Tick…

I’m sorry to say, I do believe you have ALS.

Tock…

We need to tell the kids and our family.

Tick…

My powerchair arrived, I’m so relieved, that last fall was not fun.

Tock…

Hands are done, what’s next?

How do you mark time since diagnosis?

There is no right or wrong answer, I assure you it’s done with many factors by all of us. The tendency is to focus on milestones, such as those above. Major changes in our physical abilities, loss of function and large equipment delivery. Or by the passing of yet another beautiful soul. Time is the one thing that all people have in common, we each mark it in our own way.

With ALS, in more advanced people, it is quietly marked by rhythmic tones from medical devices. These devices, marking time while they generate time for us; ultimate co-dependency. Our eyes follow all movement, marking time with every move of the caregiver dance; which demands more from the soul than the body. A dance comprised of constant vigilance, constant movement and an occasional breath.

The fickleness of time, unfortunately, doesn’t afford the same courtesy to all suffering from ALS. Some get more than others for reasons unknown. So what to do…?

Savor and cherish every minute, every moment, every day. Painful, uneventful, good or bad, a moment is a moment. Take it in, reflect, wait for the next one… Repeat.