Imagine living in a world where, day by day, your body becomes less your own. My mind remains sharp, my thoughts as vivid and alive as ever, but my ability to express those thoughts has been lost or severely compromised. That’s the experience of living with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
Now, add to that another layer: invisibility. Not the kind
you see in sci-fi movies, but emotional and social invisibility that slowly
creeps in as your body changes and people don’t know how to react. ALS is a
condition that gradually strips away your physical independence. Still, another,
more subtle loss comes with it—the feeling of being overlooked, misunderstood,
or even invisible in the eyes of society.
The Physical Decline and Social Isolation
ALS is often called “the disease that doesn’t sleep” because
it progresses day after day. At first, it may start with minor muscle weakness,
a stumble, or slurred speech. My symptoms began with my inability to hit the
rim while shooting free throws. But eventually, everyday tasks—eating, walking,
talking, breathing—become monumental hurdles. And as your physical capabilities
diminish, so does your visibility to the outside world. I, for one, am very
thankful for social media and the internet!
It’s easy to feel invisible when your condition becomes a
barrier to social interaction. Friends and even family might withdraw (my
family and friends have been incredibly loving and supportive of me and Carol),
or unsure how to communicate or relate to me anymore. I’ve found that using my
eye-gaze computer, people often lose patience with me because it takes me so
long to type my response and speak. I feel pressure to respond much faster, often
with shorter responses without the in-depth response I would have preferred.
Others might assume that because your body is weakening,
your mind must be too—leading to uncomfortable silences or conversations that
happen “around” you rather than “with” you. You become a silent observer of
your own life, trapped in a body that feels foreign.
Misconceptions and Misunderstandings
One of the greatest frustrations of living with ALS is how
little the public understands about the disease. For many, it remains an
abstract concept, only brought to the forefront during fleeting media moments
like the ALS Ice Bucket Challenge. But the daily realities—how ALS transforms
every aspect of life—are often hidden from view.
Many people assume that if someone with ALS can’t speak or
move, they must also lack awareness. This couldn’t be further from the truth.
For most, ALS doesn’t affect cognitive function, which means that while their
body is failing them, their mind remains intact. They think, they feel, they
want to engage—but the ability to do so on their own terms is limited, leading
to that crushing feeling of invisibility.
Coping with the Mental and Emotional Toll
There’s an emotional toll that comes with being physically
present but socially overlooked. Feelings of isolation, frustration, and
sadness are common, but there’s also resilience—an unspoken strength that many
people with ALS develop over time.
Finding ways to maintain a sense of visibility, agency, and
self-expression becomes crucial. Whether through technology—such as
speech-generating devices—or through art, writing, or other creative outlets,
many living with ALS strive to be heard in a world that may not always listen.
Support networks are also essential. While some friendships
may fall away, others deepen. ALS support groups, whether in person or online,
provide a vital community where people understand your challenges. It’s a space
where you’re not invisible but fully seen and heard.
Navigating a World That Isn’t Built for You
Accessibility remains one of the most significant barriers
for people living with ALS. The world is not designed for those who struggle
with mobility or communication. Simple things, like getting into a restaurant
or traveling (imagine me being lifted out of my wheelchair into my airplane
seat, now imagine traveling with a ventilator and all the backup equipment that
comes with it), can become significant challenges. This lack of accessibility
can further contribute to feeling sidelined or forgotten. Carol and I always
enjoyed traveling. Many places remain on our bucket list, but alas, they will
remain on our bucket list.
Advocacy for greater accessibility and inclusivity is vital.
Every ramp, voice-to-text tool, and adaptable device helps create a world where
people with ALS—and others living with disabilities—can feel more present and
less invisible.
The Power of Acknowledgment
Being visible doesn’t just mean being physically seen; it
means being genuinely acknowledged for who you are beyond your condition. Those
living with ALS are people with stories, dreams, fears, and ambitions, just
like anyone else. They want to be part of the conversation, part of society,
and not defined solely by their illness.
For those who don’t know how to engage with someone who has
ALS, the answer is simple: talk to them. Ask them about their day, their
thoughts, and their interests. Acknowledge them as a person, not just a
patient. Doing so, you help break down the walls of invisibility that ALS often
builds around them.
Conclusion: Strength in Visibility
Living with ALS is challenging enough without the added
burden of feeling invisible. By sharing stories, raising awareness, and
fostering meaningful connections, we can help people with ALS reclaim their
visibility and, in turn, their humanity.
Everyone deserves to feel seen, heard, and valued—no matter
their challenges. And for those living with ALS, that acknowledgment can be one
of the most potent gifts the world can offer.
Let’s work to create a more inclusive, compassionate world
where everyone, no matter their abilities, feels visible and valued.
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