AMBULATING FOR THE MASSES

Settling into a routine in Winter Harbor, although difficult, was finally achieved. Get up. Beat the crowd to the bathroom. Get dressed. Go outside and hope for the best.
Unfortunately the only three rooms in the house that the wheelchair could get into were the kitchen, dining and bedroom, so out side was best.
As 5 explained before, we traveled with enough equipment to furnish a Rehab center. The most important (and entertaining) were the parallel bars.
I don’t believe the town of Winter Harbor had had many paras . Bob became a bit of a curiosity and the parallel bars didn’t help. The most level area to set them up was in the middle of the driveway, situated right in front of the kitchen window. The provided front row seats for the spectator
. It was a wonderful thing. They could eat breakfast and watch Bob. How much fun…
Putting the braces on Bob’s legs was supposedly an easy task, however, they were just a bit heavy and adding the weight of Bob’s legs didn’t help a bit. At the time, I was pretty fit and had decent strength, but…..
As I stated before, this had become a spectator sport. I didn’t want Bob to be embarrassed, especially by something I might do.
Starting out with the confidence of an old pro. Confident, never looking up, just professionally doing my thing.
First you put the shoes on, while simultaneously holding the braces close to the leg and securing the thigh-strap, while strapping, the calf- strap, while smoothing the pant leg, while assuring Bob that I knew what I was doing; I suspect you get the picture.
Once the process was complete, the trick was to position Bob at the parallel bars and hold the chair while he pulled himself up. This part should have been easy, except his legs are now straight(and stiffly)out in front of him. This makes navigating between the rails a bit difficult(at best). Once all this was accomplished, Bob would stretch out, and propel himself forward for the length of the bars, turn around and return to the starting position.
THAT IS HOW IT WAS SUPPOSED TO BE!
I am not a trained physical therapist, nor am I the most coordinated person on the planet and to top it off, my back hurt. All of these excuses are valid, I assure you, but On the bright side, I am resourceful. I placed Bob’s shoe on his foot easily enough, but I couldn’t lift his leg to get the thigh strap, so I placed his shod foot on my shoulder to elevate his leg in order to secure it.
This is where, dear readers, you must remember that CG (center of Gravity) and breaks are the most important things you can remember about a wheelchair.
CG allows the chair to manuver without tipping over. Where the body is placed on the seat, determines how “tippy” the chair will be.
The breaks while set, do not allow the chair to move freely, nor do they allow the chair to spin on her axis.
One must be mindful of these two factors at all times. I guess, I forgot.

SPECTOR OR SPECTACLE

Morning in New Hampshire is at least an hour and a half later than it is in North Eastern Maine and I swear the sun is MUCH brighter in
Maine than it ever was in New Hampshire. The damn poets that “gently bathe their gardens in the in the morning sunlight”, have never been in the front downstairs bedroom in Winter Harbor. There (Winter Harbor) the sun breaks into the bedroom, kicks you in the ass and yells ”GET UP you lazy bum!” It is basically the halogen bulb in God’s arsenal of alarm clocks. Unless you are a fisherman, IT SUCKS!

One can also remove the “morning dew shining on the grass” references to anything written about Winter Harbor. That is Frost you fools. Those beautiful shining diamonds in the grass are merely ice-encased ants trying to get to the warm kitchen (if there was such a thing).
For all of you romantics out there, those strange looking Steven Spielberg kinda clouds hanging on the horizon are not going to turn into pictures you imagine against a beautiful blue backdrop. It is FOG!
Also known in town (and surrounding areas) as Pea Soup. You all know this fog. It is the type you have to shut off your headlights in order to see your hood ornament. This crap hangs on the horizon to make the fisherman’s life miserable. Then moves toward the shore and lands on the only road out of town. This occurs just in time for anyone who commutes to Ellsworth to work.
What’s not to love about this idyllic spot on the map-eh?
In order to experience these daily assaults by Mother Nature, one has to have gone to bed.
The Winter Harbor Estate has experienced paranormal activity since my grandfather was lost at sea many years ago.(probably a result of a "Maine Morning") For example, my sister swears she saw him in his old bedroom at the top of the stairs. Pictures have flown off the walls, books off the bookcase phone books relocating overnight, all occurring shortly after things were rearranged for aesthetic purposes.
We have all experienced these things and usually hurl a few choice words under our breath (we are sure only Grandpa could hear them) and then continue about our business.
I am pretty sure I had mentioned these little quirks to Bob.
Then again………
I must now remind you, Bob and I have not been married. Allowing Bob and I to share the same bedroom, never mind the same bed wasn’t easy for my Dad. Bless his heart; he was a chauvinist of the first order! “No daughter of his would ever………” Under the circumstances and the fact that he would have to wake me up every two hours to roll Bob, made it a fairly easy decision.
We finally said our “goodnights” and headed for the bedroom. Through the living room past the “stair-trap”, (didn’t forget to put down the step-lid) into Grammy Dot’s old bedroom.
Bob positioned the chair for transfer, with jet mechanic’s precision.
I helped him place the transfer board under his butt.
Remember the old pot metal beds? The ones with the jail-like headboards and footboards decorated with brass knobs? You know the things. I swear they were designed to hide under in case of Indian raids. Remembering back, I am sure they were at least two feet higher than a “modern” bed.
A slight exaggeration to be sure but the angle on the transfer board made the ramp to the front door look almost ADA compliant! Bob often commented on his now being,” terminally short” this bed was terminally Tall!
The only way I could get him up the board was to give the poor man the ultimate wedgie! I grabbed his waistband and at the count of three, yanked him upward. At the moment Bob reached the half way mark on the transfer board, his wheelchair flew out from under him and went whizzing across the room, out the door and came to rest on the stair tread lid (which I cleverly remembered to close).
We were both startled. I, being a girl, gasped and, through an auto-reflex action, threw up my hands. This act was accomplished by letting go of Bob’s pants.
“There he was…Gone!”. Yup, Bob, board and bedstead, all in a crumpled pile.
“Stop it Grandpa.” I yelled.
Bob looked at me with this quizzical twitch. Then he looked around the room (actually under the bed was all he could see),”What do you mean, Grandpa”.
“ I will explain, once we get you on the bed, if I can get you on the bed. Any ideas?”
“Yeah, just roll me under here and throw me a pillow. Are we going to have to go through this every night?” “You can hook me up to the 50 feet of rubber hose and call me in the morning!”
Bob was not a happy tourist!
“Look at it this way, at least you still have your pants on. You slide easier. No board burn to worry about”. I always try to be optimistic.
The process for raising a 195 pound man up to the perceived four foot height, is daunting at best, impossible for some, and “just another challenge” for a stubborn idiot with a bad back.
While Bob was yelling” go get your father to help”, I was yanking on his waste band again, trying to slide him out from under the bed.
“I am not getting Dad out of bed if I don’t have too!” “Help me out here, and let me get you on your knees. You then grab the bed and while you pull yourself up, I will grab your pants and help. Once you get started, I can sorta “goose” you onto the bed then throw you legs in afterward”. “Are you game to give it a try?”
If this scene were on TV and closed captioned, I believe it would have read, “Unintelligible, improper language,” but, Bob agreed.
I pulled, he slid. I yanked, he pulled. I pushed, he pulled. I grunted, he groaned.
EASY AS PIE!!!!! What seemed like hours was actually only 15 minutes of the comic opera. The whole ordeal had exhausted both of us. Now we could laugh.
After a good chuckle and the obligatory pat on each other’s back for our success, Bob blurted out “Was that Grandpa?”
Oh yeah, Light dawns on Marble head!
I started to explain but before I could, Bob said (into thin air) “Grandpa, you can’t keep doing this, Lauren is in my bed whether you like it or not. So just stop it!”
“We ARE getting married, just not before we leave Maine-get over it!”
Bob didn’t fully realize that at that very moment, he was genuinely part of the family. “Truly nuts and truly a believer”> we had no more “visits”. And the transfers on and off the bed became a breeze. You, the reader, will have to draw your own conclusions.

OUR GHOST

THIS IS A BIT OF A SIDE NOTE. My GRANDFATHER was lost at sea many years ago and this is the first picture that I have seen of him as a young man. I was only 10 years old when he went overboard, so I really didn't know him well, but well all believe the he was our GHOST.
My fondest memory of my Grandfather was of him building the facade of the fireplace in the parlor. He was facing it with beach rock and sent my sister, me and our cousins(all very young) to the rock beach to collect rocks for him to work with.
We all had a pail to fill and Grandpa promised to select the best ones from each bucket.
We all picked the perfect rocks-boulders actually, and put them in our buckets, Then with GREAT EFFORT we dragged those buckets back to the house and proudly presented our collection of "PERFECT ROCKS".
My Grandfather accepted each on and lovingly place the rock into the fireplace facade. His smile was genuine and our pride at lifting and dragging such big rocks all the way from the rock beach, certainly couldn't be measured.
Grampa Guy could tell (and would), who brought which rock and would recall the struggles of the "little ones"
We will always remember those days, but as we aged, those boulders became rocks, then stones, and now as adults, we see them as they are...just pebbles.
Guess it is the same with every problem or pain. With time, everything gets a new perspective.

THE CHAMBERPOT BOOGIE

One bathroom. enough beds to sleep eleven and only ONE bathroom! Have you ever been in line behind a Crip going to the bathroom? Trust me, it is not pretty, nor is it comfortable. I firmly believe that we all learned to dance form the experience>
Due to the processes involved, Bob’s shower and commode time usually took about an hour and one half. Thank God for the invention many years ago of the kiln. Without the kiln, we would have no porcelain. Without porcelain, there could be no chamber pots. Without chamber pots, the house at the end of Sergeant’s Street would be at a constant phase five-flood stage!
I remember as a youngster coming out of the bathroom to a line of kids, each one holding their personal chamber pot, with faces scrunched up with the malodorous air. We even had an occasional first time visitor to the Winter Harbor Estate that wanted to know why they had a soup tureen under their bed. This was embarrassing, but had to explain, lest they decided to help set the table! The thought of a wonderful lobster stew in a chamber pot served with a china ladle adorned with dainty flowers-never mind, the picture in my head “I don’t think so”………
Needless to say, Bob and I decided that the earlier the better. This decision was based on the availability of the bathroom and that fact that our bedroom faced due east. I guess I forgot to mention this fact to Bob before we left New Hampshire.

WINTER HARBOR

As I explained before, Bob had now been in his Fiberglass Tuxedo for what seemed like an eternity. The time had ALMOST FINALLY come to remove the damn thing forever! Although the “tuxedo” did manage to keep him quite slim (like living in a sauna) it was cumbersome and very difficult for him to transfer, lean etc., and as I said “We were ready for a vacation”.
The decision was made to celebrate the end of the “Tuxedo phase” by going to Winter Harbor, Maine where the gravel pit down back seemed the perfect place to “Shoot the crap out of the thing” the very day he could remove it. We could stay a month and enjoy fog-laden mornings, 15 minutes of warmth in the afternoon and then bone chilling cold for the rest of the time.
We crammed all of the necessary gear into and on top of the car, found a place to “creatively-cram the suitcase and off we went!!
We had already missed the one-day of summer (August 23 rd), but decided that we could get up early one morning and experience fall colors then the next day smell the wonderful earthy scents of falling leaves. Then several days after that, Bob dreamed of polishing his snow mobile!
I know, I exaggerate- a little….
I had previously tried to explain to Bob that Winter Harbor was the most aptly named town in the US. We had fires going on the fourth of July to stay warm. Needless to say, Bob was sure that I was exaggerating. Little did he know?
Winter Harbor is a small fishing village that surrounds Henry’s Cove, and boasts a lovely harbor where most of the fishing boats are moored. Old Victorian homes line the street down to the town dock. There was one gas station, one grocery store that at one time was also the post office, and soda fountain and general gathering place. Times changed, however, and a new post office was built a bit further out of town and a restaurant or two sprang up.
Chases became the restaurant of choice and the Fisherman’s Inn was considered “dress-up” (if you could catch the chef sober enough to cook). Down on the “Cove side” of the street and built precariously close to the water, was the Donuthole. There was a bit of a gully between the street and the entrance that had to be traversed by a plank to get inside. The molasses donuts were worth the trouble, except the plank was not quite wide enough for the wheelchair to say nothing of the too-narrow door. Needless to say, Bob never got to go inside. This was a good thing because without the fiberglass tuxedo, Bob would have definitely managed to gain weight. The donuthole might have produced all the evidence required of the tasty offerings.
I digress. We did manage to arrive in the dooryard of Mom and Dad’s before sundown and was enthusiastically greeted by Mom and Dad. Dad had built a ramp to the front door, but it was so beautiful outside, we decided to have a “cold adult beverage” first. (I believe this was to bolster courage enough to tackle the ramp. It was a bit steep).
Bear in mind this home was almost 300 years old. The ADA wasn’t even a twinkle in Congress’ mind and most important, if you ended up in a wheelchair when this house was built, you basically kept it in park and got watered and fed-that was it! They didn’t need wide doors.
Well, we got Bob up the ramp (with a bit of “oomph”) but before we could celebrate, we noticed Bob was not going anywhere. “Why not” you ask.
Well, fortunately the door was wide enough, unfortunately, the foyer was not! Once Bob got into the house, he couldn’t move. There was not enough room for him to turn the chair.
We had to back him down the ramp (backwards).
My dad, ever ready to jerry-rig anything, went to the barn and triumphantly returned with a crowbar and a pair of hinges.
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There always was something ominous afoot when Dad had a crowbar in his hand. At the very least, it was scary and the big smile on his face let us all know,” he had a plan”. Dad smiled. We trembled.
Dad opened the front door and with a mighty “OOOMPH” we heard the ripping of wood. Poor Mom was hiding her eyes. We knew what she was thinking, “IT is an antique house, and he’s killing it!”.
Dad had attacked the “formal staircase” with the crowbar and unceremoniously pried the tread of its riser.
Again, we knew what Mom was thinking, “it was the ONLY thing sacred enough to escape Grand pa’s paint brush!” That staircase had remained pristine, highly varnished and polished through two generations of Cole’s and Conway’s and Dad just attacked it with a crowbar!
Dad, still smiling, went back to the barn and returned with a screwdriver. In order to fit in the foyer, dad closed the door. All we could hear (and we were very quiet) was drilling and grunting.
The triumphant yell came about 15 minutes later. Dad emerged from the house with the biggest grin on his face! He had conquered!
Dad grabbed the back of Bob’s chair, pushed him up the ramp and into the foyer. Then we distinctly heard “I’ll be damned” from Bob. “Yup it works, clever you! “ Mom was almost afraid to look. But I must say, it was a “jury-rigging feat befitting Ben Franklin. Dad had removed the tread, added hidden hinges, and then replaced it. You couldn’t tell that the step flipped up out of the way. It was a “Master-stroke” of genius! (Even Mom had to admit it was great).
Unfortunately there were no other “easy solutions to a make an inaccessible home, accessible, so for Bob to get to the living room we had to “pop the tread” then if he wanted to get back to the kitchen, we “popped it “ again. You have to very careful to replace the tread; otherwise you booby-trapped anyone that happened to be upstairs. Then there was the bathroom…

THE BOX

It was a HUGE box, approximately 3 foot 8 inches tall, and the same wide. We hadn't gone through it yet partly because of the size and secondly, I guess we felt that opening it signified a finality of some sort. Frankly, I am not sure why we didn't open it. I suppose that some highly educated shrink could have explained, but I was not going to ask. It took awhile, but we finally got up the nerve.
I sat on the bed while Bob tore open the box. I then started pulling out the supplies.
Bed pads were on top. LOTS and lots of bed pads. There were enough bed pads to cover Manhattan with bed pads! We assumed that the staff at the hospital were concerned about our ability to properly secure Bob's bodily functions.
They were immediately stowed in the closet.
Next came five or six boxes of osteo supplies, you know, all of those attachments to a "crip's" body that keep the rest of the world from knowing that you have a "bodily function" control problem There were leg bags, bed bags, catheters, and at the bottom of this pile, KY JELLY:
Pulling out a case of KY Jelly, was the beginning of the end. I started to giggle.
"What's so funny?" Bob asked with his eyes twinkling, "You know what that's for right?" "Yes, I know, but I was wondering how the hell I was going to go into a store and throw this stuff on the counter while keeping a straight face and not blushing!" "Bob, I can't put tampax on the counter without blushing, never mind KY.! I've lived in Boston, I know what some use KY for and it ain't pretty! " " I am VERY sorry, but this is on your shopping list. I can get used to a lot of things, but I don't think this is one of them".
After calming down a bit and wiping the tears (from laughing), I reached in for the final box. It was unmarked and a bit heavy. I mentally went through all the steps of performing as a primary care taker (so I could bring Bob home),we truly had everything required, including a case of baby powder to make his bare butt slippery on the transfer board into the shower!
I opened it with trepidation.
There, inside the box was a spool which held (according to the label) fifty feet of rubber hose.
yep, fifty feet of rubber hose. "What in Hell are we supposed to do with fifty feet of rubber hose? They must have mixed up your order with the janitors or something. What-no mop to clean up the mess???
Bob looked a bit astonished, then he broke out in laughter," I think it is to use on the leg bag, you know, to drain it and to use for the connections." "We have enough here to go to a bar for the entire evening. I could just unwind the spool and throw the end out the door. I could drink beer all night and never have to leave the table!" "Just think about it! We can go visiting-never have to leave the room, drive to Maine,just throw the end out the window and keep on driving!" Bob laughed Leave it to Bob, an aircraft mechanic, to come up with all the angles! The fifty feet of rubber hose proved to be a wonderful gift. I siphoned aquariums,over-flowing bathtubs,gasoline etc. for the next 15 years before we finally ran out. I felt like saving the spool as a memento of the first years of "Cripdom".
Our routine is now set. We go to the store once a week and purchase peanuts(5 pound bag) and the same day I make banana bread, just to keep the "Herd" of squirrels content. Weekends consist of our neighbor Mathew and his friends for popcorn,cartoons and old horror movies, with an occasional movie, thrown in the mix Bob goes to out patient therapy in town and has joined a local wheelchair basket ball team.
The therapy sessions appear to be helping. Bob was able to ambulate at least 20 feet before he" hit the pavement". The insurance company issued him parallel bars and leg braces so he could at least stand for several hours a day. Bless his heart, he worked out every day and stood for 2 hours(at least) every day. Life was good! ) Shortly into our relocation and ou'r "new life", my brother Guy got out of the service and needed a place to stay until he could find an apartment. He is such a .fsweetheart, a little goofy, but a sweetheart, and we had an extra room. That was , "easily settled.
Another phase-begun!

THE BEAT GOES ON

For all you “crips” out there, you know from whence I come. Some pitying fool who has never been in a wheelchair, save being pushed out of a hospital by a 90 year old volunteer, after a toenail removal, has gone through so called “higher” education to become an engineer. This evidently entitles him (or her) to draw some weird contraption on a piece of paper, name, patent it, then pass it off as a great innovation for any quad or para that comes along with a problem. Unfortunately, these innovations are designed for 90% of the disabled. I suspect that if the product was to work for 100 %, the Insurance companies would tell you that you don’t need it, they won’t help pay for it. Therefore, those folks who market the product up the rates so everyone can see how nice they look on display, but no one can afford them. Case in point: Stand-up chairs that can move while the user is in an upright position.
This marvelous piece of machinery aids a para or a quad stand, say in the kitchen, and reach the top shelves. In my husbands case (he used to be 6’-1” ) he could reach the top of the refrigerator and discover all the treasures( or critters) that have hidden there for years. He could also reach that stupid cupboard above the frig. You know the one, it holds the secrets to what occurred the first day you moved into house. Never to be discovered until some poor unsuspecting fool looks in there when he moves in.
The chair also lays flat. This gives the disabled a chance to nap after he has fought what ever was located on top of the refrigerator.
All of the different positions not only assist in the independence of a crip, it also helps prevent pressure sores, atrophy, poor circulation in the lower extremities. Bob and I figure, if he had started out in one of these things, the insurance company would have paid $23,000 for the chair, but saved over $350,000 10 years later when Bob got a pressure sore and had to have plastic surgery, home health care, special bed, special mattresses, etc., etc.. oh well, obviously, we didn’t get one.
To achieve some of the same benefits, Bob had parallel bars and leg braces. This combination was designed to allow him one day to ambulate with the freedom of crutches.
Bob and I practiced putting the leg braces on and getting up from the chair on to the parallel bars. Frankly, we were quite successful and well pleased with ourselves. He could swing himself forward, hop and move ahead with little or no effort.
The results of this whole exercise were pretty good. It all seemed to keep him regular, no pressure sores, and it seemed to help keep his weight down. The decision was made that if we were going to travel, this was a “must bring” so he could continue the 1 hour per day regime .
We were just getting used to this new regime when (dramatic music should appear in your head) THE BOX ARRIVED!