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A Personal Message For You: pALS, PLWALS, ALS'ers

I hope you read this and understand this is meant as just an encouraging nudge. That is if you identify with this.

Why are you retreating from your life? If your family is willing to move heaven and earth, to ensure you “live” with ALS.

I’ve been there myself, afraid of how others see me, weak, feeble, or shattered. Hesitant to step outside the house. When I was first invited to an ALS walk, I declined. Fearful of what was in store for me; knowing I would encounter others more progressed. That is until I attended a local ALS support group. There I met a gentleman who was still seeing patients, even though he could no longer speak. He was using technology and a personal assistant at work.

What I learned from him; you can’t let ALS take who you are, and what you can still offer the world. The key in that statement is “still”, not can’t, take or even can. Still, indicative of “able to”, “capable of". This is the mental obstacle many of us encounter initially, some get stuck here. Trust me, this is not a one way journey, mentally. Many of us revisit this stop on this, the ALS bus route.

Back to your life though. That’s right, why are you choosing to stay at home and disengage from life? Especially if your family is willing to help you live as best you can.

Yes, there will be logistical, physical, and definitely emotional challenges to experience at every turn. But, don’t those exist without illness? Yes! So what makes you unique? ALS? No! 30K individuals have it in the US. They say ALS is rare, I would argue this, that’s a whole other conversation. So at best you are rare, then again aren’t we all. We are in fact, one of a kind, except for twins.

So ultimately, it’s your choice to let ALS dictate your way ahead. ALS is definitely demanding and relentless, but weren’t you before ALS? What changed? Your mental faculties are not affected, save for those doubly afflicted with FTD. Indeed the mind is affected by ALS, and it is not without needed professional interventions. I highly encourage you engage with mental health professionals, I have, and will most likely do so again. This ALS bus can, and should make repeated stops for mental tune-ups PRN (as needed).

You don’t have to climb mountains, go on a globe trotting adventure, or a cross country RV trip 😉. Start by sitting outside for a while. Have friends over, or meet them at a favorite spot. You will soon realize that with technology and good support you can enjoy yourself. I am keenly aware of those who do not have the necessary resources or support to do so. My heart goes out to you.

So, nudge-nudge, rethink and re-frame your perspective, or at least try. Both for you and your loved ones. I hope you can choose to live your best life with, and in spite of ALS.


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