In a world often clouded by chaos, a beacon of selflessness and compassion shines—the ALS caregiver (aka Bernadine, Alicia, Erica, Regina, and Michelle). These remarkable individuals embody the essence of love, sacrifice, and unwavering support as they navigate the challenging journey alongside those living with Amyotrophic Lateral Sclerosis (ALS). Reflecting on their tireless efforts, it's time to illuminate their profound impact on my life and express my heartfelt gratitude.
ALS, often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disorder that robs individuals of their ability to control muscle movement, eventually leading to paralysis. In the face of such a relentless adversary, caregivers stand as pillars of strength, providing physical assistance, emotional solace, and companionship.
Every day, these ladies demonstrate extraordinary resilience and empathy, tirelessly tending to the needs of their patients with grace and dignity. From helping with daily tasks like eating, bathing, and dressing to offering unwavering emotional support during moments of despair, their dedication knows no bounds. They become advocates, confidants, and cheerleaders, walking hand in hand with those LIVING with ALS through every triumph and setback. Their unwavering strength is not just admirable; it's inspiring. They aren’t just caregivers; they are family to Carol and me.
But their role extends beyond mere caregiving; it encompasses the essence of unconditional love. They witness the gradual loss of independence and the physical toll the disease exacts, yet they remain steadfast in their commitment, offering comfort and reassurance in the face of uncertainty. Their selflessness is a beacon of hope, illuminating the darkest days with love and compassion.
The journey of an ALS caregiver is not without its challenges. It demands immense strength, patience, and sacrifice. The emotional toll can be overwhelming, yet they persevere, often putting their needs aside to prioritize my well-being. They adapt to ever-changing circumstances, embracing each day with courage and resilience.
As I express my gratitude to these women, I must also recognize the importance of the support networks and resources that enable them to fulfill their vital roles. Whether through respite care, counseling services, or community support groups, these resources provide invaluable assistance to caregivers, helping to alleviate some of the burdens they bear and reinforcing the importance of community in caregiving.
In honoring Bernadine, Alicia, Erica, Regina, and Michelle, I honor the very essence of humanity—the capacity for selflessness, empathy, and love. Their unwavering dedication is a testament to the power of compassion and the resilience of the human spirit. Bernadine, Alicia, Erica, Regina, and Michelle, I extend my deepest gratitude for your profound impact on my life and Carol’s, those you care for, and the world at large.
In the tapestry of life, these ladies have threads of love, compassion, and hope, illuminating the path for others to follow. May I never cease to recognize and appreciate their invaluable contributions, and may their tireless efforts be met with the gratitude and support they so richly deserve.
From the bottom of my heart, Thank you, Thank you, Thank you to Bernadine, Alicia, Erica, Regina, and Michelle!!!
Faith is a powerful force that gives us strength and hope in moments of doubt and uncertainty. The belief in something greater than us, a higher power, guides and protects us. Whether it is faith in a religious deity, a spiritual connection, or simply in the goodness of humanity, faith can provide comfort and reassurance in times of need. It is a deeply personal and profound experience that can help us navigate life's challenges with grace and resilience. In a world filled with skepticism and cynicism, faith offers a beacon of light and inspiration for those who choose to embrace it.
Since my ALS diagnosis, my life has changed in more ways than I could have ever imagined. While there have been many challenges and uncertainties that come with living with a terminal illness, my faith has only grown stronger through it all. I have found comfort and peace in my relationship with Jesus and have become a devoted follower of him. My faith has been my rock through the toughest of times, and I am grateful for the support and strength that it has provided me with. Though my journey with ALS has been difficult, my faith has given me hope and a sense of purpose that has been genuinely life-changing. I know that with Jesus by my side, I can face whatever lies ahead with courage and grace.
Merriam-Webster defines faith as the belief and trust in and loyalty to God. I have always had faith, but did I really TRUST God? I grew up in the church (specifically, the United Methodist Church). I sang in the youth choir. I attended MYF (Methodist Youth Fellowship). I even went on the MYF’s trips to the Appalachian Trail in Georgia and rode over 500 miles throughout Europe with a Christian group called Spinning Spokes. We rode through parts of Luxembourg, Germany, Belgium, Netherlands, and France. Imagine a bunch of 15-year-old knuckleheads rolling throughout Europe!
But, when I went to college and started my career, I drifted away from the church and lost my moral compass. I was too busy chasing success to attend church. I was too busy chasing things that didn’t matter in the long run.
I recently read a devotion by the late Dr. Charles Stanley of Intouch Ministries. It said, “What keeps us from sitting at God’s table and rejoicing in the story of God’s faithfulness in our life? Three obstacles come to mind: striving, discontentment, and deception. Striving is the internalized sense that we must always keep moving forward in pursuit of success, money, and acclaim. We think, More is always better, and rest is for the weak. This inability to slow down and appreciate God’s gifts breeds a profound sense of unfulfillment, making joy and peace elusive. The world’s competitive striving and restless dissatisfaction are fueled by the enemy’s most ancient and insidious deception: My way is better than God’s way”. I was always searching for success but didn’t find any, leading to a sense of unfulfillment. I lost God’s way!
When we got married, we tried several churches but found their messages too political. I want to go to a church that has uplifting messages and helps me follow Jesus—not to be told what I can or can’t do! But Jesus kept working on me!
Fast forward to 2019, when I was diagnosed with ALS, I was missing something in my life: a moral compass. But Jesus kept working on me! When our neighbors, Brent and Amy McSpadden, invited us to sit with them at Northpoint Community Church, I wasn’t sure; it was such a BIG church! But Jesus kept working on me! We said “yes” and found Andy Stanley’s messages uplifting and inspiring (without hinting at politics). He encourages us to follow Jesus every day. I wasn’t ready to commit my life to Jesus, but Jesus kept working on me.
On August 29, 2021, I recommitted my life to Jesus and was baptized by my good friend Bill Willits (whom I’ve known since we grew up in the same church in Palm Beach Gardens, FL) at Northpoint Community Church. Jesus has been working on me since then. I’m so grateful to Brent and Amy for their invitation. God puts people in place at just the right time and place! It was another God wink!
I read a book where James 1 verses 2-3 quoted, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” I am currently facing a trial LIVING with ALS. Without God in my life, I couldn’t handle the perseverance I’m facing. But with God, I can handle anything. I am not trying to fight ALS. I am not in a battle, nor am I angry with ALS. I choose to live with ALS. I have a lot to live for, which keeps me going positively.
I often think back to that day in January 2019 when I heard, “I’m sorry, but you have ALS.” Was God punishing me for my past sins (believe me when I say that there were some whoppers)? I don’t think that is the case because I asked God for forgiveness for my past sins. And I believe that God is a forgiving God. Or was God putting me through this ALS trial to get my attention? Because I was going down a path that was a dead end. Or did God have a bigger purpose and plan for me? I think God was trying to get my attention because God had a bigger purpose for me.
I know that God has a plan for me. I believe there is a purpose that God wants me to serve. I believe the purpose is to share how important today is and try to make a difference in this world. Make today your best day.
When facing a terminal disease, there comes clarity on how important each day is. You cannot change yesterday, and tomorrow is not guaranteed. So, each day is a blessing. I did not understand that when I was caught up in trying to find success and busy with things that didn’t matter in the long run. I have realized how much joy there is in positively impacting someone or something each day. Therefore, I try to make each day my best day yet. My best days are when I can make a difference in someone’s life. As I said earlier, I believe that is the purpose God wants me to serve. I want to share my message with everyone I can reach. Make today your best day yet!
Make Today Your Best Day by serving others is a powerful reminder that selflessness and generosity can lead to immense personal satisfaction and fulfillment. By taking the time to help others through acts of kindness, volunteering, or simply being a supportive presence, we positively impact those around us and cultivate a sense of purpose and meaning in our lives. When we prioritize the well-being and happiness of others, we create a ripple effect of positivity that can transform our day and the days of those we touch. Ultimately, serving others allows us to tap into our potential for compassion, empathy, and connection, making each day a little brighter for everyone involved.
One of my favorite Bible verses is, “Give your entire attention to what God is doing right now and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.” (Matthew 6:34 MSG).
Since I began my ALS journey, my faith is much stronger than it has ever been. I get up each morning and often thank God for giving me another day of life. I pray and read scriptures and devotions. Today, I’m a much better Jesus follower than I was when I began this journey. I’m not perfect, but you don’t have to be to follow Jesus.
Following Jesus means not only believing in him as the Son of God, but also living out his teachings in our everyday lives. It means embodying qualities like love, compassion, humility, and forgiveness in our interactions with others. Following Jesus involves seeking to serve and care for those in need, just as he did during his time on earth. It means walking the path of righteousness and striving to become more like Christ in our thoughts, actions, and attitudes. Following Jesus requires a commitment to his teachings and a willingness to surrender our own desires to fulfill his will. Ultimately, following Jesus is a life-long journey of faith, obedience, and trust in his guidance.
While reading this, Bill Willits said, “Maybe you can relate to this passage. I know I can. Luke 17:1 says in part, “Things that cause people to stumble are bound to come…” What are the things we chase that can ultimately cause us to stumble? Disappointment, unemployment, poverty, riches, people, disease, and death of a loved one. They can all cause us to stumble when they happen to us or to those we love. The question is, where do we turn in those moments? They are promised to come, but where do we seek comfort and meaning out of the seeming meaningless? Do we run to God or from Him in those times? Is he the source of our strength at that moment, or are we trying to find it elsewhere? And are we allowing anyone to run with us at that time”?
Please don’t wait for tough times or a diagnosis to find your faith (like I did). Trust Jesus! Trust God! Become a Jesus follower! Serve others, love others, forgive others, just like Jesus did.
I am finding that faith and ALS are never-ending journeys. And you don’t have to be perfect to find joy in your God-given purpose.
