Forty-five-year-old woman with lipomyelomeningocele, neurogenic bladder requiring clean intermittent catheterization, neurogenic bowel status post appendicocecostomy, tethered cord syndrome with detethering complicated by meningitis, Arnold Chiari malformation type 2, multiple orthopedic procedures, and lower extremity weakness.
That is my medical record. I have had 11 surgeries. I require catheterization and medication to maintain renal integrity. Nightly, I flush the appendicocecostomy. Despite this, I have a fragile grasp on continence, exacerbated by any change to my routine. I became pregnant once with an early miscarriage, precipitating uterine prolapse. Further pregnancies were discouraged as any loss of pelvic integrity jeopardized my continence. We adopted a beautiful girl. I exercise and stretch daily and attend physiotherapy weekly. Without this, climbing stairs is challenging. Recently, my hands have become weaker. The etiology is unclear but is attributed to recurrent tethered cord. There is no evidence for treatment. Unsurprisingly, my medical record misses features that truly define me: physician, wife, mother, sister, daughter, mentor, and friend. Without my medical record, most would not recognize the challenges; the scars are well hidden and my medical regimen is tightly controlled. However, the effort to appear “normal” is exhausting and isolating.
Church PT. A Personal Perspective on Disability: Between the Words. JAMA Pediatr. 2017;171(10):939. doi:10.1001/jamapediatrics.2017.2242
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