Saturday, June 13, 2015

Our 5 Hour Vacation From ALS

It's been a typical roller coaster week for us. The usual appointments with my PT, Massage Therapist and Visiting Nurse. The typical stacks of medical forms and endless phone calls for Linda. A meeting for the foundation and texts and emails from friends and associates. Living with ALS is always an emotional see saw. Each new day, sometimes each new hour, can bring unspeakable sorrow or, at best, no change from yesterday.

But today was different. On this Saturday, we took it easy.well, to be honest, I took it easy. Linda never gets a break from caregiving. Nevertheless we moved at a more leisurely pace, pushed emails and most of the outside world aside and by 2 PM we were ready to go somewhere. 

I know that being ready to take on the day by 2 PM sounds odd, but that's the reality of ALS. Everything takes time. Toilet time? 25 minutes. Washing up? 15 minutes. Change of clothes? Brushing teeth? 20 minutes. Breakfast (2 bags of Liquid Hope)? 90 minutes. You get the picture. Everything a "normal" person does into two or ten brisk steps, a quick reach and a few efficient hand movements, it takes me ten times the effort, 5 times the time and double the people power.

So, at 2:30 were loaded in the Hopemobile and off for parts unknown.  Our vacation from ALS begins. Linda was quoted in a news article, as she told the story of the day a group of friends lugged me up Bradbury Mountain! that on that day, "John didn't have ALS". Today was the same kind of escape, after grabbing iced coffees and sandwiches, we drove to our favorite spot on the campus of Southern Maine Community College, under the shade of a large Beech tree overlooking Willard Beach. Linda and Matt spread out a blanket, Hope (our dog) laid on the grass and we all dug into our food. Even though I get most of my nutrition through a feeding tube I can still eat by mouth and today was a ham and cheese sub with mayo. Yum.

Linda chatted with Matt, I commented occasionally, we all laughed and Hope just watched the few people (and an occasional dog) who wandered past. And the sound of the surf, seagulls snd distant people on the beach melted away any inference of ALS. My wheelchair became a recliner and for those few, precious hours I didn't have ALS. Things were truly "normal".

Tonight, as I sit here with my feeding tube connected to a pump on an IV pole, watching a Netflix movie with Linda, ALS is back. It's back, but it's sleeping. My shower only took an hour tonight. And tomorrow as we wake to get ready for church, who knows? But today, we had a vacation. Precious time without The Monster.