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.
Saturday, July 9, 2011
Thursday, July 7, 2011
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?
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?
Wednesday, July 6, 2011
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.
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.
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 |
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.
Friday, June 24, 2011
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.
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.
Monday, April 4, 2011
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….
Monday, March 28, 2011
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.
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.
Saturday, March 26, 2011
Life on the Roller Coaster
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.
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.
 |
| Self-portrait: Elation |
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 |
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.
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