After last week’s soaring adventures, this week has been spent closer to the ground. The challenges are different, but still there to be dealt with.
While my skydive required only one (longish) step, navigating the beach requires many more steps — a good number of them up and down two steep flights of stairs. Quite a change from my mono-level life at home. Being out of my home routine is also a challenge, although being surrounded by so much love and support eases that difficulty.
The ocean has shown us all its moods in the past few days. Earlier this week we had two “red flag” days – surf and rip tides so strong swimming was not allowed. The past two days have been almost the mirror opposite – very little surf and an almost lake-like calm on the water.
Reminds me of my recent mood swings.
Some days I feel so strong and optimistic. On this trip I had days when I did long beach walks, used the neighborhood gym, read and laughed and helped with the jigsaw puzzle. I was aware of my ALS and its impact on my functioning, but not bothered very much by these adjustments to speaking, eating and walking. I welcomed family members to sit with me on the porch as I “fed” myself through my button. We shared laughs and hugs and were grateful for the days together at the beach.
On some other days I was pretty much living in a dark mental cloud, aware of every twitch, insult and inconvenience stemming from my disease. I sulked, stayed in my room, and just isolated myself from all the activity surrounding me. Felt real sorry for myself. On a couple of days I never left the top floor of our rented house. And all the while was preoccupied with dark thoughts of what the future held.
The good news is that I have learned to recognize these mood swings, to name and accept them, and to remember that, like beach weather, stormy days are always followed by sunny days. And it’s the stormy days that provide opportunity to do jigsaw puzzles, play cribbage, cook something special, or just be quiet and read a good book (or read beach trash).
Most importantly, I know I can choose which kind of day I will have, and my family honors that choice.
We have been coming here to the Outer Banks for over 30 years. For the past dozen years or more we have shared that beach time with our grandkids and their wonderful parents. We have so many grand memories of all these summer vacations. Even our teen age grandkids treasure these weeks. We have so many beach traditions – puzzles, lobster bakes, donuts, putt-putt, sea glass, and so much joy and laughter. We have experienced earthquakes and hurricane evacuations. And this year we have experienced grandpa’s ALS. More memories to round out the picture.
We head home today after two glorious weeks. While it will be comforting to be back home and into my familiar routine, leaving is bittersweet — there’s no way to know whether I will be able to return next summer.