What is normal, what is normalcy? This is different for every single individual, family or network of friends. Having travelled abroad to many countries both on vacation and in the service of my country I have grown to appreciate what normal is.
Normal is not what you think it is, there is no normal there is just what you perceive is normal and what you are comfortable with. I worked with a surgeon once who stated that “there is no such thing as common sense, if it did exist it would be very common”. He would prefer to say “I wish people would simply exercise good sense”. So you see there is no such thing as normal. Culture, customs, geography and the overall environment determine what your perception of normal is. However normalcy is something that every ALS patient and their support system strives to achieve.
Normalcy of course for an ALS patient means trying to maintain a semblance of your previous life as much as possible. For our family it includes family dinners at the dinner table and table talk. At our dinner table conversation of every topic and subject take place, nothing’s off the table literally. We practice this because our kids are so engaged with their electronic devices that we pull them away from them by engaging in real conversations. Yes sometimes conversations can take a pretty strange twist and sometimes lead to subjects that some may deem controversial. But you see the world is controversial and we want our children to be able to interpret it as best they can.
Normalcy also includes making vacation plans. As a family unit for the time being and in the future some of those vacations may not include me. This is for two reasons, one my wife and kids will need a break from me, and I will need a break from them. This is healthy and very much necessary. Normalcy also includes going to our children’s events at school and extracurricular activities. Normalcy includes getting picked up by family and friends for a quick bite or a few cocktails. Normalcy is also date nights with Meg, to include moments of intimacy, however these have changed considerably.
Normal is me yelling at my kids for not doing as they are supposed to. Me hugging and doting on my kids when they do what they are supposed to.
So you see your normal is different from my normal in many ways yet similar in many more. Life does not stop when given a terminal diagnosis it simply Alters your path and requires a little adjustment to what normal is.
So grab on to the safety rail keep all hands and feet inside the cart and enjoy the ride. As a friend of mine liked to say “Attack Life Smiling”!(shout out JT)
Stay normal my friends… whatever color shape or form your normal is.