I'm Still Here

 

This blog was written when my husband and I were dealing with his severe language disorders due to a massive stroke. We went through a lot of emotional ups and downs with speech therapy and all the other changes a loss of language brings to your doorstep. Treatments may (or may not) have changed since we went though this part of our lives, but these posts still might connect with others looking to learn they are not alone....

I add this update to keep the blog from disappearing off the platform.

Funeral Crashing Aphasia Style

 My husband, Don, is an obituary clipper. It’s not a hobby that he picked up since becoming a ‘certain age’ like most people would assume of old people who have a box full of newspaper announcements of this sort. He’s been doing this for at least thirty-five years. Don has a memory like an elephant and he also knew a lot of people, so his collection of clippings was huge at the time of his massive stroke when the collection got thrown out with our move to a wheelchair accessible house. When his ability to read returned, several years later, back came the obituary clipper part of his personality.

In Don’s distance past he worked at a funeral home as an after school job while he was in high school. He did various things like take the hearse to the hospital to pick up bodies, put flags on cars on funeral days and wash black vehicles. They liked him so much that they wanted to pay his way into undertaking school but he wasn’t buying that as a career choice. The experience did give my husband a special reverence for the importance of funerals and he never looked for excuses not to go to one. In Don’s book, it’s a duty to honor the dead and comfort the living and he’s not about to close that book now that he uses a wheelchair and can’t talk due to his severe stroke related language disorders, aphasia and apraxia.

In the past, of course, there were many funerals that he went to that I didn’t have to attend because I had no history with the dearly departed. I don’t have that privilege any more and Friday was such an occasion. Don had a clipping and the funeral was to be held at the mortuary where he had once worked. A double header, I presumed on the Planet Aphasia. The name of the dead guy sounded vaguely familiar to me but no matter how hard I tried, I couldn’t get it out Don how he knew the gentlemen. Oh, but he was animate! This was a funeral where just sending a card would not do. He was going---no ifs, ands or buts about it. Don’s aphasic brain couldn’t say the words: “If you won’t drive me, I’m taking my wheelchair all the way into town” but the determined look on his face sure got that message across. So, off we go in our somber clothing. We’re there doing our funeral thing. Greeting people who spoke to us, signing the guest book and still I couldn’t figure out where this dead guy fit into Don’s life. People would ask us how we knew the guy but, of course, neither Don nor I could tell them. I was doing my standard he-can’t-talk-and-I-don’t-know routine and feeling like I’d like to melt into the floor boards when Don finally got out the word, “Four.” So we started doing the aphasic polka.

“Four that---months, years, days, hours, seconds, people, places, or things?” I asked.

“Years!” Don beamed like that’s going to tell me the entire story. He was so proud of himself for getting out that clue to the mystery. Four years. Okay. We started the aphasic polka all over again.

 To make a long story short, just as we were getting seated so the service could begin my aphasia decoder ring finally broke the code. The only person Don knew in the dead dude's family was only four years old the last time he saw him, and that was way back when Don was in high school, working at that funeral home forty-seven years! Don occasionally kept the four year old busy at the funeral home when his parents visited the undertaker. So I’m sitting there in one of those little wooden chairs that are always too close together for comfort, listening to a bad version of “Precious Memories” and trying my best not to laugh up a cow on the spot. It was not easy, let me tell you. Even a few people near-by who had over heard our aphasic polka exchange were cracking up.

After the service, we didn’t stay for cake and coffee although I’m sure Don would have liked to have done so---there are no strangers in his world. And thus ended another wonderful experience on the Planet Aphasia where every day brings something new to laugh about. We have now officially crashed the funeral of an almost total stranger.   ©

Welcome to The Planet Aphasia!

The posts added to this blog in 2014 are out of order from those posted in earlier years. They were transferred here from a now-defunct site because I wanted to preserve the documentation of my husband's and my funnier experiences in the world of dealing with his aphasia, apraxia and agraphia. The rest of the blog is still a documentation of our lives in the post-stroke years but they were written diary style, as things were happening and those posts are a mixture of what you'd expect with a couple dealing with the loss of language---the ups and downs, the rants, heartbreaks, triumphs, humor, and sadiness. My husband has since passed away after living with severe language disorders and right-side paralysis for twelve years. He was an amazing man, the way he played the hand that was dealt him. I learned a lot over those twelve years and I shared it all here in this blog.....

If you want to start at the beginning of our journey and work your way forward, the first post I wrote for this blog can be found here: Sight-Day at the Disability Deer Hunting Camp

He's in the Dog House Now!

The atmosphere here on the Planet Aphasia is warping my waffles. Don't ask me what that means. If your waffles are warped too, you'll understand. If not, trust me when I say that it's not a good thing here in the city of Caregiverville.

Every year there are eighty thousand new cases of the language disorder, aphasia, and I get a singer. Headline: Giddy Little Husband Tools Around In His Wheelchair Greeting His Day Like He's Been Over-Dosing On His Celexia Again.

"Happy birthday to you, happy birthday to you," my husband, Don, belted out like he was determined to be heard on the moon.

The problem is no one was having a birthday. The song is one of two that Don's aphasic brain can sing using actual lyrics. Well, sort of---the words often come out like they went through a blender first.

I should be happy for lyrics. Any lyrics. After all, Don has so few words in his vocabulary since his stroke. But these two songs are different. They're ones my husband learned when he was still using a highchair and they're stored in a relatively undamaged part of his brain. Even so, hearing "happy birthday" was a pleasure this morning---for the first hour. In the second hour, sweet little wifey poo that I am, I politely requested that he switch to his other song.

"Jesus likes me. Yo, you know," he complied. Okay, so he's got work to do on that childhood favorite before he's ready for American Idol.

"Yo," I interrupted Don, "Jesus likes me? I think he loved you when you were a kid."

This afternoon we were coming back from running errands and no one had yet found the switch on the back of Don's head to turn him off and he was getting annoying. Back up here---I'll admit that I was more than annoyed. I'd reached my quota of being a Nice Nancy about the never ending, loop of songs.

I pulled over to the side of the road and told him to get out if he couldn't behave himself. Hey, it worked on my brother and me when we were kids so I figured why not give it a try. And for a split second I thought that I really could do that, shove Don and his songs out the door and drive off. How much trouble could a person get into for leaving a wheelchair bound guy sitting at the side of a country road, singing "Yo, Jesus?"

When I shifted the car into park, Don looked at me as if---well, as if I'd warped my waffles for good this time, permanently indenting brain matter that isn't suppose to be marked with such a precise pattern of man-made deformities.

"I mean it," I practically shouted, trying to sound mean and bitchy. "Get out or get quiet!" If I were inclined to be honest here I'd admit that it wasn't much of a stretch for me to be the perfect bitch. Four hours of "Jesus has a birthday" or whatever it was that Don was singing at the top of his happy little lungs was doing a number on my head.

My husband took in my angry words and gave me an angelic smile, his blue eyes smoldering with mischievousness and after a very---and I do mean very---long pregnant, aphasia driven pause he said, "Change lanes."

I stared at Don for a full minute. I couldn't have been more astonished if he'd just used ruby red fingernail polish for eye liner and I wanted to bang my head on the steering wheel. (Now you know how waffles get warped in Caregiverville.) It's been five years, ten months and seven days that I've been trying to teach Don to say "change lanes" and "turn here" when we're in the car and he's frantically trying to get me to do one or the other. And the gods of Aphasia, bless their wicked asses, picked that time to let the words come down the pike and out his mouth.

"Okay, buddy-boy," I said with recessing gruffness as my bitch persona made her exit and I shifted the Blazer back in gear. "I'll change lanes and we'll go home. Together. But don't you forget that you're in the dog house now!" ©

By Jean Riva

This article appeared at Yahoo Contributors but they are going out of business and the rights to publishing it reverted back to me. So I've moved it and others this month to my blog to preserve them. If they seem out of order to the rest of the content in this blog, that is the reason. 

Baby Gates or How Not to Help an Old Lady in a Parking Lot

The scariest phrase in the English language, according to the dog, is 'baby gate.' He's on a diet so those words come up often in our conversations. All I have to do is say 'baby gate' and he goes off running with his tail between his legs, his little toenails clicking on the linoleum. Since I started working on the internet, the dog has gained three of his nineteen pounds. A lot of people can't see the direct correlation between my website job and Cooper's gain weight, but it's actually quite easy to explain. The dog thinks my computer wardrobe is an ATM machine that dispenses Pup-Peroni treats. The more time I spend dripping assorted liquids on my keyboard and sneezing on the monitor, the more opportunities for our pudgy poodle to make Pup-Peroni withdrawals.

I thought about this the other day when a Helpful-Henry type guy approached me in the parking lot wanting to help me load my husband's wheelchair into the back of our Blazer. Usually when this happens---and it happens frequently---I'll just say, "I appreciate the offer but we have a lift" and the nice guy will fade off into the sunset. Sometimes a Helpful-Henry---we'll call him the Model 'A'---will stay around to watch because: 1) he's never seen a Bruno wheelchair lift, or 2) he's lonely and this is a senior citizen's version of a pickup bar. This model of Helpful-Henrys will poke around the control box and tell me about his aunt Tillie's wheelchair, maybe ask a few predictable questions. Well, if you knew me, you'd know I don't give a tinker's damn about a stranger's Aunt Tillie's chair but I got a B+ in small talk at college and I want to keep up the skill. So, I listen and smile and try to decide if he really does have an Aunt Tillie or does this Model 'A' just want to split a Metamucil malt with me over at the Senior Citizen Hall.

If the Helpful-Henry is too young to remember seeing "Rock Around the Clock." the first time it made the rounds in the movie theaters, then my mind doesn't blow smoke and fool itself into thinking that this guy is Sir Galahad and I'm the hot---although slightly wrinkled---babe in the parking lot that he's come to save from a hernia. No, I don't get the vapors over the Helpful-Henry Model 'B's and forget that I have husband patiently waiting inside the car. I don't turn my face away and quickly pitch some color in my cheeks or wish I hadn't left my support hose at home in the drawer. These young pups are sweet, and if I had an unmarried granddaughter I'd probably invite a few of them over for Sunday dinner. Assuming they liked Chinese and I could do take-out.

Then we have the overly eager, Helpful-Henrys. The Model 'C'. They come in all sizes and ages, all colors and shapes. They are lurking every where and they exasperate me! They drive me crazy! I admit, the trip to Loonyville wouldn't take long but I don't need any help getting there. Thank you very much. The Model 'C' refuses to take "no" for an answer. He ignores the chair lift and flings the wheelchair into the back of the Blazer without waiting for me to make sure that its T-shaped docking arm is positioned right-side-up so that I can use the lift to get the chair back out of the car when I get home. How do I explain that I don't keep another Helpful-Henry at home in the garage, standing at attention next to the recylcing bins? I don't explain. Model 'C' doesn't give me the time! So, I just smile that grateful old lady smile and let him think he's the best Boy Scout on the block. But at times like that I wish the phrase 'baby gate' was universally accepted as the scariest phrase on earth. Just once I'd like to hear the pitter-patter of a Model 'C's shoes running away as I scream "baby gate!" in the parking lot in front of Lowe's. ©

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 Fall: Dateline: Caregiver City, Planet Aphasia

 This article was first published by 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 here, that is the reason.

There is nothing else in a house that sounds like a body hitting the floor. I heard that kind of thud today and from the kitchen I took off towards the bedroom in an old lady version of a triathlon competitor---stiff knees, making my gait bob from side to side as a speed walked, then hopped over the dog and came to a sliding stop with my socks. My arm was raised in the air as if I was taking part in an Olympic Torch Relay. That's when I realized that I had a wooden spoon in my hand and I was about to drip pistachio pudding all over the place. I did a quick scan of my husband, Don, lying on his back doing an imitation of a beached whale at dawn. He wasn't dead or dying so I dashed back to the kitchen to turn off the stove and deposit the spoon back in the pudding pan. It would have been embarrassing to call an ambulance, the fire department and a carpet cleaner all in the same hour.

Back in the bedroom, Don didn't want me to call 911 to bring help getting him off the floor. "It's a free service included in our taxes," I pleaded. Still, he wasn't ready to give in to the fact that his wife is not a female version of Arnold Schwarzenegger in his prime. We needed help! I thought about all the books in our library and wondered if we had one titled, "An Idiot's Guide to Getting a Paralyzed Guy Back in His Wheelchair." Nope, but I put it on my mental shopping list. We did have a copy of a National Geographies magazine that has an article in it about rescuing beached whales. I briefly wondered if it would be of any help with the situation in the bedroom. Nope, pouring pails of water over Don while waiting for the tide to come in didn't make much sense in the middle of Michigan.

The first time my husband fell out of his chair I struggled, pushed and pulled and finally got Don to his knees. By then, I was wheezing louder than hippopotamus having an asthma attack. But I got his upper body flung over the bed and managed to hoist the rest of him up on the mattress and back to square one for making a transfer to his wheelchair. I don't usually talk about giving wedgies in polite company but it would be quite appropriate here as an explanation for how I managed this feat of getting my guy off the floor. The ordeal took more than an hour and by the time it was over we were both a mass of quivering, sweaty flesh. "Quivering, sweaty flesh" has its appeal when talking about sex but for a couple of old farts dealing with a help-I've-fallen-and-I-can't-get-up situation that phrase can only be filed in a folder labeled, YUCK!

Finally today my husband gave in to my begging and pleading. I called 911 and we waited. Don, he picked that time to point to a burned out light bulb in the ceiling fixture that he wanted me to change before the emergency vehicle roared up our street. Me, I was more concerned to see if the dog had dragged any dirty underwear into the living room. He did. He's a canine pervert.

Two EMT guys showed up at our door: one big and burly, the other wimpy and girlie. They dragged snow across the carpet and I thought, "Okay, if Don was dying I'd be glad they didn't take two seconds to shed their boots." It's a woman thing, I guess, to worry about cleaning details. In the bedroom, the guys snapped on their latex gloves and evaluated the situation before the burly guy righted Don into a sit, got behind him in a weight-lifter's squat and picked all 240 pounds of my husband up with one big He-Man grunt. I was impressed that he didn't split the seam on the back of his pants. Mr. Burly then asked Mr. Wimp to take me into the living room to help him write up some notes.

I sat in my lady-of-the-house chair naming off drugs and wondering why Mr. Wimp didn't take off his gloves. What kind of germs do you suppose he expected to pick up from his paper pad and pen? But I quickly got distracted from that thought and started worrying about what was going on in the bedroom. I'd warned the guys that Don has a language disorder and a very limited vocabulary but I forgot to mention that when he's tired he reverts back to answering, "Yes" to every question. I hoped Mr. Burly didn't ask about all the bruises on his paralyzed arm that are bi-products of taking a blood thinner.

"Did you wife do that to you?" I was worried Mr. Burly would ask.

"Yes," Don would cheerfully, but mistakenly, answer and I'd be in deep do-do. Getting interviewed by Protective Services is not very high on my list of 'A Hundred Things I Want to do Before I Die.'
Don must have passed Mr. Burly's test and he came rolling out of the bedroom with the guy following up the rear. The two EMT men exchanged a few words and it was clear they were ready to leave. That's when I knew Don that was back to his normal self. Out of his lips came his favorite word. "Garage?" he asked while pointing back and forth between Mr. Burly and Mr. Wimp.

I translated that in my head and spoke up quickly, "Don, these guys have other old people to pick up off the floor. They don't have time to tour your collectibles in garage."

"Please?" Don begged, using another word in his twenty-five word vocabulary. It didn't help. The guys were properly polite and promised to come back when they weren't on call. I was thinking how grateful I am that Don's pre-stroke hobby wasn't collecting x-rated magazines and sex toys. Every friend and stranger alike who crosses our threshold gets invited out to the garage.
I returned to the kitchen, found the abandoned pan of pistachio pudding and wondered if I could eat the whole thing in one blissful sitting. If you want to know the answer, it will cost you a quarter. ©

by Jean Riva