MacArthur Park: Lamenting the Loss of Language

"MacArthur's Park is melting in the dark
All the sweet, green icing flowing down...
Someone left the cake out in the rain
I don't think that I can take it
'cause it took so long to bake it
And I'll never have that recipe again
Oh, no!"

I could throttle that guy---Jimmy Webb----who wrote those lyrics. I've spent so much time in my life trying to solve the mystery of 'who left the cake out in the rain' that I've about worn out my Dick Tracy badge and Nancy Drew books looking for clues. Why did they take a cake to the park in the first place? Was it an innocent sweetness for a picnic or a hippie generation, drug-laced concoction? Was the cake a metaphor for crushed love? Did the song writer make a bet with a friend; a hit song about a cake, no problem! Was the song about the Vietnam War and the green frosting meant to be the causalities suffered by our soldiers? Did Jimmy compose that song in a music composition class, like the rumors say, or were the lyrics written in a blur of drugs and alcohol with no meaning what so ever? I want that song dumbed down for me, so I can quit worrying about the damned cake in the park!

Puzzling out the mysteries of MacArthur Park was actually good training for living with my husband's language disorders, aphasia and apraxia. If I hadn't pondered the cake in the rain every time I've heard that song played, would my brain be able to get around something like understanding that "butt fold" translates to "button my shirt?" Would I comprehend that "want piece" is not a request for sex but a man seeking help putting on his shoe? Without MacArthur Park would I know that "Sha-ming!" means Don is doing his happy dance? My hippie era---my search for truth in language---everything in life comes back around again like horses on a carousel. Being a speech affect stroke survivor is like starring in a silent movie and I, the spouse of one, am the organ player sitting in the darkened theater struggling to keep up with the action on the screen.

A synonym, a single word standing in the darkness of a cave with not one candle to aid as it searches for a way outside and onto my husband's lips. A metaphor, a monster in a cage grabbing for the cake just outside its reach. We search for clues in our pasts---like that cake left out in the rain. Nothing makes sense. Nothing seems fair. And Don is desperately trying to hold on to something that is flowing down like green frosting in the rain. "I don't think that I can take it, 'Cause it took so long to bake it"---a lifetime of building speech. But Don and I do still have the recipe. It's in my Aphasia Decoder ring, our shared history. Our walks in the park that allows me to translate many of the thoughts stuck inside his aphasic brain.

My heart mourns for the stroke survivors who are too afraid to wade into Frustration Lake and find their own lost decoder rings sitting at the bottom, in the murky water. My heart mourns for the loss of easy communication. A million people! A million people walking around with their words stuck in the Cave of Aphasia, their ears pressed up against the wall listening for their rescuers to break through the dark before their breath is gone.

I may never learn the true meaning of MacArthur Park. The myths about the song are so old and plentiful that they have become 'the truths' from having been repeated so many times. But if I do puzzle it out, I'll turn to solving another mystery that haunts me on those rare occasions when I'm in the car on the way to having fun: 'who let the dogs out?' ©

by Jean Riva

Jean's main passion in the writing world centers around educating the general population about stroke related language disorders, caregiver issues, widowhood and growing older---often using humor to do so.

The Shower Stall Mystery Dateline: Caregiver City, Planet Aphasia

 This article was first published at Yahoo Contributors but they are going out of business and the rights have reverted back to me. So if it seems out of order to the rest of the content in this blog, that's the reason.

I wonder if there are any statistics on how many female caregivers stop shaving their legs when we have to start shaving our husband's faces. Time constraints are as good as any other excuse for our apathy about not shaving what can be hidden with slacks or for not applying makeup and perfume. I can't remember the last time I took a leisurely bath where I had the time to lather up my lower limbs and run a razor up in smooth, slow strokes like a model in a Gillette commercial. While helping my husband, Don, in the shower today these were the thoughts that ran through my head as I looked down at my legs expecting to see the natural, European look. I was shocked to see they are bald as a proverbial billiard ball. Oh, ya, I forgot that menopause takes the hair away and it doesn't come back.

I've been shaving Don's face since he went on the blood thinner, Coumadin, even though his occupational therapist wants him to do all his own grooming. But he's so clumpy shaving left-handed and it's really hard to make time for extra trips to ER. Besides, we have a new wheelchair accessible bathroom and the color of blood would clash with the décor and if I let Don do it all on his own, our water bills would be around five hundred dollars.

Our shower routine: I help Don transfer into the shower, shave his face, scrub his back, and pull the curtain closed so that he can do the rest of his shower alone. Then it starts---those sound effects, the kind like Meg Ryan made in her famous movie scene where she's faking an orgasm in the restaurant. The first time I heard Don moaning and groaning I thought, "Oh, God, he's having a private moment and I'd rather not know about." This went on with every shower for a couple of weeks before a voyeuristic moment made me slowly draw the shower curtain back to peek inside. There sat Don, eyes closed, doing his moaning and groaning routine only he wasn't---well, you know what he wasn't doing. He was shampooing his hair! I can be so slow on the draw. It hadn't dawned on me that all Don was doing was an imitation of the shampoo commercial that is imitating Meg Ryan's orgasm scene.

Time to dry off---Don does it all but his tush. But I'm on the creams and ointments committee, so I have to be there. I start with his feet, and work my way up. I apply the Naftlin gel for the toe nail fungus he picked up at the hospital and that his diabetes doesn't want to give back. Next comes the Nystatin for jock rash. That was fun the first time I had to have Don's doctor look at that---all three of us with our noses practically down in Don's crotch. The doctor tells me it's common for wheelchair bound guys to have a perpetual case and it won't go away without air. I've tried to get my husband to sleep commando, but he picks this stage of his life to get modest. Men! Go figure.

Next I apply a coat of Betadine antibiotic to the bruises and scratches on his paralyzed arm that are caused by our lap sitting dog and the Coumadin. Someday I'll probably get investigated by Social Services and I'll have to prove that the bruises are not caregiver abuse---hey, maybe I should knit the dog a set of booties. At this point in Don's routine I think, "Did I miss anything?" No, Don is applying his Stetson antiperspirant to his left arm pit. You should have seen him the time I brought home another brand and his aphasiac brain couldn't tell me in any other way but to throw it across the room day after day until I figured it out. His vocabulary is around twenty-five words and "don't buy this crap anymore" isn't one of his working phrases.

Following the left arm pit, comes his right arm pit royal ritual. No antiperspirant here or the fungus will start back in again. No air gets to the pit when you can't move an arm. So, it's ten powder puffs full of Johnson's Baby Powder. Not nine. Not eleven. I tried explaining the danger to our lungs of inhaling that white cloud in the room but for some reason, Don's aphasiac brain counts everything in tens. Now I just hold my breath and hope that he doesn't pick bath time to start learning to count to a higher number. And people wonder why we take two hours to shower.

After our showers today, we got distracted by a fat cat with long brown hair and four white feet who was stalking the neighbor's bird feeder and all three of us---the dog, Don and me---stopped what we were doing to watch until the cat got bored and lumbered across our back yard. The three of us followed his path, going from window to window until the cat caught Cooper's eye and they tried to stare each other down. The cat won.

Being Saturday, we headed into town to go to our favorite restaurant for omelets. I parked in the last handicapped space, transferred Don to his chair and when we got to the door a waitress barred the way and told us they were doing some painting over the weekend and were closing early.

"If you had just gotten here five minutes ago," she said, "We could have served you."

On the way back to the car I was cursing the cat in the yard and promising Don I'd shoot the darn thing the next time I see it. Damned cat cheated us out of our omelets! Don, he started yodeling at the top of his lungs. The man can't talk but he still finds ways to made fun of me when I get into one of my titters.

We drove to our next favorite restaurant and as I lowered the wheelchair with its Bruno lift, it got hung up on the trailer hitch. While I was trying to decide if there was a beefy guy near-by to help, Don was sitting inside the Blazer joyfully teaching himself the four letter words I had used to describe the cat. I was pleased when he came up with one of his own.

Inside the restaurant Don smiled across the table and I saw the want-to-cowboy he used to be and I thought about how lucky I am that I didn't have to purée his egg rolls and thicken his tea. He's come a long ways since the stroke. I looked down at my plate and saw a couple of tiny cubes that looked like clear gelatin and I wondered what they were. I ate one. Tasteless. I ate another, and then it dawned on me. They were eatable computer chips that program people to drive to their restaurant every time a UPS truck comes down the street.

Back in the Blazer after lunch, Don had to pee. We drove around to the back of the grocery store, before going in, and I pulled up to our regular spot where he could use his urinal. I felt like a male dog that needed to remark his territory as I poured the pee at the base of the 'No Parking, Fire Lane' sign. I laughed, thinking, "If only the people who believe I always live by the rules could see me now." It may not have been a bra-burning march or a stop-the-war demonstration from my youth, but I can still pull off a little civil disobedience.

Jean Riva © 2006

From the Caregiver Kitchen

The house is quite. For now. Within the hour Don will be up and he’ll be bellowing out, “Jean!” every few minutes. Can’t get his foot started in his pants. “Jean!” Got his arm caught in his shirt. “Jean!” Can’t put on his sock. “Jean!” Of course I could save myself a lot of walking back and forth if I just stayed by his side and helped him get dressed but that would enable him to be even more dependent and give me less opportunities to complain under my breath about my role as a caregiver/spouse. Somehow doing the latter seems to cancel out my fears of total dependency on his part. He does try his best before bellowing out like a cow overdue for milking.

When my husband finally comes rolling out of the bedroom he’ll pull up to the table and starting eating cereal from the bowl before putting the milk in. The carton will be sitting right next to his bowl, but no, I’ll have to pour it in or he’d eat the entire bowl of cereal dry. This, of course, annoys me to no end. It’s bad enough that he's served cereal for breakfast day after day but to eat it dry is an ultimate embarrassment to the kitchen staff---that would be me.

Preparing breakfast is not my forte but just this past week I fried bacon for the second time in my entire life. It only took me hours of watching the Food Network to get up the courage to try. The first time I fried bacon---56 years ago---grease spit at my face and burned my eye. Every since I’ve been buying my bacon served along side of scrambled eggs and toast. Is it any wonder that I consider bacon frying as the crowning achievement in my otherwise lack lust world of cutlery arts? I came. I conquered. I climbed the mountain. Where's my trophy?

When I was a teenager and my mother was trying to teach me to cook she’d often say, “You’d better marry a man rich enough to go to restaurants every night!” I was just not catching on. In my defense she was no Rachel Ray when it came to teaching technique. I learned more from watching chefs Anne and Robert’s TV show, Worst Cook in America, than in my mother’s kitchen. But I did follow Mom’s advice about finding a man who loved going out to restaurants, thus for decades I had a cooking-free kitchen until recent years when Don became wheelchair dependent. Now, I struggle to do what other women take for granted. Oh, well, I have a back up plan, if needed. I can always sign us up for Jenny Craig just so we can get three meals a day delivered to our doorstep. ©

Life Goes On......

Life hasn't changed much for us this summer. Don is still happy and singing the words "Jesus loves me" and "boom, boom, boom" over and over again each morning and sometimes in the afternoons. Recently I told him if we were sharing a room in a nursing home I'd ask for a room change. He laughed and for the next hour he sang the scales using just the syllable "la, la, la, la, la, la, la." He wants to talk. He can't, so he sings. So I use my ear plugs to keep my sense of humor from falling out of my head and to keep his happy tunes from getting in.

It seems a little weird not to be in back-to-school mode i.e. for Don to be starting speech therapy classes now that the colleges are in session again. We could actually go back to group class but with Don's hearing loss making it so hard for him to know what is going on in large, noisy rooms it would be a waste of time. And individual classes are not available to him anymore. He's not unhappy about it, though. Every time we go past the college Don hums the "Pomp and Circumstance" graduation song with much gusto and volume in his voice.

I've been very active on the political sites the last few months---like a crazed lady debating other crazed people out there in cyberspace. Don and I used to enjoy the political back and forth each election year but now it's just me venting to him and him agreeing with me. I tell him what the buzz is in cyberspace and he seems to enjoy living vicariously through me as I have all the fun. If I'm especially upset over something or on an extra high, so is he. It's kind of nice having this tiny connection with the past and how we used to like to talk politics late into the night.

We're lucky that we've been able to get out every other day all summer. The local Starbucks people know us as Mr. and Mrs. Caramel Macchiato, Decaf Coffee Tall. Even the puppy gets to go there and get a tiny cup of whip cream. He keeps his blog up better than I am keeping this one up. If you ever wonder what happened to us, check the dog link in the right hand column and he's sure to have something to say about life on the Planet Aphasia. ©

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Summer In Caregiverville

The days of June have blended one into another. Finally some warm days to alternate with the rain we've been getting have come to our corner of the world. The beginning of summer, for us, is marked by the first of the Blues in the Park series and by the start-up date for the Farmer's Market both of which happened this week. Summer is here and we don't even have plans beyond attending these two weekly events, raising a good puppy and contracting to have a couple of rooms painted. I should plan something beyond the normal rhythms of summer but between the cost of gas and the cost of getting older I don't seem to have the desire to seek out any more fun under the summer sun. We'll probably throw in a couple of art shows, a small town fair or two and call it good enough.

The new puppy, Levi, sounds like a herd of buffalo thundering across the carpeting as I write this morning. He litters our house with a dozen stuffed toys plus chew sticks and three balls. Several times a day I pick them all up and put them in his toy box in the kitchen and after nap times he gets them all back out again. Even Don is getting more puppy related exercise. As he makes his way across the floor in his wheelchair he's learned how to kick and pick the toys out of his path. Annoying as that must be for someone in a wheelchair, the puppy has been worth the effort. Don and Levi have already become barking buddies, much to my displeasure. The puppy is a schnauzer, a breed given to barking too much if you don't nip it in the bud. But what are you going to do with a guy with very little language at his disposal who enjoys interacting with the dog in their little joyful bark-offs? You make a half-hearted attempt to discourage the barking but you know that neither dog nor man will listen. I bond with Levi through training, exercise and feeding. Barking like two wolves in the wild is their bonding thing.

So I work at training Don not to bark at Levi when he's in the middle of transferring in or out of his wheelchair for fear the dog will bounce on him and push him over. It seemed to be Levi's favorite time to start their barking ritual. It's likes he's saying, "Hey, you're on your feet anyway. Come play with me." We've worked so hard at getting Don's transfers strong, dependable and independent again. Since last fall, really, and now that we've been going to the YMCA and working out, his transfers have finally become all three of those things and if not for the puppy I wouldn't STILL be on stand-by duty during transfer times. Life is full of ironies, isn't it? ©

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Disabled Heart

It's easy for me to forget that my husband is disabled. Despite the wheelchair and his language disorders, in many ways Don is the same man I've known since 1970----good-natured, compassionate, kind, smart, and out-going. It's the out-going part that gets him in trouble once in a great while, now that he appears severely disabled to strangers. Okay, I admit it. He IS physically disabled but not mentally impaired. Why do some people assume if you're in a wheelchair you lack a few too many IQ points?

Sometime happened tonight at puppy socialization class. As we were getting ready to leave, Don wanted to roll towards to a woman in her mid-thirties. He's never met a stranger he didn't like or want to talk with. It's how he was pre-stroke and still is post-stroke. He got within eight feet of the woman as she was walking towards the door. He tried to get her attention with his voice. I don't remember what he said but it was something like, "Ah…" and he raised his hand. Mind you they were still a good eight feet apart. In a loud voice she sternly said, "You will NOT grab me!" and she walked off leaving me stunned and Don wondering what happened. His hearing is not good but he saw the hostile look on her face and the startled looks of a few others who overheard her harsh words. I've been with Don every single second of every single one of these classes. I know she wasn't reacting to anything he had done tonight or in the previous classes. That was the closest in proximity they'd ever gotten to each other. In fact, it was the closest in proximity he's gotten to anyone in the class. We all sort of spread out to keep our dogs apart while they are on their leashes.

We talked about what happened on the way home or I should say I talked and Don listened. The best I could come up with is that she had had a bad experience with an old person in a wheelchair in her past and she felt sufficiently fearful of all old men in wheelchairs that she over reacted to a perceived advance on her personal space---despite being in a room full of people. Whatever the case, I'm glad that 99 people out of 100 react differently to Don than this woman did. Most people are kind and accepting but, of course, it's the ones who aren't that can bring you down. They take up entirely too much time in your thoughts. Look at me; I'm blogging about the split second it took for a woman to say five words!

I was telling a stroke survivor friend of mind about this incident. She doesn't use a wheelchair but has the 'stroke gait' of someone who's recovered from one-sided paralysis plus she has no use of one arm. She says she occasionally gets the treatment that says you're-physically-disabled-so-you-must-be-mentally-impaired-too. If you knew my friend, you'd know she's anything but. As a spouse and a friend to people who are hurt by that kind of unfair judgment it makes me sad. It makes me mad. It makes me reaffirm my belief that it really IS important to keep taking my Ambassador from the Planet Aphasia out in the community. When people take the time to get to know post-stroke Don he leaves a wake of friendly acquaintances behind. Just yesterday a waitress where we go often told him he's her sweetest customer. Another waitress where we go for pizza once a month never fails to give Don a couple of hugs before we leave. Most people like him or, at least, are compassionate in their dealing with him. He may not be able to help educate everyone about stroke survivors with language disorders---like the woman from the class tonight---but on the chalk board of life Don's got more marks in the 'win' column than in 'lost causes' column. ©

P.S. A friend of my wrote a review/article about a newly released computer game, AudiOdyssey, that is accessible to visually impaired, blind and mainstream gamers. I thought I'd share a link to the article here since so many stroke survivors have visual problems. I've read posts from a few survivors on support sites saying that an old Wii game (which is similar) has helped them with cognitive issues and motor skills. Click here to read the review.
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Routines in Caregiverville

No, I haven't fallen off the face of the earth. Don, me and the new puppy are poking along as usual, trying to establish and keep to a schedule for summer.

We've never been good with keeping old people hours---you know those people who are up with the pre-dawn glow and go to bed soon after the mauves, purples and butter creams of the setting sun give way to night. I both admire and hate the early risers. I could never willingly do that. Even so, since Levi came into our lives I've been getting up each morning at 8:00 sharp without using of an alarm clock. And after he gets his duty done outside, I write or cruise around the Internet until 9:30 when Don rolls out of the bedroom, fully dressed except for one sock and singing his happy aphasic greeting to the world. We then have breakfast together and get our showers in before noon. This is our post-puppy morning routine.

I love my first hour of the day for its whisper quietness. There's no TV screaming out at top volume to compensate for Don's hearing loss, drowning out the sound of the birds drift in the window. There's no singing of random or made-up words coming out of Don. That first hour of the morning I am all alone with my thoughts, my keyboard and sometimes when I feel like making it, a good cup of coffee. Quiet is a rare commodity in my life, especially now that we've added puppy barking to the mix. We know now what they mean when they say schnauzers 'talk' to you. Levi's got the play-with-me bark. The look-at-me-I just-learned-something-new bark and the bark that says, "I think I'm supposed to do this when I want to pee." He also aspires to herd birds so he's constantly barking at them. The trouble is I still can't tell his barks apart but I'm learning. Cooper barked once in his last year of life and it literally shocked me because it was such a rare occurrence for him to do that.

Routine. We are falling into a summer routine that gets us out every afternoon for lunch, errands or appointments and back home again an hour before the nightly news. Then Don takes a nap, Levi plays and I do a few household chores and by dark I'm ready to settle down in front of the computer. Egads, I've turned into one of those predictable persons! If it's Tuesday this must be swimming class. If it's Friday it must be time to recycle and eat hot dogs by the dam. Routine is good, though. At our ages, being without a routine means either we're in crisis mode or we've stacked our schedule so full it's humanly impossible for a woman with a bad knee and a man in a wheelchair to accomplish. A too full schedule risks us driving to Crazyville and crashing there so we can't finding our way back out. Yes, routine---boring as it might seem to others---is a good thing.

I've been writing a lot lately, working on my book about aphasia and apraxia and the 'joys' of caregiving. And I've been blogging for the dog quite often, plus yesterday I entered a contest with a $5,000 prize. That was an exciting day, being on the writers' forums as we all worked our way through the one-day-only submission process and the glitches that happen when a mass of people flood a website. Not much chance of me winning but it was fun to dream about it for a while, like buying a lotto ticket and dreaming big for a few hours. If it gets published, I'll post a link to the article. I'm quite excited about the discovery I made and wrote about and I want to share it with the stroke and caregiver community.

Speaking of sharing, if you or someone you know cares for a parent with any sort of disability check out Caring.com. It's a great site with lots of caregiver resources. I no longer care for a parent but a lot of their resources works for the spouse-caregivers as well. ©
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