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ALS Worldwide
September 19, 2017

Thoughts from the Trenches

Monk Sophronios with his mother, Eleni Jiavaris

You have just received the dreaded ALS diagnosis and suddenly a whole host of unpleasant emotions overtake you: shock, disbelief, fear, anxiety, anger, despair. I’m sure you can add your own emotions to this list. Understandably, it is not easy when one stares in the face of a terminal illness. And ALS forebodes an ignoble death. The indignity of the disease is humbling and incomprehensible until you live it. But PALS whom I know are not ordinary people – not now nor before the disease. I have spoken with scores of PALS over the last eight years. All of them are individuals who were unusually active, fiercely independent, in most cases athletic, accomplished professionals, exuberant, and exceptionally bright and creative. Only God knows why ALS often strikes people with this profile. Your strength, however, can transform an ignoble death to a noble end; and allow you to maintain dignity despite your suffering from the indignity of the disease. I implore you to be a fighter to the end. Don’t let the illness extinguish the flame within you. In this way we can claim our own victory over ALS – the body may be compromised, but the spirit never.

Yes, ALS is an unfair disease. We all wish the world were without ALS; particularly if you are a parent of young children, a newlywed, a young adult ready to begin life’s journey, or someone who is alone. It is an expensive disease as well; the costs associated with care are significant. For those with ALS who don’t have the means or access to care, their suffering is acute in ways we cannot fathom. My heart hurts from the suffering all PALS endure.

I cannot pass judgment on anyone. Just as ALS manifests itself differently in every patient, so are there different ways in which each of us handles the disease. All I want to do here is share my experience as one who has ALS for eight years now. Perhaps there is something in my story which resonates with you.

My faith is my strength. Without God, I would not be able to handle this illness. My faith teaches me that death is a beginning and not an end. I am a human being, so certainly I have my weak moments; but fear does not consume me. Forgive me, for I do not want to preach here, but faith in God is the most essential element to my experience.

I do not feel sorry for myself. Since my diagnosis, I have had a guiding thought: if ALS means that I am in the final stages of life, I want to go out being positive, helping others, with humor, gratitude, and love. I know that negative emotions can bring me down. I am probably a bit more sensitive since the disease. But I try not to give thought to what may or may not happen in future. I take one day at a time and thank God each morning that I awake. When I have a bad day, I don’t get too down, for my experience tells me in all likelihood tomorrow will be a better day.

Many of us lament the loss of our independence. I am now dependent on others for everything. I can’t move. Perhaps this was the toughest, most humbling pill for me to swallow. To be honest, at times I still struggle with this. This loss of control over the most basic aspects of daily life can make one feel as though they’ve lost their identity. And here is where the mind games begin – all sorts of thoughts come crashing in: “Look at me now, as compared to what I was then.” Or “I am burden on others.” And even darker more depressing thoughts. This is where the fighter in us has to step up.

Fortunately for the vast majority of us, ALS does not affect the mind. Use that keen mind of yours to experience a freedom that your compromised body cannot. Your creativity cannot die; your wisdom will not perish; intellect remains healthy; life experiences continue to be valuable. Use your mind to maintain a sense of purpose. Help others. Communicate. Get out of your shell and engage with others. We have all marveled at the likes of Stephen Hawking, Ben Byer, Pete Frates and others who have demonstrated great vitality and significance while battling ALS. You too can be that fighter. Your family, friends, and colleagues need you. Everyone fears death; demonstrate to others that the disease does not define you, that you are not paralyzed by fear. Your greatest legacy may be the inspiration you become now in this most challenging hour.

May God give you strength and bless you and those near and dear to you.

Monk Sophronios