Life is rarely easy for any of us. Facing challenges comes with being a human being. Of course, there is no doubt that there are some people who face much bigger and bolder obstacles in life. But one thing that sets our experiences apart, whether big or small, is how we deal with the hand that we are dealt in life.
Holly Long is truly one of most inspirational women I have met since moving to Portland. Life has definitely not always been kind to her in the traditional sense, and after reading her story you might believe that she has every right to be negative and resentful at the things that have happened to her. But despite everything she has experienced, her focus has remained on the positive, and she is a living lesson that no challenge is insurmountable in life.
The year 2013 was a pretty shitty year for Holly to say the least, but it didn’t start out that way. She was in her early 30s, working two jobs and going to school, and living a carefree single life. By her account, she had a great life.
But that changed in May when she was hit by a drunk driver on I-84 on her way home. Amazingly, her only real issue was a shoulder injury that she had to visit a chiropractor for.
Then, in November, she was in another car accident. This time she was rear-ended by a semi-truck on the highway. In case you didn’t get that, SHE WAS LITERALLY HIT BY A TRUCK. At this point, anyone would think, “Wow, that’s some terrible luck.” Indeed, it was. The result of this accident was different from the first, though.
Holly started to experience vertigo and sensitivity to lights and sounds. She developed Tinnitus and equilibrium problems. She went to doctors who essentially brushed her off. They encouraged her to try things like the Epley Maneuver to help fix her vertigo. They told her once the crystals reset in her ears, she would be better. But she wasn’t.
It wasn’t until she met with Dr. Ertan Esmer at the Portland Clinic who decided to look deeper at her symptoms. He insisted Holly get an MRI, because the imaging might tell them more.
The results came back at 9 am on Saturday, January 18, 2014. Holly remembers very clearly receiving the email notification through MyChart. The jargon in the results file meant nothing to Holly, so she started googling it. What she discovered she was totally unprepared for. “There was absolutely nothing in me that thought there would be anything on that MRI,” Holly said.
But as she sorted through the jargon, one term stood out to her: Brain Tumor. Holly remembers calling her mom and just losing it. It was, after all, a Saturday. There was no one at the clinic to call and talk through the findings.
In case you haven’t been keeping track, Holly has now been hit by a drunk driver, been rear-ended by a semi-truck and been diagnosed with having brain tumors in less than a year!
Acoustic Neuroma, or Vestibular Schawannoma are usually benign tumors that wrap around nerve fibers and affect hearing, equilibrium, cause ringing in the ears, facial paralysis, and if they grow large enough, they can be life-threatening. Some tumors only require monitoring, and some require surgical intervention. Holly’s were in the latter group.
It was at this point that Holly started to learn to be an advocate for herself, and so she did what many of us do--she found a Facebook group dedicated to treatment of these types of tumors. At this point, she had lost most of her hearing in her right ear, and she was unable to drive due to her severe vertigo. Symptoms aside, Holly remembers the hardest part being that she was completely dependent upon other people. “Here I was, a very independent person, and the hardest thing was that I had to ask other people to help me.” Holly said.
She soon discovered navigating finding a surgeon that could help her was difficult. The approach of her first surgeon didn’t sit right with Holly, so she took a chance and sent her results to a surgeon in L.A. That surgeon suggested Holly was right for feeling doubt, and encouraged her to find a new surgeon with a different approach.
This brought her to an amazing team of doctors and surgeons at OSHU, that included Dr. Aclan Dogan and Dr. Frank Warren, and Holly still raves about how incredible they were for her. She said, “They knew their stuff! They were so relatable and comfortable, and my surgery was a huge success.” (Although it still meant mild facial palsy, learning to walk again, complete hearing loss on her right side, and having double vision for eight weeks afterward, including a year of vestibular therapy.)
In true Holly fashion, within four months after surgery, she took a trip to Peru that she and her boyfriend, Scott, and family had been planning for two years (before the events of the past year started). And, after climbing Huyana Picchu (the tall mountain) at the Machu Picchu ruins, and after an intense and emotional hike (“I couldn’t believe I had done it!” Holly remembers), her boyfriend proposed to her on top of the mountain in front of all of her family.
Upon returning from Peru, she and her (now) fiance decided they didn’t want to wait to start a family any longer. She immediately became pregnant, but devastatingly suffered a miscarriage about two months later.
She and Scott were married three months and 2 weeks after their return from Peru. Their daughter (now 4 years old) was conceived on their wedding night. At 22 weeks pregnant, they “babymooned” to the Northern California Redwoods. Returning home, Holly had a sudden onset of strange symptoms: a fever, huge hives, swollen lips, and she couldn’t keep any food or drink down. She went straight to Labor and Delivery, and after giving her IV fluids and benadryl, they told her they didn’t know what her reaction was from. She returned to Labor and Delivery a total of three times that week, only to be given the same treatment and sent home with no answers.
Over the next several years, Holly continued to have unidentifiable symptoms. She also gave birth to the couple’s son (now 2 years old) She didn’t sleep well. She was fatigued. She had frequent migraines and was regularly nauseous. Her joints were painful. She also had intense anxiety.
At first, Holly tried to explain the symptoms as a “new normal” for a brain tumor survivor coupled with new parenthood. But the symptoms continued even as time went on. She started losing funtion in her hands and they were in a great deal of pain. She started making appointment after appointment only to be told she had carpal tunnel. Or fibromyalgia. Or Hashimoto’s. Doctors couldn’t seem to agree, and Holly’s frustration grew.
So, once again, she turned to the internet. It was then that she read about Lyme disease, and had an a-ha moment about her symptoms. “It fit. It all fit.” Holly said. Looking back, she feels that she may have been bitten by a tick when she had babymooned in the Redwoods, although she didn’t notice a bite/bulls-eye rash at the time.
Holly returned to doctors and asked to be tested for Lyme. She was told “two hard no’s,” and that Lyme didn’t exist in Oregon. She finally found a naturopathic doctor who begrudgingly ordered an antibody test with bloodwork, as well as an MRI of her hands. The results confirmed the band she had was positive for Lyme (although not CDC positive since that must be tested in the acute phase of the disease between 4-8 weeks). Finally, it would seem Holly would finally get some relief.
Not so fast. The naturopathic doctor told Holly she couldn’t be treated for the disease because of her fear of the Oregon Medical Board and the insurance company. This began Holly’s arduous and frustrating journey of navigating a health care system that she defines as “broken” with tons of red tape and denials. “I’m still trying to fight to get a bill paid from six months ago with my insurance. And I have great insurance. EXPENSIVE insurance.” Holly laments. She can go back to naturopathic care, but it would require her to pay out of pocket for her treatments.
During our interview, I expressed to Holly how amazing I thought it was that she could keep such a positive mindset after going through everything she has. Holly believes and acknowledges it is partially because she has had the skills and privilege that so many people don’t.
These days, Holly is a holistic nutritionist, herbalist, entrepreneur, and the caretaker and pre-K homeschool teacher to her two young children. She is the owner of Goosebud LLC (https://www.goosebud.com/), which offers herbal goods like organic DIY Elderberry syrup kits, handcrafted jewelry, reusable bags, and macrame home decor, which continues to meet and exceed her goals each month. She still endures symptoms, and some days are better than others, but she continues to keep a positive mindset. She strongly believes that it is this type of mindset that has brought her to this place.
“When I was going through my surgery, I almost felt my positivity was arrogant. But I realized that I had to take everything with a grain of salt because I would see so many negative comments (about diagnosis/prognosis/etc.). The power of affirmation had a huge impact. I told myself I needed to keep saying what outcome I wanted every day.”
Her best advice? “Make your life as stress-less as possible. Don’t cause anymore stress in your body. Do whatever you can to take moments to be mindful. Meditate. I love yoga. Go outside. Get fresh air. Be in the sun,” Holly advises. “Talking about hard things is important. It’s never a healthy situation to brush something under the rug and ignore it. You face it, acknowledge it, and move on. Be stronger from it. Learn from it. The girl I was before all of this could not do the thing I do today.”
I think most of us would wholeheartedly agree with you, Holly.
DISCLAIMER: #seetheinvisible stories are stories told to me, nothing more, nothing less. I make no judgment as to their claims of validity of facts or circumstances, but rather I see myself only as the conduit people choose to help tell their story to the world. It's my hope that through the process of bringing this story to the public, it will foster connection, inspiration, and brotherhood. One human to another. I hope that by reading others' invisible stories, you find a bit more of your own story.
ABOUT THE AUTHOR:
Nicole Severson is the owner of Nicole Severson Photography in Beaverton, Oregon. While she adores all types of photography, her heart lies in photographing families through documentary photography. She grew up in small-town Wisconsin where she was a middle school English teacher for 13 years. Storytelling has always been a theme in her life, and when she started photography professionally five years ago, she knew she had found the perfect outlet to tell stories in a visual way. Photography finally beat out teaching (it was a hard fought battle, though), and after resigning from teaching, she and her family moved to Oregon to be close to her oldest son (she is self-proclaimed “bad empty-nester”) and to restructure her photography business into a full time gig. Her newest venture is blog titled #seetheinvisible in which she talks to people about their invisible every day stories and visually tells their story through a photo essay component, which she hopes to continue doing well into the future.