To the outside world, eighteen-year-old Mary Currall appears to be a normal young adult. No one would suspect she lives with thirteen of the diseases and disorders on the National Organization of Rare Disorders list. The diseases affect every aspect of her life. Yet Mary refuses to let pain or fear rob her of her dreams. Instead, she has found meaning in her suffering, believing her pain can help heal the world.
The fifth of eight children, Mary was diagnosed with type 1 juvenile diabetes at age five. Later that year she woke up unable to move her left side and developed seizures. A hemorrhagic stroke, which doctors first thought was a brain tumor, led to an MRI, which showed a Chiari malformation: a congenital structural problem at the base of the skull that affects the brain and spinal cord. No one knew at the time how much this would impact Mary’s future health and how much pain she would suffer.
Doctors soon discovered she had multiple issues in the brain and spinal cord. In addition to Chiari malformation, Mary has a tethered spinal cord, dural ectasia, severe craniocervical instability affecting the brainstem, postural orthostatic tachycardia syndrome (POTS), a connective tissue disorder, kidney problems, HLA-B27 positive enthesitis related spondyloarthropathy, dysautonomia, osteoarthritis, Tourette’s syndrome, mitochondrial disease, and juvenile diabetes. These conditions impact her brain, heart, spinal cord, breathing, eyes, bones, ligaments and tissues.
At 12, Mary had her first surgery to release her tethered spinal cord. Doctors hoped this would alleviate the intense leg and foot pain, numbness and tingling in her extremities, back pain, scoliosis, nausea, urinary and bowel problems and brain stem issues. While very successful, the surgery caused Mary’s first real mitochondrial crisis, and her health went downhill very quickly.
She spent the next few years horizontal, and Seattle Children’s Hospital became Mary’s home-away-from-home. She has had seven surgeries on her brain, kidneys, skull, as well as spinal fixation and port installation. Mary’s life revolves around health-related issues. She is either regressing or maintaining. Every day, she is physically exhausted and dizzy. She lives with intense headaches, pupils constantly dilated, muscle cramps and breathing difficulties. Mary has chronic pain throughout her body and has to be constantly aware of her baseline in order to avoid further complications.
Some people with chronic illness might react with anger and self-pity, others with depression, anxiety or fear. Mary responds with gratitude and joy, saying, “It is what it is.” Attending doctors appointments, undergoing invasive medical procedures, injecting catheters into herself, pricking her fingers to test her blood and taking over 33 pills a day is just part of her daily routine.
Like anyone dealing with chronic conditions, Mary has moments of darkness. All of her diseases are chronic, many incurable. During those worrisome times, Mary remembers that she must live one day at a time. She puts her trust in God while reminding herself that this is her life purpose. Mary feels like she has become a better person because of suffering.
She recognizes and appreciates the smallest things in life and feels very fortunate to have a caring family that loves and supports her. Her parents are her heroes. They have devoted their lives, sacrificing everything in order to provide for Mary and her siblings, all of whom have their own health problems.
Yet most importantly, Mary has learned to live out her faith through pain. She views her diseases as a gift from above. Her faith has guided her through the darkest days. “Suffering is only a part of me, but in a way, it is the most important part. It has opened my eyes to all the little things God brings into my life, and how precious they are. It has filled me with great love and compassion that I ache to share with everyone. Most importantly, it has opened the doors of my heart to God’s will in my life, and drawn me closer to Him.”
Mary says the hardest part of being sick has been dealing with rejection from her peers. With few exceptions, her friends avoided her, pretending that her medical conditions, and she, did not exist. “I am sad a lot and feel confused. I just think I am invisible. I do not know how to trust those my age anymore.” And over the past decade Mary has faced more setbacks than triumphs. However, she still looks for the positive in every situation. Through her journey, Mary has received the best care possible, all over the country, and found therapies that bring relief. A particular chemotherapy drug and a newer infused medicine have been extremely helpful in relieving her arthritis pain, enabling her to walk properly. Lidocaine infusions also reduce her overall pain levels, and she practices the pain techniques learned at the Seattle Children’s Pain Clinic.
As an outlet, Mary plays the piano, sings and spends time online at Pinterest. She wants to become a nurse and is currently attending classes at South Puget Sound Community College. She understands suffering, which makes her truly empathetic to others’ needs.
An organization that has magically impacted Mary’s life is Make-A-Wish Foundation. In 2008, the foundation honored her dream of visiting Disneyworld. It was the first time her entire family vacationed together. More importantly, it was the first time Mary felt “normal” since she was five years old. Make-A-Wish has changed her life, bringing her peace and hope. Determined to give back, she has raised money for them and is hosting her own fundraisers to benefit the organization. She wants to make sure other children have the chance to live out their wishes, laugh, be happy and get to be normal kids.
Mary is one of a kind. She is courageous, compassionate, loving and optimistic. She lives with many life-threatening conditions, but she still believes there is much more to look forward to. Even more remarkable, she constantly points out that others are worse off than she is. In her words, “I am the lucky one. I only wish more people realized they can make a difference by their suffering. To be able to truly understand suffering makes that person able to assist others in a more meaningful way.” She is living life and has found meaning within her pain.
“Suffering is not necessarily bad. In fact, it can and should be looked at as a gift: we can use it to heal the world.”