The Language of Clothing on the Planet Aphasia

Watching my husband trying to decide what to wear to today reminded me of the year we moved into our new house, several years post stroke. Don’s got a closet, now, that he can roll into and with this closet came his training to relearn to pick out his own clothing for the day. It was a difficult and time-consuming project that brought Shrew-Lady swooping into our bedroom almost as often as Nancy Nice Nurse. Shrew-Lady had a tendency to lose her patience while Nancy Nice took her careful, cognitive training right out of the Caregiver’s Guide to Building Self Esteem.

Don, in the closet today, was almost comical. Scratch the ‘almost’ out of that sentence---he was comical. He was trying to decide between his deer hunting shirt with a matching logo hat and a tee-shirt with a zipper front John Kerry fleece jacket. (Ya, he knows that Kerry lost the election a long time ago, but he loves the joke of wearing the jacket now.) Politics or hunting? Hunting or politics? After five minutes of this dressing dance, I had to resolve his dilemma so I could get in the closet or I would have had to go out today in my common sense, white undies. That would not have been a pretty sight. Hunting won. Politics will still be good next week and his big adventure in the woods will be old news by then. The choice was a good one, everyone was anxious to hear about how the hunting day turned out.

Stroke progress comes in many small and wondrous ways. They creep up so slowly sometimes that so you hardly notice it happening. Don has gone from not knowing a shirt from a pair of pants and not having the words for colors to deciding something as complex as which of two fashion statements would stand for his mood and sense of humor for the entire day. Clothing has become a silent form of communication for Don. I just counted; he has twenty-seven logo tee shirts and a dozen more in a box that our dryer mistreated. And then there are all the baseball style hats lined up on hooks with saying and logos on them.

Don’s “language of clothing” works both ways, too. If he sees a logo shirt or hat on someone, he’ll roll up to that person and point to the writing or picture on their clothing. The stranger usually ends up reading it to him thus forcing them to interact with an alien from the Planet Aphasia. Most people are very nice when he does this, a few are uncomfortable, at first, being confronted by a speechless person in a wheelchair but Don usually wins them over quickly.

Don's joy in reading tee-shirts is so evident that people have been known to give him shirts. It happened twice this month. Both shirts were custom-made and neither person would let me pay for the tees. They just ordered the shirts and presented them to Don when they saw him rolling around, and I’m not talking about gifts from friends. Both of these last shirts came from nameless acquaintances in places where we frequently go.

My clothing is not as vocal as Don's but I did buy a chenille bathrobe recently and it talks to me. It gave birth to purple dust bunnies all over the house and they are screaming, “It’s time to get off the computer and clean house!

Jean Riva ©

Thursday and Friday in Caregiverville

Don has taken to aquatic therapy like a duck to water. It's an old simile but I can't think of another one that fits any better. Thursday the physical therapist had him in the pool for a half hour laying on his back peddling bicycle style, spreading and closing his legs, kicking like a swimmer and drawing his legs up to his chest and kicking them back out. It's quite amazing to see his stroke neglect leg actually moving so much. For the second half of the hour she had Don standing on his feet doing sideways walking, squats with his back to the side of the pool and some other exercises that works on improving balance. It's quite difficult to talk with Don in the pool where he isn't able to wear his hearing aids and between this session and the last the PT had made drawings and enclosed them in plastic. These visual aids really made a difference. I thought that was a pretty cool thing for her to do.

The physical rehabilitation place we're going to for Don's land and aquatic therapies is sixteen miles out in the boondocks from where we live. On the way home from the place yesterday I missed a turn on a rural road and got lost---sort of. It's hard to get truly lost in a county where all the roads run true north/south and east/west with the north/south roads all numbered in sequence. The east/west roads are mostly named after the lakes they run past. They don't call Michigan the water wonderland for nothing. Lost or not, we ran south as the numbered roads dropped down to where we thought we should cut east for a while. We took one of the few roads that wasn't named after a lake.

That put us on Red Pine Road, a road we'd never been on, and it didn't take us long to figure out why that one road out of a half dozen we'd past wasn't named after a lake. The towering pines along both sides went on for miles and they were so tall they nearly blocked out the sun over head. Red pines are self-pruning and have long lengths of their lower trunks that have no branches and the conifers looked as if they'd been precisely planted six feet apart in rows parallel to and perpendicular back from the straight-as-a-pin road. We figured they could have been part of a post-depression era New Deal/WPA project. Michigan has many WPA "ghosts" lingering about. (The Work Project Administration, under Roosevelt, was designed to overcome the widespread unemployment that nearly destroyed our country back then.) It was neat driving through a piece of history---however the trees got there---as the lowering sun cast a ladder-like pattern across the pavement.

Today I started out down at the YMCA walking on the treadmill. If someone had told me a year ago that I could stand up for a half hour straight---let along walk a half hour on a treadmill---I would have told them they were crazy. Have I said lately how much I love my new knee? Nine weeks out from the surgery and it's the only joint in my lower body that doesn't yell at me, "Jean, you're getting old!" I'm even starting to look like I belong in the gym. Gone are the polo shirts that get too sweaty under the collar. Gone are the wrap-over-the-head earphones. Yup, I'm sporting discreet little ear plugs to watch Ellen or Oprah on the treadmill's build-in TV. I'm also carrying a water bottle and wearing tee-shirts and sweats. The latter attire will be next to go as soon as I figure out where people go to buy those cutesy little workout clothes with the racing stripes up the sides that make you look like you're going faster than you really are.

My afternoon was spent as the Chevrolet dealership getting the oil changed and everything up to snuff for the coming winter months. The heater wasn't working right, the tires needed rotating, all the fluids needed to be checked and topped off, and the computer was telling us that the battery was dead when it's just a spring chicken and was perfectly fine. With all our Blazer issues resolved we finally left the place two-hundred dollars poorer and I had a headache from watching Don bounce off the walls in the waiting area. He had such a good time trying to interact with all the people there and my aphasia decoder ring got a royal workout. Sometimes I'd like to park Don and his wheelchair facing a corner and tell him to "stay!" until I can have two consecutive thoughts of my own.

Jean Riva ©

Tuesday with Ma and Pa Kettle

It was cold this morning when I was due to leave for the YMCA for my arthritis pool class. Okay, cold is bad and any old excuse will do when you hate exercise as much as I do. I debated in my head: "Go and be good or stay home and be bad." Logic won out but only because I had a burrito for dinner last night and I didn't want it to go straight to my hip. So I talked myself into a compromise. I'd go but I'd walk the treadmill instead of getting in the pool. Everything was fine until I got home with a hot cup of coffee in my hand. The coffee was calling for cranberry scones so I ate enough scone calories to replace the ones I burned up at the Y. I could teach a class called, Fat, How Not to Lose It.

Don got up---for the second time---after I'd scuffed down those English biscuits. Good. I figured if no one saw me eat them, then they don't count. Right?

Back to Don. Instead of getting ready for his shower, as he was suppose to be doing, the gods of aphasic insisted that we have a "conversation." For fifteen minutes Don made zoom, zoom and car brake noises to accompany his hand gestures while I played twenty-one questions trying to figure out what was so damned important that he'd chance running our shower times so close to the wire that I'd get cheated out of mine. But I'm a genius at decoding aphasia/apraxia talk---if I do say so myself---and I finally figured out that Don wanted to buy gift certificates at a gas station to give to the guys he hunted with last Saturday. Sunday I had been saying we should stop at Applebee's on the way home from speech today to get a couple of gift certificates. I figured if his two hunt guides took their wives out to dinner on Don then the wives would feel better about letting them go again next week. Gas money won out. When it takes a stroke survivor fifteen minutes to convey a simple thought, it's hard to argue with the guy.

We took off for speech therapy and I drove the thirteen miles through town traffic with a Starbuck's caramel macchiato in hand. Glory hallelujah, I made it with nearly no red lights to slow me down and no other drivers that made we want to flash them my middle finger. Not that I would do that but I'm old and you never know when that common sense and good taste filler in your brain quits working for you.

We pulled up to a nearly empty parking lot that should have given me a clue that something was amiss, but it didn't. I unloaded Don's wheelchair, parked him inside it and took them both up to the speech clinic. That's when it hit me that this was a 'reading day' for the students and there would be no therapy. Crap! We could have been relaxing at home after a killer run of days that all kept us busy from morning to night.

On the way home, we'd planned to stop at the gas station to get the gift certificates and as I was about to pull into Meijer when Don wanted to talk. Oh, God, his aphasia and my driving don't mix well. Thankfully, it didn't take a rocket scientist to figure out that his pulling on the steering wheel meant he'd changed his mind about where to get the gift certificates for his hunting guides. After briefly decoding Don's aphasia speak, I figured out we needed to continue on down the road to Applebee's. And they say women are the ones who can't make up their minds.

Thus ends another Tuesday adventure in the life of Ma and Pa Kettle down on the urban farm.

Jean Riva ©

Back from the Disability Deer Hunt, NWTF Wheelin' Sportsmen

If you measure the success of a disability deer hunt by the number of happy faces that came back to the deer camp at dark, then this year's hunt was an overwhelming success. If you measure a successful hunt by the number of deer twenty-six guys in wheelchairs were able to put on the brag pole then you'd have to say the deer won yesterday. Only two were harvested. The spouses of other hunters and I was at the deer camp waiting for our guys to come back with their guides and a seasoned hunter/volunteer told us that it was just too warm and windy for the deer to be cooperative.

Unfavorable weather or not, Don and his two guides saw a total of twenty deer and Don had the opportunity to draw on five but he didn't take the shots. Knowing Don as well as I do, he wouldn't shoot if he didn't think he had a clean and accurate shot which, of course, is true of all serious sportsmen.

From the stories Don's guides came back with you could tell they all had a genuinely good time. At one point, one of the guides said, they were laughing so hard he nearly pee his pants and they were laughing all day long. Our great-nephew was one of the guides and he said Don had them working every minute: jacket on, jacket off, snacks, water, urinal bottle, coffee, more snacks, gloves on, gloves off and then the constant game of twenty-one questions you need to play with someone who has a language disorder. "Aunt Jean," he said, "I don't know how you do this every day." They took lots of digital photos so I'm hoping to share some later when he sends me copies. The one posted with this entry was taken as we were waiting for Don's ride to pick him up before the hunt. Now there is a Christmas morning kind of face, don't you think?

The deer camp, this year, actually had the feel of a real deer camp---duh, it was real. What I mean is last year it was inside the sportsmen club but it was wall-to-wall wheelchairs and quite a comical thing to hear and watch when one of the guys near the back wall needed to go to the bathroom which was at the other end of the building. This year the Chapter of the Wild Turkey Federation who sponsored this event had pitched two large, old Army surplus tents. Nothing smells like old canvas. When I was a kid we spent summers on a lake and we kept a surplus tent pitched near a stream by the woods where all the lake kids played cowboy and Indians. Walking through those tents yesterday sure put me in a great mood. But it was such a warm night for Michigan that very few people hung out inside the canvas.

The deer camp also had a bonfire big enough for 12-14 people to sit around with others standing or sitting in a second tier behind them. The grills that they cooked dinner on were not far away. The local VFW and another organization, whose name escapes me, cooked for the hunters and the volunteers this year---one at lunch time and the other at dinner. I missed the to-die-for wild turkey chili this year; it was on the menu for lunchtime. It must have been quite a project to cook for the continuous stream of hungry people that wandered in and out of camp all day and evening.

'Michigan Out-of-Doors' came to film again this year. But I'm not sure it will be as all-encompassing the way last year's hunt was film. Last year was Michigan's first disability deer hunt. This year, I was told, they focused on filming the building of a disability hunting cart---kind of like a golf cart---and they wanted to follow it from the start of the building process through an actual hunt with a disabled hunter. The camera crew includes a woman who is the cutest little thing all decked out in her camouflage. We women have come a long way since my day when a college counselor once told me that the only career paths open to me, as a woman, were in nursing or teaching.

Oh, in case anyone is wondering how I spent my rare caregiver-free day. I did my normal Saturday errands but without Don in tow. Even though I love the guy dearly, it sure felt good to be alone for such a long stretch of time even if I was only picking up the weekly groceries, getting gas and recycling the papers. To mark this rare occasion, I bought myself a dozen roses and polished my finger nails. It just seemed like a woman should do something girlie on hunting day.

Now we can look forward to the community fund raiser coming up that helps pay for this event. (The disabled hunters don't pay a dime for their hunt.) A local church stepped forward to offer to do this and they raised $2,000 last year holding a dinner that included a silent auction and selling tickets on tons of great door prizes. The sheer number of volunteers who put their hearts and souls into making the disability deer hunt successful is a wonderful statement about society, don't you think?

Jean Riva ©

NOTE: On the second day of the hunt another two deer were brought in making it a total of four for the twenty-six disabled guys.

Update From the Disability Deer Hunting Event

QUICK UPDATE: Don is out in the woods taking part in the disability deer hunt as I type and I just got a call from his guide---don't you love this modern age of communication? They were on their way to the deer camp to get some lunch after being in the blind since dawn. He said Don saw ten deer but every time they'd get Don and his wheelchair set up to shoot out one window of the blind, the deer would wander to the other side. So they'd move Don over to the other window and the deer would move again. They were having fun.

I really like the volunteers that he's hunting with. This morning when one of them picked Don up---he's actually a great-nephew, the son of his last year's guide/volunteer---Don wanted to give him the tour of his garage. I told Don he could do it later because they had to get moving. Then our great-nephew joked, "This isn't old time hunting, we have a schedule to keep." And they did. They had to meet a bunch of other the hunters and guides in a parking lot for coffee and donuts.

The photo is of all the stuff I packed and had ready for Don's day trip. There were 37 things on my check list to pack! Wheelchair bound hunters don't travel light.

I'll update again later, if I get another report, or on Sunday if I don't get another. I'm meeting them all at the deer camp at 7:00 for the dinner, camp fire and blue grass band.

Jean Riva ©

If it's Thursday, This Must be Aquatic Therapy

Sometimes I think my life is a giant Parker Brothers board game. Roll the dice and move five spaces forward. Draw a card and it tells me to, "Go directly to jail, do not pass Go. Do not collect $200." Then I roll the dice again and I draw a card that says, "Bank error in your favor, Collect $200." When things are going well, why can't we just stay in that groove?

Monday was land therapy with one of Don's new physical therapists and as I suspected before I even met the guy that he is not as good as the one we just lost. That guy was an extraordinarily caring and smart PT. The new guy didn't push/challenge Don to go beyond where he'd gotten to last week. In fact, he allowed Don to dial it down which I know wouldn't have happened if he would have given Don a minute break and then asked him try the task again. For example, last week Don had done five steps up and back down using a standard height step. This week the new PT used a ½ height step and allowed Don to stop at four. Next Monday I'm going to have to step in and coach them both to go beyond where they left off today. I feel like we drew the card that says, "Train stalled on the tracks. No not advance forward."

Tuesday we went to the hearing center to get the verdict on Don's hearing accident on the firing range---to see if the steroids did any good. His hearing did come back a tiny bit but not enough to make us stand up and cheer. The worst of it is that even after turning up his hearing aids, Don is still having a little trouble understanding and the doctor said there could be some nerve damage which sometimes happens with damage due to loud noises. It could improve; it might stay this way forever. Well, crap! He doesn't need that on top of the stroke issues. Upon hearing all this at speech therapy, the professor had Don's student therapist slow things down. "Go back three spaces."

Wednesday we rolled the dice at the dentist office and both came out with good reports and no more appointments for expensive caps or other things that make you think you drew the card that says, "You made a bad investment. Pay the bank half the balance in your account."

Thursday (today) was Don's first aquatic pool therapy at the new location with the new therapist. She does nothing else but work in the water. The pool is a lot larger than the one Don's been using at the other facility but the water is still the therapeutic 92 degree. The whole place made me feel like I was a pizza baking in a brick-lined oven. But the therapist seems to know what she is doing and I didn't get the feeling that she is going to baby Don the way the Monday land therapist did. "Move forward two spaces."

Friday is the bi-monthly fish fry at the old people's club which---my gosh---if I even thought about cutting out of our schedule---which I did---it would be mean we drew the 'divorce card' and I'd have to pay the board game a huge, ugly fine. I had hoped for a quiet day at home. Oh, well, I just drew the 'weary traveler' card.

Saturday is the disability deer hunt! I got a call from the guide yesterday who will be working with Don and he wanted to know how many deer I wanted Don to bring home. I didn't realize that here in Michigan he could get as many as five doe. Holly Mother of Mary, Don better not shoot more than one unless he agrees ahead of time to donate the meat to the hunter's soup kitchen project. I do not want to draw the card of life that says I have to buy a deep freezer to house a bunch of meat I don't want to cook.

The guide said that when they set up the deer blind, they saw seventeen deer milling around the area and he thinks Don's chances of getting one are excellent. The only down side---at least for Don---is that the landowner only wants doe harvested from his property. I understand that's kind of common for people donating land for the disabled to hunt on but who will be charging other hunters to use once the regular firearms season opens. I'll blog Sunday and let you all know how the hunt turns out. Don will have a good time, I'm sure, even if they get rained out and have to hang around the deer camp all day drinking coffee and eating hot dogs. For him, male bonding time has been almost non-existent since the stroke. The hunt is like drawing the much sought after card, "Advance to Go. Collect $200."

Jean Riva ©

Disaster or an Inconvenience?

We all make ourselves crazy over stupid things. I know I used to do it a lot. I was the queen of making mountains out of mole hills and I would stress out over, well... the dumbest things. A missed appointment, a road closure when I was running late, a flat tire, a miscommunication with a friend over a planned engagement, a rainy day when I had special plans---these types of things had me fretting and fuming and feeling like a failure because I couldn’t micro management my life into a flawless flow of trouble-free days.

Then I learned “the secret” but it came after I’d neatly had a melt down after Don’s stroke. I’d been in the caregiver’s circus less than six months at the time. Don was still going to therapies four days a week, all afternoon, which of course I had to attend. I was also involved in selling off his heavy equipment that was parked all over four counties, and I was worried about the two houses we had sitting void of human inhabitants because we had to move into a wheelchair accessible apartment. Cash flow was a serious issue. Our futures were uncertain.

I don’t know who told me “the secret.” I could have read it in a book, I could have learned it from the Oprah Show---I don’t remember. But I do know it changed my life and I’m going to tell it to you. Free of charge, no strings attached. Drum roll, please. Here it is. Whenever you’re stressed out or mad over something going on in your life, ask yourself this question: is this a disaster or an inconvenience?

With those seven little words I learned to dial down my stress level and I do mean dial it down big time. A flat tire? No, it wasn’t a disaster. No one died, no one lost a limb because of it. A friend who didn’t show up when expected? A miscommunication---a disaster or inconvenience? It certainly doesn’t rate up there with losing your home to a flood or fire. By applying the is-this-a-disaster-or-an-inconvenience question to every situation that had the potential for raising my blood pressure or hurting my feelings, it helped get me through some very tough times. The bottom line is that very few things fall into the category of a disaster and very few inconveniences are worth trading in your live-in-the-moment card for a membership in the Doom and Gloom Club where they sit around for days after every miss-step in life stewing about what went wrong.

Jean Riva ©

P.S. The photo is of me from about the time Don and I met. See the previous blog entry for his circa 1970 photo.