Each month, Mothering With Chronic Pain will spotlight a different mother battling chronic pain or illness. Alisha Taylor, who lives with syringomyelia, is our featured mom for the month of November.
Imagine a hot coal burning inside your spine. It’s there all the time. You can never remove it, and no one can take it out for you. Alisha Taylor is a mom living in a small town in Northern California, and that’s how she describes the excruciating pain which has been an everyday reality for her throughout the past decade.
Alisha’s official diagnosis is syringomyelia, a rare spinal cord condition affecting only about eight out of every 100,000 people. Syringomyelia causes irreversible damage to the spine and nerves, resulting in widespread pain and weakness. In people with syringomyelia, a pocket of cerebrospinal fluid (CSF), known as a syrinx, accumulates within the spinal cord. Alisha’s syrinx is 7.4mm wide and spans from the C4 to T1 areas of her spine.
Alisha is a mom of three children, ages fourteen, seven, and two. Of her three children, Alisha feels the worst for her youngest. “I’m not the mom I want to be to her, or like I was with my first two,” she reveals. “My condition has gotten progressively worse since my diagnosis.”
Alisha is relieved that she was diagnosed when her youngest child was only nine months old, otherwise she may not have decided to have another child. Despite the struggles and pain she endures, she loves being a mom and feels that her children have prevented her from feeling sorry for herself.
Everyday activities that most healthy people take for granted are incredibly challenging for a person living with syringomyelia. “My pain makes it hard for me to do regular chores around the house and certain activities some days. My weight limit for lifting is only eight pounds, and my baby is closer to thirty [pounds].” Alisha’s house is located “off grid,” so her daily routine includes chores like lifting gas cans, bringing in firewood, and pushing wheelbarrows – all while living with pain most people could never imagine enduring.
Understandably, Alisha envies parents who can live their lives and spend time with their children without having to worry about pain and illness. “I watch them interact with their kids, run, jump, play, and it depresses me sometimes. I always plan around my pain,” she explains. Like many parents with chronic pain, Alisha regrets the unpredictability of her condition and the need to to cancel plans with friends and family. “With syringomyelia, there is no telling how you are going to feel from one day to the next.”
Because Alisha lives in an isolated small town, getting treatment for her rare condition can be difficult. Often, she is treated like a drug addict rather than as a person in desperate need of pain relief in order to function. Her primary treatment plan includes a narcotic and a muscle relaxer, and she has encountered doctors who treat her like a “criminal” for requiring a prescription for an opioid medication.
Unfortunately, some of Alisha’s friends also believe she is addicted to prescription painkillers. While syringomyelia is misunderstood by many people, including medical professionals, Alisha remains hopeful about her future and continues to fight for the care she deserves. This month, she has an appointment to see a pain management doctor, and she has a referral to see doctors at the University of California.
Alisha wishes the world understood that syringomyelia is an invisible disease. “It eats away at your self-confidence, your ability to do what others take for granted, and there is no cure,” Alisha relates. While surgery is an option, Alisha’s doctors have told her that there is only a twenty percent chance of improvement. Surgery could even worsen her condition, or worse – paralyze her.
Alisha would also like other mothers newly diagnosed with syringomyelia to know that they are not “not crazy or lazy.” She has some powerful and inspiring words for other mothers with chronic pain: “Fight for your treatment and rest as much as possible. Rest is key to this illness. And as with any chronic illness, come to terms with it as soon as possible, know your limitations, and ask for help. It’s out there. You just gotta go and find it.”
Alisha is an inspiration to other mothers with chronic illness, and her courage in sharing her story provides hope to our community.