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We, as living beings, experience loss. Loss in many forms, and varying degrees. As individuals living with ALS, we experience loss on a daily basis. Loss of physical abilities, loss of independence, and loss of control over many aspects of our lives.

There is one loss that can evoke conflicting emotions and thoughts. The loss of others living with ALS. Why, you may ask? I have a few observations on this topic.

• We know what they endured

• We know, intimately, the looks of their loved ones, we see them in ours

• We experience the same fears

Loss is not unique to ALS, but it is our constant companion, reminding us on the daily, “you are not in control.” Well, control is, and always has been, an illusion we convince ourselves is real. ALS makes us keenly aware of this fallacy. If we are fortunate enough to keep our mental faculties, there are a small percentage that do not, we can control one aspect… our minds.

However, here in lies the metaphorical landmines, ALS also unleashes a tsunami of unrelenting thoughts and fears that can overwhelm. We have to be open to interventions that can prevent loosing ourselves to this tidal wave. Our loved ones are already losing us to ALS, don’t let it take the essence of “you.” This is no easy feat, by any means, but manageable with the right strategies and tools.

Witnessing the constant loss that ALS causes around us is painful. Yet we can use it to remind us of the empowering effect it has. How, you may ask? We can honor the lives lost, the pain endured, and the memories of those that precede us. Do this by…

 Fighting & Advocating

 Making our own moments & memories

 Living a life with purpose (our purpose)

 Surrendering, not to ALS, but to the love & support that surrounds you

Loss surrounds us, all of us. It is a part of life and living. What we do in the wake of it, is what can shape the outlook we adopt as we approach ours.

Be grateful for the time you have, none of us are eternal. However, YOU and your presence are bringing a smile and warmth to someone, somewhere.


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Juan, the line about "Surrender" was powerful for me too, as I have been thinking in the past few weeks about the process of physically surrendering to the disease. You turned it upside down, and made it easier for me to do what is so hard for most of us: accept help. The line about "don't let it take the essence of 'you' " also resonated. Thank you for sharing your insights. I will be quoting you often! Blessed Holidays to you and yours from Minnesota.


Elin Adcock
Elin Adcock
Dec 20, 2023

Thank you for putting into words what so many of us feel, Juan. I am so proud to know you, to serve with you, and to call you friend. <3


Deb Paust
Deb Paust
Dec 20, 2023

I love this line from the "Loss" piece.

"Surrendering, not to ALS, but to the love & support that surrounds you"

This is difficult for some however, it's can be beautiful and strengthening surrender.💕


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