On June 11, 2006, Michaela O’Connor experienced an extreme, sudden pain along the right side of her face. Being only 19 years old and just about to complete her first year of college, she thought it would subside. It did not. Three months later, doctors diagnosed her with tic douloureux, more commonly known as trigeminal neuralgia (TN).
TN is a nerve disorder that affects the fifth cranial nerve. Distinguished by an abrupt, electric shock-like, stabbing pain, TN pain usually comes and goes throughout each day while varying in severity.
Michaela has a rare form of the disease, as the pain and severity never cease. Anything touching the right side of her face, whether be a strand of hair, the wind or water, is agonizing. Opening her mouth, smiling, brushing her teeth or coping with cold weather make the pain unbearable.
During the past seven years, Michaela has tried numerous therapies to control the pain. She underwent four brain surgeries and tried over thirty different medications. She changed her diet, eliminating gluten, sugar, and caffeine. She tried complementary treatments. Unfortunately, she has received little relief.
A year and a half into pain, Michaela saw one of the top neurosurgeons in the country at UCSF. He felt a microvascular depression, a neurological procedure to treat TN, would cure her of the pain. With a 97% success rate, Michaela agreed to the intensive brain surgery. Yet she fell in the 3% that do not gain relief.
She was distraught, as her only option was high doses of narcotics and anti-seizure medications. The drugs made her extremely depressed and did not ease the pain. Michaela found herself unable to get out of bed unless it was to attend school. Otherwise, she would just sleep as she faced unbearable pain that would not subside.
Michaela’s fourth surgery was an extremely rare one, especially for TN patients. Her neurologist horizontally severed the trigeminal nerve in an attempt to make the nerve no longer function, hoping to reduce or end Michaela’s pain. It was considered a success.
While Michaela still has severe pain in about 65% of her face, she is now completely numb on the right half of her teeth, lips, tongue and forehead, as well as her right eye and ear. She continues trying medications while hoping new medical developments will eventually lead to her answer. Until that day arrives, Michaela wears snow hats, hooded sweatshirts, jackets and scarves to protect her face.
Michaela moved home to be near her family and support system but continued to go to UC Davis, with her parents and siblings driving her to and from school for the next three years. She graduated from UCD and then enrolled in the local community college. Michaela is now in a court-reporting program in hopes that she will one day be able to work despite her condition.
Striving to live life on her terms, she admits it is challenging not to let pain control her. Each day she must consider the elements before leaving the house. She has to think about the weather, her current pain levels and if her face will be able to handle the length of time she will be away. She views the simplest of activities, such as being able to play outside with her nieces and nephews, as gifts.
Michaela has accepted that due to her illness she will never be able to experience certain things like rolling her car window down to feel a breeze or attending an outdoor sporting event. Instead, she focuses on what she can do.
She gets out of the bed each morning and works her hardest to live her “normal” life. It may be unique, different and more challenging than others’ typical days, but it is Michaela’s life. “While I do have trigeminal neuralgia, trigeminal neuralgia does not have me. I will not be defined by an illness.”
I would be lying if I said that this journey was one that I welcomed. Yet it is one that I have learned to accept and grow from. In the beginning, I asked, ‘Why me? What did I do to get this horrible disease?’ I no longer ask myself those questions. I see that I am strong enough to fight whatever comes my way; and when I get tired of fighting, my amazing family pushes me forward and fights with me.
Her resilience, determination and fortitude make Michaela an inspiration. Despite everything she has endured, she is not giving up. She looks for things that make her happy, like playing the guitar and listening to music, and does them every day. She has learned the importance of setting goals for herself, bringing her a sense of accomplishment and fulfillment and providing purpose to her life.
Organizations such as Trigeminal Neuralgia Association and the U.S. Pain Foundation have been helpful resources. The online resource, Living with TN, connects her to others dealing with similar pain. Realizing she is not alone has been therapeutic. It is her wish that anyone afflicted with chronic pain or TN find comfort, support and validation.
She is able to move forward with hope that her experiences and journey can help and inspire others who are suffering. She wants to use her story to raise awareness and bring understanding to what those with pain and illness endure. She hopes the medical community will continue to research rare disorders and make medical advances to help her and millions of others.
“My mom says I am her hero and role model, but I just consider myself an ordinary girl suffering from a severe case of a chronic condition. I am living my life to the best of my ability under the circumstances I was given. I may struggle with pain every day, but I survive each day. I refuse to give up, and will continue to move forward showing the world I can conquer anything that comes my way.”