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.