It was Shelly Forster’s most burning question: What is my purpose?
Fighting through reconciling the logistics of her new life diagnosed with chronic pain, rock bottom became her home in 2008 – and it left her with a choice.
2008 is the year Forster underwent two brain surgeries and was diagnosed with three chronic pain disorders – oral mandibular dystonia, trigeminal neuralgia and tardive dyskinesia – all of which transformed her from an independent woman working in nuclear engineering to a homebound patient fighting for her life.
“Pain is the great debilitator,” Forster said. “Chronic pain is a different animal all together, but takes on a new, terrifying element when it’s neurological.”
A congenital tumor inside Forster’s cerebellum was the root of her startling symptoms – muscular contractions in her neck, loss of voluntary control of her jaw and tongue, and splitting migraines.
For some time prior, Forster attributed the consistent headache and preliminary symptoms to stress at her job as a document control specialist for a nuclear engineering company. Such a job often required 70-hour weeks with round-the-clock hours. Forster assumed her symptoms to be somewhat normal considering the abnormal circumstances.
However, when the pain worsened and ultra-abnormal symptoms arose, she sought medical attention. Forster walked out of the doctor’s office with an emergency brain surgery scheduled the next day to remove the tumor inside around her cerebellum – the brain’s motor control center, which explained the involuntary movements in the cervical region of her head.
Dystonia impacts approximately 250,000 people in the United States, according to the American Association of Neurological Surgeons. Despite it being the third most common movement disorder, it is widely un-recognized by the public.
Forster underwent a surgery which removed the tumor. She was able to go home and began the recovery process. However, during a follow-up appointment, an additional MRI revealed there was a secondary tumor – this time woven within her cerebellum.
Forster for the second time was scheduled for emergency surgery, during which the surgeon filleted her cerebellum to remove as much of the tumor as possible. By the time the surgery was finished, however, 20 percent of the tumor was untouchable and too entangled in nerves. This portion still remains in Forster’s cerebellum to this day.
Prior to the operations, Forster says she understood her painful symptoms were in direct correlation with the tumors. Thus, following the surgical removal, she also assumed, based on medical opinion, that those symptoms would disappear.
Reality, however, did not meet those expectations.
Because of the neural damage coupled with the manipulation of the cerebellum during the procedures, Forster was left with permanent damage that resulted in her ongoing diagnosis of TN, dystonia, and tardive dyskinesia. It took visits to approximately four doctors before she was properly diagnosed.
THE FIRST THREE YEARS
With fluctuating medical treatments as doctors attempted to find a perfect medicinal cocktail to treat her pain – all the while attempting to acclimate to these new doses – Forster remembers the first three years of her illness as a fog.
During that time, she kept journals. Always a writer since childhood, putting her thoughts – no matter how jumbled – on paper helped her express and sort the emotions jostling through her mind.
“I took notes. I wrote things down about how I felt and what I was thinking – my faith and family and the roles both played,” she said. “I wrote down the good and the bad.”
Many days, Forster’s pain levels were off the charts and she was unable to function. It was during this time that she asked the pivotal question which determined the rest of her life: What’s my purpose?
Finding a purpose in the pain, she said, was the key for her survival by developing psychological motivation which would bolster her physical perseverance.
A wife, mother of three and now grandmother of three, Forster says she didn’t have to look far. Additionally, she began to recognize the unique position her illnesses put her in. Forster said this made her feel responsible for sharing her story with others – with the end goal of letting people with chronic pain know they’re not alone.
Fighting for her health meant fighting for her family and for others in similar situations.
Forster clearly found her purpose.
“It’s easy to accept your situation and move on,” she said. “But when you start paying attention to the battle and educate yourself, you’ll increase your quality of life.”
THE OTHER SIDE
Amid the turmoil of the first three years, a precedent was set in many facets of Forster’s life – experiences which developed the dynamics of what would become her new normal.
“I was able to discover trends,” she said. “I put a magnifying glass over the truth.”
Some relationships were lost. And although those years are met with what she says are some regrets, she knows the Shelly Forster of that time was often not reflective of her true character. During those times, pain sometimes spoke louder.
“It’s OK to walk away from relationships, no matter who they are, if that person cannot support them during their darkest moments,” she said. “We need to be relieved from that accountability.”
On the other hand, however, she says she knows the lost relationships proved who would stand by her side through the worst time of her life – and who couldn’t or wouldn’t. From that point, she established her core team of reliable people who became her baseline for support.
“When pain begins to define relationships, you are beginning to find out what other people are made of,” she said. “It’s the recognition that, because pain is part of my everyday life, those people are the ones that I need to walk away from for my benefit.”
Forster also established a core medical team. Because of the rarity of her disorders, she was referred to medical specialists, many of whom were considered cutting edge in their fields. But, being cutting edge, she discovered, did not equally entail compassion and willingness to advocate for patients. Through this realization, Forster learned to advocate for herself – even if it meant cutting off ties with doctors whom did not have her best interest in mind or were unwilling to help in her fight for her life.
This journey ultimately landed her at the Rochester, Minnesota-based Mayo Clinic, where she began undergoing botulinum toxin injections. According to The Dystonia Society, BTX treatment injects Botox directly into the targeted muscle which is impacted by dystonic activity. Although botulinum toxin is toxic in purified and controlled doses, it can help to relax muscular activity.
At the Mayo Clinic, Forster was treated by now-retired Dr. Joseph Matsumoto, who every three months typically administered 12 injections into her cervical muscles. The needles, approximately 30-gauge, are connected to a monitoring machine which judges the muscular-contraction activity at the time of injection with an auditory response. Always, the machine is buzzing at high volume when the needles are inserted. Forster’s husband Tom said sometimes he can see the needle bend slightly as it attempts to pierce the muscle.
Her daily companion for treatment is the pill box – containing pills assisting with pain relief, muscle relaxers, antispasmodics, blood pressure for hypertension linked to pain, and anti anxiety. Creating this fine-tuned cocktail took 10 years, and Forster said it still changes periodically as new medications are produced. It’s all trial and error.
For all the absurdities and abnormalities in her life, Forster recognized trends and patterns – details that made her world a better environment. She learned her body’s unique responses to treatments or the lack thereof. Mitigating stress and being selective regarding which social interactions were most pertinent allowed her to venture from home without facing devastating impacts.
“What I’m going through is overwhelming enough,” Forster said. “I’m just getting through this moment. And not just get through. I’m trying to live this moment. Chronic pain patients need to know there’s life.”
Moving forward in this mindset, Forster said she’ll often plan ahead when she knows there is an important event she wants to attend – such as her grandson’s birthday party. In the days leading up to the event, Forster will rest more frequently and ensure she’s medicated properly.
Forster continued to write. This time, however, it was tracking her knowledge, medical progression, and jotting down pieces of inspiration that ignited fire in her fight for life. From psychology to medical management, Forster began to formulate her new normal.
At the same time, her purpose of pain began to grow arms and legs – and a plan came into focus. Forster fell back on her writing abilities, ultimately beginning work on a medical biography to share her story and gained knowledge to assist others who need direction in learning how to find a new normal after a chronic pain diagnosis.
Looking back, Forster recalls the many dark days when she considered what her purpose was. But, today, she is grateful to be alive with her purpose living and growing around her in the form of family and advocacy for others.
“The dark days behind me taught that the dark days to come are survivable,” she said. “Every time you have to apply that strength, it means you’ve got it in you for the next time.”
Hanna Smith is a contributing writer for the Facial Pain Research Foundation. She is an award-winning journalist and assistant author of an in-progress medical biography detailing life with chronic pain. A student of bioclinical science, Smith studies surgical technology, psychology, physiology, and neurobiology to specialize in the medical treatment of individuals with disorders such as Trigeminal Neuralgia. Her father, diagnosed with Type-I TN for 26 years, inspired her to be dedicated to and engaged in the awareness, research, and medical practices that change the lives of people with chronic pain.