“To know someone here or there with whom you can feel there is understanding in spite of distances or thoughts expressed. That can make life a garden.” ~Goethe
An extremely rare diagnosis of Stiff Person Syndrome (SPS) also comes with loneliness and isolation . . . a never-ending need to explain with only a glimmer of hope for understanding. My first communication with another person with SPS was via an Internet support group in 2000, six years after my diagnosis. Euphoria filled the empty void in my life to have an outlet of mutual understanding. In the following years, I have personally met 24 or 25 individuals with SPS. While the Internet can be a wonderful communication tool, I still prefer “real life” to virtual.
Jennifer Trednick & I met on Rare Disease Day as participants for the awareness event in our area. It was coincidence that we both have Stiff Person Syndrome. Jennifer told me about Kathi Rose, another lady with SPS, suggesting we all meet for lunch. After some email tag and schedule shuffling, we had a date, place, and time. Jennifer, Kathi, and I met a few weeks ago — lunch at an upscale Italian restaurant, located in an Emerald City shopping center. Instant rapport. Both ladies are intelligent, optimistic, fun, and full of life. We share the desire to live forward, know the ugly realities, but embrace the possibility of each day.
Over lunch, we shared diagnostic stories, similar symptoms, differing symptoms, physicians, movement issues, off days, good days, and strategies. Considering the gravity of SPS topics, our animated conversation could have been on the latest fashions, shoe sale, or hair salons to onlooking patrons. Dialogue was void of self-pity, negativity, or victimization. Talking with two women who genuinely understood was liberating, validating, and cathartic for me . . . a good time!
In sharing medications, Jennifer pulled out a sheet of paper to take notes on a certain med — similar to scribbling down the ingredients of a recipe — this one for a batch of unhindered movement. We shared thoughts on coping. Physically, we all jump through medication hoops and push personal limits, but yield to the flashing SPS stop sign. Though emotionally painful, cutting toxic people and situations are necessary for health. Limited ability is on a timer. Drama, if a choice, gets taken to the curb. Laughter, positive people, goals, and “doing” are as necessary as medication.
We learned the general personal details of one another’s lives while validating and learning from each other about the cruel syndrome we share — “the tie that binds.” (Figuratively and literally.) Shared female laughter and girl-talk made a few appearances into our lunch talk.
Jennifer and I are both insulin-dependent diabetics with insulin pumps. If I remember correctly, Kathi is borderline. Diabetes was another topic of conversation. Sharing included a show-and-tell of one another’s rigid back.
We had our picture taken outside of the restaurant, normal-looking ladies having lunch. I greatly enjoyed meeting Jennifer and Kathy, two amazing ladies. When our busy lives align, we hope to get together again. It was a special lunch.