.  As we split off into strike teams everyday, we all got to see different parts of the island, more destruction, and had countless, personal interactions with the locals.  We were honored to have a few of our TRibemates on deployment with us, who are Puerto Rican and were on the island during the storm. 

They themselves were affected by storm and still have damage to their homes, yet here they are helping those on the island who also need help.  Those people we consider family were priceless to us, educating us on what the needs still are for the people of Puerto Rico, where the concentration of needs still are, and informed us there are still parts of the island with no power. 

NO POWER!!  I had to let that truly sink in.  They themselves went without power for over 2 months.  I can’t even fathom what that must have been like.  They remember it like it was yesterday.

I happened to be in Puerto Rico during my birthday on that deployment.  My team and I went to work on a home about an hour and a half away from our forward operating base (FOB). 

This family lost probably 75% of their home and were staying in one bedroom that was left of the house.  A husband and wife and an adult daughter shared a bedroom with a bathroom in it. That’s it.  We spent the day cleaning up debris on the side of their house that was once their house.  The family spoke almost no English, so it was a blessing we had one of the locals on our team.  At some point, he informed the family it was my birthday.  This family surprised me with home cooked tostones, rice and beans, and salad for lunch (my favorite meal). 

THEN they surprised me with cupcakes and sang to me in English and Spanish.  I lost it.  I was so moved by their generosity and the efforts they took to thank us for a few hours of work at their house.  They had little, and yet they gave what they could.  That is what I know of the people of Puerto Rico.  The kindness of everyone we interacted with was humbling.  We were there to help, to try to do what we could.  In your heart, you just wanted to help every single one of them.

Over that week, we worked on many homes from doing damage assessments, to debris removal, to chainsaw work.  We even cut away some trees in one of their state forests to try to clear a path to one of the trails that provides revenue to the island.  But no matter how much work we did though, there is so much more to do.  It’s almost hard to feel accomplished when you drive the streets and see things that need to be repaired everywhere.  I left that deployment in awe of the absolute beauty of Puerto Rico and the brokenness felt for all the people we could not get to help.

I returned home for only a week before I got redeployed to return to Puerto Rico for the last wave of that TR Operation.  Again, flying into San Juan, I think I saw even more tarps than the prior flight path.  This time around, I knew a little more of what to expect and thought I would not be as shell shocked as the time before.  That didn’t happen.  Again, destruction so widespread that it leaves much concern as the hurricane season has already started up again.  The homes.. the businesses.. the infrastructure.. they can’t take another hit right now.  Having met some of the locals, some of my heart is tied to that island and the well being of those who call that piece of paradise home.  It leaves me troubled as to what we could be doing for them, or for the people of Texas, or your hometown, or anywhere in the world that disasters strike.  I am proud to be a part of the TR mission and culture.  I am honored to have done my little part for those that needed help, and I can’t wait to get out there and do it again.

The point I am trying to make is, I am a TN Warrior.  I hurt all the time.. whether I am on vacation, going to the grocery store, or doing disaster response work.  To be honest, the last is my favorite. Sure, I have some pretty strong TN attacks while I’m out there and giving it my all.  I may have to hang back and not chainsaw for a bit because my sunglasses and helmet are hurting my skull, or the heat or the wind may be getting to my face.  But for the most part, I won’t let TN stop me from my passion.  The hardest part for me is when others see me in pain and have no idea what Trigeminal Neuralgia even is.  They can’t “see” it, so to them it may not seem like much. 

Sad, but true.

When I was recovering from my MVD, I couldn’t wait for the day I was going to be able to get up and go do stuff again.  It took months.  I knew I wanted to be an example or somehow show what positivity can do to change your daily life.  Stumbling upon Team Rubicon was one of the best driving forces in my determination to not let TN control my life.  Sometimes that’s easier said than done.  I do still have the brutal, level 10+ episodes and days.  But those days in between, the dash, that’s where the money is.  That’s where you live. 

Through a collaboration with Bureau of Land Management (BLM) and TR, I now have my wildland firefighter certification (Red Card) and am looking forward to helping in that capacity as well. 

I am also the Orlando, Florida City Coordinator for TR.  Whatever I can do to always further my knowledge, stay out of any boring comfort zone, be prepared, and help those in need, that’s where you’ll find me.  Well, there and here.  I don’t know what I would do without the FPRF. 

For more information about Team Rubicon, please go to

In service,

Tina Johnson, Director of Communications

Facial Pain Research Foundation



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