We all walk ancientrails. Welcome to the journey.

Gabe and Kate

Spring                                                                        Mountain (New) Moon

Nurse checking Gabe's blood pressure post-op

Nurse checking Gabe’s blood pressure post-op

Gabe is now portless. The port through which he received his infusions of clotting factor, essentially a plastic plug set into his upper left chest, is gone. He’s had one for eight years, 80% of his young life. I asked him if he missed it. “Sort of.” The port was the culprit in his septicemia returning last week, harboring a nidus of the bacteria, “a place in which something is formed or deposited.” Jon’s had to be there in his room for most of the time since Thursday night at 12:30 a.m. when the lab called with the blood test results. It’s a long stint. For both of them.

I went to the afternoon sessions of the Sjogren’s conference with Kate, listening to lectures on joint pain and Sjogren’s, dry mouth and its dental implications, and on dermatological issues. Sjogren’s, as a syndrome, is a collection of symptoms that may seem unrelated, but have an underlying cause, in this case a dysfunction in the autoimmune system. The number of symptoms are a problem for researchers, physicians, drug companies and, particularly, patients. Each symptom like dry mouth, dry eyes, dry skin, fatigue is a separate entity that must be dealt with in its own way. This means an often bewildering number of ointments, salves, mouth rinses, eye drops, as well as methods for managing both stress and fatigue. And the need for treatment is at least daily and in most cases a number of times per day. That’s exhausting in and of itself.

20180414_130149For example, we measure Kate’s energy in K.U.’s, Kate units. When she’s used up her K.U.’s for a day, she often goes to bed. No matter what time it is. One woman, Sjogren’s is overwhelmingly a woman’s disease, measures her energy in spoons. She sets out 6 spoons and as she does a task, she removes a spoon. When the spoons are all gone, so is her capacity to do things.

It is, in other words, hard.

Right now, as well, Kate’s doing all these with one hand literally tied up. Makes it good that we’re together.

tao2Even here the tao flows. Tapping into it means feeling the surges of healing, of exhaustion, of relationship weakening and strengthening, of giving and receiving. Accepting them as they come, not fighting them, not trying to be stronger than we are, yet finding the moments and the things we can do to make healing hasten. In this moment the tao reminds me of the power of love, the wisdom of the body, the necessity of rest. Going with it. Letting it come through me. Like water rushing down the mountain.

 

 

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