I-i-i-i-i-it's Showtime

            I have been writing and writing and writing lately, although you'd never know it from my blog postings – or lack thereof. Instead of blogging, I've been writing press releases, bio blurbs and artist's statements to get ready for my (ta-da!) art show.

            Yes, I'm finally doing it! Having a show, and making it a fundraiser for a ALS organizations, has been way up at the top of my bucket list since I first started painting my reactions to this disease, right after my initial diagnosis. And now it's going to happen – but not, I have to admit, because of my own diligence.

            Credit goes, first and foremost, to Annina Van Voorene, the social worker for Hospice of Lake County. During a visit she and Hospice volunteer director Anja Koot asked to see my paintings. "You really should have a show," said Annina – and she was off and running. She found a gallery, reserved a time slot, developed promotion ideas, and came up with a plan for underwriting. My hero.

            There are lots of other heroes in this story, like Susan Feiler, the owner of Lake County Wine Studio in Upper Lake California, who was willing to take a chance on my art work, sight unseen. Then there's Daniel Potepshyn, caseworker for the ALS Association, who is helping get the word out about the show. A special round of applause goes to the fine people of the Dream Foundation, a northern California organization that makes wishes come true for terminally ill adults; the foundation is helping underwrite my expenses for the show. Of vital importance is the unknown artist who had to postpone his/her showing Lake County Wine Studio, thus freeing up April for me. And last – but far from least – is my husband Scott, who mixes my paints, cleans my brushes, glazes my paintings, and is hell on wheels with screw eyes and wire.

            So now I am writing painting descriptions, pestering newspaper editors, ordering printed materials and preparing the works for hanging. Oh, and I am still painting: I have a couple pieces to touch up and one more that I hope to do before the show.

            Yes, my show is coming up soon – very soon. We'll be hanging the show on April 4 (or rather, I'll be supervising and others will be hanging), and opening receptions will take place on Friday and Saturday, the sixth and seventh. The gallery is located at First and Main Streets in Upper Lake. Everyone is invited. To prove it, here is an official invitation.

            And c'mon, Bay Area, Sonoma County and Napa Valley friends, it's not that long a drive…

           

The ALS Top 10 List

            "You aren't a Pollyanna, are you?" asked my Hospice nurse skeptically after my far-too-cheerful answers to her health questions.

            Hardly. I'm usually very practical, usually aware of limitations and challenges, sometimes depressed, occasionally wistful, now and then downright bitchy. But I am very rarely cynical, and I do often try my best to find that elusive silver lining.

            So with that in mind – and tongue planted in cheek as far as it will go – here is my list of the Top 10 Good Things About ALS.

            Number 10 – Not having to go to work: I do miss my co-workers, and sometimes I even miss the work itself. But I don't miss getting up at 5:30 AM.

            Number 9 – Not having to look for work: I was laid off shortly before my diagnosis and spent several frustrating months hunting for a new job. In this economy, job hunting sucks. At my age, it really sucks.

            Number 8 – Not doing housework: I was never Suzy Homemaker to begin with (as my spouse will attest), so this doesn't represent much of a behavioral change. It does however represent a big fat behavioral excuse.

            Number 7 – Manicure and pedicure: No longer an indulgent luxury, these are now a necessity since I can't do my own nails. What the heck, I'll admit it –they're still an indulgent luxury. Love it!

            Number 6 – A chauffeur: while I would truly love to jump in my Zoom-zoom and head  out on a road trip, that is no longer possible. So it's a good thing I have my own personal driver… a.k.a. my own personal husband.

            Number 5 – House calls: Who says the days of house calls are over? Calling at my house are manicurist, masseuse, home health aides, therapist, nurse, social worker, and, yes, doctor.

            Number 4 – A deadline: Whether it's writing a story for a newspaper, finishing paintings for an art show, or completing any sort of project, I do my best work when a deadline looms. Not to be macabre about it, I am now under the Big Deadline, which is spurring me on to get my book published, schedule my art show, knock off the Bucket List, do all the things that are important while I still can.

            Number 3 – Shampoo: There are few things that feel better than having someone else wash your hair. Aaaahhh….

            Number 2 – Food, glorious food! For the first time in I don't remember when, I am being encouraged not to lose weight. With higher-than-normal metabolism rates and often with swallowing difficulty, ALS patients have to guard against excessive weight loss by upping their food intake and their calorie count. Bring on the bacon!

            And Number 1 – Friends: The friends who send me letters and funny cards and e-mails, the friends who phone regularly just to say hi and see how I am, the friends who stop by for a visit, take me out for a drive, take me out to lunch, babysit me while my husband is out of town, drop by with flowers or cupcakes… who will not let friendship die just because I have this damned disease… who prove themselves, all the time, to be real friends… These are more than the Number 1 Good Thing About ALS. They are the Number 1 Good Thing That Makes ALS Bearable. They are the Number 1 Good Thing About Life, and I love them all.

Getting Back Up On That Horse

It was hard for me to press the "post" button after writing my last blog entry, the one about depression. I felt so exposed, so raw, and at the same time pitifully over-dramatic. I had no idea what the reaction would be.

But I received so many encouraging responses. A dear friend praised the honesty I revealed. My great ALSA caseworker noted that feeling – and expressing – depression isn't necessarily negative, but can allow negativity to "flow through us rather than getting stuck."

I guess the posting worked, because those were my true motivations. I needed the purgative of complete honesty. I needed a dose of emotional Drān-O to clean my emotional pipes so that I could do again and be again, so I could get back on the horse and write again, paint again, live up to my personal motto and the title of this blog.

Now that my pipes are un-clogged, I can look back and realize that a lot of really good things have happened to me over the last few months.

The first is Rose, my caregiver. She comes for a few hours a couple of days a week to bathe me, dress me feed me lunch and – above all – to lift my spirits. She has a goofy sense of humor that does me as much good as her physical care. Plus, her presence gives my husband a much-welcomed respite, which makes him feel better, which makes me feel better, which etc., etc. So thank you, Rose.

The second is my new toy, my big-mama super-deluxe electric wheelchair. It gives me a new feeling of freedom, for with it I can maneuver around the house all on my own, and even go outside for a roll around the neighborhood. My next-door neighbor, who has been in a wheelchair since childhood, said it made her sad to see me confined to a chair. Not me. It makes me feel liberated.

The third is my crew. I don't think I'd ever crawl up out of my hole without my husband, my friends and my family, my ALS support group. Scott's ongoing good humor, outings with my adopted "sister," letters and e-mails and phone calls from friends, daughters and various in-laws and outlaws let me know that I am loved and that my life has value.

The fourth may not sound like "a really good thing" to some people, but to me it does. Big time. This fourth thing is Hospice.

Hospice does not mean giving up. It doesn't mean life no longer has purpose or pleasure. It doesn't mean just sitting around (cue the Death March) glumly waiting to die. It means you have support. It means you have realistic expectations and the means to manage them. It means you have a team of caring experts to help you live the way you want to and, when it's time, to die the way you want to.

My Hospice team has joined the Forbes Norris staff, my caregiver, my friends and family, and my wonderful husband in shoring me up, cutting through the miasma of depression, and getting me back up on that horse.

Giddy-up!

Down the Drain of Depression

Depression sucks.

It sucks as in, well, sucks (duh). It also sucks as in pulls the life out of everything. With depression, severe depression, things that are enjoyable aren't. Activities that give pleasure don't. Endeavors that add meaning to life just aren't worth the effort.

I have been mired in a swamp of depression for weeks now. Oh, I emerge regularly to find that life still can bring joy – Christmas decorations, thank you notes from the grandkids, the kindness of my caregivers, the love of my husband, chocolates. But anything that requires effort on my part spins me back into the do-nothingness of depression.

Look at my list of blog postings. I haven't written anything since early December. My previous posting was two months before that. And it's not as if I have had nothing to say – there has been a lot going on in my life, a lot of things I would really like to share in my blog. But every time I sit down to write, I give up before I even start. It's just too much trouble to wait for the voice-recognition program to come up, just too much trouble to think of what to say and how to say it, just not worth the effort.

So I look at mindless pet videos instead. Or it I play computer pool. Or I look at online shopping sites when I know I have no intention of buying.

And then there's painting. I have one painting still on the easel, almost completed, a picture of myself and my daughter in our opening-day-at-the-races hats. It just needs a little more work, but that little amount takes more effort than I can muster. It is easier to let my depression come up with excuses: my hand is too weak; I need to much help to set up my palette; it's just not worth the effort.

So I ignore it. I can pass that painting a dozen times a day without looking at it, without noticing the paints or the brushes, the few pieces that still need finishing touches, the many blank canvases waiting for inspiration. Finding inspiration is too hard. Succumbing to depression is too, too easy.

This blog, this admission, may surprise a lot of people who know me. I am constantly being told, "You are handling this so well," or, "Your attitude is always so positive." That seems true, I know – and sometimes it actually is. Sometimes by attempting to be cheerful I can actually make myself so. Sometimes my depression will take time off, and I can actually feel upbeat. And sometimes it's just so embarrassing to admit such profound negativity to people who are trying so hard to help me.

And often, usually, the negative and the positive are interspersed and interwoven, both equally real. While I do hope to lessen, through a combination of medical chemistry and self-awareness, the downward pull of despondency, I don't ever expect to eliminate negativity or do without depression, not completely. As my neurologist said, "If you weren't at least a little depressed, you'd be nuts." ALS is, by its very nature, damned depressing.

And depression, trust me, sucks.

Thirty Years – What's Next?

It's been 30 years. Is that a short time, or a long time? I guess it all depends: this 30 years is a long in that it has encompassed so very much, but it's short in that it hasn't been nearly enough.

Last month Scott and I celebrated our 30th wedding anniversary, a milestone that brings up countless, varied memories of the past and incalculable confusing questions about the future .

We met in Hawaii, where we both lived for many years. We were friends for a long time, then close friends, then – somehow, magically – sweethearts. We married in a beach ceremony at Anaehoomalu Park, me in a traditional holokuu, Scott in an embroidered shirt and Hawaiian wedding sash, both of us bedecked with flowers and maile.   The wedding was performed by a friend who was both a minister and a kahuna; the cake was decorated with real flowers by another friend; the Hawaiian music was provided by our friends of the Lim Family band; the reception pavilion was decked with flowers from my co-workers’ gardens; the luau feast was brought by… well, by everyone, in true Hawaiian style.

Since that Great Adventure, we have shared adventures galore. Some have been fun, some not so much, but they all have been shared.

We have had wonderful travel adventures, visiting such diverse international sites as Hong Kong, Spain, Tahiti, Jamaica, Thailand…. We have traveled the US from Miami to Seattle, Buffalo to San Diego, with Yellowstone, St. Paul, Boston, the Southwest desert, the Northwest rain forests and New England hills in between. We have enjoyed touring in our own backyard, exploring Yosemite, Kings Canyon, the redwoods, the beaches, the mountains. We have roughed it at a cliff top campsite in Hawaii and luxuriated in ersatz Italian elegance in Las Vegas, found more friendship, fun and fond memories than we ever could have imagined at (quite literally!) a little grass shack on the island of Taha'a. We have "kidnapped" each other for special birthday getaways, Scott taking me to Victoria BC and on a floatplane ride over the Canadian island where I spent many childhood vacations; me sneaking Scott away to Pebble Beach – and secretly bringing his two best friends for a most memorable round of golf.

We have shared moves, first from Hawaii to the mainland, selling most of our stuff (even my car!) In a humongous garage sale and packing up the rest to load onto a Matson barge bound for California – which Scott said would make a great country-western song title: "Thirty-five Years in Twenty-eight Boxes" – alighting in one Napa Valley town then moving to another then moving up over Mount St. Helena to our very own little home on the sixth green.

We have shared activities: deep-sea fishing off Kona, walking the little streets of Macau, playing golf, hiking the Lakes Basin near Graeagle, bird-watching on the coast, horseback riding in the hills above Lake Tahoe. We've shared events: baseball games and football games, my art show openings, birthday luaus, operas, plays, concerts, family gatherings, tractor parades, parties wild and subdued.

We have shared families, getting to know and love each other's' parents, siblings, nieces, nephews, assorted in-laws and varied cousins. I have been exceptionally fortunate in this regard, for I have gained two wonderful stepdaughters who are, in all the ways that count, my actual daughters. They are children of my heart, and I treasure the family they have created for me.

We have made it through the rough patches, from the normal, everyday, live-together, get-on-each-others'-nerves conflicts to the earth-shaking, life-changing tragedies. We dealt with personal demons, family alienation, job losses, depression, money issues, accidents. We saw each other through medical scares and medical actualities: Scott has had countless surgeries, one of which left him in a coma and near death for a month. We buried both our fathers, Scott's mother, and are slowly losing my mother to illness and dementia. We suddenly, horrifically lost my sister and her barely-teenaged daughter in a car crash.

And now we are faced with this. Now we are learning, firsthand and unasked-for, everything there is to know about ALS. We are learning what it does to the person with the disease, what it does to the caregiver, what it does to a relationship. We are learning all the nuances found in the phrase "progressive disease." We are learning how much this thing costs, in money, in energy, in emotion. We are learning, through trial and error– and necessity – how to switch our former roles: I have, by and large, been that healthy one, the one providing care and comfort when my husband is ill or injured.

But not now. Now I can do almost nothing. Now I need almost constant care. And as ALS progresses I will be able to do less and less and I will need more and more. And hanging over our heads all the time is the definitive truth of this disease: it will, ultimately, eventually, kill me.

So we share that knowledge and that worry. But we are buoyed by our 30 years of marriage – the good times, the bad times, everything we know about each other, all our love. We would like to look forward to 30 more years. We will settle for, and cherish, what time we have. We will remember what we said on that Hawaii beach: for better or worse, in sickness and in health, till death do us part.

Extra! Extra! Speeding woman crashes into bystanding car!

           I fell again the other day, this time in a most spectacular manner. It wasn't just a fall, it was a man-bites-dog incident that had me pitching headfirst into the bumper of our parked car.

            My husband and I had been out running errands. He parked in our garage, got me out of the car, and asked if I needed help getting up the two steps to the door. "No," I said, "I can get it." And I sure did: first step okay, second step okay, reach for the doorknob and whoops! All sense of balance left me in a flash, and I toppled backwards down the stairs.

            I could have slid down slowly, landing on my well-padded fanny. I could have gone down slightly sideways, alighting on the ledge beside the stairs. But no, not me. I had to go down like a felled tree, slamming the back of my head into the bumper of the car.

            Let's erase any suspense: I am fine. I have a monster goose egg, and my body aches as if I had been danced upon by cloggers. I never lost consciousness, and I remained lucid throughout. I did suffer a concussion, but no broken bones or long-lasting damage – although it did take a long-lasting adventure to find that out.

            Because my landing was ferocious, loud, and on my head, Scott called 911. Our paramedic neighbor appeared within minutes, followed shortly by the fire department paramedic van, a community security patrol car, a private ambulance, a fire truck, another ambulance, and a police car. I was asked countless times by countless paramedics what happened, how many fingers I see, what year is it, and etc. etc. For safety's sake I was put into a neck support and strapped in and in and onto a backboard, then loaded into an ambulance for transport to the local hospital ER.

            And that was the worst part. There is absolutely no cushioning on a backboard, little to no suspension on an ambulance, and terrible, terrible roads between our house and the hospital. Every bump, every rut bounced my head against the backboard – right on the spot that already hurt like hell. The aches I hadn't felt immediately after the fall were starting to appear, and were made worse by the hard backboard and confining straps.

            The ambulance EMT was very kind and loosened the straps on my legs so I could get into a slightly more comfortable position – bless him. My ER nurse helped me out of my panic attack by raising the head of my gurney so that I could breathe. (Between my AL S-generated excessive phlegm and crying from the pain, both my nose and throat filled up, making it so difficult to get a breath: I tried to call for help, and neither nurse in the room would respond; the nurse who eventually did come told me I would just have to wait as I was for the doctor, and, "Ma'am, don't yell at me! You just have to wait. Yes, I do know all about ALS, but you still have to wait for the doctor.")

            Well, the nice nurse helped me, the doctor did come, I was liberated from the backboard, the x-rays were taken and read, and eventually I did get to go home – to ice packs, a comfy bed, and three realizations.

            One: no more trying the stairs without assistance, never, never again. Two: my balance is getting worse, and so are the falls; it's time for a wheelchair and ramps. And three: if I were 30 years younger I would have been in hog heaven being attended to by all those paramedics – there hasn't been such an abundance of hard-bodied male pulchritude in this house in I don't know how long. Very yummy, but not, I repeat not worth falling again!

New Year's Resolutions – in October?

            As I commemorate the start of a new year, it seems a good time to look at the past year and launch some resolutions.

            A new year? Resolutions? Really?

            Really. For me, anyway. Today is my birthday, and I celebrate making it through a difficult year, one full of the challenges and problems of ALS: I have lost dexterity and abilities and independence; I have felt nearly unbearable depression; I have railed at the unfairness of it all; I have put a heavy burden of care onto my husband’s shoulders. But I have made it through, and have found elusive but very real cause for celebration: the knowledge that I can face dire challenges and adapt and overcome; the wonderful, invaluable support of husband and family and true friends; the companionship and understanding of other pALS; the hedonistic luxury of having someone wash my hair every day.

            The coming year, I'm afraid, may bring fewer reasons to celebrate and more reasons to rail. There are, after all, reasons why ALS is called "degenerative" and "progressive." But there are also reasons to look for the best while acknowledging the possibility of the worst. That is pretty much, I think, what New Year’s resolutions are for – and why my resolutions are taking form as an examination and re-evaluation of my Bucket List. The bucket is still pretty full, but it's time to apply some ruthless practicality to the contents.

            1 – See all my grandchildren. Two vacations, one to New York and one to Minnesota, fulfilled this wish. I was able to spend invaluable time (too little, but invaluable) with all the wonderful grands. I discussed college plans with the oldest. I watched the first wobbly venture on skates of the youngest. I chatted and read and played games and looked at pictures and took pictures with all of them. And I wept bitter buckets, knowing I will not get to see them grow up. I hope they will remember me, and know that I always, always love them.

            2 – Travel. This item on my bucket list needs lots of editing, but it still is a resolution.

                        2 A – Europe and points beyond. I would love to visit London, to see Paris. I have wanted, for years and years, to spend time in Italy. Turkey, India, New Zealand… So many places call me – and I won't go. Long-distance travel has become just too difficult and too tiring, both for me and for Scott. So we cross this off the list, and watch lots of Rick Steves on PBS.

                        2B – See an Alaska glacier. Another no-go, I'm afraid, for reasons mentioned above. Oh, I know that lots of large luxury liners have excellent handicapped accommodations – but a large liner is not what I want. I want a small ship cruise that gets up close and personal with the land, the animals, the people… and the glaciers. But small ship cruises, both the ship and the activities, are far too adventurous for a couple of old gimps. Good-bye, glaciers.

                        2C – Local trips and mini-vacations. I know that any kind of travel is hard for Scott, even a day trip to the City. But I am so terribly loath to give up the wonders and beauty of in-your-own-back-yard visits. I want to see the wildflowers at Anza Borrego. I want to eat oysters at Tomales Bay. I want to spend Christmas somewhere that isn't home and doesn't carry so many memories. I think we can do this – at least on occasion.

            3 – Get my tomato book published. The book is done, the submission material is written, and one try has already been made – and I have the rejection letter to prove it. Now what I need is better research, tighter formatting, and lots of big envelopes. Get off your duff, Peggy, and do it!

            4 – Have an art show of my ALS paintings. As with the tomato book, this is a project partially done and left hanging. I have researched Bay Area galleries and obtained submission guidelines, I've taken photographs and written descriptions,  I've written my proposal letter and artsy CV. It's now time – or past time – to stop planning and start doing. (I really want to do this show as an ALS fundraiser, donating part of my share of sales – and hopefully part of the gallery's, too – to research organizations and the ALSA. If anyone out there knows an extremely altruistic gallery owner in the San Francisco area, please tell me!)

            5 – Volunteer. I would love to do something productive to help the local chapter of the ALSA. I have offered my assistance a few times, with no response. I guess it's time to get a little more emphatic.

            6 – Go to events. I'm not ready to be completely housebound, not quite yet. A baseball game. A football game. The opera. A play. Museums. Parks. Hokey little local festivals. Who is up to going with me? Scott? Debra? Anyone?

            7 – Adapt to my limitations. This is going to be a biggie, in more ways than one.

            It's going to take a big change of attitude. I'm going to need a wheelchair, probably sooner rather than later. And not just a little fold up portable model, but a big Momma super deluxe SUV of a wheelchair with all the bells and whistles that a person with ALS needs. Admitting that need is going to be difficult, making the adjustment, physical and psychological, from walking to wheelchair-bound will be hard. Wheelchair-using friends say a power chair is liberating and gives you great independence… But I just can't see it that way, not yet.

             It's going to be big financially: while Medicare will probably cover the expense of the wheelchair, it's up to us to pay for the bathroom remodel, the bedroom remodel, the ramps, the handicap van – and everything else that will come up.

            It's going to make a big impact on our personal lives. I will need more and more help from Scott, and, as things get worse, from a professional home health aide. I will eventually need a full-time caregiver, so there goes our privacy. There, too, goes a lot of our money. And there go a lot of items on this resolution/bucket list: if I haven't done them but the time I get to this point, they ain't gonna get done.

            8 – Make my final plans. The will is done, so we can check that off. My end care decisions are all written out and understood by my doctors, husband and family – and, I think, by me. I know what I want done after I'm gone, and so does Scott. All I have left to do is write my own obituaries and worry, ceaselessly and ardently, about my wonderful husband and what he will do when I die.

            9 – Live and die on my own terms, as much as is humanly possible. I will keep running until the final tackle.

            10 – Realize that I am not alone. I will accept, with gratitude, help and support from any quarter. I will try to give support whenever and however I can. I will remember that these resolutions are not only mine, but belong too to my family and friends and, most of all, my husband, whose wishes , needs, limits and aspirations are as close to me as my own.