Sylvia's Journal

I am waking up later and later these days. It was 7 this morning, a far cry from those early mornings in Augustus when the nights were uncomfortable and it was a relief that the new day had started and I could prop myself up with pillows and forget my discomfort through writing, at 5 AM or so.

Axel was already awake at 7, not up, since he cannot get up without help, but awake, contemplating the dreams of the night. He did a verbal body check on me: belly scar? OK, but still tender; right foot? Still tingling, still stiff; shoulders and neck? Stiff and itch under my left shoulder blade. Getting to the itch used to be simple but now my range of motion is too limited and I need Axel’s help. This requires maneuvering up to the pillow hedge and positioning myself within the range of his good (right arm). We are quite a sight in the morning. At least we already have an idea what things will be like if we live another 30 years together!

Axel is fasting this morning for blood work at the doctor’s in an hour, so no breakfast for him. I get him into his carapace and he is up and running, emptying my night bucket and his urinals, putting the icepacks back in the freezer, rebooting the router so I can post, checking his mail, and starting my coffee.

It is funny how, in our slowness, stiffness and with our physical limitations, we are living the life of people at the end of their life, rather than two who are just at the beginning of a new life that was miraculously handed to them. Being so dependent on each other as we are now has been an unexpected gift, our infirmities a reason for much tenderness, our vulnerabilities a source of joy. There is much laughter and much love in this house these days. There is also much pain and plenty of hissy-fits as Axel calls them, but the laughter and love diminish them and put them in their place.

My first day ‘back at work’ was uneventful. I have a list of projects I am to get involved in, some virtual work, some writing, and then catching up with our facilitator teams in Swaziland, Nepal, Azerbaijan, Guyana, Kenya, Guinea and Cambodia. It was a light work day and easy to combine with managing our care network.

Axel was driven to occupational therapy by our neighbor Ted and came back in considerable pain (this had nothing to do with Ted); unlike my physical therapy, which consist of ultrasound, warm footbaths and gentle soft tissue massage, his are heavy workouts during which much pain is inflicted. He had a therapy-at-home session with Paul and then puttered around the house while Jim and I went to the shopping mall to get some warmer elastic-waisted pants now that the mornings and evenings are getting colder. They are of course pajama pants or workout pants but it will have to do for now. Dinner, a delicious beef curry, was dropped off by Jody Morse who we had not seen for awhile; she and Axel had some time to catch up while I went to my PT session in town, driving to and fro by Debbie Black who was thereby relieving Jim and Ted of their driver duties. After dinner we watched an old Woody Allen movie that David Byer had lent us and went to bed at 10 PM.