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.

---------------------------

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
.

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 ©
.

Playing Pool One-Handed from a Wheelchair

I saw a photo recently of a stroke survivor in a wheelchair who was playing pool using a standard bridge to help with the shot. There is a much better device to use for one-handed pool players---standing or seated in a wheelchair. These can be made for under $5.00. There are
similar ones on the web but they cost a small fortune. A woodcarving club made several of these for Don and his speech class buddies, but anyone who is half-way handy could duplicate them. The body measures 1 3/4" x 2" x 3/4" and the wheels are 1 1/2". The hole fits a cue stick. (This cue aid is photographed with a pencil, not an actual cue stick.)

Also, a Google search can help you local billiard leagues for persons who use wheelchairs.

Source: My Aphasia and Stroke Caregivers Guide
©

Stroke Anniversary Number Eight

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

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

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

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

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

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

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

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

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

.

The Worst and the Best of Recent Days

Life goes on, doesn't it, when you're not looking. I can't believe it's been so long since I've updated this blog. The simple fact is I've been busy closing one chapter of our lives and starting another.

If you're not an animal lover you may not understand how attached people get to a family dog and how difficult it is to have that pet put down after living with him for nearly sixteen years. That is the chapter we just closed. Cooper was a challenge to get through puppyhood but he was as smart as a whip, a character, and he became Don's constant companion these last eight years since his stroke. He will be missed.

Before the decision was made to put Cooper down, it was getting depressing watching him go down hill and knowing that we couldn't do anything to change that. In the same time frame we had also visited a relative with the most aggressive form of Early Alzheimer's. Seeing how fast she had deteriorated both physically and mentally in such a short time had put Don and I both in a funk that was hard to pull out of. Seeing a woman years younger than me, as close to being in a fetal position as one can get in a wheelchair, unable to even make eye contact or hold a conversation was shocking. Especially since just a few months ago she was walking around and physically strong at least. Between the dog and thoughts of our relative our funk felt like imminent death was surrounding us.

But life goes does on and the new chapter we started is with a new puppy, a miniature schnauzer who was thirteen weeks old when we got him. Along with all the normal puppy stuff little Levi has to learn, he also has to be taught to have a healthy respect for Don's wheelchair without fearing it and to learn how to sit-stay when ever Don transfers. The former being a safety issue for Levi and the latter being a safety issue for Don. The puppy is doing well with both. I won't go into details here about our new puppy, though, because he is well documented in my dog's blog. (Find the link in the right hand column if you're curious.) It's enough to say that it's been fun having a new life in the house. Sometimes I can't contain my smile when I look down at the sleeping little imp.

So along with all our other comings and goings, we've added puppy socialization classes to our schedule and later this summer, obedience classes will come. Levi probably will also get us out to the nature trails this summer. It's something we've wanted to do for a couple of years and now we've got a four-legged obligation to spur us to act on that desire. He'll need to learn about things like birds and bugs and playing with blades of grass and not to bark at the wind. If only we could teach him to use a credit card and order flowers for Mother's Day..... ©

P.S. One of the entries in Levi and Cooper's blog touches on Don's aphasia, if you're interested here is a link to that entry. Click here.

.

We're Training at the YMCA

Life has been busy in the past few weeks since my husband and I joined the YMCA. They've got him on a three day a week program of weigh training for his left arm---his right one is totally flaccid with not an ounce of movement. And he's doing a series of standing and sitting from his wheelchair, using a weigh machine to pull himself up. While standing, every third time he tries to stand on his neglect leg (right) for a few seconds. Supposedly this will to help wake up the nerve endings. Already, I can see an improvement in his transfers in and out of his wheelchair. This winter after his aorta aneurysm surgery it was taking as many as fifteen tries for him to stand up enough to transfer and today he did it several times on the first try. Strong transfers can make the difference between staying at home or going to a nursing home so this is a worthy goal, believe me.

Don is walking some at the YMCA, too, and also working on leg exercises---some of which are trying to wake up the muscles that can help him kick his right leg out and up. When Don was in physical therapy last fall, they isolated the muscle groups that aren't working for him so those are the ones we're hoping to fire up now. All the "normal" people coming and going from the Y are encouraging and positive to Don as they pass by. It's a heart-warming and upbeat place to go.

When Don finishes up his routine, I leave him at the Y's coffee shop and then I go do the bike or treadmill for fifteen or twenty minutes. The original plan was for me to do the swim classes on Tuesday and Thursday, which are early in the morning before Don gets out of bed. (I loved those classes when I took them last summer.) But so far, our weekly schedules have been so crazy-busy that it just hasn't worked out that way. That will change soon. At least I hope so because I just signed us both up for a sit-and-fit group class, also at the YMCA. It will probably be a little low key for me but I have to be there with Don because of his language disorders, so I decided I might as well take it too. It's an opportunity for him to interact with other people with physical limitations which I figure will be better for him than the exercise.

On the speech front: A month or so ago I mentioned that Don---for the first time since his stroke 5/21/2000---spontaneously tried to spell a word he couldn't say. This past week he couldn't say 'celery' and I ask him to write it and he was actually able to do it without any help at all, misspelled but still recognizable. His language is still mostly nouns-only with a very few two and three words phrases thrown in and virtually no written abilities, not even the alphabet. The professor who oversees the speech group we're still going once a week recommended working on writing, since Don's brain seems to be ready for it. So we're back to doing homework at the kitchen table again.

There you have it, the reason why my real life is taking time away from my virtual life. ©
.

Where, Oh, Where is the Fun?

(Read with tongue-in-cheek)

Caregiving sucks, you know. Being a housewife sucks. Don’t try to talk me out of it! Don’t try to tell me I’m an angel or a saint---or worse, yet, “A good woman.” Don’t say, “That’s okay, dear, tomorrow your PMS will be better.” Don’t tell me about the silver lining after the storm. And don’t mention the fable about caregivers being given no more than they can handle. I know all that stuff. I was around when they invented that spin. What I don’t know---and maybe you can enlighten me---is when do we get to have some fun? When do we caregivers get to push all the pill bottles aside, forget the daily therapies, hang up the pots and pans, let the dust bunnies mate, and say, “Enough already! I’m going sky diving!” Well, maybe not sky diving. I’m afraid of getting on step-ladders. I’m old and I forget my calcium supplements too often to test the god of broken hips.

Okay, so what DO old people do to have fun? Let’s see. Don does a version of park bench sitting. You know about that, don’t you? Old guys sitting around pretending to play checkers but they're actually doing stuff like watching young people go about their mating rituals, yuppie business men with their brief cases in one hand and cappuccinos in the other, and little kids doing what little kids do best. Bench sitters have a lot of fun. Every so often they get to say to themselves, “Been there, done that.” They might even get to laugh when a yuppie steps in gum or a little kid's ball lands in a pond. Old men get to flirt, too. Like making a pharmacist turn three shades of red by telling her she's cute. My husband has fun doing that. Old men can come off sweet---most times---when they tease the girls and make them blush. But let an old lady try that. Bells would go off. A voice-over would come down from the clouds saying, “Step away from the hunk! You’re scaring him!”

I could knit, sew or quilt for excitement. Whoopee. Been there, done that. I could spit-shine the house. Been there, done that. I could learn to cook---you’ve got to be kidding! This old lady would find that torture. I've avoided it all these years. Why start now? I could buy some new make up and learn how to paint my face. Rudy red lips, black eyebrow pencil lines that over-shoots its mark, round circles of bright rouge plus mascara that runs down the cheeks. I’ve seen that look on other old ladies and I figure it must fun to play with your face that way. But face painting wouldn't be exciting like sky diving or roller derby or dancing under the moon. Or maybe I could pack my husband in the car and drive around until I get lost. Getting lost at my age IS thrill seeking because if you get caught doing that too often they test you for senility.

It's time to get back to my housewife and caregivers duties. The pills don't put up themselves. Laundry baskets aren't self-cleaning and if I don't let the dog out soon he's going to pee on the floor.

Jean Riva ©

Painting by Franz Von Stuck