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 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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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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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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The Aphasia and Apraxia Challenge for Caregivers

Yesterday Don and I had a half hour 'conversation' about something he really wanted to tell me but the only words he could get out during the entire time were: feet, baker, dad, and gone. And, of course, 'yes' or 'no' as answers to my questions. When my questions got too far off track to what he wanted to tell me, he'd repeat those four words as if saying them over and over again, with increasing the volume, would bring me perfect clarity.

Those of us who routinely deal with someone with severe language disorders know that we start our guessing games with generalities, trying to pull out more details in hopes they will lead us where we need to go to understand what our care recipients are so intent on telling us.

"Is this about something you just read or saw on TV?" ---- No.
"Is this about your dad?" ---- No.
"Is it about someone you know personally?" ---- Yes
"Relative?" ---- No
"Friend?" ---- No
"X-coworker?" ---- No
"Neighbor?" ---- Yes

Thank God, we had a meaningful clue! Then I listed all the places Don had ever lived and found out that the neighbor was from his childhood. I did a mental groan because the stories from before I knew my husband are harder for me to pull out of him than the stories from time frames when we have some shared memories. But he is stubborn and so am I and I've learned since his stroke that there is no way we're going to avoid this aphasia/apraxia driven dialogue. So I sat down for the siege, knowing nothing in the world is more important to Don at that moment that getting me to understand the connection between those four, tiny words: feet, baker, dad and gone. It was at that point that Don did a gesture with his hand, like drawing a knife across his feet and he repeated the word: gone.

Over the half hour I was able to figure out that a neighbor kid of his from when they were both approaching their teen years was held down by one guy while another axed off his feet. Don somehow knew the people who did this to the kid and he told his dad which resulted in the bad guys getting hung. Why this story was on Don's mind is still a mystery. I asked him if he saw something on TV that reminded him of the event and he said, "No." I was afraid to dig too deep into whys and wherefores for fear it would take another half hour to figure it out. But I was curious. I still am and if his brother was in town I'd probably call and see what he knows about the story.

It occurred to me afterwards that if Don had told this same story in his pre-stroke days he would have drawn it out with rich details and made the story last the same half hour that it took to tell it now in his post-stroke language disorders way. He was a gifted storyteller with a million stories like this one and he hasn't lost the desire to share them. The difference, though, is that now the 'listener' does so much work to draw the bare bones of the story out that it's mentally exhausting. All of us who have been there, done that know exactly what I mean. ©


P.S. Some of you might remember that I entered a writing contest a while ago that had a $5,000 prize. I didn't win---didn't really think I would---but here's a link to the article I wrote for the contest. I'm proud of the way it turned out. Disaboom: a Web Company Making a Real Difference to People Touched by Disabilities.
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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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Life is Perfect, Even When it's Not

This is a blog entry from a few years back that I had at a different site, but it fails to open half the time so I'm relocating it here.

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At the dentist office today, I took my wheelchair bound husband, Don, to the restroom. It’s a good one with grab bars situated so that he---with my help---can stand up to pee. But first we had to get him out of his coat. Its nylon and is so slippery it would be like holding on to slime, should I have to catch him in a fall. That task accomplished, I got Don’s pants down and held his shirt out of the way while both of us stood side by side waiting for the flow to start. It didn’t. So, I’m singing game show tunes in my head---the kind they play while a contestant is trying to come up with an answer while the clock ticks away. For some reason the wait seemed longer than usual which made me think of our friend who has a ‘shy bladder.’ He can’t pee if someone else is in the room.

“Ron better hope,” I said to Don, “that he never needs help peeing.” Don got the humor in that statement which gave us both the giggles. We were giggling and laughing so hard by the time the pee stream hit the bowl, it’s a wonder it found its mark and didn’t cover our shoes instead. The restroom is just a few feet from the receptionist’s desk and heaven knows what she was thought we were doing in there. The look on her face when we came out was priceless. She wanted to ask. Oh boy, did she want to ask but her phoo-phoo manners wouldn’t let her.

As I sat in the waiting room while Don got his teeth cleaned, I picked up an old copy of Real Simple magazine. On the first page I turned to was a Ralph Lauren double-page layout for Polo Black, a men’s fragrance that featured a hot model. And I do mean sexy as in take-off-your-clothes-and-let-me-see-the-rest-of-you sexy! I looked at him, and then around the room trying to figure out if the Thought Police was present. I decided that a dentist’s waiting room was not a good place to have a virtual organism, so I quick turned the page. Thanks goodness, the next page was a double-page layout for a Chevy. Cool. Keep those cars a selling, we need their pension money. I flipped through a few more pages and came to an ad for Starbucks coffee liqueur which was exactly what I needed after lusting after the Ralph Lauren guy. I’ve never smoked but that guy had me reaching into my purse for a pack of cigarettes.

By now I was beginning to think that the Real Simple magazine was nothing but advertisements. Duh, aren’t most of them? And sure enough, the next page was a double-page layout for American Express featuring Ellen DeGeneres. She says in the ad that her life is perfect, even when it’s not. Wow, what a nice thing to be able to say about your life! I think I actually know what she means.

Finally, I came across a few articles in the magazine. ‘What’s the Craziest Thing you ever did for Love?’ was the title of one article, and there were some notable answers like: “take skydiving lesson,” “move into a log cabin built in the 1800,” and “eloped 36 days after meeting someone.” Another article was titled, ‘Portrait of a Family.’ There is humor in this, I thought about finding these two articles, because my family portrait and the craziest thing I ever did for love could be one and the same. Yup, I’m getting out the oils and easel and painting a portrait of Don and myself. We’ll be standing side by side, leaning over a toilet bowl, expectantly looking down and hoping that neither one of us ends up with pee our shoes. Love doesn’t get much crazier than that, does it?

Jean Riva ©

Postcard: Park Kiss, circa 1900
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Show Us Your Best

Over a person’s lifetime there are many labels used to describe that individual. Some labels we’re glad to outgrow like “teenager” and “student.” Some labels we may love having like “mom” or “dad.” Some labels define our professional place in the world like “doctor,” “officer” or “senator.” Other labels may define our passions like “artist,” “sports fan” or “musician.” Each of us carries with us at all times at least a dozen labels.

There is a whole sub-category of labels that we’re not always sure how they fit into our lives. “Survivor” and “caregiver” could easily fall into that description. Being a survivor is a positive label but many survivors, understandably, wish the label didn’t have a reason to hang itself on them. Not that they’d necessarily want the opposite end of the scale, which is being dead or a victim wallowing in self-pity, but they just haven’t found a way---yet---to be proud of overcoming the life-challenges a stroke brought into their lives.

Being a caregiver is a label I neither like nor dislike. It just is what it is, although early on in the process of becoming one it felt like a step backwards in the area of human relationships. It felt like I’d had to trade in another, more beloved label to get the caregiver status. For example, I went from daughter to caregiver to my dad and then again I went from best friend to caregiver with Don. “Caregiver” felt negative, like I was in charge of something I’d rather not be in charge of: another human being.

I remember the first time someone called me a caregiver. It was shortly after Don was released from the hospital. I had wheeled him into a medical office and the receptionist said: “Are you your dad’s caregiver?” Don and I are very close together in age and it really hurt to have someone perceive him as being that much older than me. It was the first time that I realized that our relationship truly had changed with the stroke. We were no longer just Don and Jean. It happened a lot in the first year post-stroke---being mistaken for daughter and father---but as Don got better and looking more and more like his old self, people quit hanging the father-daughter labels on us. A little color and a lot of animation in his face turned him from looking like a “victim” to looking like a “survivor.”

There is a phrase I heard several times in commercials a few years back: Show us your best. God, I love that phrase! I tried to research its origins but all I could find was a lot of photography sites where people were invited to show each other their best photos on various topics. The phrase applied to sports, though, takes on a whole new meaning---of working hard in the past to achieve something great in the present. I don’t follow sports but I can’t help but admire anyone who has earned the label of Olympic contender. I wish the Para-Olympics for disabled athletes were covered better by network television. I saw them last year and watching people with disabilities competing in many of the same arenas and venues of the regular Olympic athletes puts special meaning into the phrase: show us your best. It also puts a new meaning to the label of “disabled.”

Maybe we need a Caregiver's Olympics so all of us who wear that label could be prouder of what we've achieved. But there are no metals to win for that kind of dedication, determination and courage.........except for the ones we caregivers give each other with a soft-spoken, “I understand” or a loud cheerly shout of, "Way to go! You stepped up to the plate and showed us your best!"

Jean Riva ©
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Stroke Anniversary Number Eight

May 21st, 2008 will be the eighth anniversary since Don's massive stroke, a stroke that changed the direction of our lives as strokes do for most people. This year, to celebration the fact that my husband beat the prognosis of two neurologists and is far from being “a vegetable for the rest of his life,” as they predicted, I'm planning a day trip to Lake Michigan. There's a quaint tourist town on the eastern shoreline that we've both been going to since we were kids, long before we even knew each other. A ship that once took me on my high school class graduation trip is docked there, a maritime museum now. For some reason it gotten smaller as the decades went by. I can't imagine spending a week in one of those tiny cabins now, especially with Don's wheelchair in tow. Perceptions changes over a lifetime. Back then, I thought we were traveling like the 'upper crust' of society.

I suppose some people think it’s strange to celebrate a stroke anniversary, but it could have been so much worse and that ‘could have been but wasn't’ is really what we celebrate. Yes, Don is still wheelchair bound and can’t say more than a handful of unprompted words but he is cognitively almost back to his pre-stroke days and we can still find meaningful things to embrace and keep us busy from day to day. But more than any other benchmark, the stroke does not take center stage in our lives like it did in the first few years when therapies, changing priorities and goals, and downsizing our lives filled every waking moment. We arrived on the other side of the firestorm several years ago, rebuilt our lives from the ground up and now enjoy the fruits of our hard work.

I still visit the stroke supports sites from time to time but the strong connection I once felt there is holding on by a very thin thread. And that is a good thing in the recovery world. After all, it's the goal of any support group to help people to get their lives back on track and living in the real world again, however chanced and challenging that may be. When a member of a support group no longer needs to get or give advice or compare their battle scars the group has been successful in its mission.

One thing I still try to share with people new in the stroke recovery world, though, is the concept of acceptance. Some people mistakenly think that if they accept their stroke limitations---or those of their spouse---that it's akin to surrender and giving up. Nothing could be farther from the truth. Acceptance of what has happened gives you the power to fight your best fight for recovery. It's when people live in denial of their fallibilities or they play the blame game, mad at God and everyone else in their path, that they defuse their power because that denial and anger eats up an enormous amount of energy and time. Acceptance gives it back so you can redirect your resolve to places that will make a difference in the quality of your life.

Don and I have both worked hard over the past eight years to overcome "the vegetable for the rest of his life" prognosis and he's come a long way cognitively, physically and communication wise since the first few years out from the stroke. (Note: communication is more than just spoken or written words.) His ability to be good natured and happy despite his disabilities inspires people where ever we go. I'm proud of him and I think he is proud of me as well. Yesterday at the YMCA while we were both working out we were surrounded by young, healthy people Don looked at me with deep emotion in his smoky-gray eyes and said, "Me cool."

Those of us who live on the Planet Aphasia know that reversing relationships is common with speech disorders, so I pointed to him and asked, "Don is cool?"

"No," he replied and pointed to me while saying, "Cool" again.

"I'm gray haired, old and full of wrinkles and you're surrounded by beautiful young people and you can still say I'm cool?" I teased back.

"Yes!" he answered with gusto to which I gave him a rare public display of affection and then we went back to our workouts. Perception, as I said up above, truly does change as we march through our lives. When you're young and emerging into life I doubt anyone would label an old person working out in a gym as "cool." It's only through the grace of God, love and admiration for our fellow man that we learn to look past the exterior of anyone---disabled or not---and see the spirit within. ©

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