Getting ready for goodbye.

     An ending nears also continues.

     ALS itself is an ending every day.

     One must live with that ongoing string of losses. But sometimes enough is enough.

     I am so tired. I have so much I want to say, so much I want to write, but no more strength. I am ready for the next step.

     Thanks to all my friends and family: You brought me flowers, food, support and love. You sent letters, emails and gifts.  You appeared from out of my past and from right around the corner.  Thanks to my husband.  I cannot say all he means to me. Thanks to the wonderful people at Hospice of Lake County, ALS association and Forbes Norris Clinic: All could have been just practical and clinical but became true supporters and fond friends.

     I have not been as diligent as I had hoped about staying in touch, but I did try.

     I love you all, and I love this beautiful world, but the time for goodbye gets near.  Not now, not tomorrow, but soon.

     Keep me in your hearts as I keep you.

Reviewing the bucket list

     Shortly after my diagnosis, I wrote out a bucket list. Recently I looked it over and discovered I can check many items off as done.
     Some of those that are left undone will have to remain so, because I am not very bucketable any more. But many, while technically undone, have been fulfilled in spirit.
     We did not go on a cruise to Alaska. We did, however, take a whale watching cruise in the San Juan Islands. No glaciers, but much more spacious accommodations at our resort.
     We never went to Italy, but we did stay at the Venetian in Las Vegas. Not close, I know- but we also watch a lot of Rick Steves, so that counts.
     I never did go to the Olympics. I did go to the track and field trials when they were in Sacramento and I watched the Olympic torch go by the year the games were in L.A. , and that's closer than most people get.
     So, all in all, I've done pretty well on the bucket list. There are items that I know I never will fulfill; I'm all right with most, but some I do sincerely regret.
    I haven't resumed contact with all the old friends I had meant to. If you read this, old friends, please know I have been thinking of you. As a friend once said, "If you never hear from me again, you aren't listening."
     I regret that I haven't published my Tomato Book. (But there is still time. If anyone knows a good literary agent please contact me!)
     I regret that I was never able to volunteer as much as I wanted.
     I regret that I won't see my grandchildren grow up.
     I regret that I will leave my husband alone.
     But, I have had an exceptionally good life, filled with good friends and good experiences. I am lucky.
     ALS, however, still sucks.
     And I still would have liked to see Italy.
       
    

    
Slowing  Down, But Getting By

     Yes, I'm still here, and yes, after all these months I'm still writing. Or rather, I'm dictating, someone else is writing, and someone else will type this blog.
     I look back at my last entry and am appalled at how optimistic it was-not just optimistic but so Pollyanna, rose-coloured, unrealistic it was.
     I have been tackled. I am not conceding the game and I am still, slowly and erratically, running, but there is no way around it: I have been tackled-hard.
     It is very difficult for me to speak. My voice recognition software doesn't recognize my sounds as words. I can hardly move at all. Eating and drinking are getting harder and harder. I am more and more dependent every day.
     Things are getting worse and time is getting shorter. Optimism is getting harder to find- but it's still there.Not the sticky, sweet kind that drips all over my last blog entry, but the kind that comes from the love and support of others. Without friends, family and most especially my sweetheart, I would not be doing as well as I am.

Playing Catch-up with the Good, the Bad and the Sad

It's time to play a little catch – catch up, that is. Let's start with my art show.

What an amazing experience! It was exciting, rewarding, and a great success by any measurement: attendance (around 100 at each opening party), sales (four paintings sold at the openings alone), media coverage (local radio and four area publications), viewer response (applause – and tears – at the openings and many meaningful comments in my guest book, and financial support for ALS research (nearly $1000 donated overall).

Here are just a few highlights: a beautiful flower arrangement from my former co-workers at Sterling Vineyards; guests from all aspects of my life; gallery owner Susan Fieler and her gracious hospitality; a huge front-page 5-photo article in the Lake County Times Star; a lovely conspiracy between my husband, a dear friend and friend's Honolulu son to bedeck me with fragrant leis, just like at my art shows in Hawaii; and above all, visits from two exceptionally special people – my forever friend, maid of honor and Kona art show picture-hanger-upper Cindy, out from New Hampshire; and daughter Kate, world's best traveling companion and subject of two paintings, here from New York.

How wonderful everything was – and how completely exhausting.

So for our next round of catch-up, let's look at my show's aftermath.

For weeks before the show, I was carried high on a wave of anticipation. At the opening parties, I was buoyed by adrenaline and the support of friends. During Cindy's and Kate's visits, I was strengthened by stories, memories and love. Then… I crashed.

I slept for days, and woke to find that ALS had crept up on me with a vengeance. My arms and legs lost what little strength they had. I could barely hold my head erect. I had trouble eating, trouble speaking. I couldn't use my computer because my voice-recognition program no longer recognized me. The excitement that had carried me along disappeared, dumping me down, down, down into depression.

It was only with a lot of rest, a lot of help, a lot of support, a lot of love, a little chemistry and a visit from John the IT genius that I began to find an upward path – and then came new pain.

Next we have loss.

In late April my mother passed away. She had been very ill for years and going sharply downhill for months, so her passing was not unexpected – but it was a shock nonetheless. Your head can be prepared for such a thing, but your heart? Never.

We are reassured by the long, full, adventurous life she had led. She was an engineer for an aircraft company during World War II. She married a young Army Air Corps lieutenant after a whirlwind courtship; their marriage lasted more than 60 years until his death. They traveled all over the world, for both business and pleasure, and they lived in such exotic spots as Singapore and Hong Kong. She rode an elephant in Thailand and a camel in Egypt, saw Macchu Picchu and Kilimanjaro, help curate an exhibit for this Smithsonian and volunteered at an archaeological dig in Jordan. She gave me this as an irony-filled legacy: a brilliant student, she started college at 16 majoring in pre-med, but after her sophomore year she decided being a doctor was not an appropriate career for a woman so she changed her major… and became an aeronautical engineer instead.

She was my Mommy. Always is.

So we have now caught up on three recent phases of my life, the good, the bad and the sad. Let's check out what happening now. And let's call it the way up.

I can feel myself getting better – not physically, that's never going to happen, but emotionally and spiritually I think I'm getting stronger. I am dealing with my mother's death. Although my psyche is still not strong enough to counteract the physical weakness of ALS, I see – and feel – signs of light. I feel support and love. I know I still have a lot of life to live and the will to do it. I will get past this I will. I will.

I have been tackled, but I am not down. I will get up and I will run.

Hello Again

The Dead said it, and I agree: what a long, strange trip it's been.

The trip has been ALS itself, one of the strangest I can possibly imagine. The trip has been the changes my body – and my mind, too – has been going through. The trip has been family happenings that have both lifted and broken my heart. The trip has been people and events that have surprisingly, amazingly popped up in my life adding a surprising, amazing touch of joy.

The "long" is the years, centuries and eons that have passed since my diagnosis, all of 20 months ago. The long is the length of time it takes for the simplest, most basic tasks – bathing me, dressing me, feeding me – leaving so little time for anything meaningful. The long is the weeks and weeks that have gone by since my last blog posting, for reasons numerous and yes, strange.

But I am now back, writing again, and I have lots to tell. I am not going to fill in all the blanks since my last entry, at least not right now. Right now I will say that even the terrible can sometimes bring a silver lining; and the most wished-for can sometimes bear a great cost.

All of which sounds way too seriously philosophical – and way too philosophically serious. Especially since I'm feeling pretty chipper right now, maybe even approaching jolly. Right now I feel hope, and optimism, and anticipation. Right now I feel decidedly un-tackled and still running.

That will change, of course, sooner or later. Ups and downs, often in rapid succession, are part of this strange trip called ALS. They are part of me – as, once again, is writing this blog. More to come….

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.

Been There, Done That, Proudly Wear the T-shirt

Something surprising happened on my recent trip to Minnesota: I joined an ALS walk!

This was supposed to be purely a be-with-the-family vacation, a bucket list visit with the kids and grandkids – and it was, wonderfully so. But, thanks to a hot tip, it also included an opportunity to enjoy a beautiful day lakeside with the family while supporting the organization nearest and dearest to my heart, the ALS Association.

Granted, this wasn't the "nearest" chapter, home-town speaking nor the "nearest" event, ditto. That, the Golden West ALSA bike ride in Napa, was taking place without me there to cheer on the riders. Bummer. So when I heard that the Minneapolis ALS walk was to happen during my visit, I jumped at the chance to join in – well, as much as I can jump, anyway, and as much as I can join.

We (three generations in two cars, along with diaper bag, tote bag, camera bag, jackets, snacks, and a wheelchair for me, which ended up toting the aforementioned bags, jackets, snacks, etc.) arrived at Lake Harriet, a beautiful municipal Park and a favorite for joggers, cyclists, and dog walkers, about an hour before the walk was to begin. And the place was packed! There were pavilions set up by walking teams, live music in the band shell, tents for registration, donations, T-shirts and refreshments, and hundreds and hundreds and hundreds of walkers. This was a really big event. When the signal was given to start the walk, it took nearly a half hour for everyone to pass through the balloon arch.

There were teams walking in honor of friends with ALS, past and present, "pALS" in wheelchairs or on the hoof, old folks, little kids, school sports teams, babies in strollers, and dogs, dogs, dogs. (I think it must have been a rule that only purebreds were allowed: I have never seen so many gorgeous dogs of so many breeds in one place outside a dog show. And all were "Minnesota nice.")

Grandma's support group

And there was me. Not all the way around the lake, mind you – even with my leg brace, I'm a bit too weak and wobbly for that. Not for me the full 3 mile route: more like 300 yards. But I was there, in full support, and so was my family, rallying around their gimpy grandma and the organization that helps her.

(Although I think the kids were more interested in the lake minnows, the balloons, the free string cheese, and all those dogs…)

The walk was a success on so many levels. There was great participation. There were lots of supporters to cheer on the walkers. Even the weather cooperated with beautiful autumn sunshine. And I actually got to be part of an ALS event.

Oh, and by the way, the walk raised $300,000. Ba-da-bing!

PS – Thanks for the tip, Nancy.

Saved by the Brush

            In the midst of my gloom-and-doom, deep blue cloudy depression, one lovely surprise shines through like a bright yellow chunk of sunshine. I can still paint!

            It had been months since I had tried to even lift up a brush. With the ever-increasing weakness in my hands and arms, I was truly afraid to try.  What if I couldn't do it? What if I tried and failed? What if I discovered that one of the abilities that most defines me had been stolen by ALS?

            Well, I could, and I did and didn't, and it hadn't. I am still, mentally and physically, a painter

            Ever since my ALS diagnosis, my painting style and technique have progressively changed, and this new change is perhaps the greatest. I'm still doing semi--abstracted, quasi-Fauvist self-portraits, still using bright colors. But now my brushstrokes are broader, brushes are bigger, colors are blended directly on the canvas, and technical subtlety has gone right out the window. The paintings are still recognizably mine, and they are still a sharp poke in the eye of ALS.

            I now rely on my studio aide – also known as my husband – to position my canvas on the easel (at a much lower height since I can't raise my arms) and lay out my paints (I can't unscrew a cap or squeeze a tube) and wash my brushes (can't do that either). But I figure if atelier assistance is good enough for the Old Masters, it's good enough for me.

            I do have trouble with a lot of other aspects of painting, although by and large I have figured out work-arounds and alternatives. It's hard for me to grip the brushes, so I take hold with my left hand while gripping the brush between my right forearm and thigh, making a decided mess on my pants. It is difficult for me to control the brush strokes, so I experimented until I found that backhand is best – extremely awkward, but best. I am making a lot more of what could be called mistakes, but I don't call them that: instead, they are new interpretations of shape and form. Or some such…

            I know that before too terribly long my hand and arm weakness will preclude even this adapted style of painting and I will have to find some sort of new technique. Maybe it will be the "My Left Foot" approach. Maybe I'll lay the canvas down flat and finger paint. Maybe I'll be a new incarnation of Helen Frankenthaler, pouring on the paint and letting it make its own decisions. Or perhaps I'll get wired up to one of those high-tech visual communication devices that let you draw using just eye movements (amazing but true!).

            And I also know that someday I will not be creating art at all, and a part of me, and important part of me, will be gone.

            But until then I'll keep painting as much as I can, changing – as I change other things in my life – to meet the challenges of ALS. Painting is a release and a therapy and the visual declaration that, no matter what, I am still me. It saves me in more ways than I can say.

Losing the Pieces

I was asked once to describe ALS, and the best I could come up with was this: a continuing series of losses.

You lose strength. You lose dexterity. You lose capability. You lose independence. You lose privacy. You lose, one at a time, little pieces of yourself.

Most of these losses happen gradually, relatively slowly, letting you make changes and adjustments and retain function. You use aids, like fat-handled silverware and zipper pulls and Velcro shoes. You change how you do things: a simpler hairstyle, simpler clothing, painting in big broad strokes –with your left hand.  You need a little more help than normal, and you gladly accept it. You carry on.

Until you can't. All of a sudden, it seems, the aids don't work, the changes are ineffective, and "a little more help" becomes a lot of help – all the time.  All of a sudden, it seems, the hands that were stiff and awkward but, with new tools and processes, functional… are useless. All of a sudden, it seems, the legs that were weak and wobbly but, with orthotics, functional… are useless. All of a sudden, it seems, the voice that was becoming quieter and weaker but was still intelligible… is gone.

And more, and more, and more.

The one good thing – and were really reaching for a silver lining here – is that these "all-of-a-suddens"  don't happen all at once, all over your body. Going away one part at a time is dreadful enough.

As I approach the one-year anniversary of my ALS diagnosis, I am dealing with both graduals and "suddens."  My symptoms first appeared in my right hand, then spread up my right arm. At first I lost fine motor skills, will then gross skills, then the arm was, for all intents and purposes, gone. But I still had my left hand – until it started weakening and stiffening, along with the arm, until now they too have nearly lost functionality.

So the things that I could do while on vacation earlier this summer, just a couple of months ago, I can't do at all: no walking all around town or all through the park; no feeding myself; no dressing myself; no pulling up my own blankets. One day I could put on my own pants, then – hey presto! – I couldn't. One day I had enough strength to get an apple out of the refrigerator, then – poof! – I didn't.  One day my hands and arms were mine, then… they weren't.

Now I face gradual losses in my legs. My right leg wants to buckle and collapse, my right foot wants to drag and threatens to trip me. With a brace-like orthotic, my foot is more stable, but overall strength is disappearing. And on top of that, my left leg has now decided to flag.

How long will they still work? How long can I still walk? When will gradual again change to sudden? I don't know.

And what part of me will be next to go? Don't know that either. I just know that something will.

Because ALS is a continuing series of losses.

And how damned depressing is that?

Telling Mom

I finally told Mother – who obviously understands a lot more than I gave her credit for.

She cried. I cried. My husband cried.

So now she knows. And I feel like shit.

I Read the News Today, Oh Boy, Oh Boy, Oh Boy!

     Did you see the article in today's paper? On the TV news? On the Internet?
     It should have been, as far as I'm concerned, a banner headline story on page 1, the Libya news notwithstanding. It ranks right up there as one of the most exciting news stories I have ever read.
     "Researchers Say They've Found Common Cause of All Types of ALS," says the headline in HealthDay News. "Northwest Study Unveils Clues to  Cause of ALS," says the Chicago Tribune. "Mutations in UBQLN2 cause dominant X-linked juvenile and adult-onset ALS and ALS/dementia," reads the headline, with far more technical detail but way less zing, in Nature, the International Journal of Science.
     Any news about ALS research is cause for attention. Any news about positive developments is cause for celebration – and this news is confetti, fireworks, candles-on-the-cake celebration material, indeed.  This news could change the whole game plan for ALS study. It could – and I can barely bring myself to write this – lead to a cure.
     A research team at Northwestern University's Feinberg School of Medicine, led by pioneering ALS researcher Dr. Teepu Siddique,  has discovered a single biological process that links all forms of ALS:  a flawed protein recycling system in brain and spinal cord nerves. Without efficient recycling of the protein building blocks, neurons become severely damaged because they can't repair or maintain themselves. This causes the nervous system to slowly lose its ability to carry signals to voluntary muscles, depriving the ALS patient of  the ability to move, talk, swallow and breathe.
     "This is the first time we could connect it (ALS) to a clear-cut biomedical mechanism," Dr. Siddique said in a press release. "It has really made the direction we have to take very clear and sharp. We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."
     In a normal state – doesn't that sound wonderful?  Wouldn't it be awesome, in the true sense of the word, if that were achievable? Doesn't it shine a real light of hope on this dreadful, deadly disease?
    For the first time, researchers understand what happens at the cellular level to cause ALS. When you discover what goes wrong, says a researcher at the National Institute of Neurological Disorders and Stroke, only then can you design drugs to make it right.
    So start designing. Immediately. Without delay. Right now. 
    Please…
   
   
      

The Mother-Daughter Talk

     What am I going to do about Mother?
     She has suffered a series of small strokes, leading to aphasia and dementia. Years of severe rheumatoid arthritis have left her unable to walk. Although she recognizes us, family members, friends and caregivers, she lives largely in her own little world.

Mom w/ great-granddaughter, 1996

     It's mostly a happy world.  She is cheerful and friendly.  She loves all the staff at the nursing home where she lives – and they all love her.
     But Mom's world is often several steps removed from reality.  It's never clear if she really understands what you're saying to her.  Her attention span is incredibly short. She doesn't understand and cannot follow directions.  She no longer knows what her call button is for. She falls because she forgets she can't walk and tries to get out of bed by herself.  And while she is mostly happy, she sometimes gets frustrated, agitated and distressed.
     And she doesn't know I have ALS.
     That's not because of any of her problems. It's because of my problem – I haven't told her yet.
     I don't know how. I don't even know whether.... Right after my diagnosis, we decided (myself, my husband and Mom's caregivers) not to tell her right away. My symptoms weren't too obvious, and we wanted to avoid upsetting her.
     She would have been upset, that's certain.  She has already lost one daughter – my sister died in a car crash 15 years ago,  and it nearly destroyed Mom. She said she couldn't imagine anything worse, or more unnatural, than for a parent to outlive a child.   So how can I tell her that she might now  outlive one more?
     I have to. I can no longer hide the fact that there is something physically wrong with me. I can no longer pretend that she doesn't deserve to know. I can no longer ignore the way this pretending is taking a toll on me. I know I have to tell her – I just don't know how.
     I don't know how she'll react. Will she get distraught and agitated and tearful? Possibly. Will my words just roll by unrecognized, their import unabsorbed? Probably. Will some last little bit of my "real" mother appear to hold me and comfort me and share our sorrow?  No.
      That probably explains my reluctance better than anything else. I want the comfort only a mother can provide. I wanted her to pat my hand and say " There, there" and wipe my tears. I want my "real" mother back.
      And I want the real me back, too.

On the Downward Road

     I recently took a turn for the worse, seemingly sudden, difficult and disturbing. It was partly physical, largely emotional, a one-two punch that laid me low. My rose-colored glasses broke into pieces, left behind in Maine, New Hampshire, New York. My post-vacation euphoria burst like a bubble, dumping me deep into depression.
     Luckily, it was not a permanent deep depression, not even terribly long-lived. Bt while it lasted it was piercing, painful, and devastating, for both me and my husband. And the physical changes remain, taxing us both.
     It seems that I lost so much, so very quickly.  I lost so much strength. I lost so much dexterity. Things that I could do on vacation I can longer do.  Help I didn't need on vacation I now need – desperately and constantly.
     I can't wash my hair: Scott has to help every time. I can't dress myself at all: Scott has to do it. I can't pull up my blankets: Scott has to rouse himself from sleep to get me to bed. I can't control my hands well enough to eat more than a few bites: Scott has to feed me. I can no longer pour a glass of milk or get the crackers out of the cupboard or find a slice of cheese in the fridge: Scott has to get them for me. I am no longer steady on my feet: Scott has to help me into my brace every time we go out. And if we're going to cover any amount of ground I get winded and weak: Scott has to push me in a wheelchair.  I'm not driving: Scott has to do it all.
     So there's the problem, physical and emotional all together. I'm doing less, my husband is doing more, and though he handles everything with kindness, love and good grace, I know it wears on him. He has health and pain issues of his own.
     So sometimes I feel hopelessly guilty. I feel like a burden. I feel useless. And when Scott assures me I'm none of those things, I somehow feel even worse.  There lies depression.
    And here's another problem. Sometimes I try to pull myself up out of the pit by thinking of things I can do, things I would like to do. I can still observe. I can still enjoy fun things happening around me. I still like to go places and enjoy events.  But these are not things easy or enjoyable for Scott, because of his pain.
     Then I flip the emotional coin and get selfish.  Suck it up, I scream in my head – I'm the one dying here.  There lies anger.
    Then selfishness and guilt unite, and I'm left with depression again.
     But as I said earlier in this blog, the deep depression was not long-lasting.  We are not always trapped by my needs and my guilt – far from it .  We enjoy each other's company so much.  We laugh and joke and talk seriously and work as a team. But sometimes things just heat up and boil over into frustration, hopelessness, resentment, hurt.
    That's not us, though. That's this damned disease.
    Oh, how I hate it.

Lost and Found in New England

I just had the most wonderful vacation – wonderful because of the time spent with family and friends, wonderful because of the beautiful scenery, wonderful despite all the challenges and problems.

That it was probably my last major excursion – definitely my last time traveling alone – made it very special and particularly memorable. That it was a bucket-list bonding trip with daughter Kay moved it beyond special, beyond memorable, to pretty darned near perfect.

Now, "perfect" when traveling with ALS is far different than "perfect" under other situations. With ALS, it means help from strangers at airports and on airplanes. It means carefully and successfully choosing foods that can be eaten with gimpy hands. It means easy walks instead of stimulating hikes. It means packing a ton of assistive accoutrements, like fat-handled silverware, a suction-cup shower safety bar, a portable raised toilet seat, leg braces, easy-on, easy-off clothing.

Above all, it means Kay.

I would not have taken this trip without her. It was her idea, months and months ago, to take a road trip to Maine: I would fly out to Western New York, where she lives, we'd jump in her car, and off we'd go. I could not have taken this trip without her. Besides being the world's best traveling buddy (oh, we do love the same things!), she was a kind, comforting, good-spirited companion and helper.

Even when I got us lost. Even when this damned disease made me short-tempered. Even when I was incapable, needy, and more than a little trying.  She took everything in stride, making it seem like the most natural thing in the world to wash my hair, help me on stairs, get me dressed, feed me when my hands gave out.

But this trip was not about my infirmities, and it certainly wasn't about turning my daughter into a home health care aide. It was about finding a new and special rapport with each other – which we did. It was about sharing a bond of love – which we did. It was about finding fun – which we did with gusto.

We found my friend Cynthia and her colorful New Hampshire house, complete with in-the-trees sleeping porch and Napa Valley kitchen. We found "Antique Alley" and crafts cooperatives. We found great restaurants. We found towns full of history, scenery, and… shopping! We found some very strange lodging (do not, repeat not, believe all the pictures you see on Internet travel sites). We found spectacular sunsets. We found lobster – steamed, boiled, broiled, whole, in pieces, in sauces, soups, rolls, on pasta, on salads: any way it can be eaten, we ate it – and I give a hearty thank you to those restaurants that served nice big chunks of lobster… out of the shell.

We found Acadia National Park, a place of true beauty and, despite its busy-ness, serenity. We found the free (and green!) shuttle buses that take you nearly anywhere in the Mount Desert Island portion of the park. We found the little boat that takes you to islands and inlets, a lighthouse and an osprey nest (and with great people to help me in and out). We found Jordan Pond, Mount Cadillac, and the famous Acadia pink rocks that look just like the ones I painted from imagination months and months ago. We found that I rate a free National Parks pass for the handicapped – now there's an ALS silver lining. We found that we could have spent several more days, even weeks, exploring this lovely park.

We found Saratoga Springs NY and the opening day of horse racing – on the hottest, most humid day of the year. We found ourselves wearing our fancy hats anyway. A bucket list is a bucket list.

And I found wonderful, valuable, important time on either end of the road trip to spend with my delightful grandchildren and my very special in-laws. Not enough time, true, but wonderful, valuable, and important nonetheless.

So that's what was found. What was lost? One pair sunglasses. One stick-on grab bar. $27 at the track. More of my strength. More of my dexterity.  A whole lot of my personal inhibitions. Some of my fears. Some of my plans for the future. Some of my bucket list goals – a few because now they've been fulfilled, a few because I know that at this stage of the ALS game they never will.

Some of the "lost's "are inconsequential. Some make me sad. Some make me proud. All are trivial when compared with what I found on this trip: adventure, beauty, memories, hope… and love.