For the first year and a half of my life, I was the sole recipient of my mom’s and dad’s affection and adoration. From the day my brother joined our family, I was disheartened to find I would have to compete for my parents’ attention. When I turned 4 years old, I decided our family had one too many siblings. I began to plot ways to get rid of the little annoyance.
A year and a half older than her brother, Brenda E. Smith has seen her relationship evolve from sibling rivalry to affection to an irreplaceable bond. Photo courtesy Brenda E. Smith
Once, I made him sit on the lane divider line in the middle of the street in front of our house. I told him not to move. Back then there were few cars in our small town. After 20 minutes of peeking from my hiding spot, I watched a grandmotherly lady stop her car, pick him up and carry him to the front door of our house. Mom scooped him into her arms, mortified by my terrible prank.
I got in big trouble from this failed plot. Eventually, I discovered many advantages to having a brother. We grew close and shared many great childhood adventures.
Twelve years ago, at age 53, he was stricken with a mysterious condition. Agonizingly painful spasms wracked his leg muscles. Doctors and specialists tested him for all kinds of devastating diseases. Every test result came back negative, yet the pain in both his legs worsened. After seven years, he was finally diagnosed with stiff-person syndrome, a progressive and incurable autoimmune condition so rare that only 1 in 1.2 million people is known to suffer with this condition.
A huge dose of a strong muscle relaxant provided him some relief. I was truly worried about him. I searched the internet, but information about SPS was quite sparse.
Unexpectedly, three years ago, I began to experience spasms and pain in my own legs. My symptoms correlated closely with those of SPS, but there was no known genetic component involved with the condition. After a year of extensive lab work and three MRIs to rule out more common ailments, my doctor finally relented and ordered the costly diagnostic test for SPS.
The result came back two weeks later. It was positive for SPS. My first call was to my brother. His experience and advice prepared me for how my life would change: no more golfing, pickleball or long walks on the beach; more painful invasive testing and expensive monthly immunoglobulin infusions for the rest of my life.
It brings us both tremendous comfort knowing we have each other to compare notes with about the physical and psychological challenges of living with SPS. We check in with each other frequently and share results of our doctors’ follow-ups. Our brother-sister bond is even more intensely felt because we share this rare medical condition. What began as a typical case of sibling rivalry 65 years ago has matured into a relationship rich with mutual respect, admiration and love. We are truly one in a million siblings, there for each other until the end.
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