(Based on observations of others comments on social media)
ALS takes so much from each of us; those of us living with this disease and our loved ones. At some point, as our eyes are all we have left, they express our desire to be free of this cruelest of afflictions. We each reach this point on our own terms and time. When the time comes our families have to walk the extremely sharp edge of grief and relief, the innate duality that is ALS.
The desire to be present ultimately gives way to the need for rest. It’s not a surrender to ALS. It is in fact our body simply finishing its arduous fight, a fight that took every ounce of our being, every ounce. A battle that our loved ones fought at our side, giving us the strength to endure as long as we do. We must all rest when our time arrives, every single person, regardless of who we are, ALS or not.
Our families don’t ever want us to reach this point, but we do. It’s okay to feel this way; when you feel in your soul that it’s time to rest.
I hope this is not distressing, I only put my thoughts down to help others understand. ALS is a beast, having the strength to endure any of it is a monumental feat. But I (we) and you (loved ones) are so worth the fight!
However you feel, at any point in your journey, that’s OK.