- Elena is entertaining her Mom and her two Grandmothers with Jake and Brian in the background
Hello family and friends…. John again – reporting “from the beach.” We are spending two weeks in southern Rhode Island (we head home tomorrow) with family coming and going and most important spending time with our grandchildren! We are a few miles from East Matunuck beach, which is a state beach (cheap parking for us old people) and beach wheelchairs available which can be pushed on the sand, making the beach access possible for Phyl. Transfers from the power wheelchair to the beach chair take a bit of maneuvering (I haven’t dropped her yet) and then we push her down to the water and drop her into a chair in the sand where she can feel the sand on her toes and watch our grandchildren play. We’ve had at least one of my sons around most days to do the heavy lifting but I can do it if we are alone.
She loves the beach, even though it has been frustrating, since she can’t actively play with the kids. Her arms are too weak to dig holes in the sand this year and she is stuck sitting in her chair. Watching Noah on a boogy board both delighted and frustrated her as she always loved playing in the waves herself. Still, she can interact with the kids verbally (she has a microphone and amplifier to project her voice which is weak at times) and the kids often try to include her in their games. This is the third time we’ve rented a house in southern Rhode Island since Phyl was diagnosed and she notices the things she could do the last time and that she can’t do any longer. Last year she was walking slowly with a walker or hiking sticks but there is no more strength in her legs. She has an amazingly bright attitude and huge smiles especially when around Elena, Noah and Colin but then she may fall apart in tears when we are alone. It is heart breaking and wonderful all at the same time.
The house we rented has worked out – mostly. The ramps to get in and out are good but the bathroom is too narrow for us to get her to the toilet. We bought a bedside commode which works well and there is an outdoor shower that I’m able to get her in and out without too much trouble. As always, we make things work. Phyl has been accepting about all the accommodations and adjustments we have to make to get her from place to place but it is getting more difficult.
One night, we went to Providence with Jeremy, Sam, Belita, Brian and Elena to watch a Capoeira performance (a Brazilian martial art that Belita does – when she is not pregnant) and then Waterfire (a monthly event in which they light fires in the river). Lots of people, music, and celebration. We were having fun…. and then it rained – hard! Sam and Jeremy got Phyl to the pick-up spot in her power chair while I tried to get back to them with the van in a huge traffic jam. A kindhearted lady gave Phyl an umbrella, right out of the blue. It was a mess…. and we all got wet. But Phyl thought it was an adventure, even though she got soaked!
One evening we were on the beach for dinner (Food Truck Night in Narragansett) with Belita, Brian, Jake and the kids. Brian and Jake got Phyl down to the beach in a full body sling since there was no beach chair and I got her some amazing blackened fish tacos from one of the trucks. The clam chowder was great although Elean ate most of mine!
It was a nice night until Jake spotted the lightning. Brian and Jake threw Phyl in the sling and hauled her back to the power chair. We just got her into the van just in time, but I think Brian and Jake got wet. Phyl and the kids thought it was all great fun!
Last night Phyl took our sister-in-law Jen, our niece Corey, and our grandson Noah to a local summer theater to see Saturday Night Fever (nope, John Travolta was not playing Tony but it was a great performance). I took them to the theater in the van and helped Phyl navigate the accessibility ramp at the theater and get her into seat. Jen and Corey somehow got her out of the crowded theater after the show (without dropping her). They all had a blast, especially 7-year old Noah. When they got back, Jake, Brian, my brother Dan and I had prepared a lobster and sweet corn dinner for us all. Life on the seashore – Phyl loves lobster! I have to get the lobster meat out of the shell for her as she has little strength in her hands. Yet another small thing that she misses, but the lobster was wonderful.
Most days are less eventful. Before Jake, Noah and Colin arrived to spend a week with us (Shannon had to work) we were alone. We would have breakfast on our deck, plan our day together, often meditate, go to the beach to read (or meet up with Belita and Elena if Brian had to work), come home for dinner and hang out with a movie or reading at night. Some days would include a short trip to a farm stand or fish market. This is pretty much the same schedule we kept in Costa Rica and Aruba where we spent our last two vacations. After 46 years of marriage, we are happy just being together, reading and sitting on the beach but having the kids around was really special.
I loved getting up early (to work on my online classes) while Phyl slept. I would be greeted by Noah and Colin who always arrived early to have breakfast with me. Phyl would get up and have breakfast in her chair out on our deck and we’d plan our day. Yesterday we had a big gang on the beach with Dan, Jen, Corey, Brian, Belita, Elena, Jake, Noah, Colin and Belita’s parents who were visiting from Colorado. Phyl is in her glory surrounded by family. The best part of the vacation was having our grandchildren so nearby! Phyl always has a huge grin on her face when the kids are around.
Today we are headed to the beach one last time before Jake and the kids need to leave. We’ll pack up tomorrow and head back to our regular lives. My classes start soon. I’ll be teaching one class on Tuesday and Thursday afternoons on campus. Phyl has organized for friends to be with her at those times. My other work is all online, so I can do it from home. I mentioned previously that I’ll retire in May so I can be home full time. I suspect there will be a post-retirement appointment organized for me so I can teach a few classes online but it will all be from home. We have a caregiver come in three mornings a week now and our Long Term Health Care Insurance will pay for more if we need it. Phyl will stay busy because she has an amazing group of friends who take her places in the van.
We removed the front passenger seat from the van so Phyl can roll her power chair right in place and sit next to the driver. She is pretty independent in her chair as long as there are no curbs or steps. The power wheelchair is not as “zippy” as her mobility scooter, but the chair is more comfortable and can be put in many positions to rest her back and bring her legs up. She spends most of the day in her power chair (thank God for Medicare as the damn thing was really expensive)! And while she is on a respirator all night, her breathing is still good enough that she can get through the day without it.
We don’t like to think to much about the future, so we’ll keep living one day at a time. We know that no one can predict the future. The prognosis for anyone living with ALS is not good, but we know that a prognosis is not a prediction. Everyone who has this disease experiences something different. Most have a much more rapid progression. A few are slower. But it is always steadily toward less and less ability to control your muscles and we have certainly experienced the constant loss of ability. At the same time, we have gained much from of a community of friends and of course family who show up and share their love and help. We both feel blessed and know that many people with ALS are not as fortunate as we are…
Love to you all….
John
Changing the Story 