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

Risk To Bloom

“And the day came when the risk to remain tight in the bud was more painful than the risk it took to blossom.” ~Annais Nin

Viciously gutted from my life was physical ability, independence, my identity and sense of worth with the diagnosis of Stiff Person Syndrome. Guilt consumed me at the burden I believed I had become. Damaged. I further erroded my worth by living to please, ‘earning’ undeserved love. This misguided self-perception was reinforced by relevant others.

Years passed. In the darkness of my silent apathy, a spark of Debbie ignited a few smoldering embers of forgotten self. I mattered. I have feelings. I have a life. Sharing an address is not sharing a life. I reclaimed me from imposed indebtedness. I took the risk to bloom.

I still live as a physical hostage to SPS, but there is such an inner freedom to live as Debbie, ‘keeping it real.’

Not quite on my own.

“Nevertheless I am continually with You; You have taken hold of my right hand.” ~Psalms 73:23

“The time will come when, with elation, you will greet yourself arriving at your own door, in your own mirror, and each will smile at the other’s welcome and say, sit here. Eat. You will love again the stranger who was yourself. Give wine, Give bread. Give back your heart to itself, to the stranger who has loved you all your life. Whom you ignored for another, who knows you by heart.”

Copyright © 2012

I Have A Name – Debbie

December 21, 2011

“You were born an original. Don’t die a copy.” ~John Mason

Some may call it a midlife crisis when you reach 50 and begin redefining your life for your encore. My life crisis came at 36 with a chronic life-altering diagnosis, life sentence, of Stiff Person Syndrome.

With that diagnosis, I lost my life, identity, and future to be tossed on the self-deprecating heap of “disabled” humanity. My beloved role of mother became more than a facet of me, but my reason for living. As a wife, I devalued myself as being “indebted,” a worthless burden, losing self-respect, love of self, sense of me–rebounding into a familiar comfort role.

Finding purpose in my affliction, I immersed myself into an outreach of hope and encouragement to others. Commendable, but I was drowning in my diagnosis, ICD-9 code 333.91. My name was secondary to various aliases, i.e. chart numbers, in several states under several specialists.

I had ceased to dream for my future, focusing on making the dreams of others a reality. As the body dies without nourishment, so the spirit will die without vision. In moments of self awareness in a double dip depression, I immerged from the engulfing depths to gasp breaths of me–Debbie: a person, a woman, an individual. My midlife awakening.

A favorite quotation of mine is from Eleanor Roosevelt, “No one can make you feel inferior without your permission.” I became angry with me for allowing my life, me, to become irrelevant second to the needs of others, living to please, unfaithful to myself. A revelation: The cost of ‘presumed’ security was too high.

I had willingly laid my life on a sacrificial altar. By choice I reclaimed my life. I had companions: consuming fear, no plan, unresolved pain, & my health issues. I also had my faith, determination, and prayer.

I spent a year of gut-wrenching resolution, still work on issues. I do live with a loaded gun at my head. SPS has an itchy trigger finger.

I lived so many years within my roles and as a career patient, I had (am) learning who Debbie is. Painful, exhilarating, uncertain, exciting–I am reacquainting myself with me, liking who I am and the person I am becoming. I have a name–Debbie.

I have a song–my life. I am the only one who can sing it. I have dreams, yet to be disclosed goals. A promising future entices with the fears of my reality but life is lived forward…”in spite of.”

Copyright © 2011

A song that resonates.

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I Got A Name