Social Medicine

“A healthy social life is found only, when in the mirror of each soul the whole community finds its reflection, and when in the whole community the virtue of each one is living” ~Rudolf Steiner

Against the muted background of educational health television, a few issues of Neurology Now lay abandoned on unoccupied waiting room chairs.  This was appearance three of my summer medical evaluation tour — four bookings with different specialists in one week.  Scanning the neurologist’s waiting room (backstage) at the other members of this troupe of patients, I selected a seat across from a gentleman with a walker.  Parking ‘Rocky,’ my wheeled gym bag (a surrogate gait aid), I took a seat glancing at a smiling Jack Osbourne on the cover of one of the discarded Neurology Now magazines from the vacant chair beside me.

Smiling at the gentleman sitting across from me, we swapped our diagnostic stories with companionable understanding and nods, occasionally drifting to the normal details of our lives.  As we talked, others auditioning for an optimistic checkup report came filtering in.  A personable lady sat beside him, contributing to our conversation.  I gave them both a business card with my Stiff Person Syndrome (SPS) website and personal contact information.  Neither had heard of SPS.  A mother with her young adult daughter slid in, sitting beside me.  Conversation continued, covering several topics, accompanied with frequent laughter.  It seemed when the door to the examination rooms opened for the next name to be called, a reluctant hesitancy to leave hovered over our animated group.

Losing the gentleman with the walker and the personable lady to their respective appointments, an older couple came in, settling across from the mother, her daughter, and me.  The man walked with a cane while the woman slowly maneuvered a walker.  It was a toss-up who was the patient, maybe a combo?

As the lady began filling out a clipboard of information, her companion began adding his unique and humorous twist to our conversation.  At one point, the woman stopped writing and made mention of her husband who had died.  Feeling more like a familiar happy hour group at a local tavern than strangers in a neurology office, I asked (typical me) the question the mother and daughter were probably wondering … “How do you know one another?”  (They confirmed their curiosity when he replied.)

They are very good friends, neighbors.  She actively participated in our animated conversation after she completed her updated life history, returning the clipboard and papers to the receptionist with a shuffle, step.  Amazing lady — fun, inspiring, and speaks her mind.  She was the patient being evaluated, diagnosed with MS just before her 19th birthday … 50 years earlier!  Neurological hope personified, she touched me!

I had questions on how she managed MS for so many years — the mother of four children!  She shared she always did as much as she could — always.  During her down times, or in bed days, when people call to come over and see how she is doing, her response is… “If you are calling to bring food, a drink, or help with housework, you are welcome.  If you are coming to hover, stay home.”  I laughed so hard; I loved it!

My time in the waiting room was two hours, but it passed so quickly.  I had a wonderful time.  For just a few moments that day, we were a tight-knit community of fast friends, people, not physically challenged patients … mirrors reflecting the virtue of each one as living.

An unexpected surprise…  Connie, the first lady I had given a card to at the beginning of waiting room happy hour, emailed me.  She read my website and blog, making my day with compliments and words of encouragement.  We have plans to meet for milkshakes.

Social medicine.

A Special Lunch

“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.


A Month Of Memories

June 24, 2011

“Life gives us brief moments with another…but sometimes in those brief moment we get memories that last a life time…” ~Unknown

I made it! My first solo road trip to surprise Mom for Mother’s Day. May, 2011 – a month of memories.

Hanging out at Mom’s for a couple of weeks, we talked, watched Dancing With The Stars, talked, shopped, ate out, talked, lounged, took walks, worked in Mom’s doctor appointments…and talked–serious conversations, vents, reminiscing, woman-to-woman sharing, & laughing.

Not restrained by time, we went on an impromptu road trip. Driving at whim, we stopped frequently, enjoyed the scenery, traveled through the Blue Ridge Mountains, visited family, had moments of companionable silence, lost in thought to the hum of tires on the freeway and an occasional CD. Without an itinerary, we shared a motel room at different stops as desired.

Typical women, we both over-packed clothing, but with our conjoined medical supplies/medications/equipment, I thought a white pharmaceutical delivery van would have been a more suitable mode of transportation. Each stop required getting a luggage carrier to load with an oxygen machine, diabetic supplies, our individual rolling totes with prescriptions, a breathalyzer machine, cooler with insulin, along with a change of clothes and pajamas–Just to haul it all out and repack the car the next day.

Without jumping on the beds, we had slumber parties in the motel rooms. I resorted to little girl mode, crawling into bed with Mom one morning to snuggle. The continental breakfasts! We stuffed ourselves on eggs, biscuits and gravy, pastries, and juice out of nutritional guilt.

We enjoyed more shopping, eating out, sharing dessert, (Bob Evan’s strawberry pie!), lounging in pajamas until noon with coffee and more talking, movies, mother/daughter pedicures, Memorial Day at the ocean, and a boat ride.

Mom has a fear of water. She would have learned how to swim if getting in the pool wasn’t a necessity. “I am taking you for a boat ride, ” I informed her with my childlike orneriness and anticipation.

“On the water?” she responded in dismay.

I had to laugh. “No, Mom. I am going to take you to the mall and see what a quarter will buy. I will wave as you go around.” After I had my fun, I promised her she would enjoy it.

An afternoon meandering at the Jacksonville Landing, a lunch of chicken wings and another dessert, we took the water taxi. Mom really enjoyed it. I enjoyed her.

We had an amazing month of being two girls on an “Excellent Adventure.” When I started my solo drive, it was with the intention of spending a quality and quantity of time with Mom, just the two of us. Living the experience was better than imagining it.

Until next time…I have been hearing about a zip line over a pool of alligators?

Make memories with those you love, don’t miss the boat.

Copyright © 2011