“Hello,” I say as others busily walk past me, barely acknowledging me with their slight expressions of pity.  I sit in my wheelchair thankful that my neck muscles have yet to betray me, giving me the ability to have some dignity as I hold my head up.  Sometimes I want to scream with my outside voice, “I’m not contagious! I have ALS!” My mind can’t persuade my lips to smile and my voice refuses to acknowledge that it should make sounds.

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ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, is a nervous disease that weakens muscles and impacts one’s physical condition. The cause is unknown and a fight for a cure is underway.

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One day without warning, my speech became slurred and walking became awkward. I was not under the influence of alcohol nor had I endured a stroke. After being checked by a third physician, my final diagnosis was given at the VCU’s Neuromuscular and ALS Clinic.  My family was in attendance and their cries echoed in the room.  Life as I had always known it was over and I felt like God called me to be with Him on December 17, 2015.

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Within four months of my diagnosis, the 61-year-old woman I’d grown to be changed physically and drastically. I have survived giving birth, endured the death of loved ones, and managed to cope with stress, but still can’t understand my now child-like state.  However, I am grateful for my family and the support they provide. Kenny, my soulmate, upholds his marital vows, reassuring me of his love. Stacey, my oldest daughter takes on the motherly role.  Fran, my middle child, greets me with a bright smile and reminds me that I’m beautiful. Lashunda, my baby, lets me know that I’ll be alright. They delegate roles in hopes of helping me fight this disease.  I miss holding my girls; now, they hold me, reassuring me all will be okay. I hope that the bond our souls share have a telepathic ability to assure them of my love.

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Before my body forgot that we were a team, I could share love and laughter both physically and verbally.  I worked two jobs, cared for my sick mom, raised three daughters, and often sat on the pier fishing with my husband.  My life was free of illness, with the exception of small battles with allergies. However, I don’t do any of the things I love doing anymore, particularly fishing. Instead, I lay in the hospital bed in my home, which causes me to think a lot. ALS has left me with only the ability to remember what was and to understand what currently is, which oftentimes leaves me with a desire to be called home. I am a prisoner within my own body.

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For more information: www.alsa.org