What I Didn't Say

I have Lyme Borreliosis. Spirochetes have been living and multiplying in my body since November 10, 2008, almost 2 years. Why was I not diagnosed before now? It's in what I did not say. It's in what I said that distracted my doctor from the problem. It's in fear, embarrassment, and finally in feeling powerless and defeated by my provider's absolute certainty that a test would be pointless. And in the end, she was right. Testing me for sero-reactivity was pointless. But for reasons quite beyond her knowledge or understanding of this debilitating infection.

[edited below during COVID-19 pandemic, Feb 3 2021]:

Is it easier to simply give up when a test for infection gives results one knows to be false or to fight it out, insist the test is wrong and risk being thought a hypochondriac or - possibly worse - to risk being proven right? Unlike the Lyme experience, this time I did eventually go back for a re-test when distant friends and a state-funded nurse on-call all insisted that my life was in danger. And much to my surprise (and the surprise of the doctor who performed the test - correctly this time) the result proved that the illness I had been battling for weeks was, indeed, COVID-19. It made little or no difference to my treatment. My doctor said "Whatever you are doing, just keep doing it. We have nothing." But it made a huge difference to my emotional state and allowed me, finally, to ask for help without having to skirt around the reason. 

The real purpose for this update is to check out the "edit" function on blogger. And it is a bit of practice to help me get back into this world of written words which has been such a comfort for so many years and which has been lost now for too long. I want to come back to writing, to the selfish, personal, useless setting down of thoughts on a page. This, my chocolate, my love, my indulgence.

Tonight I write this.

If learning new skills keeps a person young, I better lay off for a while and let myself age again.

Crawled under my sister's very low back deck with propane torch, solder, flux, steel wool, sandpaper, gloves, kid's paintbrush, and a pair of garden gloves. For 24 hours I didn't dare turn on the water, afraid it would leak. The fix appears to be good: no drips. Applause welcome.

Spent much of today in the basement, continuing cleaning up the mess left by the insulation job: foam-board particles drifting across the floor, fiberglass dust filtered over every surface and into everything throughout a huge jumble of assorted debris including 3 boxes of rotten apples, boxes of dirt, cut-up milk bottles, plastic, books, magazines, framed pictures, frames without pictures, clothes, kitchen items, cloth, curtains, wire, cardboard boxes, chunks of Styrofoam, potting soil, plant-pots, plant hangers, jewelry, old newspapers, painting supplies, pens, pencils, pins, pots and pans all piled in a heap in the middle of the floor.

In another part of the basement, several suitcases stacked haphazardly with camping supplies and pet carrier, child's chair, a great mess of large upholstery fabric pieces, lengths of chain, and some nail-studded lumber which appears to have been shelving at some time in the past. A bare bulb hangs from the low ceiling, but the switch is not evident. Darkness prevails. The air is thick with toxic dust waiting to rise.

A small bright room sports a closed window and wooden brackets: some sheets of chip-board are found to fit and we have a room full of shelves ready for storage. Over the next few weeks, photo albums, incense-burners, candle holders, jewelry boxes, Christmas ornaments, wooden carvings, books and bangles - anything that might be construed as having sentimental value is carefully retrieved from the debris and sorted into boxes here.

Summer patio furniture is carried out to the back deck; a downspout is shoved back onto the rain-gutter, drains unplugged, bathroom scrubbed again and again. Garden hoses dug out of deep weeds, rhubarb picked and cooked. Guitar practiced. Dog walked. Cat cuddled.

It takes hours, days, and phone calls but eventually all utilities are arranged to be paid automatically (at this writing, waiting for banks to open to get final numbers for credit card to go on automatic)

It's Canada Day and the neighborhood is very quiet. Thick clouds overhead, occasional rain. Cassolet with turkey in the oven. Slow.

Today I regret not taking more pictures of the work here. I was embarrassed for Terry: couldn't imagine she would want the world (her friends) to see what a state her life/house was in. The black slimy mold, thick on the fridge inside and out; grime upon grime layered on bathroom fixtures with clogged drains. Now I look at the tidied cellar, boxes waiting to be recycled and tools hanging over the work-bench and I wish I had taken fewer photos of the wonderland out in the wooded hill behind the house and more photos of the job here: from the daily and ever-ongoing household maintenance (the kitchen after a successful teen sleepover including midnight crepe-making) to the unspeakable disorder and filth in the bedside drawer (numerous and assorted pill bottles, loose pills, dirty dishes, snack-food, canning jars of semi-potable liquid, scratch paper, pens, pencils, crumbs) - a journal of images to help me remember and recognize the extent of the job I've been doing. Because the memory will recede quickly as my tendency is to diminish my hardships, to downplay the difficulties, to underestimate long-term effects on my emotions, my family, my relationships, my sense of self-worth.

Terry called me superwoman, credited me with saving her life. She relied on me so completely and I did what was needed. And i did what i had to do. Now the initial crisis is history. The day to day coping with cancer is what's left. Walking the dog, washing the dishes, helping with the things that would wear her out so she has energy enough to do things she wants to do.

So I came this time with an agenda: Betty wants to be sure a memorial service is held in accordance with Terry's wishes. Terry was pleased and made some suggestions: music - Morning has Broken; The River; some others. I should ask her again and write them down. A traditional Quaker service - with an explanation for those who haven't experienced one before, and followed by a pot-luck and singing. But not yet: she is still alive and gardening and thinking about life, not death now. She thought about death a lot last time. Now she wants to enjoy the sunny days, Oprah Show, good food.

She has no pain. hat alone is some kind of miracle: how can someone have cancer as serious as hers and yet be in no pain? A visual distortion hampers her ability to enjoy books or movies, but the only other symptom is weakness and fatigue. She naps during the day between eating and gardening, snoring gently. In the evening she watches TV while i write or read. And tonight i write this.

Being Here

One of the challenges is to be here. To be present in the moment and fully with the patient, even when there is silence and nothing to do or say but just to be here, to be a comfort and to stand by and stare down the fears that creep in during times when pain or weakness or confusion reign. Also to be here, to be away from my beloved, precious newly created family, my beautiful home, my friends and comforts. To be here, so far away from what is familiar and groping about for a foothold in this community, seeking aid from strangers.

The kids are used to finding and fixing food for themselves, not real meals, but have not yet learned to clean up - something I hope they are willing to learn to do for themselves. So far I've done laundry, but none of mine; only new flannel sheets for Terry's bed and some vomity towels tonight after a particularly unpleasant few hours when she was terribly sick - now resting well and time for me to get some rest as well: it's one a.m. Being weak and needing to rely on someone else is a frightening thing for someone who is used to being in charge.

There is lots more to write about: hiking the mountain, losing the dog (and recovering the dog), beach-combing for driftwood, shopping at thrift-stores, taking a weaving-therapy class together, de-fleaing the cat and getting 10lbs of bananas, a personal harp concert, and much more. There are days when Terry can get out and about, shopping or visiting friends with me as driver and aide. Often she need help with her balance or gets too weak to stand for long. The medication causes difficult side-effects and is less effective as time goes on. Radiation to the tumors in her brain are scheduled for late March and she should see much improvement after that. The tumors cause inflammation which causes terrible headache (the first symptom she had) and confusion.

Beginning at the beginning is easier for the reader, but the writer must sometimes write from where the writing starts and hope to fill in the rest later. And the writer is now here. Just being here.