Living with ALS is difficult, daunting and demanding. There comes a time when we wonder if it’s worth the effort to continue fighting. The inner dialogue is tormenting. Our loved ones, always our focus, regarding their commitment and dedication to our needs. Often debating, in our minds, “am I fighting for them or me?”. The answer is, both!

Weather we have a voice to convey our desire or we use our eyes to express; what we do in essence is ask for permission.

Permission to either continue fighting or not. Permission to adopt or forego the next intervention or treatments. It’s not permission that we need, it’s understanding. Understanding that we are afraid. Afraid of losing ourselves to ALS, losing control of our body. Unfortunately with ALS this is inevitable.

So what are we left with? Our minds, a double edge sword. Able to propel us toward joy or despair, a narrow winding road. Best navigated by straddling the median. Yes it requires constant corrections to avoid drifting.

So it’s not permission you need, it’s understanding and acceptance.

Safe travels friends!

TJ&O