ALS in my Suitcase

      Hitting the road for our recent vacation was fun. Hitting the road with ALS as a traveling companion was… well, let's just say challenging.
     No, let's not. Let's say it was at times difficult, or depressing, or awkward, or embarrassing. Let's say it required extra work for my husband.  Let's say it required extra work for me. Let's say it required a lot of adaptability, flexibility, and patience all around.
     Among the, er, challenges: getting me out of a chair, out of the car, into the shower; dressing me in the morning and undressing me at night; feeding me; getting me to the bathroom in time to get my pants down before I flooded. (TMI? Too bad. ALS is, by definition, TMI.) 
     And more: combing my hair, folding clothes, pulling up the blankets, putting on a coat. Getting my pills out of their bottles. Opening the shampoo. Drying off after a shower.

Aboard the Orcas Island ferry

    Now, most of these things were challenges I regularly faced at home. They just seemed so much more daunting in a new, different environment.

     But it was the new, different environment that made all the difficulties, all the challenges worthwhile. Because it was, indeed, a wonderful vacation. We went places we've never been, saw things we've never seen, met people who were helpful, kind, and thoroughly charming. We ate seafood till we exploded. We saw 16 bald eagles in one day. We saw a herd of Roosevelt elk grazing right beside the highway. We saw spectacular views from the top of Mount Constitution and from the headlands along the Oregon coast.
     We laughed, finding humor in things that could have laid us low.  Tipping over at the Oregon Dunes and unable, in the soft sand, to stand up again; sliding down the dune on my butt until a kind passer-by helped haul me up. Wearing a goodly portion of each meal.  Dragging Scott into the ladies room ("Man on the floor!") to provide needed clothing assistance.
      And we did enjoy many, many problem-free times. ALS was so often very low on our list of concerns, because I can still walk; I can still, in many cases, care for myself;  I can still enjoy a lovely meal, a fun boat trip, a little hike, a beautiful view. I can enjoy finding new adventures with my closest friend: my husband.
      The best thing about this trip, the best antidote to ALS, was that we were together. This was an early wedding anniversary gift to ourselves – who knows what my status will be by October.  So we celebrated by exploring, helping each other, having fun, meeting our challenges -- together.
     We celebrated 30 years of marriage and recalled our vows: We will take each other for better or worse, in sickness and in health, till death do us part.
     And we will have a darned good time along the way.
     Even with a suitcase-full of ALS.