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….