amyotrophic lateral sclerosis: a story
MC visiting Supreme Court of the United States
An impressive woman was wheeled into a Grand Hall at the U.S. Capital in May of 2018. The wheels squeaking along, the squeaks blasting out in stereo in the otherwise silent hall. She was there to speak about her progressive journey battling amyotrophic lateral sclerosis, otherwise known as ALS, Lou Gehrig Disease, or Motor Neuron Disease.
Her voice wavered, battered from the effects of the disease, while she spoke. Her brother was on hand to help interpret when speaking proved too challenging and yet this woman still commanded the room. All the staffers, members of Congress and other visitors in our Nation’s Capital stopped to capture more of what she had to say.
She was there on behalf of the ALS Greater New York Chapter to give a voice and represent the many people around the country and world who too, suffer from ALS. Who was this woman before ALS became her?
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In 1963, MC (as she preferred to be identified) was born to two hard working Mexican-born citizens who moved to the United States to settle down and build a family. Being the first born of many children, MC took on a caregiver role to her parent’s ever-growing family (as it was somewhat customary in Latin cultures for the first female born child). It became her duty to set an example that the younger siblings could resemble.
MC visiting Naples, Italy
An avid singer and lover of nature, MC sang with her choir on her time off and worked as a State Park ranger all the while guiding and helping mold her younger siblings each into incredible people. With dreams of traveling all over the world she enjoyed experiencing new places and cultures and was able to visit many exciting sites. With a bucket list of visiting many more places, it all came to a screeching halt the Fall of 2016.
At first, she noticed issues with her speech. Some instability in her movements. There was a twitch here and twinge there and only after the nuances picked up steam did she go for a series of medical exams to rule out what could be happening to her. When she got the most debilitating of news that her symptoms were caused by ALS, a family gathering was ordered so she could share the news to all her siblings at once.
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Back at the U.S. Capital, MC’s voice, once a booming classical singer’s voice, struggled to get each word out. Her mind raced with all the things she wanted to say, but she was quickly losing the energy to say them as the nerves in her body stopped effectively telling her muscles what to do. She struggled to speak and yet her continued efforts to try was the force to reckon with. She commanded the attention because everyone there knew she needed to be heard.
MC at an Art Gallery
ALS robs the individual of their livelihood as they know it. Sometimes it’s a slow progression, oftentimes it’s faster. Connie was officially diagnosed in September 2016 and by May 2018 she was confined to a wheelchair and unable to communicate the way she had done so for all her life.
ALS continued to consume her body and soul. Everything she did was to stall and slow the progression down. She was open to trying out any forms of treatment and entered all the clinical trials available to patients with ALS. Eventually, she progressed out of the clinical trial parameters as her symptoms had progressed past the eligibility requirements.
It's been years since that day in 2018 when she commanded the Grand Hall. However impactful it was for her to speak up that day it was an uncharacteristic behavior of her wallflower tendencies to speak in front of a crowd. And yet she recognized a moment in which she needed to speak up. So she did. She spoke up on behalf of all those struggling the same debilitating disease as her. She spoke up to give power in her voice while losing her ability to speak. She spoke up because however difficult it was she could still speak and use her voice.
We lost MC to ALS in January 2021 and while we will always continue to miss her every day, she taught us, that day, what it means to speak up and be the voice of others. And for that and so much more, we will always be grateful for her strength.
If you are not familiar with Amyotrophic lateral sclerosis (ALS), it is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It affects the individual’s nerves and muscles impacting the person’s ability to speak, swallow, breathe, and walk. If you want to donate on behalf of MC or just anyone with ALS, please go to the ALS Golden West Chapter, ALS Greater New York Chapter, or any of the chapters in the country to help out in any way. Let’s help accelerate the search for effective treatments so we don’t lose more MCs too soon.