Diary of a Citizen Scientist, by Sharman Apt Russell, OSU Press

Reading List: Books on Nature, Cancer & Caregiving

Welcome to my every-so-often mid-week posts highlighting books on my reading stack. Some are books I’ve sought out, some come to me for review, and others are gifts.

The first one straddles the zone between science writing, nature journal, and memoir. That reach makes for a fascinating read.

Diary of a Citizen Scientist, by Sharman Apt Russell, OSU Press Diary of a Citizen Scientist, by Sharman Apt Russell, OSU Press

Diary of a Citizen Scientist: Chasing Tiger Beetles and Other New Ways of Engaging the World, by Sharman Apt Russell

Russell has always been a thoughtful writer, able to examine issues as diverse as ranching (Kill the Cowboy) and hunger (Hunger: An Unnatural History) with balance and clarity. Diary of a Citizen Scientist is her immersion into the world of those passionate amateurs who, by volunteering for research projects from astrophysics to molecular biology, are reshaping both science and how we know the world. In this, her most personal book, Russell’s writing ranges from thoughtful examination to luminous revelation that reads like William Wordsworth or Annie Dillard, the soul shivering with ecstasy:

“…I feel a joy here. I feel that brightness in the veins, in the chest,” Russell writes, describing her first collecting trip searching for tiger beetles, third-of-an-inch-long carnivores that feed as ferociously as lion packs. “I have a purpose here, surrounded by water, by light. I put down my pack with its bear spray and collecting boxes and sandwich, and I feel light and easy, and I swing my collector’s net just a little, like a flag.”

Diary of a Citizen Scientist is a journey narrative, a chronicle of a search that changes the author along the way. It’s not quite memoir, but it is that compelling. (Read the full review at Story Circle Book Reviews.)

The next two books relate to Bless the Birds, the memoir I’m deep in revising.

The first book simply appeared out of the blue in my mailbox; the second has been on my shelf for years.

Waking Up Dying, by Robert A. Duke (Good Enough Publishing) Waking Up Dying, by Robert A. Duke (Good Enough Publishing)

Waking Up Dying: Caregiving When There is No Tomorrow, by Robert A. Duke

Waking Up Dying is a candid exploration of what happens to two lives when a diagnosis of a frightening and terminal condition–in this case, brain cancer–comes out of the blue. Duke is a retired communications professional, his wife is a journalist; they’ve traveled the world together, they’re not helpless or stupid. Still, they have to fight for appropriate treatment for Sharleen, wrangle with insurance companies to have that treatment covered, and somehow take care of each other in the grueling unwinding of Sharleen’s life. The account of their journey is packed with useful information for anyone navigating our country’s often-byzantine health care system.

The Caregiver's Choice, by Elaine Long (iUniverse) The Caregiver’s Choice, by Elaine Long (iUniverse)

The Caregiver’s Choice: Find Strength and Serenity By Changing Your Mind, by Elaine Long

The fourteen chapters in this slim book by award-winning novelist Elaine Long offer advice, comfort and wisdom to those of us who unwittingly become caregivers for the people we love. The Caregiver’s Choice is a personal look at what Long learned in the decades she cared for her mother, who had Alzheimer’s Disease, and also Long’s husband, who had a heart attack in 1996, and died of lung cancer in 2003. During those years, Long realized that the choice in caregiving is deciding accept the role in a way that doesn’t make us crazy or break us, but allows us to learn and even find the joy our work. I dip into The Caregiver’s Choice whenever I want to remind myself of how to survive the caregiving journey with my sense of humor and my sanity intact.

Giving Thanks for Hospice

Molly Cabe and Carol Ley, harpist for Angel of Shavano Hospice, play a duet in our living room, November, 2011

A year ago, this house was filled with people. Molly and her sweetie Mark were staying in the guest cottage, Richard was ensconced in the hospital bed in our bedroom; friends and family came and went along with nurses, home health care aides and others from his hospice team. Even while I appreciated their support and love, the parade of people often overwhelmed me. I craved peace and quiet.

Today, it’s just me. I have peace and quiet in spades, and of course, I would trade it to bring Richard back, his smile beaming like sunshine. (Ttechnically it’s not just me here: Buffy Noble, an English poet, is staying in the guest cottage with the Terraphilia Residency Program. She’s very quiet though.)

My late love and his incandescent smile….

The approach of Thanksgiving has me thinking about what I’m thankful for. The list is long, beginning with the love and support of my wonderful family, the generous community of this small town, and the rich fellowship of friends and readers and colleagues.

Right up near the top of that list is hospice. Last year I got to know two hospice organizations: Visiting Nurses Association of Denver cared for my mom until her death in early February. Seven months later to the day, Richard’s oncologist told us it was time to refer him for hospice care. So the day after we returned from The Big Trip, our three-week, nearly 4,000-mile-long drive across the interior West and down the Pacific Coast from Washington state to southern California, his team from Angel of Shavano Hospice made their first visit.

What is hospice? Simply put, it is team-oriented, compassionate care for people with a terminal illness or injury, and their families. Hospice care focuses on combining therapeutic medical care, pain management, and emotional and spiritual support to allow people to live the end of their lives in dignity and comfort, whether in a hospice facility or at home. The word originated with shelters for travelers on pilgrimages in the Middle Ages; the first modern facility to employ hospice principles in caring for the terminally ill was established 1967 by Dame Cicely Saunders, a British physician.

None of us want to think about death. But if we do, most of us would prefer to die at home or in a comfortable facility with expert care. Why wouldn’t we?

Mom, celebrating her 79th birthday with high tea at Denver’s Brown Palace Hotel

That’s where hospice comes in. When my bright and tenacious 79-year-old mother’s body began to fail, stressed by decades of living with what her doctor said was the most severe case of rheumatoid arthritis she had ever seen, and aggravated by the early stages of Alzheimer’s Disease, Mom was sure she would be “fine” soon. But after she stepped out of bed one night (having forgotten she could no longer walk) and her brittle right hip shattered, she was sent to a rehab center. All she wanted was to go home with Dad, and the Denver Visiting Nurses Association made that possible. By the time Mom drew her last breath, holding Dad’s hand as she had for more than 58 years, she had come to look forward to visits from her hospice team, and her sparkling smile bloomed.

Then in September, it was my love’s turn. The two months between when we got home from The Big Trip and his death on November 27th could have been dominated by fear and grief. Instead, thanks to the warm and skilled support of his team from Angel of Shavano Hospice, especially his nurse, Will Archuletta, and the presence of Molly, who spent the last five weeks of his life with us, love and laughter and sweetness prevailed. We were blessed, and hospice was a big part of that.

Thanksgiving 2009: Richard, Dad, Mom, and my sister-in-law, Lucy Winter

So in this time of giving thanks, I am thankful for Dame Cicely Saunders for her vision and courage, for the Veteran’s Administration for embracing hospice and palliative care, and for hospice caregivers and organizations everywhere.

I encourage you to learn about and support your local hospice organization. Because much as we hate to think about it, they’ll likely support you or those you love one of these days.

(Two other outstanding hospice organizations in Colorado are Pikes Peak Hospice and Palliative Care in Colorado Springs, and The Denver Hospice.)

Adventures in Caregiving: Dad’s off

Dad at Highlands Garden Village in the public garden he and Mom helped maintain.

On Friday afternoon at two-thirty, I parted with my 84-year-old Dad at security in Denver International Airport. I reminded Dad, ensconced comfortably in a wheelchair for the ride through the airport, to call me when he got to SeaTac Airport in Washington.

“I love you Dad,” I said, and bent over to kiss his cheek. “Thanks for everything you’ve done,” he said. I slipped the wheelchair attendant a five dollar bill, thanked him for escorting Dad, and they were off.

I turned and walked the other way, toward the parking garage and the mountains I would drive over on my way home.

I’d like to say that as I made my way out of the airport and drove west toward the shimmering line of peaks of Colorado’s Front Range of the Rockies the weight of a decade of care-giving dropped from my shoulders. That’ll take time, I think.

Dad and Mom at our house on a Christmas visit

I did think back on the day, my Dad’s last in Denver. That morning at the Westland Meridian where Dad (and Mom, before her death a year ago February) lived, I prompted Dad to say goodbye to his favorite staffers and residents. Everyone we met offered good wishes, and told him how much they would miss him. “Don’t forget you can always come back,” said one. Dad smiled broadly, excited about heading to Washington to live near my brother and his family, including five great-grandchildren.

“It’s nice to be loved,” I commented as we drove away with his suitcases tucked in my Subaru. Dad nodded. “Thanks for reminding me to say goodbye.”

The carousel building with colorful fall native grasses in the Plant Select Garden, Highlands Garden Village, Denver

We took a farewell tour of some of Dad’s favorite places on our way to the airport. First stop, the public gardens at Highlands Garden Village, the first place he and Mom lived in Denver. They joined the volunteer group maintaining the gardens there and continued even after they moved to another senior apartment building. As we rambled through, admiring the bright fall colors, Dad reminisced about the gardens’ evolution. (Thank you, Erica Holtzinger, for making the garden and the group so welcoming!)

The prairie at Denver Botanic Garden, a mosaic of grasses and wildflowers

From there we headed across the city to Denver Botanic Gardens, where we wandered the wilder edges, including Dad’s and my favorite dryland mesa and prairie gardens. We stopped to sit in the warm sunshine, bent close to look at the intricate details of fall flowers and grasses, listened for birds above the chatter of schoolchildren, and ate lunch at Offshoots, the gardens’ cafe.

When we left the botanic gardens, we headed east across the city and along the edge of the Stapleton Neighborhood, the redeveloped site of the old airport, to Bluff Lake Nature Center with its long views of downtown’s tall buildings and the Front Range, dusted white with the first fall snow. Dad and I walked the path down the bluff and turned upstream on Sand Creek to find seats on sun-warmed granite boulders by the stream with its line of short, fat Plains cottonwoods.

Dad “birdwatching” with my brother, Bill, and the five great-grands, Liam, Fiona, Porter, Colin, and Connor

We talked about how he and Mom explored Denver by bus and light rail (Dad’s worsening vision had made him legally blind before the move to Denver; Mom, colorblind from birth, had never driven), the places they found to watch birds, their trips to the mountains and Plains with Richard and me, and how much they had enjoyed their years in Denver.

Then we climbed the bluff to the car and headed for the airport.

Later, as I drove west toward the mountains, I thought about Dad’s next phase in Washington State, and blessed his spirit of adventure, and my family there for being excited about Dad’s arrival. As I turned off the interstate and onto the winding two-lane highway, headed uphill to cross the first mountain pass, I exhaled one large breath, feeling very fortunate to be headed home again–by myself.

Celebrating the journey

Local beets topped by mixed greens and local goat cheese with a lemon vinaigrette, plus grilled rock shrimp. Yum!

Last night I dressed in my favorite black jeans topped by a green silk shirt and my knee-length festive beaded cardigan, and walked downtown to treat myself to dinner. Today is my birthday, but my favorite Salida restaurant, Laughing Ladies, is closed on Tuesdays, so I celebrated early.

I’m in a celebrating mood. For one thing, it’s a minor miracle that I’m here at all. I’m 56 years old, an age no one would have bet on me reaching three decades ago when I was diagnosed with an autoimmune disease then considered fatal.

For another, I’m managing to keep my balance and sense of humor in the Herculean task of getting my dad organized and ready for his move to western Washington at the end of the month. It helps that Dad is good-natured, though I am coming to believe that using “organized” in the same sentence as my very bright but remarkably scattered 84-year-old dad may be an oxymoron.

Aspens flame gold under high peaks with a dusting of late-summer snow in South Park, on my commute to Denver

I’ve made two multi-day trips to Denver so far, and will go one more time next week when the movers come to load Dad’s belongings. It’s a beautiful drive over the mountains, especially at this time of year, but it takes the better part of three hours each way; after each trip, I’m groggy for the next couple of days. Still, back in late August when he decided to make this move, I resolved that if I was going to help him, I’d do it with grace and, more so, would enjoy the time. And I have, by and large. I’m proud of that.

Another reason to feel celebratory is that I’m finally emerging from the fatigue of a string of hard care-giving years, beginning in 2004 with my father-in-law’s death from lung disease.

For the last few months of his dad’s life, Richard and I made the thousand-mile round-trip commute once a month to help with his dad’s hospice care, trips that brought the gift of healing their relationship, strained for decades. Leaving that baggage behind surely helped us the next year when then-26-year-old Molly was diagnosed with thyroid cancer, which she survived thanks to surgery removing both her thyroid and the extensive tumor, followed by treatment with radiation that made her so poisonous she had to be isolated.

Then came a hip replacement for my mom, followed by moving my folks to a new apartment (twice!). 2008 was the year of Richard’s bladder carcinoma, from which he recovered fully, but which motivated us to re-evaluate our lives.

Richard at Lucia Lodge, on Big Sur, last year.

Of course, just a year later Richard was visited by legions of avian messengers, those eerily beautiful bird hallucinations warning of something growing in his brain, and we began our journey–holding hands, as always–with  brain cancer.

And then last year. My mother died peacefully at home in early February; Richard in late November, also at home. (I am profoundly grateful to Denver Visiting Nurse’s Hospice, the Veteran’s Administration, and to Angel of Shavano Hospice for caring for all of us.)

As I sat at Laughing Ladies last night, I thought about my birthday dinner a year ago, celebrated with Richard and Monterey friends Laura and Sarah Arnow at Albalonetti’s overlooking California’s Monterey Bay, a dinner made possible by a gift from Nancy and Dave Mayer.

This first solo birthday is milestone on my new path–not the path I would have chosen, but it’s exciting all the same. I’m re-learning who I am at age 56, and what’s most important to me, as I pick my way along.

New moon setting over Mount Ouray.

Tonight is also the September new moon, a celestial beginning. I looked up from writing to see its slender and brilliant crescent shimmering above the peaks in the last glow of sunset.

That’s the moon Richard and I shared for almost 29 years. Seeing it tonight feels like a blessing, its light illuminating my new path. I am fortunate indeed.

Adventures in caregiving: moving Dad

Dad with his two youngest great-grandkids, Liam and Colin Roland, at my brother’s house in Olympia, Washington

Last Wednesday, I wrapped up my writing day early so that I could drive to Denver and pick up my Dad at the airport. He’s 84 years old and legally blind–not that his limited vision slows him down much.

The airline had arranged for Dad to be escorted from the plane to the main terminal. I had reminded him to turn his cellphone on when the plane landed, so he could call me if anything went wrong.

Of course, Dad can’t see the buttons on his cellphone very well, which means the voice-dial feature doesn’t always work.

It’s a three-hour drive from my house over the mountains and across the Denver Metro Area to the airport. In good weather like last week, the first two hours are beautiful, with sweeping views across high grasslands toward distant peaks, and dramatic canyons winding through forests splashed with aspen groves. Beautiful or not, the drive always wears me out.

Buffalo Peaks across High Creek in South Park, on my route to Denver.

So by the time I got to the airport on Wednesday evening, parked, and figured out where I needed to meet Dad and the escort, I was whipped. But Dad wasn’t: he smiled when I hailed him, and talked non-stop from that moment until bedtime. (For all I know, he continued talking, but I couldn’t hear him!)

Dad’s excited, with good reason. After ten years in the Denver area (we moved my folks there in 2002 from Tucson, where they had lived for 23 years; my mom died last year, in February), Dad is making one more move, to western Washington. There, he’ll be close to the remainder of the Tweit clan: my brother, Bill, and his wife, Lucy Winter; their girls, Heather Roland, Sienna Bryant, Alice Tweit; and the big girl’s kids, my dad’s five great-grandchildren. (Four of the latter are pre-schoolers, one just hit his teen years.)

Dad and my brother, Bill, with the great-grands, binoculars raised, “birdwatching.” (Thanks to Heather and Sienna for arranging the photo!)

Once Dad decided that my suggestion of moving was a good idea, he was ready to go. He toured Panorama, the a retirement community I suggested near my brother and Lucy, picked an apartment there, and put down a deposit.

Hence my week-day trip to Denver. Dad, who has been away in Washington state for two months at an excellent Department of Veteran’s Affairs training for the blind and visually-impaired, was returning to get ready for the move. Which meant I would be doing the getting ready, and he would be cooperating good-naturedly (talking all the while).

Thursday morning I set to work, helping Dad fill out the forms involved in leaving his current place; calling moving companies to set up appointments for estimates on packing and moving his one-bedroom-apartment-sized household; sorting through and boxing up things like cookware he no longer uses with his limited vision; transferring computer files and helping him get set up on his Macintosh after a summer of using a customized PC….

By the time I climbed into my Subaru for the drive back home yesterday afternoon, we had picked a mover, signed a contract and gotten dates for packing, loading, and delivery; arranged for pickup of the things he isn’t taking with; and made a detailed check-list for what else needs to be done before moving day–in three weeks.

Aspen gold on the approach to Kenosha Pass, 10,000 feet above sea level, between Denver and Salida, Colorado.

And I was beyond exhausted. As the highway curved to climb the first of the three mountain passes, I spotted the season’s first brilliant gold patch of aspens, and pulled off on the shoulder, laid my head on the steering wheel and cried.

Last fall, Richard and I shared his final Rocky Mountain autumn on our way home from The Big Trip, our 29-year-delayed honeymoon. He died two months later.

After a while, I dried my eyes and pulled out my camera. I got out of the car and shot a photo, and then another, and another. The sun was shining, the aspen vivid gold, the peaks bare against a bluebird-blue sky.

When I had looked my fill, I got back into the car and drove home.

The contemplative season again

Richard talking about his sculpture work, Salida Artposium, Colorado Art Ranch. (Photo by Grant Pound, courtesy of Colorado Art Ranch)

Nine months ago, after Richard’s death, I promised myself that when I got through the crazyness of after-death business, I would take the first quarter of the new year for some much-needed contemplative time to begin processing the drastic changes in my life.

After a work trip to Miami in early January to teach in the YoungArts program, I came home eager to settle in and have that inward time. My spirit was weary from two years of caregiving for my parents before my mom’s death, and then walking Richard through his journey with brain cancer.

I imagined quiet time to write and read, to catch up on my sleep and dream, to envision a new path as Woman Alone. And I managed some. But life kept intruding. My dad needed increasing amounts of time, sorting out post-Richard financial and other affairs dragged on, deferred house and shop projects demanded my attention….

Late winter flashed past, then spring in a flurry of work travel and preparing for the Terraphilia Residency Program, and then summer whizzed by as well. Now it’s September, my birth-month; fall is just around the corner. And I never really got that uninterrupted time to contemplate the wrenching changes of last year.

Richard with my parents, Joan and Bob Tweit, at the Betty Ford Alpine Garden, Vail

As the days grow shorter once again and our summer of record heat and drought limps to an end, I am once again thinking of finding contemplative time, of slowing down to absorb the shocks of the last year and some. That time won’t come this month: my dad is planning on being in his new apartment at Panorama City in Lacey, Washington, halfway across the continent on October 1st. He flies home from Washington this Wednesday, where he has spent the past two months in an intensive training program for veterans with vision challenges.

After picking him up at the airport, my task will be to help him sort through what he wants to move back to Washington with him, and to get bids on packing and transporting his small household. Then there’s the transfer of his banking and other services, plus moving his medical records from Colorado to the Southern Puget Sound VA system, and a plethora of other details.

And making sure that Dad, who is eagerly anticipating this move, takes time to say his goodbyes after a decade here in Colorado, to friends at the Westland Meridian, where he has lived for the past four years, at the church he attends, and in the Highlands Garden Village garden group, a community he and Mom treasured. (Thank you, Erica, for making them so welcome!)

The next few weeks bring a crush of writing deadlines too, so I’ll really be scrambling to meet my work commitments and help Dad. Which means my birth-month will rush by without time for quiet, much less contemplation. That’s okay; I’m determined to make that time happen once Dad’s safely off to begin the next chapter of his life in Washington, where my brother and family are as excited about his arrival as Dad is. (Bill, Lucy, Alice, Heather, and Sienna and families–you are simply wonderful.)

Succor for the spirit: a moment of beauty at dawn.

The pull of quiet time to tend heart and spirit has felt particularly strong these past few days, in part because the nights are lengthening and the weather is beginning to hint at winter, in part because of the sudden loss of my sister-in-law Lucy’s dad, Bill Winter, who died in his sleep at home on Wednesday night. He was 90-something and we knew he wouldn’t last forever, but still…. It’s a shock to think of the world without Big Bill’s dry wit and questing mind.

So many changes.

I yearn for quiet time to let those changes “season” as Quakers say, referring to the time necessary for experiences and issues to become less tender and touchy, making thoughtful responses possible.

Fall and winter have always been my contemplative season; I intend to give my spirit that restful, rejuvenating gift this time.

Blessings to you all for walking this journey with me.

Drought and Grief

Smoke from the Springer Fire turns the dawn orange over the Arkansas Hills last week.

You have to get over the color green.

Wallace Stegner’s advice about how to live sustainably in the inland West is not a suggestion. You won’t survive, he says, in these largely arid expanses between the 100th Meridian and the relatively well-watered West Coast, if your soul requires green.

Especially this year; especially in the Southwest and the Southern Rockies, where last winter’s snow pack–the source of our summer water–was so sparse as to be scary, and spring heated up so quickly even that paltry moisture simply vanished.

Which is why we have nine wildfires burning in Colorado right now, three in the southwestern corner, two west and one east of Colorado Springs, one near Leadville, and two in northern Colorado. Two of those fires are now contained, meaning they are burning within fire lines, but they are not controlled–on the way to being out; the other seven are not anywhere near contained, especially the largest three, the 83,000+ acre High Park Fire west of Fort Collins, which has so far burned nearly 250 homes and cabins and cost more than $29 million to fight, the 8,300-acre Weber Fire southeast of Mancos, and the 3,400-acre-and-growing Waldo Canyon Fire immediately west of Colorado Springs.

A tattered and worn tiger swallowtail, most likely a western, resting on the relatively green and well-watered hanging basket of flowers on my front porch.

The high temperature here in Salida, at 7,000 feet elevation in a mountain valley that is always dry, but not usually this parched, topped out at 99 degreesF yesterday. That’s the hottest by far in the 15 years I’ve lived in this high-desert valley in the rain-shadow of the tallest stretch of the Rockies.

I feel as tattered and worn as the tiger swallowtail butterfly in this photo, which looks like it has been through heck and back, its tails and the lower edges of its wings broken off, and the scales completely rubbed away in several places.

Wholeleaf indian paintbrush blooming in my native grassland yard because it’s gotten some supplemental water.

The landscapes I love are hurting in this drought, and that hurts me to. I can water the native grassland and wildflowers in my yard sparingly to keep them alive, but I can’t water the mountainsides around my valley. I can only watch helplessly as mountain meadows usually green at this time of year turn brown, as the evergreen foliage of the pinon pines and junipers on the nearby hillsides begins to dull, as the streams and the green band of riparian vegetation they nurture shrink.

We’ve received less than three inches of total precipitation in the first six-plus months of the year. That’s not enough to keep alive the living communities that animate these landscapes–from microscopic soil inhabitants to black bears and towering ponderosa pines, from rustling willows to lithe trout. These landscapes have survived long droughts before, including the decades of drought in the late 1100s that were a factor in causing the Ancestral Puebloan people to move from cliff dwellings like those of Mesa Verde to more reliable water sources along the region’s major rivers. But I’m guessing that survival wasn’t easy, or pretty.

Richard Cabe at 18, all James Dean restless creativity….

As I watch the landscapes I love wither in this extraordinary drought, I grieve the losses. For the company we humans are losing as each individual, and in some cases, whole populations of plants and animals, die out. For the homes burned in the wildfires. If this is global climate change, I hate it already.

And I grieve for my personal losses too, especially that of the love of my life, sculptor and economist Richard Cabe, he of the brilliant mind and boundless creativity, gone on to whatever is next in the cycle of life after he died of brain cancer last November.

How do we survive times like this? I know that I turn to nature, be it ever so beleaguered by drought and fire, and look for the grace notes–like that tattered tiger swallowtail or the brilliant indian paintbrush blossoms–signalling that life manages to thrive despite all.

Those small miracles remind me that joy lives on; I only have to pay attention and let it in.

Brain cancer by the numbers

Sunset while compiling tax data…

Recently, I devoted an entire afternoon to pulling together last year’s financial information for taxes. I had procrastinated as long as I could because looking at our accounts reminds me forcibly that there is no “our” anymore—the love of my life and my husband for more than 28 years, Richard Cabe, died four months ago tomorrow at eleven in the morning, not that I’m obsessively keeping track or anything.

For my date with data, I curled up on the couch with my laptop in my lap, plus a cup of chocolate gelato for comfort. (Chocolate is my only remaining drug. I’m not ashamed to say I use it frequently, although of course, responsibly.)

Opening the computer file containing our household accounts reminded me of the gift of Richard’s presence in my life—and now, my grief at his absence. After he was diagnosed with brain cancer and had to give up a regular work schedule, he took over the chore of keeping our books; he continued until about three months before he died, when the glioblastoma trashing his right brain made deciphering a spreadsheet impossible.

As I began tallying the various categories of expenses and income for the tax forms, I realized that those data tell part of the story of the last year in our journey with his brain cancer. It’s a skewed picture, but interesting nonetheless.

“Prosthesis” with luminarias placed by attendees at the celebration of Richard’s life

For instance, there’s Richard’s income for the year: $19,250. That’s ten months of Social Security Disability Insurance benefits, beginning last January. (Since he didn’t survive the entire month of November, he didn’t get that month’s disability payment.) My income is a more complex calculation since I’m self-employed. I grossed less than his total disability benefits, no surprise since most of my attention was going to helping him live well with brain cancer for as long as he could, and my expenses were higher than usual. The bottom line: I earned… nothing. Looked at strictly from an accounting perspective, caregiving clearly does not pay.

Our co-pays to the Veterans Administration for his medical care topped $5,000 for the year. Which sounds like a lot until you consider the extent of that care: two brain surgeries, one cranial drain procedure, and three separate stays in the ICU; a five-month course of Avastin, a chemo drug administered intravenously every two weeks at the VA Medical Center’s infusion clinic; six MRIs just in February and March, plus two CT scans in that same time period; visits to his oncologist every other week between March and his last visit in September (and weekly calls from her thereafter); the services of the palliative care team; and two full months of hospice care at home.

Probably the most telling fact for me is that we racked up 6,387 miles on our Subaru odometer just driving back and forth to Denver. At an average of 350 miles round-trip, that’s 18 trips over the mountains in nine months—his last visit to the Denver VA Medical Center was in September. There were actually 19 trips, including the one where Richard rode to Denver via emergency ambulance transport in the middle of the night and friends drove me.

Richard on his last picnic, Marshall Pass Road near Salida

What those figures don’t reveal is also remarkable. For much of the year, he lived well. His brain didn’t always dance to the tune he wanted it to, but that didn’t keep him from working on his sculpture, harvesting the garden, fixing things in the house, reading art theory, and having thoughtful conversations about sculpture, the idea of terraphilia, the economics of local food production, and the daily practice of lovingkindness. It didn’t hinder his enjoyment of his morning coffee and daily dose of dark chocolate and Belgian beer, the feel of sunshine on his back, the sound of goldfinches’ bell-like voices, long walks around town, or our Big Trip, a 4,000-mile swing across the West and down the Pacific Coast from Puget Sound to San Simeon.

Nor can those careful numbers show just how improbably happy we were at the miracle of being together even as we knew his life was coming to an end.

It’s not that the numbers lie; they’re only part of the story of our journey with his brain cancer, a journey that took us each through a metamorphosis neither of us imagined happening so soon. Yet here we are, me doing “our” taxes and Richard… wherever bright spirits go. Still smiling, I bet.

Renovation

I didn’t intend to renovate my life. After Richard died last November, I figured I’d hibernate for several months to recover from the journey with his brain cancer, especially the last four weeks of caregiving while simultaneously learning to let go. I wanted some time to hear myself think, to figure out this new and unsought role as Woman Alone.

I thought I’d work on the next book (or books). Hah.

Luminarias light Salida’s Steamplant Sculpture Park in Richard’s memory

First there was the celebration of Richard’s life to prepare for, just after winter solstice. Like anything done with a great deal of love and thought, it took far more time and energy than I expected. It also turned out to be a beautifully moving and healing event, bringing together a crowd of people whose lives he had touched in a way that left us all feeling good–like we’d really celebrated his life and our loss.

After that was the scramble to get paperwork done before the end of the year. And then the scramble to get organized for the Terraphilia Artist/Writer Residency program we’re establishing in his honor with Colorado Art Ranch. The latter entailed taking a long look at his historic studio and deciding that in addition to a thorough clean-out and reorganization, it needed work.

The front door to Richard’s historic studio

That meant I needed to learn about construction and renovation of historic brick buildings, both way out of my comfort zone. I’m slowly learning how things work in the shop, what needs to be done most urgently, and who and how to ask for help. (Heartfelt thanks to all who have responded to those pleas!)

At the same time, or perhaps because of the renovation energy I’d unleashed in the studio, I decided it was time to renovate my web presence. Hence this spiffy new website and blog combination, which would never have come to be without the help of Bill LeRoy, friend and guru of WordPress. He understands and speaks Geek, talents I do not claim.

While all this other renovation was happening, I decided to revive the project of bringing my first book, Pieces of Light, back into print—as an ebook with the help of my virtual assistant, Lisa DeYoung). It made sense to—hah!—renovate the book, adding an update at the end of each chapter, enticing new readers with new content. Which of course meant I had to research, find a writing voice that honored the long-ago me who wrote the original book, and write those updates.

That wasn’t the writing I had planned on in what I thought (hah again!) would be the quiet months of my late-winter hibernation. (I also hadn’t planned on upgrading the operating system on my Mac laptop to handle Apple’s new iBooks Author software, another renovation which of course, wasn’t as simple as I hoped.)

All this renovating has pushed me out of such comfort zone as I had left after Richard’s death, putting me into new territory on several major fronts of my life. I suppose that’s good, though some nights between two and four a.m. when I lie awake sorting through and assimilating all of the new information, I wonder. Long and tiredly.

But here I am. Woman Alone. Who finds at the end of another day of cramming more information into my brain than I thought it could hold, and figuring out a construction problem all. by. myself. that I’m actually happy. Being me, here in the place I love, on my own.

full moon setting in the dawn skyIt helps that I have you all walking with me and cheering me on. And that I can feel Richard’s spirit smiling over my shoulder the way I did this morning when I looked out the front door and was so entranced by the luminous full moon setting that I dashed outside barefoot in my bathrobe to shoot some photos. (Did I mention the thermometer read 11 degrees F?) I think he was actually laughing then…