A New Normal

It's a phrase Linda and I have used. It's a phrase we've heard countless people with ALS (pALS) us. The New Normal.

Many of you have heard the story of, how after I was diagnosed in Boston, Linda and I stood in the driveway of the hospital and decided that the Doctor's 18 month death sentence would not stand. It's coming on seven years and I'm still here, and causing more trouble than when I was "healthy".

One thing we found was a lesson I wish I'd have paid more attention to before my diagnosis: adaptability. You're facing a disease with no cure or even an effective therapeutic treatment. A disease that relentlessly takes and takes. The only thing it doesn't affect is your mind. So each day, you learn to adapt. It becomes your New Normal.

Early on, my New Normal meant finding a way to open a jar with a weakened left hand. My New Normal was finding a way to carry my computer bag and rolling carry on on a business trip - and asking a flight attendant to lift my carry on to the overhead storage. My New Normal was learning to relax and breathe during a public speech or presentation so I wouldn't get breathless. And learning to sip water frequently to prevent my voice from becoming nasally.

Then the New Normal was walking with a cane. Not bad because my Dad did it as long as I knew him. It was the tripping and falling, at the office, in airports, on subways, that was the New Normal I found most difficult emotionally. 

The New Normal has been a clear sign of the progression of ALS. But it's also been an opportunity for us to stick a finger in the eye of The Monster  by finding ways to adapt. That often means putting pride in the trunk and letting humility ride shotgun on this journey. Can't walk? Wheelchair. Can't talk? Speech app on an iPad. Can't eat enough? Feeding tube. Fatigue? Bi-pap. And the list has and will go on.

So far, we've found ways to adapt to the New Normal because we refuse to give in to The Monster. We've been blessed by giving, and we've given from our lack. As the Bible promises, we get more back in blessings - both tangible and spiritual - the more we give.

My family isn't unique. Each year there are at least 5,000 new families who are told they have ALS and embark on their own unique journey to deal with their New Normal. They'll adapt to a slower pace of life. They'll find a way to get ramps, lifts, wheelchairs and whatever they need to keep The Monster at bay. 

They'll also become more appreciative of the small things that really matter. Laughter is the biggest thing for us. We laugh ever day, even if it's laughter borne of frustration because tears are the only other option.

And they will that friends and family will come and go. Partially because it's tough emotionally  and they have the luxury of taking a break the immediate family doesn't have. People will come and go too because they don't understand the New Normal...and they don't understand the laughter.

Everyone has a New Normal phase. New job. New house. Lost loved one. Broken heart. Adapt...it's life...and it's normal.