Neuromuscular Disorders

In Memory of Connie

Connie sits quietly in her chair.

She smiles and speaks but

Words are hard to share.

She neither reads nor writes

And her movements are spare,

For her body will not permit her

To move from that chair.

Although fettered with chains unseen,

Her nature is sweet and countenance serene.

Her destiny set from the day

She was born,

Physical freedom from her was torn.

A mind that is eager but trapped within,

What creations dwell therein?

Connie was my cousin.  During the forty-nine years of her life, she lived with the debilitating effects of severe cerebral palsy.  She possessed no function of her limbs.  She could not move her legs and any movement in her arms came in the form of uncontrolled spasms.  Though her body was extremely handicapped, her mind was more than capable.  Through oral instruction and testing, it was discovered that she had a high degree of intelligence.  Her vocal cords were harshly affected, but she worked hard to communicate her thoughts and carry on a conversation with those around her.  Intellect…with all of its awareness, desire, curiosity, and creativity was trapped within a body that would not let it perform.  For me, to dwell upon the “thought” of being so incapacitated is suffocating.  Connie had to live with its reality.

Amyotrophic Lateral Sclerosis (ALS - Lou Gehrig’s disease),  Muscular Dystrophy, Multiple Sclerosis, and Cerebral Palsy.  These are diseases and conditions that rob people of their motor skills, their independence, quality of life, and sometimes their very life.    I have known and loved people, family and friends, whom have suffered the symptoms of the above mentioned neuromuscular disorders.  It is impossible for me to comprehend their struggles and I pray that I will never be faced with that revelation.  I also pray that medical research will some day find a cure for these diseases. Connie left this world in the year 2006.  Her spirit is free and I like to think that she is dancing joyously in heaven, in the presence of  the Great “I AM“.

LS Montgomery

December 15, 2010