The life expectancy of living with ALS is 2 to 3 years. As I celebrate my 6th anniversary since my diagnosis, I’m grateful for all the support from family and friends. I’m tremendously thankful for my caregivers (Bernadine, Erica, Alicia, Regina, and Michelle), who are very talented in what they do and have shown me their love by caring for me, for it is they who give us the ability to surge forward into year 7. My caregivers are truly a gift from God!
Living with ALS for six years has been a journey filled with
profound lessons. One of the most significant realizations is the importance of
cherishing every moment. ALS has taught me that life is unpredictable and that
every day is a gift. As I’ve said many times before, don’t take life for granted.
You can’t change yesterday, and tomorrow may never come. That’s why I am trying
to Make Today My Best Day Yet! I try to help others Make Today Your Best Day. This
perspective has helped me appreciate the small joys and find beauty in the
mundane.
My ALS journey has taught me the importance of faith and
trusting in God's plan, even in the face of adversity. It has also shown me the
power of community and the beauty of coming together in prayer and support. ALS
has taught me to rely on God's strength and grace to carry me through difficult
times and to be grateful for each day that I am given. It has deepened my faith
and shown me the true meaning of perseverance and hope in the face of hardship.
Living with ALS has been a challenging journey, but it has also been a path of
spiritual growth and transformation that has strengthened my relationship with
God and my understanding of His love.
How precious our time here on earth is, and how important it
is not to waste it working a job you hate, exercising, arguing, making enemies,
or harboring resentment. Tell those who matter in your life that you love them,
and do it often and liberally. I’m not just talking about family, either—your
friends, neighbors, and people who you just met.
Navigating life with ALS has been a journey marked by
profound challenges, unexpected lessons, and moments of quiet triumph. When I
first received the diagnosis, it felt like the ground had shifted beneath us (I
say “us” because an ALS diagnosis affects Carol as much as me). Words like
"progressive" and "incurable" loomed large, casting long
shadows over the life Carol and I had imagined. But as the years have unfolded,
I’ve discovered reservoirs of strength, resilience, and grace I never knew
existed.
Another lesson is the power of resilience. Facing the daily
challenges of ALS requires a strength I never knew I had. It's not just about
physical endurance but also mental and emotional fortitude. I've learned to
adapt, to find new ways to do things, and to keep pushing forward even when it
feels impossible. I realized I had to let go of control. ALS is a condition
that forces you to confront your limits. The small, taken-for-granted
freedoms—like brushing your hair or tying your shoes—can slip away. At first,
these losses felt like betrayals, as though my own body were turning against
me. But over time, I’ve learned to embrace a different kind of agency rooted in
acceptance and adaptation. It’s not about resigning to the disease but about
finding new ways to live within its parameters.
The value of support networks has become incredibly clear.
Family, friends, my caregivers, and even strangers have been my pillars of
strength. Their unwavering support and love have made the tough days bearable
and the good days even better. This experience has deepened my appreciation for
the people in my life and the connections we share. ALS can be isolating. Their
kindness has taught me that vulnerability is not a weakness; it’s an invitation
for connection. The moments when someone offers a helping hand, a listening
ear, or just their presence have shown me the boundless capacity for human
compassion. In these interactions, I’ve found strength and solace.
There is a term called compassion burnout, and It's a real
thing, unfortunately. It happens to Carol. I definitely can be very challenging
at times. She gets tired of taking care of me (not very often) and all that
goes with it: the constant worry, having caregivers in and out, the doctors,
and the equipment. Friends don’t come to visit as much.
Carol is a SAINT! She has taught me the true meaning of unconditional
love. She has given up so much to take care of me, like her career, traveling to
our favorite destinations, spending time at the lake, spending time with her
family, and her relationships with friends.
I’ve also discovered the importance of focusing on what
remains instead of what’s lost. John Wooden (the famous basketball coach for
UCLA) once said, “Focus on what you can do rather than focus on what you can’t
do.” While ALS has taken much, it hasn’t robbed me of my ability to love, to
think deeply, or to savor the beauty of the world around me. A sunset still
fills me with awe. The laughter of loved ones still lifts my spirit. These
moments, fleeting as they may be, have become my anchors. They remind me that
even amidst the most challenging battles, there is still joy to be found.
Another lesson I’ve learned is gratitude. Gratitude is a
powerful emotion that can bring immense joy and fulfillment into our lives.
When we take the time to appreciate the people, things, and experiences that
bring us happiness and joy, we can see the abundance surrounding us. Gratitude
allows us to shift our focus from what we lack to what we have, cultivating a
sense of contentment and peace. By expressing gratitude regularly, we can
enhance our relationships, improve our mental health, and attract more positivity
into our lives. So, let us take a moment each day to reflect on all that we are
grateful for and let that gratitude fill our hearts with warmth and
appreciation.
Patience has become both a necessity and a virtue. Tasks
that once took seconds can now take minutes or require assistance. While
frustrating at times, this slowing down has also brought unexpected clarity.
I’ve learned to notice the small details—the texture of a breeze, the rhythm of
rain against a window, the warmth of a hand in mine. In a world that often
rushes forward, this enforced stillness has its own quiet rewards.
Finally, I’ve come to understand the profound power of hope.
Hope doesn’t mean denying reality or clinging to false promises. For me, it’s
about believing life is still worth living, even with its pain and
unpredictability. It’s about cherishing the present and daring to dream of a
future where advancements in science and medicine might one day change the
narrative of ALS for others.
Six years into this journey, I am not the same person I was
at the beginning. ALS has reshaped my world in ways I could never have
anticipated. It has taken much, but it has also given me a deeper appreciation
for life’s fragility and its resilience. I’ve learned to measure my days not in
terms of what I’ve lost but by the love, connection, and meaning I’ve found
along the way. And for that, I am profoundly grateful.
#maketodayyourbestday #EndALS #FaithoverFear
