“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
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