Chanel Hobbs: Living with ALS, In Her Own Words

Chanel Hobbs collage

Chanel Hobbs is a vibrant 54-year-old residing in Chester, Virginia, with her husband and high school sweetheart, Lamont. Together, with their daughters Angel, 24, and Deja, 23, they’ve cultivated a beautiful life filled with love and shared adventures, despite her ALS diagnosis. Determined to spread awareness of what it’s like to live with the disease, she is sharing her family’s personal journey in her own words.

By Chanel Hobbs

In the vibrant tapestry of 2007, my life flourished amid the excitement of raising two spirited daughters and the ascent of our careers. Life, it seemed, was in perfect harmony. Little did I know that devastation would soon echo, altering our lives forever.

It started subtly—the twitching in my legs and the occasional trip, an inconspicuous prelude to the storm that awaited. At first, I brushed it aside as the echoes of my high school nickname, Clumsy Smurf, returning to haunt me. Loafers replaced stilettos, a practical concession to my newfound propensity for tripping. Yet, the tripping and twitching continued.

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Chanel and Daughters

The tipping point arrived during an ordinary family stroll through our neighborhood. Spontaneously, we decided on a race—a lighthearted sprint that revealed the horror within. My daughters, aged 7 and 6 at the time, raced ahead, while I struggled, my legs seemingly betraying the commands of my mind.

Concerned, I sought answers from my primary doctor, who, in turn, guided me to a neurologist. The journey through tests, scans, and the companion of a leg brace led to an ominous referral to John Hopkins. In retrospect, it seemed the local neurologist suspected ALS but was reluctant to deliver the news. So, I pressed ahead.

Multiple visits, tests, and scans unfolded like chapters in a suspenseful novel, each page turned with a mix of anticipation and dread. One year since the odyssey began, on June 24, 2008, the moment crystallized. With tears in his eyes, my doctor uttered the unforgettable three words, casting a long shadow over the room— "You have ALS."

At 38, with a husband and young daughters, the gravity of the prognosis hung heavily in the air. How does one reconcile with the stark reality of having 2 to 5 years to live?

“The year-long journey to diagnosis was but a prelude to a much larger battle, and with unwavering determination, I chose defiance over surrender.”

In the intricate dance with ALS, the unwavering support of my family and friends transforms what could be an insurmountable journey into a conceivable reality. My existence now exists within the confines of complete paralysis, nourished by a feeding tube, my words finding expression through a speech device, and my very breath reliant on a ventilator. In this state, my reliance on others is absolute.

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Chanel

At the forefront of my support stands my husband, Lamont—an extraordinary man who defies the very essence of impossibility. While I often find myself adorned with accolades for navigating this challenging journey, I am acutely aware that the spotlight is often misplaced. Lamont, the unsung hero, is the force that propels what I do. He becomes my legs, my arms, and at times, my voice. With the grace of God as his guiding compass, he orchestrates the ritual of waking me every day, tending to my needs with meticulous care, and ensuring that I can live my best life.

His heroism extends beyond the boundaries of our home. Balancing the responsibilities of leading a church and managing his own real estate firm, Lamont's shoulders bear not only the weight of our personal journey but the broader tapestry of a dynamic life. In the grand narrative of my existence, he is the linchpin—the hero who breathes life into each moment.

“The unwavering support and love generously bestowed upon me by my family and friends serve as the catalyst that empowers me to face each new day with strength and resilience.”

Gratitude becomes my guiding light each day. Despite the external challenges that may seem insurmountable, I hold onto the knowledge that it could always be worse. During it all, I continue to embrace a full-time job, passionately advocate for those battling ALS, engage actively in my community, and, most significantly, remain an integral part of my family's lives.

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Family Celebrating Daughter's Graduation

I firmly believe that both those with ALS and those without can lead deeply fulfilling lives. Choosing to live has been my conscious decision—a commitment not to succumb to self-pity or the sympathy of others. My focus centers on my capabilities, not my limitations. Do I harbor toxic positivity? Absolutely not. I acknowledge the weight of ALS, and moments of sorrow and loss visit me often. When these emotions surface, I let them flow through me. Yet, I refuse to be tethered to despair. Instead, I make a deliberate effort to ask myself, "Now what?" Shifting my perspective, I look forward.

I recognize that my present circumstances don't dictate my fate. I commit to giving 100%, focusing on what I can do rather than what I can't. A logical thinker by nature, ALS has unlocked a new realm of creativity within me. I've discovered ways to savor life that align with my abilities.

“In the face of adversity, I pledge to keep rolling forward until the wheels literally fall off.”

I’m often asked what I would like people to know about ALS and what it’s like to live with this disease. I have to say, I feel people with ALS are often perceived as less than others. People tend to overlook us, focusing on the assistive equipment and physical limitations that accompany our condition. Pity is extended our way, but it's important to recognize that we are not diminished individuals. Despite the alterations in our physical abilities, our minds remain resilient. Rather than looking past us, see us for who we are. We are the same people as before.

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Chanel

And if you have questions about ALS, don't hesitate to ask. Many of us are eager to raise awareness about this condition. Our minds are strong, and we can provide valuable insights. When communicating with us, there's no need to raise your voice; we can hear perfectly well. Direct communication is appreciated—talk to us, not around us. People with ALS are not invisible; we are individuals just like you, we’re just living with ALS.

It’s been over 15 years since my diagnosis, and I continue to thrive in my full-time position at the State Corporation Commission in addition to my role at my husband’s church as the devoted first lady of our cherished community. Beyond the realms of my professional life, I find immense fulfillment in serving as an advocate for ALS, a cause close to my heart. My commitment extends even further into the realms of sisterhood as an active member of Delta Sigma Theta Incorporated, where I contribute to meaningful endeavors.

Embracing each day with zest, I am resolute in living life to the fullest—juggling roles, fostering connections, and hopefully leaving an inspirational mark on others around me.

Special thanks to Chanel and the Hobbs family for allowing us to share their personal journey with the ALS community. To learn more about how you can help and get involved in the fight against ALS, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog HERE.

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