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.