You have ALS…blah, blah, blah, go home tell your loved ones and wait to die.

I know this is not accurate, not what actually transpires, but it’s what we hear, in between snippets of figures, prognosis, and a laundry list of resources. What we don’t hear, YET! Is, this is how we’re going to treat it. Or, this is how we’re going to help you live with your ALS. This is when our journey begins, and the first question pop’s up, why me? This, after reflecting on the gravity of our new trajectory, is the second question…what’s the point?

It’s okay to dwell here for a bit, it’s a healthy response. Once you’re ready, take a good look around you, a really good look. Are there individuals in your life who would be devastated at your loss? Many will seriously believe, no there aren’t, there’s no one. So sorry you experience this, just my humble and naïve belief, no one is completely disconnected from other humans; someone will be effected if you are no longer present.

So what do you see? When you look around, after asking yourself, what’s the point? Do you see loved ones, friends, acquaintances, strangers even? Do you still have dreams, goals, desires? If you see those extensions of your life and have things yet to do, then that, that “ is the point”!

The “point” is not an elusive treatment that may never come. We can hope and champion these developments as they arise, but they are not the “point” of remaining alive. The connections, relationships, love…these are the “point”. And ultimately these individuals, if they truly know your heart, will understand when you decide that it’s time to rest. Respectfully and regrettably, they will understand.

Love, connections and the void we leave behind are the POINT!

TJ&O