“I know that what I am enduring makes me brave”
For the past 12 years, Petty Officer Second Class (E-5) Kathryn E. Benson has been serving in the United States Coast Guard. She loves her job, shipmates, and her country. Being part of the military is one of the greatest honors in her life.
But by the end of this year, she will be medically retired because of trigeminal neuralgia (TN)—a heart-breaking decision that comes from upper command.
The attacks of 9/11 created a void in Kathryn’s life. She needed direction, and a greater purpose in her life—so she sought out a fulfilling career that would help people and our country. With her love of the ocean, she found her calling in the United States Coast Guard.
Making a change with purpose
In June 2004, Kathryn enlisted. She spent her first four and half years in Virginia stationed in Portsmouth (USCGC FORWARD) and Norfolk (Legal Division). She met Jake, Petty Officer First Class (E-6), got married and had a son, Everett. In 2009, the family moved to Base Kodiak in Alaska. Since 2012, Kathryn and Jake have been stationed in Corpus Christi, Texas.
Kathryn has received numerous honors including the Commandant Letter of Commendation Ribbon (June 2009 and April 2012), Coast Guard Pistol Marksman Ribbon (July 2004 and May 2006), and the National Defense Service Medal (November 2004). She completed the Applied Suicide Intervention Skills Training (ASIST) in November 2013, to combat a serious problem facing the military and one to which Kathryn has a personal connection: some of her friends and shipmates have succumbed to suicide.
Kathryn was happy. She had a wonderful son, a loving, supportive husband, and a job that brought her pride. Being in the Coast Guard was what she was meant to do. Her life was complete.
Things begin to unravel
But in October 2014, Kathryn found a lump in her neck: she had stage I thyroid cancer. After the first surgery was not completely successful in removing her cancer, doctors performed a second surgery in hopes of beating the disease.
From the moment she woke following that surgery, excruciating pain has been part of her daily life. Initially, her medical team believed the burning pain in her face was a side effect of surgery; they were confident it would dissipate.
Instead, as Kathryn underwent a year of radiation treatment and Thyrogen shots, the pain persisted. She sought out other providers for an answer to this most horrific sensation. A dentist ruled out TMJ; a pain specialist and neurologist tried to help. Kathryn’s primary care physician finally concluded a nerve had inadvertently been damaged during surgery. In August 2015, Kathryn was diagnosed with trigeminal neuralgia (TN) of region #3.
Diagnosis: Trigeminal neuralgia
TN is a nerve disorder that affects the fifth cranial nerve. Distinguished by an aching, burning, electric shock-like, stabbing pain, TN pain is mentally and physically incapacitating. Many people call the condition the “suicide disease.”
“While this newfound knowledge should have terrified me, it actually affirmed how I had been feeling for the past year,” says Kathryn. “In a sense, it was a relief to have the severity of the pain from TN validated.”
Kathryn was prescribed pain medication, nerve blockers, and sleeping medications. But the side effects have been terrible. There are days her entire system feels off; she is often forgetful and zombie-like. Most of her active work duties have been taken from her because she can’t concentrate and makes too many mistakes. She now suffers from migraines, chronic pain, depression, and anxiety.
“No other treatment has ever been discussed or offered to me other than medications,” she says. “My doctor once laughed and said I could try yoga, but that was it. I know other medications and therapies exist for TN patients, so it can be frustrating to know I am not on the right treatment path. I do have hope that one day my pain will be better managed—maybe when I am allowed to seek care outside of military medicine.”
While fortunate to have supportive and understanding shipmates, some who don’t work closely with her question her pain. “They don’t believe me, like I should have ‘shaken this off’ a long time ago,” Kathryn explains. “It hurts knowing some think I am using pain as a way to get additional time off. All I want is to be a Coast Guard. I wish I could be a more dependable teammate. I never want to let people down, especially those who care the most for me.”
In general, Kathryn feels the military harbors a stigma around pain. “It’s very hard for military counterparts to understand the pain we go through every day, especially because we still look healthy and strong enough to serve. I wish they could understand that behind my uniform, I battle with undying pain and thoughts of suicide. Just because you cannot see it does not mean that is not there.”
Pain impacts her entire life
Every aspect of Kathryn’s life has been affected by pain. Many days she falls asleep with pain, only to wake up in pain. A kiss from her husband can leave her writhing in misery. Wind (a daily occurrence in Corpus Christi) causes terrible burning and stabbing along her face, but she cannot shield it with a hat, scarf, or sunglasses for long periods of time.
Her self-esteem is gone. Each day she fights a silent battle. On the days she works, she retreats to her bedroom as soon as she gets home. Kathryn feels like a neglectful parent and a horrible wife. She no longer can play with her son or do fun family activities together on a whim; everything is dependent on her pain level. She beats herself up for being short-tempered with those who love her most and hates the person she has become. “No matter what, I cannot seem to win,” she says.
“I have changed so much. I had never battled suicide until now. It is horrible thing for a mother of a beautiful and smart child to say,” Kathryn explains. “My son deserves a happy, healthy mom. My heart aches for Everett; he is carrying too much weight for a little person. It is just that finding the will to live through another pain-filled day is sometimes more than I can bear.”
Drawing on life lessons
Despite struggles, Kathryn embraces the lessons she has learned through this journey. Mainly, how unmistakable her personal strength is—to overcome and continue living. She has also discovered how fragile life is: “Being in the military, you think you are bulletproof, indestructible, and invincible. Now I know that’s not the case. I am working to change that internal dialogue because I know what I am enduring makes me brave.”
It is her foundation of family and friends that motivate Kathryn to keep going when pain overwhelms her. Her closest friends offer support, as well as a neighbor who also has TN. Unconditional support and daily phone calls from her mom lighten her load. Most importantly, Kathryn is forever grateful for Jake and Everett. They are her lifeline, providing unwavering love and encouragement.
The Wounded Warrior Project, and finding a new path
Kathryn gets help from Wounded Warrior Project (WWP). WWP members have stayed by her side through all of her health issues, and check on her monthly. The Coast Guard’s Employee Assistance Program has provided Kathryn with counseling to combat her depression.
The past two years have been filled with triumphs, hardships, and heartaches. Kathryn overcame cancer (a huge victory!), but because of her TN, the Medical Board for Navy Medicine is releasing her from active duty. This monumental loss of her career places a financial burden on her family. With so much unknown, it is a daily task for her to stay optimistic.
Yet Kathryn knows she is not alone. Countless members of the military find themselves in similar circumstances. This is why she would like to start an online support group for those living with chronic pain and serving our country. “We are in a very unique situation,” says Kathryn. “Military members are not allowed to express pain or stand out. We are taught to be fighters, to take pride in being in top physical condition, and able to withstand the most difficult situations. But chronic pain is debilitating. It eats at our spirit.”
Kathryn wishes more people would take pain seriously: “Those unaffected by pain need to be better listeners. Believe those who say they are suffering. Staying quiet about pain is fueling the high rate of veteran suicides. We need to come together to realize life is worth fighting for again.”
Through it all, Kathryn is a warrior. Her loyalty lies with her country and family. Brave, loving, and sarcastically witty, Kathryn chooses each day to live, hopeful that her pain will be better managed in the future.
“For so long, I defined myself as a Coast Guardsman. Now that my time in the service is ending, I see my family, friends, and the way I choose to live my life also define me. On those days when my pain level is high, I eat a chocolate chip waffle because chocolate always helps. There has to be more to my life than suffering, and I am going to do my best to seek it out.”
Coast Guard Employee Assistance Program (CG SUPRT): achievesolutions.net/achievesolutions/en/cgsuprt/Home.do
Wounded Warrior Project: woundedwarriorproject.org