4th of July

4th of July has always been one of those mega gatherings at Patti’s parents’ home. So traditional you could even use it as a benchmark through the years.

It caused me to reflect on the changes of MS progression over time and how that is a bit like dropping a stone in a pond in that each year the ripples of those changes alter at least our family’s involvement.

Megan and I picked Patti up from her care facility in late morning and brought her over to her parents’ home and pool.

Fortunately it was a bowel accident free several hours which unquestionably has a ripple effect on anything. The absence of a bowel accident improved involvement and interaction with Patti.

Returning Patti in early evening she remarked how much fun she had but also how tired she was. She had no opportunity for an afternoon nap and that takes a toll on her stamina sooner than later. Plus being outside most of the day somewhat exponentially increases that toll. We the able bodied don't give much thought to July temps in the 80's at poolside. Yet for Patti's MS every degree above 72 acts somwhat like a multiplier.

Then returning to pick up our daughter I was aware one of Patti’s brother’s had set off and orchestrated a ‘legal’ fire works display kit at poolside.

Nostalgia reminded me that if I remember correctly this was a tradition we had begun years ago when traveling from our home in Maryland to PA (detouring through Virginia to pick up ‘illegal’ but quite showy fireworks). The origin was based in that Patti’s MS progression and need for a wheelchair complicated attendance at public fireworks displays and her increasing visual impairment made it less possible for her to see overhead fireworks. Again summer heat and humidity increasingly restricted her time outdoors and potential to attend public displays. Poolside fireworks were created for "accessible" fireworks.

Neither Megan nor I were even in town last year for the 4th and the year prior we were immersed in moving, so the ‘tradition’ had evolved out of our hands. Interesting it was Patti’s nieces that ‘remembered’, enjoyed and have kept the tradition alive. As the youngest, they obviously never remember Patti not being in a wheelchair nor remember the years without poolside fireworks.

Interesting how a tradition linked to MS evolves. It’s origin as adaptive to MS is lost in time. Ironically that same MS progression has increased and now so fatigues Patti that she cannot stay awake until dark to see the “accessible fireworks”.

The original MS 'ripple' has been around the pond so many times it's taken on a life of its own. And the duration of living with 18 years of chronic progressive MS has outlived so many changes and so many adaptations.