Christmas Time on The Planet Aphasia

Greetings! 2010


It’s that time of the year again when thoughts of sugar plums and Santa’s elves and of scoring that great gift at Macy’s fight for space in our dreams with the real meaning of Christmas. We put trees up in our living rooms, deck the halls with holly, and hang evergreen wreaths on our front doors as tributes to the season. And along with all the other traditional things people do to commemorate the birth of Jesus and the spirit of giving, we exchange good wishes through the ritual of sending Christmas cards and letters.

Out of ideas this year for our Christmas letter, I consulted one of those online how-to-write-Christmas-letters sites and got depressed after reading that most people get 20 to 30 newsletters over the holidays. Woo is me, Don and I don’t get any where near that many. Pushing past that disappointing fact, I learned that you’re not supposed to brag in your annual written greetings. Shoot! That means I can’t tell you that I finally made a valiant effort to learn how to cook this year and along the way there hasn’t been a single fire in the kitchen.

Other specific suggestions found on the web for writing Christmas letters were:

1) Tell about births, deaths, marriages and moves. We have nothing new to report on those topics unless we can count the infestation of box elder bugs that moved into our south-facing siding last fall. I must admit, though, that it crossed my mind they’d make a good source of protein. But the Food Network didn’t have any recipes for box elder stew so I gave up on that idea rather quickly. Instead, every morning for a week I vacuumed those evil insects off the house while the dog tortured a few of them to death.

2) If you live in an unusual place, have an unusual job or took an unusual vacation, write about it. In the land of Don and Jean there are no jobs. (Retirement is a great perk of growing older.) Nor did we take an exotic vacation this year unless we count going down the international foods aisle at Meijer for the first time. Who knew it was there all along?

3) Tell about the best book you read this year. You’ve got to be kidding! Do people really put that sort of thing in Christmas letters? Just in case that’s true, you should know that I joined a book club this year and that I’m lusting after an i-Pad so I can read in bed like I used to do in my single-hood days. Next year, to spice it up, there’ll be a book report in our Christmas letter---or perhaps a review of the King Arthur Flour catalogue.

4) Tell about something cute the kids did. As you know we don’t have children to do cute things but the dog should count as our surrogate son and Levi likes to track bunnies in the back yard hoping to find the “chocolate” nuggets they leave him for treats. He’ll be three years old next month and he’s still bringing laughter and “oh, yuck!” moments into our lives.

5) Share little hints for making life easier. Seriously? Who does THAT in a Christmas letter? Okay, there’s always a first time for everything. Here’s my hint: When browning a roast in a cast iron Dutch oven don’t forget to take that blotter of white paper and plastic off the bottom of the meat. Burned plastic is so hard to remove from piping hot pots.

6) Keep it light. The holidays are supposed to be happy. Oh, sure. That’s an unrealistic bit of advice for writing Christmas letters. What if your best friend died, you lost your job and the universe is spinning out of control? What if you’re measuring up a refrigerator box to live in because your house is in foreclosure? Thankfully, none of those things are true for us this year and hopefully all our friends and family reading this letter can say the same thing.

7) Know when to quit. Don’t write more than one page. That must mean it’s time to say Merry Christmas and please accept our best wishes for a wonderful 2011!

From Jean with love from all of us---Me, Don and Levi the schnauzer

Lint for Breakfast

Why do old people pick at lint? When my husband’s mother was in a nursing home she would walk the halls and pick up every piece of lint on the floors. It was a hobby or an obsession, I could never figure out which. Now, my husband is doing the same thing. Where ever he sees lint, he picks at it….usually when he sees it on me. Okay, so I’m not the queen of good laundry habits. I forget to check pockets and I sometimes wash Kleenex and we all know how that works out. But I do my best to remove the evidence of my laundry day crimes before returning the clean laundry to the closet. What Don picks at are the little hairs that fall when you brush your hair or the nearly microscopic stuff that only a person on a mission can find. It drives me crazy!

Yesterday I reached my limit of lint picking and I---well, sort of raised my voice at Don.

“Quit picking! We’re not chimpanzees who need to pick fleas off each other to control the little ugly insects from eating our flesh off. Lint is harmless. I like lint! God, if anthropologist Jane Goodall studied old people like us she’d have a hard time telling us apart from a couple of orangutans in the wild! Next thing I know you’ll be eating my lint for breakfast!”

He looked at me like I’d turned into Linda Blair in The Exorcist. I checked the floor. No, there wasn’t lint filled, green vomited all over the place. I was still me and I had just yelled at a man who was only trying to help me primp---ala monkey style---for a graduation party we were going to. So I did what I always do when I’ve made a fool of myself. I tried to turn my anger into humor. Scratching my ribs cage and doing my best imitation of chimpanzee chatter, I shuffled off as if nothing unusual had just happened. ©

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The Joyful Living Party

Don's 'Ten Years of Joyful Living' party was a week ago today. The flowers that one guest brought and the others we had scattered around the house are fading but the glow of happiness is still hanging around. It's been ten years since his stroke and even with all my husband's physical issues, he's still happy to have beaten the prognosis of two neurologists that he'd be a vegetable for the rest of his life.

Every survivor of a major health crisis should have a 'Thank God I'm Alive' type party. It gives people an excuse to tell you how important you've been in their lives and/or it gives your guests a chance to stop and be thankful for their own good health or for having overcome obstacles in their own lives. We heard a lot stories like that. And people shared their memories of happy times spurred on by old photographs they brought. The party was filled with laughter from start to finish. One good friend brought a CD he'd made of music that was representative of hunting trips he, Don and another friend had taken out West. We also have a new metal sculpture of a crane standing next to our cattail bog where he can remind us every morning that it's great to be alive.

I told Don if he ever wants another party it's going to be catered in a restaurant. It was a lot of work to throw a party for 41 people all by myself and I'm just not a person with a lot of kitchen or party planning skills. The one thing I didn't worry about at all---the individual cakes I'd ordered and paid a fortune for---turned out to be the only part of the party that I was disappointed in. They looked great but were more frosting than cake inside. But even that became symbolic of the past ten years because in the aftermath of anything that goes wrong in life, you've got to let go of the little stuff and concentrate on what went right, what is really important in life. And in this case, too sweet cake is 'little stuff' compared to the people who cared enough to make time in their busy lives to come celebrate Don's life. That's huge and we're grateful for that.

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Sourpusses and Something to Laugh About

For the past three or four years I’ve been telling everyone that I’m almost seventy when, in fact, I’ve still got two years to go before I effortlessly float into Septuagenarian Land like a feather on the wind. At least that's the plan and, no, I don’t have a propensity for lying. I’m just trying to avoid the depression of achieving that benchmark that my mother went through on her 70^th birthday. I figure after the long prelude I’m giving myself to becoming a septuagenarian, I’ll be so used to saying the big S word that I won’t even notice that on my 70^th birthday I’ll be just around the corner from death. Yes, Virginia, youth is wasted on the young.

They say that laughing every day keeps you young. Okay, I can do that but I ran into an older-than-me woman the other day who probably hasn’t cracked a smile in decades. I had stopped at a VFW roast beef dinner that is popular with the after church crowd in the area and just before I got to the first course in the cafeteria style line, the woman cut in front of me and brought three other people with her.

Looking down her nose at me, she said, “You’ve been here before so you can go to the end of the line.”

“No I haven’t,” I replied. “I just got here.”

“Really? Well we’re here now,” she shot back, “we’re not moving.”

As I contemplated the fact that I’d just been treated like chopped dog food, her husband whispered an apologized for her behavior and I was washed in sympathy for the man. She’d probably been acting like a prick her whole life and he’d been humbly mopping up after her since their marriage. They’d obviously just come from church which got me to wondering what that woman did when the minister is giving his sermons. Does she mentally make out her grocery list when he’s talking about love thee neighbor and other Golden Rule type anecdotal stories? Does she visualize the choir director in his underwear? Love, peace and fellowship---what the hell do those things mean to a woman who acts as if rudeness is her God-given right?

I didn’t say it, but it put a smile on my face to think about what I should have said to the sourpuss, line cutting church lady. I should have said: “That’s okay. Octogenarians like you are always in a hurry since you’ll be meeting your maker any day now. Me, I’m still a sexagenarian so I’ve got more time here on earth.” ©

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Word Count in the Land of Aphasia

The sun is shining; my husband is singing songs with made-up words. He and the dog are both sunning themselves in the strong light filtering through the windows in the dinning room. Hopefully, the snow will melt this week and spring will flirt its way into our lives.

It’s been a long winter and a long time since I’ve cataloged all the words Don is able to get out in a day. I do it with the changing of the seasons as a gauge of his aphasia and apraxia issues. For years the count was around 25 unprompted words per day. It’s not much higher now if you don’t count repetitive phrases and his songs without real words. He’s good at both in these days nearly 10 years post-stroke.

A couple of hours a day he sings his moods in syllables like: la-la-la, bom-bom, dedum-dedum, woo-woo-woo over and over again to melodies that are sometime recognizable but usually not. I call it his Celexa Happy Hour. Yesterday we ran errors plus got haircuts and stopped off for lunch and everything the hairdresser or waitress said was greeted with a song. A happy song that made us all laugh. As I often do at times like that I joked that I need to cut Don’s anti-depressants down. Not that I'd actually do it. Singing is so much better than crying and those of us in the aphasia community all know a few stroke survivors who can’t stop the inappropriate tears.

Here’s the list of Don’s unprompted vocabulary from yesterday:

Oh man! (Said 23 times; one of Don’s favorite phrases.)

Man! (3 times)

Willy Kins (5 times; a phrase he says often and is suppose to be Gee Willikers.)

Yes (51 times)

No (7 times)

Oops (3 times; another common word in Don’s vocabulary, often used to narrate other people’s mistakes.)

Ten minutes (1 time; he was trying to buy time before starting a sponge bath.)

Five minutes (1 time)

Oh Shit! (5 times; and it has several meanings from happy to outrage.)

Six, seven, eight, nine (Said 6 times. He counts the number of tries it takes him to get up from his wheelchair to transfer to the car, toilet, lift chair or the bed. One through five is often counted silently in his head.)

What? (23 times; occasionally said with humor when he gets caught doing something he shouldn't be doing, but usually it’s a hearing issue that makes him say it.)

Hamburger (1 time)

Come over (2 times; Don asks everyone he meets to come over---this time it was our insurance agent.)

Signs, signs, signs (2 times; theses words are used to with gestures to describe Don’s collection hanging on three walls in the garage.)

Teaks? (1 time. Suppose to be antiques. This is what Don says when he wants to know what channel Pawn Stars or American Pickers is on TV. His latest favorite shows.

Dog! (2 times. He wanted Levi to come help him get his socks off at bedtime.)

That’s it----one day’s worth of 'conversation' with a person with severe aphasia and apraxia. But those of us who live with someone with a language disorder know a word count only tells half the story. The other half is the gestures and endless games of ‘Twenty-One Questions’ we play. Enough already, I sometimes think at times like that, my brain hurts! But of course I don’t say that because some words are better left unsaid, especially on the Planet Aphasia. ©

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Voices Inside my Head

Sometimes I swear Levi, our dog, can telepathically talk inside my head. This morning I woke up to someone calling my name and when my eyes opened all I saw was my husband sound asleep. I listened for the voice to call my name again but the house was silent. A dream, I thought, but it was so real---and so annoying because it’s a common way for me to wake up. I rolled over and there he was, smack-dab in my face, his little eyes peering over the top of the mattress. “Finally!” Levi seemed to be saying, “I need to pee.” The creepy part is the dog also seems to be able to tell time. It was nine o’clock. It’s always nine o’clock---on the dot---when I wake up this way.

How much easier it would be to live with someone with aphasia if we all had the ability to use mental telepathy. There are times when I think I can read Don’s mind but, of course, it’s not always possible to know if I’m reading him correctly. People often comment that I’m quick at figuring out what he wants to say. It doesn’t always seem quick to me. Sometimes, though, Don has repetitive themes he tries to talk about which make me seem more skilled at deciphering his speech than I really am. Sometimes it’s just knows a person for decades that give a spouse the edge in the game of peek-a-boob-words. (Come out; come out where ever you are! Talk to me!)

Don and I are lucky in some ways. His limited vocabulary is made up of nouns, which makes it easier to decipher his wants and needs. I feel so sorry for those people with aphasia who are stuck on the tiny filler words with no real meaning---or who have slurred or hard to understand speech. And of course those of us in the language disorders community know a few people who are stuck on the emotion driven swear words. Don is pretty good at swearing. He usually sings his ‘fucks’ at least one a day. It’s the only word I wish he wouldn’t practice.

Once in a while I’ll go to a stroke support website where I’ll read a few posts by spouses of people with aphasia. I’m always amazed at how little some of them seem understand about the disorder. The complaints about husbands who don’t say ‘I love you’ anymore bother me the most. I’m not talking about a caregiver longing to hear the words---we all do that from time to time. I’m talking about caregiver resentment because they think the words are being withheld on purpose. I want to scream at the computer screen: “Maybe he can’t get the words out anymore!” There could be a half a dozen reasons why the words aren’t forthcoming after a stroke.

I remember when we first started speech classes after the stroke and the clinicians would try to cue Don to say ‘I love you’ to me. He’d give them such dirty looks and I was sure I could read his mind. It was like he was sending me a telepathic message that he damn well wasn’t going to say those words just because some little girl fresh out of college wanted him to, even if he could have gotten them out of his aphasic brain. He was never the type to throw that phrase around lightly and never in front of strangers.

The first time when he actually did say ‘I love you’ after the stroke he was five years out and it was totally unprompted. He was sitting at the dinner table with a silly look on his face when the words came out of no where. I was shocked and it was the most heart-felt ‘I love you’ I’ve ever heard. He hasn’t said it since then but it doesn’t matter. Every day I hear voices inside my head and I’m sure they are coming from both Don and the dog. Mental telepathy is a wonderful thing. And if by chance mental telepathy isn’t real…well, I guess I’m just making up the words I want to hear. ©

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Lunch in Aphasia Land

It was a cold but sunny and beautiful day when we backed out of our driveway. Destination: out for lunch and to the post office. I asked my aphasic husband where he wanted to eat and as he often does he replied by using hand gestures to indicate the turns I’d have to make on the way to wherever it was he wanted to go. Those turns with varying lengths of straight-aways all gestured with appropriate sound effects for braking and speed didn’t help me understand. I named five or six of our favorite places and each time he’d say ‘no.’

“Have we been there in the last week?” I was trying to narrow down the field of choices.

"No."

“Have we been there in the last month?”

"No."

" In the past six months?”

“Yes.”

Oh, great that helped a lot. “Oriental?” I asked and I got a ‘no’ in return. The same negative response came for pizza, steak, Thai, breakfast, and hamburgers. At this point Don drew the type of food he wanted using his finger in the air.

“Square food? Toast with bacon and eggs?” I asked completely baffled by this latest clue. “Am I going the right direction?"

“No. Yes. No. Yes," he kept repeating. You'd think after all this time I'd learn not to ask more than one question at a time.

“Fine,” I replied. “We’ve got a full tank of gas. I guess we’ll get there before dinner." I was headed for ‘restaurant row’ a place where there are million places to eat within a five mile stretch. Eventually he gestured for me to turn into a shopping mall.

“Pee,” Don said which translates to: “Find me a place around the back where I can use my urinal.”

“Not today,” I said as I turned in. “You’ll have to make an appointment for tomorrow. I have an opening at 4:15.” I always give him a hard time about his ‘pee’ commands and he usually laughs at my tired jokes when I tell him things like he’s reached his quota of pee times for that day or last call for peeing was a half hour ago. Once I told him there is a cork in the glove compartment, "Use it!" Sometimes I even shock myself with what comes out of my mouth. Around the back of the mall, I stopped near a sign post hoping if someone comes along afterward they’ll think the yellow circle in the snow came from a big dog with a bad aim.

I got back on ‘restaurant row’ where eventually Don directed me to turn into the parking lot of a Mexican restaurant. I thought back to the clue he was trying to give me with his finger drawing in the air. Square food? What do they have at a Qdoba's that is square? I finally decided that he’s finger drawing dyslexia and he meant to draw a circle for a taco salad which is what he usually orders. But in reality it’s not unusual for people with aphasia to come up with what I call false clues. In their brains they are searching for the right word or gesture but all they can come up with is a category of similar words, one of which is the word they are trying to communicate. Round, square, triangle---they’re all shapes and ‘square’ was the only word Don’s aphasic brain could express on Saturday when we had lunch in Aphasia Land. ©

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Wayward Husband

When my brother was a toddler my mother kept him in a harness with a leash attached much like the modern version in this photo. The only difference was my brother’s leash was a lot longer and using them on a child back in the 1940s didn’t raise eyebrows like they occasionally do now. No one called them ‘cruel’ or ‘demeaning’ or thought they stifled a child’s nature curiosity. My brother needed to be leashed when my mom took him shopping. He was always getting into trouble doing things like prying up floor registers to shove the cat into the ducts. Once when he was three he got up early in the morning, stripped off his pajamas, put his Robin Hood hat on and went for a walk stark naked. A police officer brought him home to my still sleeping parents.

I was reminded of all this today when I took my husband to the bookstore. It’s one of those large yuppie places with a Starbucks inside and overstuffed chairs where you can curl up in front of a fireplace to read. It’s one of our favorite Sunday morning stops and I don’t ever want Don to get banned from the place like he was from a grocery store in the area. I knew we were headed towards trouble when we got to the door and several customers coming out held the double doors open for us. Don, in a deep bellowing voice yelled, “Oh boy! Oh, boy!” In aphasia speak that’s as good as saying, “Thank you for your kindness.”

As I often do when we go some place where he really wants to go I reminded him that he needed to use his inside voice and he sang his Okay Opera back at me: “Okkkkaaayyy! Okayyyyy! OH, oh, ooooh kay.

“Next time we’re planning to come here,” I teased, “help me remember to cut your antidepressant in half.”

He wanted a coin magazine. We found him a coin magazine. He wanted to look at a book in the art section. We found him the book. All the while he’s ‘oh, boying’ this and ‘oh boying’ that at the top of his lungs. People are looking at us. Don didn’t care. He was the center of attention and he loves that. I was thinking maybe next time we come to the bookstore, I’ll take Don’s antidepressant.

Finally I decided to take him to the coffee shop, get him a cappuccino so I could go off to the bathroom and maybe browse a few books along the way. When I came back Don had managed to table hop his wheelchair over to where two girls in their twenties sat.

“Are you lost?” I asked him.

“Beautiful, beautiful” he replied as he pointed to each girl in turn as if he was introducing a Marcia and Mary. Then he pointed to me and I held my breath until he said, “Wife.” He’s never done it, but someday I half expected him to introduce me as ‘homely.’ But his language problems still have him categorizing all women as cute or beautiful and he doesn’t hesitate to let strangers know which category he’s files them in.

On the way home I decided that rather than a leash hooked up to the back of Don’s wheelchair maybe I’ll see if steering wheel locks will work on wheelchairs. If they do I could say, “Sit, stay!” knowing when I come back my wayward husband will be right where I left him. ©

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My Facebook Page

It's a new year and with it came a promise to myself to get more active on my Facebook page. I’ve never particularly enjoyed or understood Facebook. I want layouts and colors to play with. I want more room to ramble. And I don’t like strangers showing up in lists of suggested friends. That’s creepy! But Facebook is Facebook so I decided to take the proverbial bull by the horns and figure out why it’s so popular.

After opening my Facebook page, I sat in front of the computer screen a full five minutes before my fingers made contact with the keyboard. And what came out after that long contemplation?---something thoughtful or deep to put on the ‘what’s on your mind’ line? No. My fingers typed: Why don’t angle worms freeze to death in the winter?

Where those words came from, I don’t know. I get loony that way from time to time, but the words were “shared” before I could think of something less lame to say. I waited. I waited fourteen hours and none of my 23 friends had an answer for me. No reply of any kind came back! Not one person was concerned for my mental health or for the worms outside in the frozen Michigan winter, for that matter.

I’m not a patient person so googled my question and to my shock there really is an interesting answer. “Angle worms,” according to John Johnson, “will begin hibernation with its tail in its mouth. It will then eat itself through winter right down to the last digestive tube. A 3-inch angle worm will decrease down to 1/4" over those months. Leaf worms, on the other hand, hibernate together in a large mass which looks like the inside of a golf ball.”

I’d share my new found knowledge with my Facebook friends but angle worms have survived for centuries without human sympathy for their dietary needs in the winter which leads me to my the other New Years Resolutions. Lose some weight. How I can type that resolution with a straight face while munching on a piece of Hershey’s dark chocolate is beyond explanation, but doing so has given me an idea: We can learn from the angle worms. We can live off our own body fat. So tonight when I go to bed I’ll attempt to sleep with my toes in my mouth. If I can extract some fat off my body to sustain me though the night I will finally have a reason to like my Facebook page. After all, it was because of Facebook that I came up with this bright idea. ©


John Johnson's full article on angle worms.

Another New Year, Another Resolution to Break

I started keeping diaries when I was seven or eight years old and I didn’t stop my daily recordings until I was in my late twenties. I guess I thought I’d grow up to be someone famous like my ancestors---James Otis Jr., Mercy Otis Warren, or Amelia Earhart---and in the distance sea of humanity someone would care about the naïve and disjointed ramblings of my youth. I’m nearly seventy now and I’ve barely read about the American Revolution let alone done anything as history book noteworthy as James Otis, a patriot and friend to Thomas Paine. Nor have I ever been pen pals with someone as famous as Abigail Adams or written anything as important as the first history book on the Revolutionary War like Mercy Warren did. As for Amelia, aviator extraordinaire---God, I’ve been afraid to get on an airplane every since I did it once and survived the ‘trauma’ back in the 60s. And the most adventurous thing I’ve done in recent years is to walk down our hilly driveway after an ice storm to get the mail. I’m such a disappointment to the little girl still deep inside me.

Even after I stopped writing daily diary enters I’ve still been relatively faithful about doing a list of New Years resolutions at the beginning of each year with a few paragraphs added updating my life’s journey This is my 2010 entry:

I woke up New Years morning with a dream still hanging on the edge of consciousness. I was lost and looking for an apartment where I lived. Being lost has been a life long reoccurring dream for me. Sometimes I'm in a school and I’m late for class. Sometimes I’m lost in the streets looking for my purse. Sometimes I’m lost and looking for a door out of a house of mirrors. There’s a dozen versions of my ‘lost’ dream. They say that being lost in a dream is really about the anxiety of leaving something familiar behind or about losing something of value. I can buy those theories as an explanation. But sometimes I have dreams that keeping me thinking all day long: Where the hell did that come from!

What made my New Years dream so different from the generic versions is what I was carrying around. While I was lost and looking for where I lived I ran into someone who asked me to baby sit their newborn. I said “yes” and then ducked into a copy center, stuck the baby in a copy machine and made myself a living, breathing baby of my own. Always a detail person, even in my dreams, I put a check mark on the forehead of one of the babies so I wouldn’t get the copy mixed up with the original then I continued on my way, looking for where I lived. Okay, I don’t know why I’m recording this for my infamous hereafter but what the heck, I’m old so I can get away with doing irrational things.

Now on to my New Years resolutions, most of which are pretty universal: Lose weight, get more physically fit, and finally get an accurate count on the number of legs on that centipede who lives under our filing cabinet. In addition I’d like to get back to blogging more often because I’ve always found writing to be therapeutic, and I’d like to stop hanging around a particular political forum that has been taking up a lot of my time this winter. Being there is like being thrown into a modge pit full of angry Hell’s Angels and that’s no place for an elderly woman carrying around a cloned copy of a newborn baby with a check mark on her forehead.

Happy New Year!

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