Twenty years ago, a stealthy invader entered my life. Gradually, he stole my health and my sense of well-being, sending me on a four-year medical quest for answers while I was sucked into the blackness of escalating mobility loss, pain, and consuming fear. I was losing life as I knew it and me.
1989. I was 32, single, had a fantastic job, nice home, and my two beautiful children, my life. My future shone with promise. Running was a passion. I resumed the sport. Troubled, I noticed a vague pulling and loss of physical rhythm, but shrugged it off as getting older...a convenient excuse for a dull lower back ache. As my back pain worsened, I started seeking medical input. A woman's woes are usually explained (in a hushed tone) as 'female problems.' An ovarian cancer guess was a week of unnecessary hellish panic.
Walking became laborious. A feeling of 'hardening cement' made steps cumbersome, heavy...a shuffling. My back pulled in painful resistance as I started to develop a slight lordosis. Chiropractic adjustments were suggested by friends. These sessions worsened my condition. I would leave clinging to the walls for support. I sought orthopedic physicians for answers. A stress fracture was one wrong guess. One enthusiastic surgeon suggested I had a birth defect and wanted to insert a steel rod into my back. My gut said, "No."
Passive physical therapy, moist heat and electrical stimulation, resulted in the same barely-could-walk, wall-hugging mode as the chiropractic manipulations. Always a fearless monkey, an unexplained sense of unease started to surface at the top of stairs, walking in snow or wet pavement, rendering me completely rigid and immobile. I questioned my sanity. Sacrificing running to walking, my laborious shuffle turned into an electrifying jolt through my entire body during one walk. With heart-pounding terror, I clung to a stop sign as I tried to compose myself.
Always surefooted, I started having some unexplained falls…quick, unpredictable, and resulting in injury. My last day of work was an escalation of intense anxiety, rigidity, and an inability to walk in the open. I had another full-body jolt earlier that day. In tears, I had my friend walk me to my car. I crept around walls to collapse in a chair. My heart knew something very bad was wrong. I was a newlywed with one child still very young. I feared for my family.
I was referred to a reputable orthopedic doctor affiliated with a large hospital. All my tests were normal, even my reflexes. My lordosis had greatly worsened and was troubling to see on the x-ray as there wasn't an obvious reason. Stumped, the orthopedic doctor had a colleague look at me. She ordered a blood test to check for rare illnesses, but it came back normal. By this time, I could not walk across a room. I knew they were thinking, "psychotic." I went to a neurologist who couldn't diagnose me.
Disgusted with my months-long absence from work, I was ordered to see a doctor of my employer's choosing. In examining me, he threw his clipboard onto the exam table and verified me by saying, "This is ridiculous. You have something wrong with you and I do not know what it is." I was referred to a teaching hospital. In September of 1994, I received my diagnosis. Stiffman Syndrome now referred to Stiff Person Syndrome.
Through the initial trial and error of fine-tuning prescription medications and IVIg therapy, time has brought me to a place of reasonable stability, a quality of life. Looking back on the 15 years since my diagnosis, living with some disabling limitations of SPS, a lot of mental energy goes into coping. I needed to learn my value is who I am, not what I do. I own my mindset. Attitude is a choice. Humor, patience, determination, and faith help me live a quality of life. Accomplishment is trying.
Love showed me the way to parent. My youngest is now a productive, grown adult. My marriage ended. People evolve and life is lived forward. I have, and am, discovering untapped resources within me. Learning about SPS makes me an informed patient, a partner with my neurologist in my healthcare. I have met some amazing individuals in this walk. Heroes who encourage me by example. My new husband has SPS too. Our life is an awareness of reality, but joy in the day.
SPS still has its moments with me, a brutal wringing of my body, fearful doubting in my heart. But the good days. Life is still worth living..."in spite of."
May today gift you with one memory worth reliving, one thing to bring a smile, the chance to share love, and the wisdom to recognize opportunity.