The 'M' word

I am so grateful for the good insurance we've had these many years. I don't know how many hundreds of thousands of dollars in medical bills I've racked up this last decade, and without good insurance I would either be bankrupt or dead. For all the claims, I've only had a couple of disputes, and they were minor. I didn't even raise my voice.

I thought I'd have at least another year before I had to think about Medicare. But because I am now on disability, it's mandatory that I go on Medicare at the two year mark. My retroactive disability date is April of 2010, so that gives me three months to get my ducks in a row.

Yesterday I went to an informational seminar, Retirement 101: Getting Ready for Medicare. Mostly it involves some paperwork. But there are decisions to make about supplemental coverage. And because Laurie won't be eligible for Medicare for at least 12 more years, we need to get coverage for her too, since my county subsidized retiree insurance that had covered both of us will end when Medicare starts up.

I'm terrible at this sort of thing. I procrastinate, my eyes glaze over when finances or future plans are discussed. Laurie is a planner, a comparison shopper, an information gatherer, while I'm more of an in-the-moment, whatever-will-be kind of gal. We balance each other well (though I suspect she thinks she gets the short end of the stick).

2011 - A Very Challenging Year

Oh no, you say, not another year end retrospective?!! Well, yes, of sorts. This one, though, is composed of love and gratitude for my amazing partner, Laurie, and for all she does to make my life so rich and full. This last year she has taken on the roles of cheerleader, caregiver, Sherpa, therapist, financial advisor, problem solver – in addition to the typical roles partners play: confidant, friend, lover.

September 2, 2005

Laurie and I got together in that “in between” time for me – after the worst of the cancer treatments and before most of the side effects set in. We loved going for walks, to the farmer’s markets, to concerts and plays. We worked in the garden together. Except for some ongoing intestinal issues, I was healthy and able-bodied and often prided myself on being the “butch” in the family (in reality, we shared that role, depending on the task at hand).

Of course, much of that changed over the last few years when I began to lose my balance and mobility and could no longer work in the yard, climb ladders, or even carry bags to and from the car. Since it didn’t happen overnight, the changes for us have been gradual, but there was a point sometime early this year when it clicked with us that this was not going to get better and we needed to get some changes in place.

This is where Laurie really shines. Where I deal in denial and procrastination, she plans ahead, researches extensively and puts ideas into action. She researched hand controls the day after I put the fear of Goddess into her and our friend Nan whilst driving. When I mentioned a few times that I couldn’t imagine climbing the stairs for another 12 months, let alone the 12 years we hope to be in this house, she went online to look at stair lifts and before long we had one installed. (This was when it really dawned on me that she wants to keep me around!) She encouraged me to get going with the disability paperwork, and when that came through, helped me research new cars, scooters and scooter lifts.

Of course, in addition to all the pragmatic details, there was (is) that huge emotional component to deal with. Our lives had changed irrevocably. We were both dealing with tremendous grief, occasional depression, me with chronic pain and Laurie walking the fine line between encouraging and nagging (which she does so well). Sometimes it feels like enough to drown us.

But here’s another thing I love about her that she does so well: self-care. She has done a superb job of gathering a support system for her specific issues as a  (for lack of a better term) caregiver. She takes good care of her body and spirit with yoga, massage, meditation, good food (yes, chocolate is considered healthy). She gets to be the butch now in most circumstances! She’s gotten stronger and more capable of doing some things she never had to do before (e.g. packing the car for a trip).

Yes, this year has been filled with many trials for us. I have been blessed with a phenomenal partner who helps me navigate the rough waters with love and respect. I could not have landed in a better place.

I love you sweetie.

The Courage To Do What Needs To Be Done

This weekend our choir (Aurora Chorus) performed three amazing concerts. We are 100 women singing peace, light, beauty and harmony.

This choir has become my saving grace. Singing has always been a huge part of my life – it is one of the major ways I define myself: Singer. I can’t imagine a life without singing, without performing, sharing the music, in harmony with one or with 99, and giving it as a gift to others. I’d listened to and admired Aurora for years, but knew I couldn’t commit to the rehearsal schedule and demands of learning the challenging music until I retired (I do NOT know how all you working women with families do it!). So three years ago, within a week of retiring, I was on the roster for the next singing term.

By the time I started with the choir my physical difficulties had begun to appear – walking was getting difficult, I’d started using a cane. I was easily fatigued, and tripping and falling were common occurrences. (Moments before one concert at which I was singing a solo, I tripped and fell backstage and landed hard on my knees.) It became obvious after the first concert that I would have to sit to sing – not a singing position I’m fond of, but concentrating on cues and lyrics and vocals is preferable to concentrating all my energy on staying upright.

The choir is demanding; there’s a lot of music to memorize, some of it very challenging. We have strict weekly rehearsal obligations, plus additional required rehearsals throughout the term. There are days it’s damn hard to get myself to rehearsals, and sometimes the thought of two full days of performing or rehearsing at our weekend retreat feels overwhelming. But I suck it up and I do it -- and I never regret it. The music fills me up, the community of women supports me and we share an incredible bond of the choir’s vision: Powerful women singing peace. We are blessed with a gifted conductor who draws a phenomenal sound out of a non-auditioned choir and who composes exquisite choral pieces.

I still try out for solos and volunteer to play an instrument on songs, and I’m part of a new ensemble that steps out of the choir for a song or two. In concert, this means getting up from my chair – with difficulty - and walking – with help – to a microphone or another chair or a place on stage with the ensemble. It is not inconspicuous. I use my cane, I usually have someone’s arm to lean on and I do my Frankenstein walk downstage. If I stand, I hold on to the back of a chair or someone’s arm. I’m in the spotlight and it is humbling. As I told Laurie this morning, a part of me feels incredibly self-conscious, and another part feels so proud that I have the courage to put myself out there for the thing I love so dearly. And I couldn’t do it without the love and support of my community, in Aurora and at home.

So today, I am completely exhausted, my feet and legs are so so so painful, but I am filled up and smiling inside, remembering all the warmth and joy of singing with my Aurora sisters, the delight of the audience responding to Hine Ma Tov, O Holy Night (Holly Near’s lyrics*) and Gate Gate, and the gales of laughter when, for an encore, we so seriously played our kazoos on Vivaldi’s Gloria. And the euphoria of all that work culminating in three stunning concerts.

Could I live without it? Yes, but for as long as I can muster the courage and stamina to do this, it will continue to be a vital part of my well-being because, in the words of Joan Baez, To sing is to love and affirm, to fly and soar, to coast into the hearts of the people who listen....

Bodhi svaha!

---

*Holly's lyrics for O Holy Night:

O holy night, the stars are brightly shining
This is the time a new year is born
Long has lived the world in fear and error pining
But when peace appears, the soul knows its worth
A thrill of hope, the weary world rejoices
For yonder breaks a new and glorious morn

Rise from your knees, and hear the people’s voices
O night divine, O night let peace be born
O night, O night, O night divine

New Senior RV

My son sent this photo to me this week. I especially love the flat screen TV in the RV.

I thought it was a joke, but apparently not:





Let's go camping!!!

Adventures Were Had

September 9-12, 2011.

Adventure #1: Friday morning, I get a call from Chris at All in One letting me know all three boxes are on the UPS truck, due to arrive at the shop by 10:30 – can I get there soon for the lift installation? It’s the call I’ve been waiting for, since everything else for the weekend hinges on whether the scooter lift gets installed and whether I’ll spend the better part of the day at the shop while it’s getting installed. I go prepared: iPod, book, laptop, sandwich, water, cell phone and lists of calls to make. I know that they have a big screen TV in the waiting room and I also know that the US Open tennis tournament will be on for the duration. I have my choice of scooters, walkers and wheelchairs to get around the store and could even grab a nap in one of the big recliners if I want. Home sweet home. Well, these people have gotten enough of our money the last couple of months, we’ve paid our rent.

Around noon I realize that the Element is still in the front parking lot. Wtf? Chris explains that the regular UPS driver was off and the sub didn’t have the route down so absolutely set-your-watch-by-him punctual, so the parts didn’t arrive until 12:30. We discussed many options, one which involved leaving the Element and using one of their rental vans for the weekend. Since we're traveling to Eugene that evening, that option isn’t very appealing, but we start the paperwork. Then one of the techs comes up front to say he thinks he can get it done by the end of the day so, even though I had other places I was hoping to be, I tell him to do it.

My wonderful sister-in-law Bonnie is passing through town, so she stops in and takes me to lunch. What could have been a nerve-wracking, frustrating day turned out to be pretty darned pleasant. I was on my way home by 4:30, lift installed, ready to roll with my new scooter in back, hooked onto the new scooter lift.

Adventure #2. Saturday: Laurie is teaching a class all morning at Lane Community College in Eugene. We’ve stayed at an upscale Holiday Inn but had to leave early to get to the college, so no breakfast. We both assume there will be edibles at the classroom or in another building, but we come up pretty empty. I feel panicky, I need food and coffee, it’s going to be the hottest day of the year, there is loud construction all over the campus and I’m stuck here for a few hours with Liza in tow. I’m grumpy and snappy (and dopey and sleepy…) and wish I could just drive home, but I talk myself out a complete meltdown and scoot off with Liza to explore.

Click for larger view; more views on my photo blog:
http://teelgeephotos.blogspot.com/

I am not disappointed in what I find. There are gardens and many fantastic pieces of public art everywhere. The first sculpture I come across – Living Vessel by Devin Laurence Field - is a photographer’s wet dream: stainless steel polished to a mirror surface, shadows, reflections, cut-outs, an amazing juxtaposition to trees and water garden. I could spend hours right here, just photographing this piece. My mood has shifted completely and I spend the next few hours blissfully scooting around campus discovering more art and gardens. Liza is a perfect companion - she stops and starts with me over and over with no complaint. I end up with a few hundred photos, and the adventure ends just as the day is beginning to get unbearably hot.

Adventure #3. Monday morning, back home,. The battery indicator shows that the scooter is still about 80% charged so Liza and I take off on our long route scoot/walk. When we’re about half way to the park, the scooter slows slightly, then crawls, then comes to a stop. When I try to move it, it emits an annoying series of beeps that I’ve come to understand is scooter-speak for “you’re fucked.” I’m far enough away that walking home is impossible – I can only manage a block or so these days and I’m probably eight blocks away. It might as well be eight miles. I happen to be in the vicinity of a couple of young women with several children and two strollers, so I do one of the things I’ve come to do so well – ask for help. If I can get a ride home, I can bring the car back to pick up the scooter. One of the women lives several blocks away; she tells me it will take her “awhile” to walk home and load her kids in the car so they can come back to get me. I gratefully accept and tell her I’ll wait (as if I have a choice) and if I make any progress, I’ll still be on Lincoln Street. I watch the troop amble eastward, about as fast as you might expect, which at that moment seems like a herd of turtles. I begin to regret not taking the offer of help instead from a woman who came out of her house when she heard the beeping and saw the commotion.

I manage to limp the scooter another couple of blocks – if I turn it off and sit awhile, then turn it back on, I can get ten or twenty feet further along. I discover that, for some reason, it runs longer in reverse, which is somewhat confusing to Liza and probably pretty bizarre to any neighbors who may be watching. But I don’t want to take a chance on having it die in the middle of the street, so I hunker down and wait. And wait and wait. After what seems 45 minutes I decide I’ve been abandoned; I eke another block out of the scooter, then decide I can probably make it the few remaining blocks on foot. It’s not easy, and I’m on the verge of tears all the way home – tears of pain, of helplessness and frustration.

When I return with the car, Lessie, who lives nearby, comes out to see if I need help. Once again, the kindness of strangers touches me deeply, and my belief in humanity is restored. The scooter loading goes smoothly, considering I’ve only done this a couple of times, and Lessie and I talk about our dogs and decide a play date is in their future.

Of course, I'm wigged out about the new scooter not working, so I pore over the owner's manual. My best guess is that the deep cell battery has not acclimatized yet. It needs a few cycles of running and recharging to get it acclimated, so that's what we do.

I've had several scooter/walks (scwalks? squawks?) with no further adventures of this caliber. And I now take the cell phone with me, complete with neighbors' and taxi companies' numbers programmed in. It wouldn't be an adventure if we didn't learn from it.

Ten Years After

September 10th, 2001. Late afternoon. I am still groggy from the sedative they’ve given me for the colonoscopy, but I grasp the seriousness of what the doctor is telling me. “It’s a mass in your rectum,” he says. “We won’t know for sure until the pathology report comes back, but I’m 99% sure it’s cancer.” As I’m trying to absorb this information, Gwen arrives to drive me home. She can tell by looking at me; we don’t speak on the way to the car. We don’t need to.

I’m tired when I get home. I make a couple of phone calls, but I’m keeping this close to my vest until I have all the information. I pull out the papers I’d started working on a few years before for my will - I don’t really think it’s a death sentence, but I’m taking it seriously. I have a little bite to eat and go to bed.

When I wake I’m surprised that I’ve slept through the night, but I’m in a daze and need some comfort, some normalcy, some reassurance. I check email; my sister Jackie has sent a cryptic message, something about being grateful that no one she knows is flying that day. I’m puzzled, but Jackie is always the first to have the news dialed in, so I turn on the TV. And the newscasters are saying this: “We are under attack.” I watch the images over and over, stunned. In those moments, I can’t make sense of what is happening in the world, and I can’t make sense of what is happening in my body. It is all too much – I collapse in a heap on the couch and weep and weep.

Even though I’d planned to take the day off, I decide to go into work. I can’t bear being alone in those hours – the hours of not knowing if there is an all-out war being waged on the US or if the four planes are it; the hours of not knowing if my diagnosis is terminal; the hours of wondering what is in store in the months to come, for the country, the world, my body.

After the initial shock, I am convinced that this thing will not kill me. I meditate on the tumor and it comes to me as a small, scared animal that is lost. I give it permission to leave and tell it I will help to find its way out.

The pathology confirms the doctor’s opinion; diagnostics stage it at IIIC T3. I am immediately thrust onto the treadmill that is cancer treatment protocols, and I quickly learn more about it than I ever wanted to. It’s a year of non-stop medical appointments, diagnostics, surgeries, chemo, radiation, more chemo, blood work, more diagnostics, injections – plus my own chosen protocol of naturopathic medicine, acupuncture, homeopathics, herbs, guided meditation, counseling, all manner of woo-woo, support groups, nutritional guidance and supplements.

The kindnesses that come to me from family and friends are overwhelming. I am cooked for, transported to and from appointments, sung to, held. My sister Nancy spends two weeks with me post-surgery. A beautiful quilt is made for me by many hands; prayers are said, songs and poems written, healing rituals performed. People at work donate vacation time so I can take the time off I need to recover from surgery. It is a profound time, a time to test my mettle and my faith, to let go and trust, to learn to ask for help when needed and accept it when offered. Above all, I learn how well I am loved.

~~~~~~~~~~

The long-term effects of the cancer treatments begin to show up almost exactly five years later. Five years – the milestone, the objective. If a cancer survivor makes it five years from diagnosis, she is considered to be out of the woods. She has achieved the goal! She is cancer-free. N.E.D. = No Evidence of Disease. But there are consequences. The trade-off for surviving, apparently for me, is a diminished quality of life – “diminished” being a relative term. There are many things I can still do, but there are many I cannot, and it’s necessary to make major accommodations to our home and our lives. I tell people: This is the price I pay for still being on the planet.

And as I think about today, ten years after, the blessings I’ve received, the richness that is my life, it is a price I gladly pay.

~~~~~~~~~~~~~~~~~~~~~~~~~~

I wrote this song toward the end of chemo treatments when I came to know that blessings and challenges often come from the same place.

Grit and Grace
© 2001 Terri Grayum

I’ve been picked up and tossed around by the winds of my life
Winds that blow strong through the night
When the hurricane blows and there’s no place to go
I just hold on ‘til the morning light
Oh it’s the same wind that brings the first breath of spring
And carries songs that the river sings
And the great eagle soars over wild rocky shores
On the same wind beneath her wings

All the tears I have cried when my faith has been tried
Gather in waters so wide
And the floods that come down tear the roots from the ground
And bring down the mountainside
The same water flows where the ancient trees grow
And quenches the thirst of the earth
And washes me clean in the sacred stream
Of the waters that bring rebirth

A test of our faith wears more than one face
Sometimes it’s grit and sometimes it’s grace

I’ve been burned by the flames of hatred and shame
Sometimes I don’t know how to trust
When the wild fire burns, the forest returns
Her bounty to ash and dust
The fire that ignites on the darkest of nights
Is the love burning bright in my soul
And the flame lights the way to the joyful day
When the Spirit makes us whole

A test of our faith wears more than one face
Sometimes it’s grit and sometimes it’s grace

Oops

It was bound to happen. Feet - hands - brain - disconnect. Steep driveway -- backing up -- panic.

It looks something like this (actual damage may vary):

The garage door belongs to Gwenlyn's brand new landlady. No people were injured in this event. The Element is fine. Thank the good goddess for insurance.