Travel Time

In one week I'll be flying on my way to visit family. The first travel I've done since flying out to help Terry. North Carolina mostly, to see my mother, but stopping on the way to visit Forest and Betty in Richmond and then riding with Mitch and Raidah and boys to Sylva. Three weeks after leaving, I'll be arriving back home to Maine.

Well. It's not the most exciting thing on the Internet, but it is my first attemp at a post in a while. Inspired partly by having borrowed an iPad from the library and wanting to try out the keyboard function. Oddly, there seem to be no navigation arrows at all. Moving the cursor must needs be done manually (and for my fat little fingers, that is innacurrate at best).

End of Terry's Updates.

January of 2011, 

Terry Una Lee Phillips died after a year-long farewell to friends and family. 

 With the help of family and friends, 

she was able to stay in her own home.

Cared for at the end by Ron Phillips 

and their children Sastun and Alina 

with help from the Vancouver Island Health Authority

 and its many caring and dependable employees.

Alina and Sastun live with their father 

not far from their former home in Cobble Hill. 

 Tina is back in Maine with husband Dan & daughter Angelica. 

Rose has sold the Cheerhope home 

and lives in a small brick house in Sylva, 

across the road from the City Lights bookstore and Cafe. 

Marie lives with her friend Jim, also in Sylva. 

 Ron Lee has moved to Ashville for the dancing; 

Forrest & Betty Clapp have moved into an apartment 

where they have access to assistance with health and meals when needed.

Time changes all, and all are changed. 

There I am.

Here I am.

My mind shifts daily, hourly, minute-by-minute as calls are made and calls come, as e-mails arrive and replies stack in my g-mail account. Terry grows more confused, tired, is bed-bound but holds a conversation with me in which we chat and laugh and share silence. She mixes up names sometimes, but so do I, so who's counting?

Then a call to my mom leads to two hours of almost frantic conversation as she holds on, holds up, pushes away the overwhelming grief that creeps constantly higher and higher, as if rising up to weaken knees, churn stomach; she feels it in her throat and she cannot breathe, forgetting that she, only she, Rose, is the breather and the holder of breath. And so I call often and long, and provide her with a calling card so she can call me when she is falling apart. I hold it together. And when I fall apart, I find the pieces and I stick them back together. Because I am the heartless pragmatist while Terry lies dying and my mother flails at the gods. I hold it together because that is my role.

Terry would like me to come back to spend more time with her before she dies. She is doing better than we had expected, but in steady decline and there is no way to know when her mental process will lose the ability to bounce back after a couple days rest. I am battling Lyme disease - after a two-year delay in diagnosis - and suffer acute nausea and vomiting unpredictably after taking the antibiotic that is supposed to be killing off the spirochetes that stole my brain and body for a while last summer. It's all guesswork: will Terry still be wanting me to visit if I wait until after Christmas? Will the Lyme be diminishing so that travel is easier? Will my mother - Terry's mother - be willing to go with me to see Terry? It is such a long long way - such an enormously tiring journey to get to Terry's distant home on Vancouver Island. This distance is like a moat with no bridge. It's a hard swim uphill to get there.

Sastun has said he would like it very much if I could come. He says Alina is still angry; doesn't want any "strangers" in the house - even family strangers. He says it is not that she hates me as much as she hates anyone coming into her home. I wonder how she will cope with the huge change to come. It is safe to ignore her hate, since it is understandable - who would not rail and rage at death robbing the future? Imagine it. Imagine what is happening in a 15 year old girl whose mother, the only steady parent, only steady adult she's ever known, is evaporating before her eyes. Today is Sastun and Alina's birthday: Twins, as unalike as sister and brother can be, today they turn 16. And Sastun says his Dad seems to be tired and would really appreciate a break. When I asked about him, no one called Ron a kind, caring, or compassionate man, yet here he is, in the primary caregiver's role. I hope his sense of humor helps - though I sense little of it in his emails or voice when I call.

I call - chat - try to think of something to say. I breathe. I attend yoga classes as if I were going to church: with faith that this will heal not only my body (certainly it will help more than sitting in a pew) but even my embattled mind, tired of holding it together. At the end of class, we lay ourselves down for a few minutes in Savasana, eyes closed, fully relaxed, and this is when my eyes start to leak. But in public I hold on, hold up. Only at home do I give in sometimes to the sobbing and keening.

And then, the heartless pragmatist, I wash dishes and fold laundry and sand my new old secretary desk for pickling and setting in my tiny writing room. A room of my own where the stories will be written without Terry's input, without her faulty memory to battle my faulty memory in the emails we planned in our sisterly collaboration. Where is my collaborator?

Terry lives. Waiting for her time, she keeps breathing, eating, sleeping. She takes morphine when she needs it. Nurses come to the home daily, as well as home aids to help with personal hygiene and to help with her daily needs. Her bed was moved into the breakfast nook where big glass sliding doors look out onto the green hill where deer and rabbits nibble and nap. They had snow last week. Already there is snow again. It was snowing when I was there, driving those steep, dark, winding roads to and from the hospitals, learning what we didn't want to know.

Happy Thanksgiving in Canada

Terry spent a few days in Chemainus Health Centre last week to give Ron, her full-time caregiver, and the kids a bit of a break and to give her a few days away from home. I suspect Ron spent much of his "break" cleaning house, as his first e-mail after dropping her off asked where to find dump stickers. Several friends made their way to visit while she was there: Hans and Freda from almost-next-door came twice and brought a pumpkin chess cake, Genevieve from Quaker meeting, her good friend Irv, Sophie, and of course Ron and the kids did come to visit, too, as well as others I don't know about.

As her cancer progresses, Terry needs more and more care and cannot take care of herself at this point. Her mind grows tired easily which means that visits and conversations are limited to a half-hour before she gets confused as fatigue takes over. She spends some time imagining the work she had planned involving conserving even more land and a Providence Farm community home idea for homeless and disabled people - and sometimes forgets that she is no longer working on that project.

Most of this I hear from letters from friends and from updates from Ron since I have been waging my own small war against a late diagnosis of Lyme disease which became apparent during the stresses - both physical and emotional - of two trips and a prolonged stay in the strange and uncharted territories of Cobble Hill, BC. Needless to say, my own small discomforts are put into clear perspective when viewed from the side of Terry's bed.

Is she in pain? The first few months after receiving her shunt (which ended the many-month's long headache) Terry did not have specific pain. Radiation to her brain did cause considerable discomfort, but other than that, there was not any pain from the cancer. Now, almost nine months after her diagnosis, she does ask for pain medication to help her sleep.

Terry's many friends from Vancouver Island often wonder what they can do, how to reach out and help, though most have known her only a short time and do not feel they are close to her. Terry's close friends who have known her many years, decades of close friendship, are thousands of miles away and often (myself included here) wish she were closer so that we might go for a few days or a week at a time to help out. The distance involved, and the added complexities of getting to an island, as well as international border crossing, requires considerable planning, time and money just for the travel itself. Terry chose her new home to be in a distant land - a decision that has had a profound effect on her end-of-life care: free medical care of excellent quality, but too far to be surrounded by friends and family. Her one full-time caregiver is the father of her children and her former husband, a man of rare courage and extraordinary willingness and desire to be there for Terry and the kids even after their divorce. I cannot begin to imagine how hard this must be for him - physically exhausting and emotionally draining - and he also a newcomer without close friends to call on.

On that cheerful note, I go to help prepare a lobster dinner for my husband's former wife and their kids. As Terry's life closes bit by bit, our lives continue without pause. Rather than stop us from enjoying our own lives, let us open our eyes and be thankful for each day we have. Not one of us knows how many we have left.

Happy 55th Birthday!

Terry celebrated her 55th birthday with a house full of friends and a host of birthday greetings from across the continent. Hans, a Dutch neighbor, baked a chocolate cake; Genevieve shared one of Terry's favorite songs with some musical friends who learned it in one night and performed it for Terry and the crowd.

When I lived with my grandmother, we'd always sit together after a gathering at the house and we'd count up the people who came - by name and number. If I had been at the party, I'd sit now and follow that tradition: naming the guests, counting up how many and where they had come from, settling the memory with a pattern of faces and names. I wasn't there so I won't be naming the names, playing the memory like a familiar movie in my mind. I can tell you that a lot of people sent birthday greetings through facebook and those greetings were read to Terry by Sastun and Alina. THsnks to all who took a moment, an hour, or a day to help make memories for all of us who so very much want to have a great store of memories for the future.

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. That 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.

At first, offers of help come fast and furious - much more offers of help than actual help. Then, when a particular need is inconvenient, the offer is retracted. A few steadfast friends try to do what they can, but when it comes to it, family are the ones who stick to the job, even family who have never been friends with Terry or of each other. What is it about family that makes it feel inconceivable to say "I'm too tired" or "I have my own needs" or "I can't do it" ?

Is it just me, my grandmother Una's voice in my ears saying "Can't? I don't know the meaning of that word! Give it a try; you can do anything if you try hard enough." Am I still trying to live up to her expectations? Terry hated the way Una pushed us to do more than was easy, more than was comfortable. I loved the challenge and craved the approval of those bright blue eyes looking at me, loving me wholly, faults and all.

And so my own family is in upheaval as we all prepare for separate summers in this most important of summers. A summer full of changes for everyone. We schedule as much as we can, but cancer does not follow any schedule and we all try to remember to breathe and keep flexible.

And now I look for a place to stay overnight in Seattle...