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.

Commenting on a Comment

     Thanks, Pollyanna, for your comments about my last posting. You have a good point: what about those people who offer to help, then never do anything, never call again?
     I have a few theories about that. Take your pick.
     Theory number one is that "Let me know what I can do to help" is often just a sort of verbal space filler, like Have a nice day, or How are you. People who ascribe to this theory don't really want to help and certainly don't want you to let them know.  Just thank them and write them off.
     Theory number two says "Let me know what I can do" is a way of throwing the ball back into your court. These people really want to do something but don't now what. So tell them. So call. So ask.
     Theory three has to do with fear. "Number three" people worry that if they do something it will be the wrong something. They worry that offering to help will make you feel worse: more incapacitated , less independent. They fear that they will cry, and that will make you feel worse and that will make them feel worse and etc. etc. Treat them kindly, and they'll return the favor.
      Theory four has to do with fear of a different kind – personal cowardice. These folks are the "I just want to remember her the way she was" bullshit crowd. Run, don't walk, away .
     In my own case, when I hear, "Let me know what I can do," if there is no proof to the contrary I tend to put my faith in theory number two.  And I try to remember to be patient, to be honest, to be realistic. I know my friends are very busy. I know how easy it is for me, doing next to nothing , to let the days slip by without reaching out to people I care for. So I try to cut some slack, and then I try to remember to just pick up the phone.

Asking for Help, Lending a Hand

     A few months back, in a chat with some fellow ALS-ers, a common but difficult topic came up: how to ask for help.
     People with ALS need help -- it's the very nature of the disease. Some of us rely on home health care professionals, but most of us depend on a family member: a parent, a sibling, a spouse. We get used to their help, to asking for it, to accepting it. Outside help is, however, a totally different animal.
     What do you do when someone says, "Let me know what I can do to help"? What do you do when you have a need that is beyond your caregiver's ability? What do you do when you ask a friend for assistance and the friend says no?
     For a few lucky people, the answers to these questions come relatively easily.  They may have a "Wish List" of needs, so that when someone asks, "What can I do?" they have an answer:  Could you check my mail at the post office? Can you pick up some milk for me next time you go to the grocery ? I'd love to try that new Mexican restaurant: would you like to go with me?
     They may  plan for backup or alternate care for those times when their primary caregiver is overwhelmed or over-tasked. They may (they'd better!) know when to call 911.
     For that third question – and this is often a doozy – they may be able to take it in stride and roll with the denial. They may be able to propose an alternative: "I guess museums aren't your thing. How about going to a movie instead – you pick."  They may feel comfortable asking for clarification: "Is there something else you'd rather do, or am I asking too much of you?"
     But those are the lucky ones, the rare ones, the hypothetical, idealized, maybe even imaginary ones.  Not everyone has a network of friends neighbors and family ready and willing to help.  Not everyone lives in a "village."  Not here .
     There is something in the American psyche, especially among people of a certain age, that makes asking for help tremendously difficult.  Maybe it's pride. Maybe it's a reluctance to air dirty laundry in public.  Maybe it's a disinclination to impose.  Maybe it's part of the American frontier heritage, that rugged individualism that makes us say, "I take care of my own."
     If any of these are true, they are especially true when it comes to personal issues, notably health. The fella who wouldn't think twice about asking his neighbor to jumpstart his car or hold a ladder or give advice on a plumbing project would sooner fly to the moon than ask that same neighbor to help lift his wife from the couch to her chair. It's easy to ask a friend to watch the cats for a couple weeks; it's hard, hard, hard  to ask that friend  to watch your husband for an hour.
      And don't even get me started on family. Odd little kinship quirks can become flat out dysfunction when we try to ask family members for help.  When they are supportive, we may fret that we're taking advantage.  When they are disobliging, we get royally pissed.
      Speaking of family, I remember when my father was fatally ill with brain cancer.  He was still living at home, and Motherwas his primary caregiver (with occasional help -- finally -- from a home health aide).  Dad's coordination was profoundly impaired, and he was prone to falling.  When he did, Mother – my poor little mother, nearly crippled from rheumatoid arthritis – would pull and press and strain to pick him up by herself. This could take hours. This could leave them both crying.
     Why in the world, I asked when I found out what was going on, didn't Mom called 911?  Why didn't she call a neighbor, all of whom were close friends, to help?
    She didn't want to call 911, she said , because the whole neighborhood would think there was some terrible emergency. She didn't want to call a neighbor she said, "because that's not what my friends are for." In her world, you suck it up, you do for your own, you keep your problems behind closed doors.
      Isn't that sad ? Isn't that infuriating?    
     And isn't it sad and infuriating and bewildering – and, let's face it, oh so commonplace -- that many of  us insist on following variations of that attitude, that behavior... day after day after day after day?
    

ALS in my Suitcase

      Hitting the road for our recent vacation was fun. Hitting the road with ALS as a traveling companion was… well, let's just say challenging.
     No, let's not. Let's say it was at times difficult, or depressing, or awkward, or embarrassing. Let's say it required extra work for my husband.  Let's say it required extra work for me. Let's say it required a lot of adaptability, flexibility, and patience all around.
     Among the, er, challenges: getting me out of a chair, out of the car, into the shower; dressing me in the morning and undressing me at night; feeding me; getting me to the bathroom in time to get my pants down before I flooded. (TMI? Too bad. ALS is, by definition, TMI.) 
     And more: combing my hair, folding clothes, pulling up the blankets, putting on a coat. Getting my pills out of their bottles. Opening the shampoo. Drying off after a shower.

Aboard the Orcas Island ferry

    Now, most of these things were challenges I regularly faced at home. They just seemed so much more daunting in a new, different environment.

     But it was the new, different environment that made all the difficulties, all the challenges worthwhile. Because it was, indeed, a wonderful vacation. We went places we've never been, saw things we've never seen, met people who were helpful, kind, and thoroughly charming. We ate seafood till we exploded. We saw 16 bald eagles in one day. We saw a herd of Roosevelt elk grazing right beside the highway. We saw spectacular views from the top of Mount Constitution and from the headlands along the Oregon coast.
     We laughed, finding humor in things that could have laid us low.  Tipping over at the Oregon Dunes and unable, in the soft sand, to stand up again; sliding down the dune on my butt until a kind passer-by helped haul me up. Wearing a goodly portion of each meal.  Dragging Scott into the ladies room ("Man on the floor!") to provide needed clothing assistance.
      And we did enjoy many, many problem-free times. ALS was so often very low on our list of concerns, because I can still walk; I can still, in many cases, care for myself;  I can still enjoy a lovely meal, a fun boat trip, a little hike, a beautiful view. I can enjoy finding new adventures with my closest friend: my husband.
      The best thing about this trip, the best antidote to ALS, was that we were together. This was an early wedding anniversary gift to ourselves – who knows what my status will be by October.  So we celebrated by exploring, helping each other, having fun, meeting our challenges -- together.
     We celebrated 30 years of marriage and recalled our vows: We will take each other for better or worse, in sickness and in health, till death do us part.
     And we will have a darned good time along the way.
     Even with a suitcase-full of ALS.

Hello Again

    It has been a long time, but I'm back. For the past several weeks (months?), I have been either drifting on the deep blue sea of despond or bouncing frenetically from one adventure to another. Whichever, my blog has been on the far, far, far back burner. Now it's time to pick things up again.
    I don't think I can cover everything that happened during my blog-less hiatus, at least not in one post. For now I'll just outline some of the factors that led me to abandon something that, really, means so much to me.
     As I said above, I was caught for some time in a severe case of the "glums." My ALS symptoms were increasing, my dexterity was decreasing, and my thoughts about the future sinking lower and lower. I had two bucket list trips on the horizon, and I was so worried that my physical condition would prevent me from either. Driving was becoming more difficult, threatening my independence. My mood swings were increasing to the point where the slightest, vaguely perceived negativity would bring me to tears.
     Then, to add insult to injury, I fell and broke my arm. My "good" arm. This gave me a bitter, bitter taste of things to come: with both arms useless, I was totally, embarrassingly, depressingly dependent. Luckily, my husband handled my dependence with aplomb and good cheer. Luckily, too, it didn't last long: surgery, a plate, and pins shortened my recovery time to weeks instead of months.
     So a quick recovery, rapid response to PT, and the best caregiver ever helped lift me out of the glums. Then – tra-la – it was suddenly time for hyperactivity!
     Time for a visit from my vet-student nephew and his wonderful family: first time meeting the beautiful baby, not nearly enough time to spend with her incredibly smart, ball-of-fire big brother. Next, a visit from my sister-in-law and her husband, my absolute favorites. Touring, eating, talking, more eating – my kind of fun. And then, finally, one of the aforementioned bucket list adventures: a road trip to Washington State and a ferry ride to Orcas Island in the San Juans. I did it. We did it. We had the most wonderful time imaginable. Challenges, yes. But we met them and we truly did have a wonderful time. And now I have every faith that my next bucket list trip will be wonderful, too.
     So -- now we're home. My mood is better, my schedule less hectic, and I now feel drawn back to my blog. Heads up, dear friends. Films at 11.

Fauvist by Default

      In recent weeks, my left hand has become noticeably weaker. This has changed the way I perform a lot of tasks: eating, dressing, and, most notably, painting.

      My latest attempt, a "bucket list" landscape of Orcas Island, is much rougher and more primitive than previous paintings. The brushstrokes in open areas are wavery and swirly, and details are (at best) sketchy. The figures are particularly rudimentary, similar to the partially-filled-out stick figures of a third-grader – although that's pretty much a dis on third-graders.

     Perhaps I was just extra tired working on this particular painting, although I don't recall being so – and I did work on it over three separate days. Perhaps my newly acquired weakness has, indeed, given me a different "style." I'm going to try a couple more paintings, this time portraits rather than landscapes, before I accept this as a permanent change.

      But if it's true that this is now me, painting-wise, maybe I'll take the advice of my friend Debra. Remember Gauguin, she said, who threw over a more realistic approach for intentional primitivism, going for bright colors, flatter perspectives, broad strokes.

     He also moved to Tahiti.

     Not a bad idea….

Talking to my computer

     It's here! It's here! Really: right here, right now. I ordered a voice recognition software program for my computer, it arrived, it's operational, and I'm using it right this very minute.
     Instead of typing on my computer keyboard, I'm talking into a headset microphone. As I do, the words appear on the screen – more or less as I have said them. "More or less" is the operative phrase here: the system is still getting used to my voice, and word mix-up is still rampant.
    (I had planned to publish this post, warts and all, exactly as it showed up on the screen without any corrections. However, there are already so many errors that I can't figure out with the first two paragraphs really say – and I wrote 'em…. So overriding corrections are definitely required.)
     The good news though is that this system actually learns. It adds vocabulary, adjusts to my pronunciation and inflection, and becomes more accurate with every use.
    The question is, will I actually learn?
     First, I have to learn to stop random vocalizations. Um, er, phooey, and oh crap, even if spoken sotto voce, have the nasty habit of showing up on screen, not only demonstrating bad habits and "speaker's block" but playing havoc with what I'm really trying to say.  Second, I have to learn all the verbal commands when to say them, and how. Sometimes I say "delete," and the word delete appears; sometimes I say "delete," and any random word will disappear. Sometimes I can't remember the commands at all, so I and up working way too much with the mouse and the keyboard.
     But I'm already getting better, and my new Dragon is too. Already, even with all my stopping and going and all my needed corrections, this is much easier and much faster than one-handed hunt and peck. Plus, it validates my tendency to talk aloud to inanimate objects: I can holler at my computer and get away with it.

Life on the Roller Coaster



Self-portrait: Elation

      It's been hard -- pretty much impossible, as proven by the dearth of postings -- for me to write anything coherent recently.  I start, in despair, a piece on my trials, tribulations and the all-encompassing depth of my dejection -- only to be struck by a wayward ray of emotional sunshine and a mood shift that swings me from hopeless to hopeful.
     I then launch a post filled with optimism and Peale-ish positive thinking, but gag on the saccharine syrup of a too-rosy outlook and unrealistic cheer.
     It was pretty appropriate, I guess, that a recent outing was to Santa Cruz, home of the famous seaside amusement park. I am a human amusement park these days, going up and down, up and down like a carousel -- or UP and DOWN, UP and DOWN like a roller coaster.
     And I sometimes find myself stuck in the middle, neither up nor down but in some sort of emotional limbo. I don't paint, I don't write, but instead just spend my time spending time: re-reading books that didn't interest me that much the first time around, playing solitaire on the computer, or escaping into multiple and extended naps.

Self-portrait: Despond

     Which are probably pretty good signs of depression, I guess, and probably reasons to check my meds. But I'm bothered more by the upping and downing, the ol' roller coaster.
    And I guess I have reason to be up and down. The good and the bad are happening back-to-back. It's all just part of this crazy disease.
     My most recent visit to the Forbes Norris clinic gave me plenty of good news, plenty of reason to be up. My doctor said my symptoms are progressing more slowly than the average, and that I have plenty of reason to be optimistic about an extended life span. The down part, hiding within the good news, lies in this question: are we talking about just an extended life, or about extended living? Not, as we know, necessarily the same thing.
    More good news at the clinic: my legs are not severely affected as I feared, with the right just slightly weaker and the left pretty darned normal. The stumbling and falling I've been experiencing can probably be alleviated simply by taking more care – and by wearing an AFO brace on my right leg. But the bad news is that it's a brace: another step down the old slippery slope of ALS.

     Good news on the home front is that I'm planning to fulfill several goals from my bucket list. Scott and I are going to the San Juan Islands in June and to see the Minnesota grandkids in August, my daughter and I are going to Maine in July, and my super-duper sister-in-law and her husband (also pretty darned super) are coming to visit in May. I have volunteered my services to the ALSA, I finally started the cover letter to submit my long-waiting tomato book for publication, and I am researching possibilities for art show featuring my ALS paintings.

     But just when I'm feeling so good about all these plans and proposals, down goes the roller coaster in a rush of worry. Will I be able to travel? Will I be a burden to my daughter instead of a companion? Will anything come of my hopes for my art and my book? Are the other things on my bucket list just pipe dreams?

     I don't know. And that's probably where this up-vs-down-vs-trapped-in-the-middle series of feelings really comes from: I just don't know. That is, of course, the hardest thing about ALS, the not knowing. Oh, you know where you're going to end up. You just don't know how – or when – you're going to get there.

    I just want to get there on my own terms. And not by riding a roller coaster.

Silver and Gold

     In my last posting, I said I had been doing little but "lazying around like a slug." Not completely true.  While I certainly have been un-ambitious on lots of fronts, I have been very diligent in maintaining something of tremendous importance: friendships.
     I spent a couple of days in the City with a dear and long-time friend (and I do mean "long" -- she was my attendant at my nearly-30-years-ago wedding) from New Hampshire.  Although we hadn't seen each other in years, we didn't skip a beat, just plunged back into our friendship as if not a day had passed. Calls, letters and e-mails have flown back and forth since, constantly refreshing and reinforcing our closeness.


Self-portrait with Deb and Monarchs

      I had lunch with a long-lost friend and co-worker, found through Facebook. We caught up on work friends, spouses (new, ex and same-ol'), plans, adventures, and, above all, we re-discovered the links that had made us friends in the first place.  Many more lunches are in the works.
     I hijacked my best friend for a road trip to Monterey Bay where we crossed something off my bucket list by seeing the over-wintering monarch butterflies. Even though we were too late in the season for the masses of monarchs I'd been hoping for,  it was still pretty impressive -- and a wonderful girls' day out (plus da kine manapua and spam musubi: ono!).
     I exchange phone calls with friends far away -- pals from our Hawaii days, now in New Mexico; my husband's sister and my heart's friend in western New York -- and near at hand -- former co-workers with whom I have a special, far-beyond-work bond; chance acquaintances who've become dear companions. We plan future get-togethers, we reminisce about the past, we meet for drinks, they come over for dinner, we go off on adventures, we just talk.  They give me support and understanding and hope.
     In other words, we are friends.
     Many, many years ago when I was a youngster at Girl Scout camp, we used to sing a song around the campfire, a lovely little three part round that stays on my mind and in my heart: "Make new friends," it went, "But keep the old./ One is silver and the other gold."
         

Fun and Games with Social Security

     Well, today I had my official appointment with Social Security to sign up for disability and Medicare.  I have to admit, I did not have high hopes.
     My SS experience did not start out well: misinformation, misunderstanding and downright rudeness from reps at my local office, both in person and on the phone.  No, said one during my preliminary in-person interview, you do not get Medicare immediately, ALS or no. Yes, said another, to whom I spoke on the phone trying to rectify First Guy's error, you do get Medicare right away, but only after your disability case has been "adjudicated," which can often take up two years.  Yes, he emphasized, two years, even for ALS: "I've seen that happen often, ma'am."   No, he then argued, most emphatically, I did not ask the question I thought I asked, but the one he wanted to answer. Two years. Absolutely.
    I hung up hyperventilating.
    So, even though I was armed with all requested documents and full medical reports, I was fairly pessimistic about today's visit.  Luckily, I was quickly proven wrong.
    I met with Amy, a cordial, professional and very helpful young woman who offered nothing but encouragement.  She looked through my on-line claim, reviewed the other paperwork I had brought, told me about options, praised me for the completeness and thoroughness of my application and documentation, told me Medicare would automatically go into effect as soon as disability was approved, and assured me my case would be reviewed as promptly as possible.
    She was even very apologetic when she explained the time frame for review: I may not get a notification for as much as 120 days.
    Some two years.
    A couple of tips for SS staff everywhere: 1) try to be like Amy, and 2) never, never tell someone with ALS they have to wait two years for your help. They may not have that long to live, and your insistence amounts to nothing less than cruelty.
  

I'm Back.... With New Tools

I could say I've been too busy to write lately, but that would be a big, fat lie. Mostly, I've been just too blah. I've been lazying around like a slug, thinking a lot, accomplishing little: sad some days, happy on others; planning for a future that may or may not happen, worrying about a future that almost certainly will.
     So I am hereby officially kicking myself in the butt and launching a new take-good-care-of-myself regimen (part of which will certainly include lazying around, but in a more positive vein).  And taking care of myself involves using, as Mr. Natural once said, the right tool  for the job.  Here's part of my list of new tools -- feel free to steal ideas:
     1. Get a voice-recognition software program.  One reason (excuse?) why I've not been blogging recently is that it's just so darned hard to type.  So I've been checking out websites for Dragon NaturallySpeaking and Windows Speech Recognition.  Dragon appears to be winning.  I'll keep you posted.
     2.  Update my bathroom.  I'm still independent, able to shower and take care of myself pretty well, but some tasks are becoming more difficult.  New tools to the rescue!
     Most of my ALS symptoms are centered in my hands, arms and shoulders, and it has become very difficult to wash my back, even with a brush.  So here's my new trick: two stick-on hooks, one pointing up and one down, with a loofah or net back scrubber stretched in between at back height -- Rub back and forth like an ol' bear against a tree. (Does a bear loofah in the woods...?)
     Since getting dry is as important a part of showering as getting clean, I'll invest in some microfiber towels.  They are super-absorbent and super-fast, and new styles no longer look like car-drying cloths!
     3. Find the sock-putter-onner.  Socks are the most demanding part of getting dressed (besides bras, but that's another, non-bloggable story), and I know my husband's sock tool, remnant of an old back surgery, is out in the garage somewhere.  "Somewhere" being the operative word.
     4. Use foam build-ups for my silverware.  I've been reluctant to add those dorky-looking foam tubes to my utensils, but I now realize that nothing would look much dorkier than the way I'm eating now.  Soon: bendable spoon and fork.
     5. Buy paint brushes with fatter handles.  Painting has been such good therapy for me, besides being fun.  Since my right hand is pretty well out of commission, I am painting left-handed --very clumsy.  Big handles mean better grip, means more control, means (maybe?) better paintings.
     6.  Buy an electric lift recliner, perfect for the above-mentioned lazying around.  Oh, I can still get up out of my chair now, but it's a real challenge, what with my fubar-ed hand and arm, to move the recliner lever.  Besides, my current chair is showing signs (and making sounds) of wearing out, so let's plan for the future, replacement-wise.
     7.  Buy sensible shoes.  Oh, this breaks my heart!  I love my girlie-shoes: high heels, pointy toes, ankle-wrap sandals, ballet flats.... But I'm starting to get wobbly, so it's time for Clark's or Aetrex or Softwalk. Harrumph.