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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.

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Touch Me

“A woman’s heart is a deep ocean of secrets.” ~Gloria Stuart

“I am middle-aged, chronically-ill, and disabled.  I am also a woman, with a woman’s heart.  I would like to share a short poem I wrote a few years ago.  First love? Lost love? Current love? Future love?  A combination of all? …an ocean of deep secrets.

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Touch Me

Touch my mind.
Share my thoughts.
Enter my dreams.
Know me.

Touch my soul.
Share my essence.
Enter my being.
Understand me.

Touch my heart.
Share my offering.
Enter my life.
Love me.

Take my breath.
Touch me.

Copyright © Debra A. Richardson

Introducing Myself?

“Do you think I could buy back my introduction to you?” ~Groucho Marx

“This above all; to thine own self be true.” ~William Shakespeare

Sitting at a luncheon table with a new group from church, I was asked, “What do you do?” (Try to stay upright, appear normal, and support the medical community?) In a brief moment of panic I replied, “I have a back problem and am retired.” The sometimes misused “bad back” immediately gives a questionable first impression. My answer was not a topic of substance to build a conversation and was dismissed.

During the last two years, I get out more, mingle with the socially-accepted well or healthy. For years my social circle was limited to a few close friends, family, church, and the SPS community. I did not need an introduction involving SPS. Angry at myself at my lame response, I went home and wondered how do I introduce myself in various social situations?

It is difficult to live with the 24/7 consumption of my physical boundaries dependent on managing my medication, sugar levels, and ability for the day. The rarity of Stiff Person Syndrome is challenging to explain to those close to me, but to a newly introduced individual, it is an uncomfortable struggle possibly leading to an undesired first impression. There is so much more to me than being a career patient. I dislike conversation to be dominated about SPS but it is a part of my life.

Because of having SPS, I became an advocate, web mistress, and first-time published author. I have met so many amazing people and participated in a research study. To deny having SPS is to deny the wonderful people in my life and the accomplishments of my life with the syndrome. To deny SPS is to deny what God has done with my life. SPS is not my identity, but it is a major controlling factor in my life.

My friend wondered at my lame response. Troubled, I called to discuss it over the phone after lunch. I received some great feedback. For a casual one-time encounter if I ask assistance to walk across the parking lot, “I have back issues that compromise my balance,” is simple and easily understood.

With individuals I will develop some sort of social network over time, I will succinctly say, “I was diagnosed with a rare neurological disorder in 1994,” followed by a brief synopsis if asked which disorder. If the individual is interested and questions further, I can give them one of my business cards that has my website with an explanation of Stiff Person Syndrome with some of my personal experiences in a journal.

Conversation will not be dominated by SPS, giving me the freedom to discuss my many interests and to focus on others.

I am normal in a subterranean sense. I live underground with the physically-challenged and chronically-ill, the unseen. Planned respites give me a few moments topside where I am a “poser,” blending in with the normal. Both levels bless my life.

SPS – “one in a million”…me. I gotta be me–all of me. (Keeping it real.) Let me introduce myself.

“I’ve always tried to stay true to my authentic self.” ~Katie Couric

Copyright © 2012

Mistaken For Normal

“Nobody realizes that some people expend tremendous energy merely to be normal.” ~Albert Camus

My patient files are two inches thick–at three different physicians’ offices. I am a medical enigma, even to myself. Daily juggling medication times, carb-counting, blood checks, and physical ability vs. energy output, my life is anything but normal. Sweet uncomplicated “normalcy” is my heart’s desire. Utilizing ingenuity, medication peaks, and my natural gift of gab, I create a David Copperfield, Vegas finale illusion of social normalcy–showtime!

I did not realize how convincing I am until a phone conversation with a girlfriend this week who is a nurse. (She is aware of my medical conditions.) We were discussing an upcoming activity that my instinct wasn’t comfortable with personally participating. Finally I explained the physical and mental energy this activity would require from me that particular evening.

With surprise and sincere understanding, she apologized. “I forgot about your illness. I did not think.” She literally made my day. Having spent time with me, she actually sees me as Debbie, a person, not my diagnosis. Normal!

I wonder if Caesar’s Palace will schedule a booking for me–headliner. Forget being an opening act, I went pro.

Copyright © 2011

An SPS Superman

August 9, 2010


“I’m not a prophet or a stone aged man, just a mortal with potential of a superman. I’m living on.” ~David Bowie

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Cloaked beneath my red cape of medication peaks, I am confused as a superhero wearing my practiced smile of hiding pain while mentally devising continual strategies to circumvent triggers. Superman…courageous, strong, fighting the relentless onslaught of syndrome symptoms.

In recognizing only my strength, my fragile vulnerability is often overlooked by those who admire the perceived superman within me. Misunderstood, the seriousness of my SPS is often trivialized or dramatically emphasized. SPS becomes the entire focus of me. A rare oddity, I have been treated with condescension, pity, scrutiny, curiosity, and sometimes cruelty.

I am not a hero nor a victim, but a woman. Perseverance and hope are the only options to emotional death. I dream. I feel. And alone, I cry. It’s not easy to be me.

Copyright © 2010