I Need a Man!

The garbage disposal isn’t working. I can’t find a reset button on it. The damned thing is plugged in firmly to the electrical receptacle and the circuit breaker is turned on. What next? What do I do? Who do I call?---a plumber or an electrician? I hate dilemmas like this! They make me feel so much like a---like a caregiver. And I’m saying that last word with a giant sized sneer. I don’t have a ‘go-to’ guy anymore. Cry, sob, sob. Feeling sorry for little old me. I don’t have a ‘honey-do’ list for Don. I don’t have a Mr. Fix-it to call on twenty-four hours a day. I don’t! I DON’T! I don’t want my husband’s stroke in my life anymore!

I get the tires rotated on the Blazer. I get that vehicle serviced faithfully on schedule. I go to the car wash. I pump my own gas. Jeez, I even unplug the toilet and fix its chain when it has PMS. I can think of a hundred ‘honey-do’ things woo-is-me took for granted in the past. Guy things are creeping up on me, boxing me in a corner. I feel them crawling all over my skin. Yuck! Get them off from me! Okay, so I was born in an era where we divided household chores up by the sexes. I can’t help that. There are certain guy things I just don’t like doing, and I don’t want to be the only ‘fix-it’ person in the house. Why do I have to be the mommy AND the daddy?

The really stupid part of this whole thing is that I rarely ever use that garbage disposal---I just run it for the dishwasher once in a while---and I have really fine screen baskets covering my kitchen sink drains. I don’t like smelly drains. I’m old school. I still wrap my garbage and put it in the trash. I’ve never owned a garbage disposal before we built this wheelchair accessible house. Old dogs can’t learn new tricks when they don't wanta get with the program. I’m going to be awake all night long worrying about the slimy little particles of food that the dishwasher is going to vomit into that garbage disposal. I’m going to worry about how that vomit is going to get out of the garbage disposal without those whirling blades to shred the crap out of it.

I found a tool that came with the garbage disposal, but there are no directions for what that tool is suppose to do. I want my daddy! DADDY! I know you’re an angel. Can’t you get a leave of absence and come hold my hand while I figure this out? I’m scared of garbage disposals. Don had one at his house years ago and I never ran that one either. They chew things. They spit up. They make scary noises and mangle forks. I can run a band saw and a circular saw. I can use a sander and I once took a welting class. I can drill holes and I can hammer. I used to owe a miniature lathe and I knew how to use it. I can plow snow and I knew how to run an asphalt compactor. I’ve even run a front-end loader and operated the gutter brushes on a street sweeper. But I DO NOT WANT TO FIX THE GARBAGE DISPOSAL! Is anyone listening? Why does it have to be so hard to live on the planet Aphasia? I want someone to talk to!

God, I’m crying. ©

Jean Riva

Sink Photo: Wikimedia Commons

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Life is Perfect Even When it's Not

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

A Typical Day on the Planet Aphasia

We got a late start this morning and it was well after noon before I sent my husband, Don, off to get started on his shower. An hour later I went to check on what was taking him so long to get his pre-shower routine out of the way and I found him sitting in his wheelchair in front of the TV in bedroom, absorbed in a soap opera. He hadn’t even begun the process yet!

Being the sweet, understanding wifey poo that I am---a woman who is in full command of the entire English language---I said, “What are you doing? It’s going to be fucking dark by the time we get to the grocery store!”

Don pointed to his favorite shrink from the Bold and the Beautiful soap opera whose beautiful face was filling up the TV screen. Taylor was the Friday cliff hanger. No wonder he couldn’t leave the show, he’s had a crush on her for three years. But I had his attention now and he proved it by wrapping his language disorder, aphasia, around a few of the words from the sentence I had just said. Yes, you can guess which words, but that wicked bitch Aphasia, she was messing with his head and the words came out as “sucking bark” instead of “fucking dark.”

I hung my head in shame. I knew what was coming and twenty lashes couldn't make me queue him to the proper pronunciation of my crude language. Sure enough, for the next hour I was treated to the ‘Sucking Bark Opera,’ sang at the top of Don’s lungs. The man only has a daily vocabulary of twenty-five words but he can sing one and two word “operas” just fine and dandy. When you’re not busy hating Aphasia, you’ve got to love her sense of humor. There’s a certain kind of poetic justice in the fact I should have an hour long reminder that I have to quit swearing. Aphasia, she took Don’s ability to talk factory profanity away from him and gave it to me. Now you know why I call her a wicked bitch.

Before cruising the aisles at the grocery store, I asked Don to watch my purse and our jackets in the shopping cart outside of the restroom door. He agreed. I did my thing and came out to find the cart deserted and Don twenty feet way. His back was to the cart and he was pointing to the label on the back of a woman’s jeans and she was saying, “You like my Levi’s?”

“Yes, yes,” he answered back. Don misses wearing Levi’s. They aren’t wheelchair or independent dressing compatible but he never misses an opportunity to point out a Levi label on the back of a woman’s butt. Guys in wheelchairs can get away with things like that.

“Don,” I teased, coming up behind him with the cart, “thanks for keeping an eye on my purse.”

He didn’t miss a beat. He pointed to the woman and said, “She.”

“She was watching the cart?”

“Yes!” he said with a wide-eyed innocent look of a little boy.

The woman winked at Don and agreed. He makes friends and finds co-conspirators every where.

I left the front area of the grocery store as Don was rolling off to the little bank at the front to collect some free pop corn and to get coffee at the Starbucks concession next door. My mini-vacation from the Planet Aphasia was about to begin. I was off to find the Red Baron.

Jean Riva ©

painting: Henri de Toulouse-Lautrec

The 25th Silver Anniversary Corvette

The first time we saw the ’78 Corvette it was two-three years old. A friend owned it and he wanted to borrow my husband, Don’s, pickup truck for the weekend so he offered to let us drive the Vette while he had our truck. The car was up for sale and to this day Don claims he wasn’t in the market to buy a sports car but that’s what happened the following Monday.

That weekend we took the car on a mini vacation up along Lake Michigan. The weather was perfect T-top weather and the tourist towns along the way had their usual laid back ambience. We were used to running around in trucks so it was fun hopping in and out of the little silver car with the red interior. Every where we parked little kids came up to admire the car or they’d yell out things like “nice car” as we drove by. Unbeknownst to us Barbie, the famous doll, had the very same car and they were used to seeing those classy fender lines parked in front of her pink house.

From that first weekend until Don had his stroke in 2000 the Corvette was put in storage in the winter months and it was only driven in the summers when we were on the way to having fun. It was a true fair weather and sunshine car and it holds nothing but good memories of closeness and talking under the stars as we drove home late at night.

Today the car made another trip. It had been in storage all this time since the stroke and I finally was able to get the garage organized enough to get the Vette home. The guy from the towing service was wonderful. He reacted quickly to Don’s one word attempt to tell him about the open windows on the car. Since the car was already on the flat bed ready to go down the highway, I told Don it could wait until we got it home to put the charger on the car to get the windows up. But the towing guy said, “Your husband is worried about the air going through the car.” So he lower the car back down and got the windows up. At the house he worked hard and very careful to get the car placed in a very difficult situation that included an up hill turn to back the car into our smallest bay. The guy was worried about cracking cement, digging up the lawn and breaking sprinkler heads. I wasn’t in the least. Money could fix any damage he could do and this homecoming was long over due.

In the end, there was no damage and we were happy to give him a good tip for his caring attitude and expertise. I asked Don after he left if he thought we’d accidentally played the sympathy card because the man only charge for the actual tow and didn’t write up putting air in the tires or getting power to the windows. The minute the words were out of my mouth I knew the question was anything but moot. Don couldn’t say the words but the look on his face said that no one in their right mind would have sympathy for a guy with a classic Corvette sitting in the garage of his dreams that is attached to the new house of his dreams. Sometimes I think he forgets he’s a stroke survivor sitting in a wheelchair with a severe language disorder. Today, he was just one very happy guy with a piece of his history back.

Jean Riva ©

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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.

Jean Riva ©

Old Farts

As many baby boomers do, I’ve needed total knee replacements for several years, but I’m scared to death I’ll have a stroke if I do. The doctor says my best chance for not having one would be to lose some weight. But guess what, folks, I still don’t look like Twiggy. So what, I tell myself, if my bones are grinding bone against bone. And so what if I have this ghastly vision that in a couple of years I’ll be ten inches shorter and the skin on my legs will be bagging in folds at my ankles and I'll look like I’m wearing flesh colored gaiters. My brain will still be intact and my husband, Don, and I won’t have to share a room at the nursing home while the dog goes off to a shelter. Whenever this scary thought passes through my mind, I look around the kitchen wishing the fairy godmother of brownies has left some that I can stuff in the biggest hole in my face.

Seriously, thought, there are days when the pain is about to fry my senses and I want to shove Don---a stroke survivor---out of his wheelchair and scream, “Get up so I can sit down!" But I keep that thought to myself because I’m not Kathy Bates in Steven Spielberg’s movie Misery. No, I’m a good little caregiver-slash-wife and we caregivers-slash-wives know what that means. We bottle it up and button it down and keep our feelings and fears to our selves until the pressure builds up too much. That’s then we yell something like: “Do you have to leave your dirty socks on the floor!?” Why do we women do that, not share with our mates what's really poking pins in our butts and making us grumpy?

I’ll be the first to admit it. One of the reasons I don't want to get my knees replaced is because overweight old people don’t look good naked. We’ve got bulges and things that look better draped in clothing. It’s not just the extra pounds but at a certain age we start growing things: warts and moles and bumps of unknown origin.

So instead of getting my knees over hauled I keep pretending and telling everyone who will listen that I’m older than I really am. If I were eighty, for example, it would be acceptable to spend guilt-free hours sitting at my computer or lusting over the new varieties of sweet peas in the Park’s Seed Catalog. No one ever told me that housewifely things required so much walking around. Vacuuming and dusting and cooking, who cares! If I were eighty, I could eat dill pickles for breakfast.

Growing older and imperfect makes you feel like you’re also growing invisible. I could walk into a bank in broad daylight, rob it and no one but the security camera could describe me. I hate feeling invisible. Even worse is being noticed and treated like my brain is operating on only two of eight its cylinders. “Here’s your change, dear. Can you find your car in the parking lot?” Elvis may have left the building, but I still have all the bats in my belfry. Thank you, very much.

Our concept of age is a curious thing. For many months after Don turned fifty, he had a glorious time telling everyone he was sixty so that he could then hear them say, “You look so young for your age!” It was a joke he played on waitresses, to ask them for their senior citizen discounts only to be turned down while feeding his ego. Then one day we went to a state park and when attendant in the booth told him it would be $10.00 to go to the beach. Don replied, “Does that included the senior’s discount?” thinking he’d get this young girl to pay him a compliment. But she didn’t. She looked him straight in the eye and said, “Sorry. That will be $5.00 then.” Don got an expression on his face like a young cat that just caught his first mouse and he didn’t know quite what to do with it. It was the last time he ever asked for a senior discount.

What is it that William Faulkner said? “The past is not dead. It is not even past.” What did he mean? That we cannot escape our past? It’s true, you know. Our lessons learned and favorite pranks are always with us, tucked away like souvenirs carefully glued down in scrapbooks. I’m telling this to all the young people I know so that one day when they visit me, old and sitting in a wheelchair, they won’t assume that the smile on my face is from passing gas. The smile, I want them to know, could be because I'm playing in my memory garden and dreaming of the days before I started wearing flesh colored gaiters.

Jean Riva ©

Painting: Egon Schiele

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Building Our Own Violins

Do you know what impresses me? That a guy could apprentice to a long line of violin makers and still be able to take the craft to such new heights of perfectionism that people nearly three hundred years later are willing to pay millions of dollars to own one of his instruments. Antonio Stradivari, in his seventy years of professional work, made 1,100 stringed instruments and 650 are said to still be in existence. Truly amazing! From a little stab of maple, some pine, glue and varnishes, and with a methodical persistence to find perfection the Stradivarius was born, a line of instruments with full woody tones unsurpassed even today.

I wonder what it would feel like to be gifted at something. I wonder if Antonio knew he was a gifted. I doubt it. After all the whole town of Cremona in the northern region of Italy where he lived and worked had a history---three centuries long---of making musical instruments. Did he think of himself as just another guy on an assembly line? Like some guy in Detroit punching out automobiles? Or could he feel that his work was special? Antonio must have had some idea; he kept his vanish recipe a secret even from his wife and children and many people feel that his varnishing process is what gave his violins their magic sound. But then again he was making a living and people protect their livelihood from their competitors, so that doesn’t necessarily mean he knew he was creating masterpieces.

I have a book titled, Wherever You Go There You Are. That title amuses me whenever I see the book on the shelf. The author would not be happy to learn that I’ve never actually read the book cover to cover, but I’ve read enough of it to know that it’s about cultivating our ability to live in the present moment. Mindfulness. I don’t know where I am going with this except that I believe a person like Antonio Stradivari must have understood living in the moment. As he worked, he let the woods and varnishes speak to him and he listened in an analytical way that his predecessors, and those who came afterward, hadn’t done. He was not just another guy on an assembly line punching a time clock, picking up a paycheck. He had the “it factor” that Simon on American Idol talks about.

I have a sister-in-law who is a wonderful cook. Not only does her food taste fantastic, but her presentation, creativity and thoughtfulness in menu planning are something that I have long admired. She has the “it factor” in the kitchen. She’s in the moment when she is in the kitchen. I have a niece who is a mother to two sons. She has the “it factor” when it comes to motherhood. Her sister says she’s not just a mother, “She’s a human development specialist.” She’s in the moment when she interacts with her boys.

You can guess what I’m going to say next. Yup, I’m going to tell you that we don’t have to build Stradivarius violins or paint like Rembrandt to achieve a state of oneness with our surroundings. To find that that one thing that we can be passionate about, that something that regenerates our spirit and soul, we just need to look within. We do so many things on autopilot, thinking of past regrets or worrying about the future, instead of seizing the moment we’re in.

Someone in another blog said words to the affect that we live for the little moments in life that tell us that we’re alive. I couldn’t agree more. I would only add that increasing our happiness tenfold can come from practicing mindfulness—of teaching ourselves to really live in the small moments of life. To do that, we need enjoy and appreciate the process of whatever we are doing at the moment. Antonio Stradivari might have said it this way: “If you live in a town that builds musical instruments, build the best damn one you can build.”

Jean Riva ©

Photo: Violin Shop in Detmold Germany

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100 Things About Me

I was surfing the net one day, looking at blogs from around the world and I ran into a cool idea. A blogger who calls herself the Tequila Mockingbird said it’s common in blog communities for each blogger to make a list titled, 100 Things About Me. So, me being hooked on blogging, I decided to give this a try. Here’s my results….

1. My hair is naturally curly.
2. In my entire life, I’ve only lived a couple of months without a dog in the house.
3. ‘Hate’ is not a strong enough word for the way I feel about the color orange.
4. I practically live in sweats and jogging clothes.
5. I’ve never gone jogging.
6. My favorite male movie stars are: Brad Pitt, Toby McGuire, Robert Redford and Tom Cruise.
7. If I could have three wishes come true, one would be to have my dad back again.
8. I detest watching sports on TV or at sports events.
9. I love movies about sports and sports figures---Babe Ruth, Tin Cup, etc.
10. I still have many of my childhood toys.
11. I'm a recovering pack rat who is very good at organizing.
12. My favorite hot house flowers are gardenias and roses.
13. I’ve never had a baby.
14. I like dark semi-sweet chocolate much better than milk chocolate.
15. Currently, my favorite flowers grown outside are sweet peas and sunflowers.
16. I totally don’t understand why people get face lifts.
17. I’m left handed.
18. I’ve only changed a tire on a car three times in my life.
19. I’m fascinated with bungee cords. I say, “Bungee cords are my life” to my husband all the time, but I have no idea what that means.
20. I over-eat when I’m stressed.
21. I used to have a lot of contact with published authors.
22. One of the authors named a fictional character in my honor; another mentioned me in a dedication.
23. I’m dyslexia.
24. I detest the smell, sight, taste and texture of liver.
25. I’ve had pen pals in my life since I was a kid.
26. I’ve lived alone for 42 years of my life (except for a dog).
27. It’s a rare day that I enjoy driving.
28. My favorite flavor of ice cream is mint chocolate.
29. For 18 years, I did commercial snow plowing in the winters.
30. My favorite public personality is Oprah.
31. Phil Donahue used to be my favorite personality before Oprah.
32. I don’t have a favorite, FAVORITE song---just lots of them I love a lot.
33. I rarely wear jewelry, not even my wedding rings.
34. Silver is my favorite of the precious metals.
35. I collect Cracker Jack plastic toys.
36. I like to knit and sew, but I don’t do it much anymore.
37. I have more collections/hobbies than I could name on my fingers.
38. I follow the rules of life.
39. If I could have three wishes granted, one of them would be to a famous artist.
40. My eyes are brown.
41. I love the oil paintings of John Singer Sargent.
42. I made all my own clothes in my teens and well into my twenties.
43. Traveling overseas has never, ever held any appeal to me.
44. If they could bring Paris over here, I’d be the first one in line to see it.
45. My computer desk is really messy and unorganized.
46. I ‘m a very well adjusted person.
47. I’d rather write a letter than make a phone call.
48. For over a decade I edited a readers’ forum where I also wrote book reviews.
49. I love Friends, Frasier and Seinfeld reruns.
50. I finished college exactly 25 years after I started.
51. My favorite fruits are peaches, strawberries, and bananas.
52. I do many things well but few, if any, things really great.
53. I detest fake fingernails on other women.
54. On my desk is a Ziggy cartoon that says, “Your past failures will always overtake you if you STOP chasing after your future success!”
55. I’m a sweetaholic.
56. I still have contact with my best friend through grade school and high school---she lives far away now.
57. Sleeping on jersey knit sheets is my preference over other fabric choices in sheets.
58. I’m pro-choice.
59. I like the color gray for neutrals in a house and for exteriors.
60. When I was a kid, I wouldn’t eat orange vegetables and often had to sit at the dinner table for hours until either me or my mom would break.
61. I was over forty before I would eat squash willingly and now I love it.
62. I can’t spell very well without my electronic dictionary.
63. I could happily live in bathrobes all day long if ‘custom’ would let me.
64. My older brother is my only sibling.
65. I was a bridal consultant in the floral industry for twenty years.
66. For ten of those years I had my own business.
67. For several summers I worked part time filling pot holes in parking lots.
68. I don’t like tattoos on women.
69. My husband and I used to have booths in three antique malls.
70. I like milk.
71. If I could have three wishes come true, one would be to have new knees without going through the pain of surgery.
72. I was a ‘take-classes’ junkie for most of my life.
73. A portrait of one of my ancestor’s is hanging in a national art museum and although thirteen generations separates her from my mom, they looked like sisters. (See photo above.)
74. My husband knows all my secrets and dreams.
75. I love anything that smells like peaches---hand creams, shampoos, soaps, etc.
76. I’m a democrat and a liberal.
77. I’ve only had one beer in my entire life.
78. I could eat or drink anything if it had crème de’ mint in it or over it.
79. My belly button is an ‘inny.’
80. I’ve made wedding flowers for literally thousands of weddings, but I didn’t have any at my own.
81. I’ve own one of my house plants for 46 years.
82. Vanilla bean frappuccionos and carmel macchiatos are my favorite drinks at Starbucks.
83. I’ve only moved twice in my life and both times were within the last seven years.
84. Growing up, red was my favorite color to wear.
85. Now, purple is my favorite color to wear.
86. I have a lot of allergies and have had chronic hives many times in my life.
87. I would hate going back to a world without microwave ovens.
88. I admire and appreciate good cooks, but I have no interest in being one.
89. I once slept overnight on a cemetery plot.
90. My tastes in music cover a wide range from Big Band era stuff to World Beat.
91. On one side of my family my ancestors go back to the Mayflower.
92. On the other side of my family, my ancestors were part of the great Ellis Island immigration era.
93. I’m half English descent and half Italian descent.
94. I’m glad I flew when I was young because I’d be scared to do it today.
95. I’ve never bleached or dyed my hair or had a permanent.
96. Before my husband’s stroke I was in a library once or twice a week, now I’m lucky to get there once every six months.
97. I carry two credit cards in my wallet but I rarely used them.
98. I hate reptiles.
99. The best gift I ever got was at thirteen when my dad told my mom I didn’t have to eat orange vegetables anymore.
100. It took me two days to come up with this list…making one is harder than it looks!

Finding Our Authentic Selves

Maybe it’s because my dad was a life-long golfer that I love movies with a golf theme. Except for an eight week course I took back in the sixties when I tried to love the game as much as he did, I’ve never played myself. Never-the-less the rich analogies and metaphors used in golf movies can easily apply to life itself, and I guess that’s what makes the ‘underdog’ sports movies like The legend of Bagger Vance so popular with non-athletes like me.

In a nutshell, The legend of Bagger Vance is about a disillusioned World War I veteran---Junah (played by Matt Damon)---who reluctantly agrees to play a game of golf to help a friend save a new golf course in Savannah, circ 1930, playing against the great Bobby Jones and Walter Hagen. Junah was a local golf pro before the war but had spent the last fifteen years being wasted. Trying to practice golf again, he finds the game futile until Bagger Vance---played by Will Smith---comes into his life to be his caddy and to teach him that the secret of golf is the same secret to mastering any life challenge.

“Inside each and every one of us,” says Bagger Vance, “Is one true authentic swing... Somethin' we was born with… Somethin' that's ours and ours alone... Somethin' that can't be taught to ya or learned... Somethin' that got to be remembered... Over time the world can rob us of that swing... It gets buried inside us under all our wouldas and couldas and shouldas... Some folk even forget what their swing was like.”

I went to the library today for the first time since shortly after Don’s stroke in May of 2000. Before the stroke, I was in the library at least twice a week. When I came home today and saw the rerun of The Legend of Bagger Vance on TV it made me think of all the caregivers, like me, whose ‘authentic selves’ got lost in the responsibilities of caring for someone else. Most of us, I think, lost that sense of being able to almost hear our surrounds breathe when we are happily perfecting our swings---wherever that swing might have taken us in our pre-stroke days.

At a critic turning point in the movie, Bagger tells Junah, “Ain't a soul on this entire earth ain't got a burden to carry he don't understand, you ain't alone in that... But you been carryin' this one long enough... Time to go on... lay it down...”

That movie line got me to thinking about why it is that we all tend to carry our burdens around long past the point when we should or could let go of them. For Junah it was the burden of being the only man to have survived a dangerous mission that he couldn’t let go. We caregivers aren’t running away from something filled with that much guilt but, just the same, I’ll bet there are many caregivers and survivors alike who wonder why we survived the trials and tribulations that life handed us, carrying the burden of the stroke event long past the point when we should quit wondering and just start living again. How many of us need to take to heart what Bagger told Junah?---that it was time for him to come out of the shadows and let himself remember HIS swing. I think that may be very good advice for some of us who’ve forgotten who we are.

Can we get our “grace in motion” back? Can we find our authentic selves again? Today I asked myself that question and I answered that I think I’m already am headed in that direction. I’ve been so wrapped up in the stroke support world these past few years that I forgot who I am, what my true swing in life is really all about. Sure, I am still a caregiver and always will be for as Don is a live, but his stroke doesn’t have to consume my life anymore. I can steal an hour here and there to take the advice Bagger gave Junah when he said, “You lost your swing... We got to go find it... Now it's somewhere... in the harmony... of all that is... All that was... All that will be...” I like that thought.

One of the scenes in this movie that I loved the most happened just before the 18th hole when Junah’s ball in the rough moved a few inches. By the rules of golf when that happens the golfer is suppose to call a stroke on himself but no one saw this happen except Junah and a small kid. Thus a moral dilemma is set up when the kid begs him not to do it, not to tell. “No one will ever know, I swear!” the kid says to which Junah replies: “I’ll know.”

This scene is based on a real incident that happened in a tournament between Gene, Sarazen, Bobby Jones and Walter Hagen. When it happened, the marshals left if up to Jones to call it a foul, or not, and when he did call it on him self the marshal declared it to be a “stunning act of sportsmanship.” Jones disagreed. “You don’t commend a bank robber for not robbing a bank,” he said. “This is the way golf should be played.” He eventually lost that U.S Opener by one stroke. The stroke he penalized himself. Seeing the fictionalized version of this incident reminded me of when my dad told me about this golfing, Hallmark moment years ago, inciting a long conversation about morals and ethics. I’ve used that “I’ll know” line on myself every since whenever a moral dilemma might tempt me towards a direction that I shouldn’t go.

Movies about sports, like The Legend of Bagger Vance, are usually pretty inspirational to me and this one was no disappointment. Where else can you hear philosophical thoughts like: “There's a perfect shot out there tryin' to find each and every one of us,” as Bagger put it. “All we got to do is get ourselves out of its way, to let it choose us.”

Jean Riva ©

Painting by August Macke

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Old and Obsolete

I'm measuring up the windows in the Blazer, in the event we have to move in and run away from home. Hey, we'll need curtains for privacy, won't we, if we're going to live in car. Address: Wal-Mart's parking lot. Mitt Romney was just on TV saying how The Big Three has to get rid of their retirees. Oh, that's just great! What does that mean? That GM (where Don gets his retirement check) has to line us up and shoot us all like wild horses in the way of 'progress' because we're no longer useful to society? I love the flip way millionaires can say stuff like that as if the word "retirees" is not a collection of older people, most of whom too old or too sick to go out and get jobs to replace their retirement checks.

People like Mitt Romney don't have a clue how much fat has already been skimmed off the GM stew pot, how hard the company and union have worked to bring the labor costs per car down so they'll be competitive with foreign owned manufactures in the near future. With the 2007 GM/UAW contract they agreed not to give new hire-ins pension rights and starting in 2009 the UAW is scheduled to take over the health care costs. And older workers are being replaced at the rate of 20% per year. Getting rid of the health expense alone will save the company six billion annually. Meaningful restructuring has been going on at GM, contrary to Mitt's opinion. Great hybrids are in the pipeline ready to come out next year and the employee pay package per hour including benefits is on course to drop by 2010 to within a Starbucks cup of coffee to what the foreign owned car makers are paying in their North American workers. If Wall Street hadn't failed, drying up the credit market, GM and the other Big Three wouldn't have had to ask Washington for the bridge loan.

As you can see, on top of the other normal caregiver woos and worries, I have another excuse to indulge in comfort foods in the wee hours of the night. "Fattie, fattie, two by four coming through the kitchen door." Do you think I should do some more measuring in the Blaze to figure out where I can put a small refrigerator to keep me supplied with mint chocolate ice cream? Or may old and obsolete people aren't allowed comfort foods. Oh, well, I've got time to chart out the dumpers in the area that have eatables. Maybe someone will take pity on the homeless and throw out some Twinkies.

On the good side, after eleven months, four rejections and a court hearing Medicare now has to pay for Don's "new" wheelchair---his first replacement since the stroke in 2000. It ticks me off that they gave us so much trouble when I know two guys from speech class who have had several replacement chairs in that same time frame and neither guy is 100% dependent on their chairs like Don is. The orthopedic place that fitted Don's chair said they are hassling one in six applications now. Typical government waste, in my opinion, because a ten minute appointment with one of their own disability doctors could have assessed Don and saved a lot of money. No, they'd rather force us into court. They went so far as to use a statement I made right after the stroke (and got recorded on his medical records) about how Don's house (at the time) was not wheelchair friendly. I had to get a letter from our builder to prove we built a Universal Design, totally wheelchair friendly house. That was rejection number two.

Don't get me started on rejection number three which had to do with Don supposedly not having a caregiver to help him get around in a chair. Hello, what am I? I think it's hurt us that I've never asked for or gotten any outside help to care for Don. Medicare assumes he doesn't need any. Rejection number four was because they said we hadn't proved that he had a stroke, a fact that was clearly documented on the same hospital discharge paper where it said his house was not wheelchair friend. Typical fun and game in the caregiver world of insurance and Medicare.

It's been a long time since I've updated this blog. Its neglect was not by design but rather through laziness. I do keep the dog's blog up once or twice a week. So if you ever wonder what we're up to, via the dog's view of our post-stroke world, check it out. He's the joy of our lives. It's wonderful having a lively little thing around to make us laugh. Stroke and speech wise nothing much has changed. Don is still happy and wakes up every morning singing, "Jesus loves me, oh, well" and generally singing nonsense syllables through out the day. If things go bad and money is tight, I'm going to have to cut Don's anti-depressants in half and that will probably cause him to cut his joyful 'songs' in half as well. So if you ever see an old couple in a Blazer and the guy is happily singing "Jesus loves" and the woman is cursing "Jesus, what are we going to do?" that will be us. Wave and smile, okay? ©

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Caregiver Respite

I received the following e-mail from an internet friend who asked me to share it. It has some great resources that I'm happy to pass on via my blog.


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Hi Jean,

It's Lincoln from Connectingcaregivers.com. I know how important it is to take breaks from caregiving in order to recharge your batteries. There are a few options if you are looking for respite care, namely;

In-home respite
Specialized facility
Emergency respite
Sitter-companion services
Therapeutic adult day care

Here is a list of some respite resources that I know have been very helpful to family caregivers.

Easter Seals
800-221-6827
http://www.easter-seals.org

Faith in Action
877-324-8411
http://www.fiavolunteers.org
info@fiavolunteers.org

Family Friends
National Council on Aging, Inc.
202-479-6672

National Adult Day Services Assocation, Inc.
866-890-7357
http://www.nadsa.org

National Respite Coalition (NRC)
703-256-9578
http://www.archrespite.org/NRC.htm

I'd like to leave you with this quote I found recently.

"A single sunbeam is enough to drive away many shadows."
~ St. Francis of Assisi

Best,
Lincoln N.

PS: I'd greatly appreciate it if you could forward this message to other family caregivers.

You can sign up for the newsletter at http://connectingcaregivers.com/familysignup

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Accepting the Failings of Age and Disbilities

Today we went to the sight-in day for disabled deer hunters. The two year old program is run by a small army of volunteers who help people in wheelchairs get out in the woods during hunting season. They use specially made blinds and each disabled person is assigned two hunting guides who stick with them and are not allowed to hunt themselves. The group also puts on a weekend long deer camp where the disabled guys can all sit around doing guy things, something that is often missing in the lives of men who use wheelchairs.

Don went on the hunt both years and he was looking forward to going this year but today he didn't pass the gun safety test. Cognitive issues. After the three gun safety teachers made their ruling I had the job of telling Don. It was hard on the guys to fluke him. They all like Don a lot but it's not fair for him to tie up two guides and a blind in the woods if he's not going to hunt. They have a waiting list to get into the program because they can only take 30-32 hunters into the program.

On the way home, I asked Don how he thought he did on a scale of 1 to 10 and he said a five. Then I asked him if he would be surprised if I told him that he flunked the safety test. He answered, "Don't know." He took it pretty good when broke the news---sad, of course---but he's always been a stickler for gun safety so I was able to use that fact to explain it to him so he could accept it. I told him that he's hunted a lot of years with a good, clean record and it's better to leave the sport that way than to take a chance on marring that record with an accident. He got two bonus years after his stroke that we never would have dreamed possible and I told he has to celebrate that fact.

It hasn't been a happy evening and it won't be a month filled with anticipation like it's been the last two September/Octobers. But he does have a consolation prize. They asked me if I'd like to volunteer at the deer camp so Don can come along and hang out as the hunters and their guides come in and out and at after dark for the bonfire and dinner. He seemed to like that idea today but who knows if he'll feel the same way tomorrow or the next day when this all sinks in. I'm a little worried about depression catching up with him someday as little chucks of his freedom and personality get chipped away like this. Of course I say this every time there's another little loss like this but somehow he manages to keep getting up every morning happy and singing at the top of his lungs. How does he do that---find acceptance of the failings age and serious disabilities? ©

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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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Mid-Summer Update

We went out for pizza with old friends last night which was both a happy and sad time. Happy because it's always great to see old friends but sad because it accentuated yet another growing post stroke problem---Don's isolation. His ability to stay focused on our group and participate in conversation was severely hampered by the hearing loss he received last fall at the Disability Deer Hunt Sight-in Day. A volunteer helping Don didn't make sure he was using ear plugs so now in places where there's a lot of background noises, he can't follow the thread of conservations. Even without background noises it can be a challenge requiring me and others to repeat things three or four times. Part of that is aphasia/language processing issues from the stroke but most of it is that damn hearing loss. The audiologist says there's not much you can do about that type of hearing loss because it's to the center nerve and turning up the aids only makes the background noises all the more annoying.

It's sad because the stroke itself robbed Don of so many opportunities for social interaction like not being included on house party guess lists because the location aren't wheelchair friendly or because old activities we used to do with other couples are no longer a commonality that bind us together. Since the sight-in accident Don can't even successfully "talk" on the phone anymore. In the past he used to enjoy listening to friends and family talking about their lives. Now, he ends up putting the phone down about half way through the call. Thankfully, he seems to be handling his growing isolation fairly well but that doesn't stop me from feeling badly for him. He used to be so engaged with people both before and after the stroke until recently. It's like watching a falling star and holding your breath knowing eventually it will burn out.

But we're keeping busy, almost too busy for my tastes. We're out of the house every afternoon doing what we can to enrich our lives---shopping, going to local parks and free summer concerts, going to restaurants, art shows and the YMCA, giving the new puppy playtimes and taking him to obedience classes. It's easy to keep busy in the summer.

I'm taking two aquatic pool classes when I can fit them in. One is jazz dancing. The instructor actually incorporates dance steps from all the decades of my life and they bring back some great memories, listening to the music that goes with the exercise. The instructor for the other class combines boxing, kick boxing, cross country skiing and belly dancing moves. When I get finished with that class I'm energized and ready to take on the world. Where's my Wonder Woman costume when I need it? I could wear it home and feel like I'm appropriately attired. But as the day wears on my aches and pains remind me that I'm still an old woman. Such is life. We dream of Nirvana and even achieve it from time to time then we slip back to where we began leaving our Zen living-in-the-moment pleasures behind. ©

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The Long, Hard Road to Happiness----

Have you ever wondered why it is that some people who have so little are able to sincerely appreciate what they do have while others who have so much can’t appreciate it at all? We all have an occasional blue day from time to time when the pity pot seems to be the most comfortable chair in the house. I’m not talking about those fleeting times where at the end of the day we stand up and realize we’ve worn a big red ring on our butts from sitting too long where maybe we shouldn’t have taken up residence in the first place. I’m talking about the general approach that some people have towards life itself where their negative disposition mistakenly makes them think that their pain and disappointments are always worse than their neighbor’s pain and disappointments. I’m talking about falling into the trap of using pessimism versus optimism as a general philosophy for living.

I’ve always been an optimist. Even in my darkest hours I’ve been able to recognize that wallowing in negative thoughts won’t help me climb back out of the muck of any given life crisis that all humans, at one time or another, go through---death of a loved one or a falling out with lover or friend, major disappointments and depression, loss of good health. For me, getting back up after a punch in the gut comes from being able to see that my metaphorical glass of life is half full---not half empty. It’s a personality flaw that I have to struggle to have sympathy for those who spend their entire lives describing their glasses as half empty. Sure, I understand that we’d all like to have our glasses over-flowing but more importantly I also understand that those times when they are over-flowing are as rare as penguin eggs in the desert. The optimists will tell you that the adversities we meet while we’re striving towards that goal is what makes a person strong and that our heartaches are what makes love---when it comes along---all the sweeter. The pessimists, on the other hand will throw in the towel the first moment things don't go their way and they walk around in circles like both of their arms are tied behind their backs. They delude themselves into believing that they have no control over their own happiness.

It must be hard being pessimistic, to aimlessly drag those woo-is-me thoughts and resentments around where ever they go. Optimists, on the other hand, achieve more in life---have more, are loved more---not because some divine intervention sprinkled magic fairy dust on some of us and not on others. Optimists achieve more because they don’t give up on themselves the way people with a defeatist attitude do. Pessimists don’t see each new day as a ‘do-over’ that can change the course of their personal history. They are so busy cataloging yesterday’s losses and tomorrow’s grim predictions to realize that they are stealing their own futures in the process. Pessimists are chickens, plain and simple. They are too afraid to roll the dice, take a chance and give up their defeatist attitudes long enough to work as hard at being happy as they work at being miserable. Nothing comes without a price tag, happiness included.

Life is full of hardships, challenges and heartaches for all of us and I am very proud to be married to a stroke survivor who never gave up on himself even when the medical community did. We---not just him alone as some survivors would have you believe of caregivers--- WE worked hard and proved the diagnosis of ‘vegetable for life’ wrong in every sense of the phrase. Some people out there in the stroke community don’t believe that it’s possible for someone who can’t walk, talk and use one arm to truly find joy in living again. That, to me, is both a sad and an arrogant attitude because it says that those non-believers value perfection to the point of being prejudice towards anyone who isn’t physically or mentally perfect in their eyes. I won’t deny that it’s often been a long, hard road getting to the happy place we reside in today and if that happiness annoys the pessimists of the world then I say, “Either follow me or get out of the way."

Jean Riva ©

No matter how bad things are, they can always be worse. So what if my stroke left me with a speech impediment? Moses had one, and he did all right. ~ Kirk Douglas

No pessimist ever discovered the secrets of the stars or sailed to an uncharted land or opened a new heaven to the human spirit. ~ Helen Keller

Optimism is a happiness magnet. If you stay positive, good things and good people will be drawn to you. ~ Mary Lou Retton

Winning is a habit. Unfortunately so is losing ~ Vince Lombardi

painting by Henri Rousseau

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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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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Chance and Circumstance

Some days just start out wrong. Friday was that way for us. We went here and there and everywhere but nothing was working out. For example, at the township offices we found out that you can only get dog licenses there January through March. After that, you have to go downtown to the county building. Little Levi is still not legal. Seven stops that day and none of them worked out including the place where we wanted to eat lunch was closed under unusual circumstances.

Having our appointed rounds of errands go off into never-never land it was time for a decision. 1) We could go home grumpy and out of sorts because we'd have to spend another day in do-overs; or 2) we could declare a vacation day and go home after doing something fun. We picked door number two and went to a small town museum that by rare coincidence happened to be open that day. We've wanted to go to that museum for three years but they're only open by chance and circumstances like days when the town is celebrating something special. Bingo! Our chance we had come to tour the place and by the circumstances of everything else going wrong, we had extra time on our hands to do just that.

Life is that way sometimes. You plan. You hope. You take the steps needed to get you where you want to go and a gutter ball goes down the lane leaving all your pins still standing. Those are the times when I ask myself my favorite coping question: "Is this a disaster or an inconvenience?" Sure, it's awesome when things go just right and all your metaphorical pins go down in one powerful smack of the ball. It's almost as satisfying when it takes a second ball to get the job done. But I'll let you in on a little secret: if you live life without keeping score, you can still feel good about the gutter balls of life, about changing directions in the middle of the stream. Yes, it would have been nice to get all our errands done on Friday but if we had, we would have missed out on our impromptu mini vacation and going home feeling like we'd scored a happy memory instead of going home grumpy. ©
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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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