Facing down the doubters, he’s finding relief.
Spencer Kiernan was just eight years old when a sledding accident resulted in debilitating pain. Now 14, Spencer is thankful to have finally found therapies that help him live a somewhat “normal” teenage life. For Spencer, the past six years have been a bleak and dark journey that taught him the true meaning of fighting—holding on and never giving up.
It’s not “growing pains”
As a young child, Spencer was rambunctious and active. He and his older sister enjoyed playing sports and swimming. Adventurous and constantly on the move, Spencer was prone to accidents. Yet he would skin his knees, bump his head and fall down without ever complaining to his parents. Spencer even broke his clavicle and never mentioned discomfort.
So his mom knew something was terribly wrong when Spencer said he suddenly felt intense pain from hip to ankle. He felt stabbing pains—like knives—in his legs. Spencer’s pediatrician assured them he was experiencing “growing pains,” a common occurrence for many third graders, and that the muscle aches in his leg would slowly subside as he grew. But the pain escalated, and Spencer was diagnosed with scoliosis. He missed school, staying home in agony.
Spencer was fortunate to have parents who believed the pain was real and serious. His mother advocated fiercely for appropriate treatment; his father grasped the severity during a family trip to the grocery store when Spencer was unable to carry a lightweight bag. Spencer’s mother took him to multiple specialists at different hospitals; she didn’t believe the initial diagnosis of “growing pains.” She also squashed the doctor’s idea that Spencer was making up the pain to avoid school and social activities.
When pain limits life
By this point, the pain was affecting every aspect of Spencer’s life. He no longer played outside, and missed a large amount of school. Spencer was viciously bullied at school for being different.
Spencer’s whole body was highly sensitive. No one could touch him. Loud sounds and bright lights irritated him. Foods he used to enjoy tasted metallic, or the texture bothered him. And despite being tired all the time, Spencer couldn’t sleep. His body was restless, and in his sleep he would scream out in agony.
His pediatrician recommended physical therapy in an attempt to provide more answers. His therapist felt there was a disconnect between Spencer’s brain and muscles; he didn’t know how to contract the muscles in his arm to show his bicep. As doctor after doctor said he had some form of conversion disorder, Spencer’s pain went untreated. When he stopped walking, health care providers called him “lazy.”
Help and hindrance at school
It was the school nurse who eventually helped Spencer find answers. Fed up with his inadequate treatment, she connected his mother with another parent who offered insight. Through this connection, Spencer and his mother found a network of support—a group of local parents and kids dealing with chronic pain.
Spencer started the sixth grade feeling his worst. He stopped attending school and entered Home Hospital instruction, a service offered through his school district. A teacher came to Spencer’s house five hours each week to help him with his curriculum and school assignments. But because of the pain, he would spend the majority of the time crying on the floor in the fetal position.
After the teacher assigned to his case wrote a review stating she believed Spencer wasn’t trying to learn and that he was faking symptoms, an individualized education program (IEP) was scheduled. Spencer didn’t understand the gravity of this situation, but his mother did. She was frustrated, upset and worried about her son; but she also knew she flustered easily and would have a hard time being assertive in that setting. Luckily, a school psychologist (whose son had been diagnosed years earlier with reflex sympathetic dystrophy syndrome) offered to attend the IEP meeting with her.
With a trusted advocate by her side, Spencer’s mom was able to secure a space at Venture School, an independent study school where Spencer would have the chance to succeed alongside his peers.
A fresh start
At first, Spencer could only last 10 minutes at school before needing to return home. He struggled to focus or study, but his mother made sure he finished assignments and passed classes. During sixth grade, Venture was a fantastic fit for him: He had the flexibility to stand or sit, was allowed to use the elevator and could keep his backpack in one classroom, returning for books between periods. Today, he’s back with his peers at the local middle school.
It took four years of seeing numerous medical professionals for Spencer to finally be diagnosed with amplified musculoskeletal pain syndrome (AMPS). This condition causes a person to develop an abnormal pain reflex; the nervous system processes what would be normal sensations as high pain signals. (AMPS has become an umbrella term for several pain disorders, including complex regional pain syndrome.)
With new answers, Spencer tried to find therapies that worked, researching many modalities. Medications didn’t provide pain relief, and made him feel like a “zombie.” Water therapy and desensitization had little impact. He saw a nutritionist and acupuncturist, and other holistic healers for light therapy. Nothing significantly or permanently reduced his pain.
A chiropractic alternative
On the recommendation of other parents in his pain group, Spencer tried chiropractic care and landed on a method that helped: the Blair technique, a chiropractic practice that uses Titron thermographic testing as well as a specific set of upper cervical x-rays to assess the cervical spine, allowing for a gentle adjustment that holds its position for longer periods of time.
Spencer went three times a week for 15 months. At first Spencer felt worse, not better. But eventually, he enjoyed 15 minutes with no pain following an appointment. Over time, he could go for three hours pain-free after each session. It was as if the old Spencer had returned. Soon he was experiencing days at a time with no pain.
Yet his body couldn’t hold an adjustment between sessions, and Spencer was discouraged.
Spencer began seeing another chiropractor that used a more holistic approach to restoring health. She worked to balance hormones and performed spinal decompression and laser therapy. Blood work showed Spencer was severely deficient in nearly every vitamin, so supplements were prescribed.
Spencer then began laser therapy. Like before, Spencer felt substantially worse following the low-dose levels of laser light. He came close to giving up, but eventually the approach paid off—and he now credits this practitioner for his recovery.
Life with less pain
Today, Spencer is doing better. Despite missing 40 days of school this year, he is adamant that the leg pains and flares he experiences are triggered by external forces like weather. He chooses to see the positive, believing each year he will continue to get stronger. “I feel I am almost all the way in remission,” says Spencer. He also believes his faith helped him through the dark periods, giving him strength and comfort.
Spencer is not letting the fear of a relapse dictate his life. While Xbox games kept him connected with his peers for many years, he can now play sports again and hopes to join an indoor soccer team. His long-term goal is to one day be a nurse or doctor.
His advice to other kids like him would be to never give up, and find someone who believes in you. Spencer feels fortunate to have connected with a network of support for him and his mother. When he is not feeling well, Spencer knows he can text any of the other kids for advice and understanding. And he can just be himself with them… there is no pressure to talk about how he is feeling.
Advocating for recognition
Spencer still feels many diseases that appear invisible lead to outward judgment and ridicule. The lack of empathy and quick assumption that anyone would fake pain must stop. Feeling unheard and disbelieved leads to self-esteem issues and depression. Spencer wishes more people would show compassion for those who are obviously suffering.
Equally important to Spencer is for doctors to use other methods besides the typical medication or procedure route to treat pain. Though many complementary therapies are not covered by health insurance plans, he hopes this will change.
Spencer Kiernan overcame skepticism by the medical profession, hurtful comments by his peers, and crippling pain that robbed him of many happy childhood memories. But he never lost his humor and always remained kind to others. Spencer is a fighter.
“What I want to share with my fellow peers is that they must not stop looking for a cure. If you find yourself judged by people who refuse to recognize the pain, keep searching for a support system that does understand,” he says. “I am so glad I never lost hope. Don’t lose yours either… someone will be there for you.”