Notes from the Home - September 7, 2014

   Just before eleven o’clock Wednesday morning, a nurse at the Emory Clinic in Atlanta took my blood pressure – 124-over-75. Forty-five minutes later I’m sure it was in the oh-my-god-you’re-having-a-stroke range. Finding yourself on the floor of the handicapped stall in a hospital restroom will do that to you.

   I was at Emory to have my baclofen pump refilled. Russ and I had started toward Atlanta at quarter of eight and all had gone smoothly. There were no backups of note on I-85; we arrived in plenty of time; my fifteen minutes with the doctor ended just about the time it was scheduled to begin.

   The less than smooth aspect of the day was my tolerance for travel. Getting in and out of the car, going long distances in the car, and spending several hours in my manual wheelchair invariably cause my already stiff, uncooperative legs to become stiffer and more uncooperative. And there are the bathroom issues.  I’d drained the bladder before we left Columbus and hadn’t had anything to eat or drink since. The need wasn’t urgent, but tending to urinary matters before we left Emory seemed to me the wiser choice.

   Russ pushed me into the men’s room, and I made my way to the handicapped stall. Alas, the handicapped stall in the patients’ restroom in the Emory Clinic Department of Neurology is about the size of a handicapped stall in your average bus station. Once I got the wheelchair and me into the stall, there was very little room to maneuver. And I must maneuver in order to take care of business.

   After a struggle, I stood up, dropped my pants, sat back down on the chair and used the catheter. Then I stood in order to pull up my pants. I need two hands to get my pants up and around my ample rump, and to get them adjusted and buckled. In the crowded restroom stall I was unable to safely let go of the bar with two hands. My efforts to move my legs into a position more likely to allow me to use both hands long enough to get the pants back up only made matters worse. My legs were getting tangled and tired, and my bottom was no longer aligned with the chair. The choice: continue trying until I fell, or let myself down easily. I chose the latter, and plopped down in the tiny space between the wheelchair, commode and the wall. To do that, my legs had to bend and contort into positions they hadn’t been in for years.

   Thank God for cell phones. Mine saved me from the embarrassment of sitting on the restroom floor and yelling for help. I called Russ, who came to my aid, crawled under the stall door, moved the chair back, stood me up, hiked up my pants and set me in the chair. He’s my hero.

   I spent the rest of the day fretting. I fret every time something happens that seems to say, “You’re days as a functioning, reasonably independent human being are numbered, Buster.” Lunch at Five Guys helped some, but getting in and out of the car there was yet another reminder of how difficult simple things have become for me.

   Back at Covenant Woods, I took a short nap, which didn’t do a thing for my mood, scrounged up something to eat rather than go up to the dining room, and pondered what seemed to be a terribly dim future.

   All that changed during Jeopardy’s first commercial. Now, if I’m tired and stiff, which I was in spades Wednesday, I have a difficulty getting my butt up when I move around in my chair in order to get more comfortable. As a result, every time I scoot back in the chair, my pants slide down just a little bit. By seven o’clock Wednesday evening, they had slid down more than I realized.

   When Alex said, “We’ll be right back . . .,” I decided it would be a good time to stand up for a minute or two. My walker, which these days I use mostly to brace myself against when I stand, was over by the sliding glass door. Hey, I could stand and take in the breathtaking view of the parking lot. It took some effort for me to stand, but when I did, two things happened at once: my pants fell down and Amy, one of the servers, drove by on her way home. With a dogwood tree and assorted other flora between my apartment and the parking lot, no one save the most determined of perverts would notice me standing there in my BVDs. But in a flash, the images of me as a complete invalid disappeared from my mind and were replaced with thoughts of the smiles the story of my pants falling as Amy drove by would elicit from her, Isabell and Al at dinner the next night. A strange way to get an attitude adjustment, but it worked.

  

   Say what you will about Burt’s son, he is entertaining – in a weird sort of way. Al and I were chatting in the hall Monday when he came by. After the pleasantries were exchanged he went into his monologue.

   “You guys ever eaten at Country’s Barbeque? Nice place, isn’t it? Well, I was over there one day last week having lunch, and some guy started choking. He made the sign, you know, put his hand up by his throat, and everything. A man at the next table got up right away, went over, got behind the guy who was choking, put his arms around him and lifted him out of the chair. I thought he was going to start . . . you know how they keep squeezing the person’s chest real hard. But this fellow put the guy who was choking up against the table and pulled down his pants. Then he starts rubbing his tongue on the butt of the guy who is choking. Two seconds later, the guy coughs up whatever it was he was choking on. Everybody in the restaurant is giving strange looks to the guy who saved the choking man’s life. ‘What’s wrong with you people?’ he yelled. ‘Haven’t you ever seen someone do the Hind Lick Maneuver?’

   “Did you see the story in the paper this morning about the guy who had to have his leg amputated? Well, he’d gone up to Alaska to hunt bear or something. The day after he gets there, he gets out his knife and somehow accidently puts a huge gash in his left thigh. All he has is Duct Tape, so he dresses the wound with it. And he’d been looking forward to this trip for months and he doesn’t want to just turn around and go home; so he just stays out in the wilderness for two weeks. When he got back here to Columbus, though, his leg was in real bad shape. He went to the doctor, who told him gangrene had set in and the leg would have to be amputated. So he goes to the hospital. When he comes to after the surgery, he’s feeling around and realizes both legs are gone. ‘Hey, Doc, what happened to my right leg?’ The doctor tells him that he took the right leg off by mistake. But when he realized what happened, he went ahead and took the left leg off, too. The guy says he’s going to sue him for everything he has. ‘Go ahead,’ the doc says, ‘but you don’t have a leg to stand on.’

   “Well, I better get down there and check in with my dad. I really enjoyed talking to you guys.”

  

Notes from the Home - September 2, 2014

   On a pleasant Tuesday morning two weeks ago, Russ and I made our way to the Columbus Clinic for a visit with Dr. Verson. He had news for me – the results of the tests and procedures he had ordered during my previous visit. As a result of those results I am now busy going to various medical facilities in the greater Columbus area for further testing and proceduring.

   The gluten tolerance test revealed a high glucose level. To help keep it from getting too high, I have an appointment to see a nutritionist. I suppose Laura McLaurin, nurse practitioner, will give me two lists – one of the foods I should be eating; the other a list of foods I should be shunning. It’s probably too much to ask that the first list be made up solely of foods I like, and that the latter consist entirely of things I dislike.

   My tastes have broadened, however, since I came south, and I have developed at least some tolerance for certain allegedly healthy foods. Several foods that Granny whipped up for Jed and all his kin, and which I was determined never to eat, are frequently on the Covenant Woods’ menu. It’s hardly exciting fare, and I never go to the dining room hoping collard greens are on the menu. But when they are I eat them.

   After going through the results of the MRI of my brain, Dr. Verson concluded that there isn’t much there. Not much in the way of lesions, that is. Not enough to account for the amount of physical impairment I have. With that in mind, he ordered an MRI of my neck, which was scheduled for later that same day.

   A few hours later, Russ and I headed to the St. Francis Hospital radiology department, wondering as we went if arrangements had been made with Medtronics to have someone on hand to make sure my baclofen pump was pumping before I left. Once at the hospital, the first order of business was to spend an hour enduring waiting room torture. I don’t understand why television replaced elevator music in waiting rooms. The piped-in music was soothing, relaxing. The TV, especially when tuned to FOX News, or any news station for that matter, and the volume set with the hearing impaired in mind, is anything but.

   It was a relief when the nurse came by and asked me to follow her. She pricked my finger and collected the blood on a small card. The purpose, if I heard her correctly, was to see if my kidneys were working. They were. Then she reviewed the five pages of forms the receptionist had given me to fill out.

   “You have a baclofen pump?” she asked.

   “Yes.”

   “Did they arrange for someone from Medtronics to be here?”

   “I don’t know.”

   “I’ll have to check.” She did and was told that no arrangements had been made. “We’ll have to reschedule this,” she said.

   I went back Friday. This time the waiting room TV was tuned to a syndicated talk show, a Jerry Springer knockoff. The host, a woman, fed questions to an opinionated guest, who screamed and snarled an answer, which included several references to the ragweed-range IQ of the other guest, who was then given the opportunity to prove he could be as loud, boarish and boring as the first guest. He didn’t disappoint. Meanwhile, the members of the studio audience cheered, snorted, shouted, booed, stomped their feet and made threatening gestures. There was no indication, however, that they listened to anything that was said.

   Ten minutes into this ordeal, a woman in hospital togs and carrying a sheaf of papers approached. “Mr. Harris?” she said. “Ah,” I thought, “this angel of mercy has come to get me out of the waiting room and away from the TV.” Ha! Betsy – I never did like that name – had come to tell me the Medtronics person was running late. “I’ll come get you when she gets here,” Betsy told a very chagrined Tom. Twenty minutes later – it seemed like an eternity – Betsy returned and led Russ, who was pushing me, away from the TV and through a maze of hallways to the MRI. Betsy took my shoes off, and she and Russ hoisted me onto the table. Betsy got me properly arranged and slid me into the sleek looking machine. Forty-five minutes later, she slid me out, my ears ringing from the stamping-plant-like noises the MRI made. In two weeks I’ll find out what the procedure revealed.

   Anna Lee, a care giver who works with Homer, was getting out of her car as I was going by one day last week. We talked about this and that for a few minutes, and then Anna Lee asked what I thought of Covenant Woods. It’s not a bad place, I said,. I’d change a few things if I were in charge, but that would be the case anywhere. My problem is that I don’t want to be here. Because of my physical condition, I need to be somewhere where help and support are available. But my mind is the mind of a healthy sixty-six-year-old man, and it chafes under the limitations it must now contend with. The flesh is willing, but the spirit is weak, so to speak.

   “Tom, you have MS,” Anna Lee said. “But MS doesn’t have you. You’re always smiling, and you have a wonderful smile.” She went on, saying the nicest things; things even my egotistical self had trouble believing. She went so far as to say I was an inspiration. But I was the one in need of inspiration.

   That afternoon, Ruth provided it. She is a tiny woman who lived down the hall from me until the middle of July, when she moved to the Personal Care area after taking a fall and having a small stroke.

Ruth was pushing her walker down the long hallway, as I was going to check my mail. She had come a fer piece, still had a way to go, and she would have to make her way back and go uphill in the long hall she was now descending. 

   She is one determined lady and a true inspiration.

Notes from the Home - August 18, 2014

   Friday morning the sun was bright, the birds were singing, the thermometer was in the mid-sixties, and the relative humidity was relatively comfortable for the first time in weeks. The rain has kept me inside all too often this summer. But when the sun does come out, the grass, trees and plants are a lush spring-like green. It was a beautiful sight on a cool August morning.

   Sitting tall in the wheelchair, I made my way through the Covenant Woods’ parking lots. Lou sat in his car, relaxing before punching in for a long day in the kitchen. “Out for your morning stroll?” he asked. “Yes, sir,” I said with more enthusiasm than I felt. On a morning such as this I forget how fortunate I am to have a reliable wheelchair and yearn to get out of it and take a real stroll.

   In the C-building parking lot, a man got out of his pickup and walked toward the building. He wore a battered ball cap; a plaid flannel, button-down shirt he hadn’t bothered to button; a well-worn gray T-shirt; faded blue jeans and work boots. He was a tall, maybe six-foot, and thin. He looked like a man on the verge of old age; mid- to late-seventies, maybe. When I said “Good morning,” he turned toward me and looked older still. His beard scraggly and white; the lines on his face numerous and deep.

   “I’m here to visit my mother,” he said.

   I stifled an astonished gasp and the urge to ask his mother’s age. Instead, I asked, “What’s your mother’s name?” He told me, but the name didn’t ring a bell. He said some family friends would be there soon, and they would spend the day visiting. Looks can be deceiving, and perhaps the man is younger than he appears. Then again, his mother might be one of the spry centenarians here at Covenant Woods. There are several.

   Down in the duplexes, Millie was watering her plants.

   “Enjoying this beautiful weather?” she asked.

   “Yes, ma’am.”

   “This should be a good day to find yourself a girlfriend.”

   Millie claims the only reason I ride around by the duplexes is to find a girlfriend. There are fourteen units down there, most of them occupied by widows.

   Thanks to Amy, our server, Saturday’s dinner discussion was spiced with a dash of salaciousness.  She told us about Rex and Burt at lunch. Rex is seldom on planet Earth. The other night, Francis heard him call me Bob and told him that my name is Tom. Rex apologized to me and said he’d call me Tom from now on. Since then, he’s been calling me Steve. Burt is very much aware of what is going on. His hands, however, shake uncontrollably.

   On Saturdays, the dining room staff puts a banana at each place setting. During lunch, Burt called Amy to tell her Rex had taken his banana. He pointed to the banana on Rex’s lap and said, “I’d take it back myself, but I might grab the wrong banana.”

   I spent Sunday afternoon with Russ and Karen. Young Mr. Harris picked up the elder Mr. Harris shortly after noon. The sun was brightly shining and it was hotter than Hades, as Mom used to say. The first order of business was to get my hair cut. As the young lady in the dark green smock arranged the clippers, scissors and comb, she asked how I wanted my hair cut. When I told her, she started asking questions of a technical nature. Did I want it cut short here and then have her fade it to something on top? Did I want this? Did I want that? I didn’t have the faintest idea and told her to cut it all off. She did, and my hair is now shorter than it has been since my early years at Bethel Memorial School. Well, it was darn short during my stint in the Army, too, but even that was over forty years ago.

   Once my ears were lowered, we headed to Barnes & Noble so I could get a birthday card for Karen. Russ and one of his former colleagues at B&N, a German woman, sprach Deutsch for a moment or two until Russ’ high school German ran out. I managed to throw in an ach du lieber, which I picked up from Mom. I didn’t mention the other German phrase Mom drummed into my brain. Time and time again Mom would say to me or one of my siblings, “You dummer esel.” When we were older Mom told us she didn’t realize dummer esel means pretty much what it sounds like it might mean – dumb ass. I’m not sure if she was being sincere, or if she was trying to see if we really were a bunch of dummer esels.

   After Russ and the woman said auf weidersehen, we went to help Karen mark her birthday. They fed me tacos and some exceptionally delicious cookies they made using a recipe they got from a British cooking show. The cookies consisted of two shortbread cookies, one on top of the other in Oreo fashion, separated by a chocolate and caramel mixture, with more of the mixture drizzled on top.

   But before we ate, we took a look back. At Christmas, Russ’ Uncle John, Debbie’s brother, put a bunch of old home movies on a DVD and sent a copy to Russ, Beth, and their cousins, uncles and aunts on that side of the family. The movies were from several Christmases and Thanksgivings in the 1990s. This was the first time I’d seen the video, and it was a treat.

   It was good to see the old homestead on Myrtle Avenue, where Debbie and I hosted a few Thanksgiving feasts. It was good to see the younger versions of Beth, Russ and their cousins. And it was good to see me sans the gray hair. After watching the video, I concluded that I must be particularly susceptible to the stuff in turkey that makes people sleepy. There were several shots of me on the couch enjoying a post-dinner nap.

   Russ will gather me up in the morning and take me to see Dr. Verson, the neurologist, who will tell me what the EMG, gluten tolerance test and MRI on my brain he ordered have revealed. His nurse called last week to tell me the gluten test indicated my glucose level is high. Not that high, mind you, not high enough that it needs to be treated. Just high enough that I need to be aware of it. And they’ll send the results to Dr. Miller, the GP who recently told me I’m slightly anemic, but not anemic enough that it needs to be treated, just be aware of it. I guess that means I should look for foods higher in iron and lower in sugar.

   I am looking forward to seeing Dr. Verson again. If he suggests anything in terms of what I should or should not be doing to deal with the disease, it will be the first suggestion from a neurologist since I came south. MS is a degenerative disease, I know, and there is nothing out there to keep it from running its course. Still, it is nice when the medical professionals I must see at least pretend to see me as something more than another widget on the healthcare industry’s assembly line.

At Four A.M.

At four a.m., I lie awake; the world is still.

The body is stiff, won’t toss or turn, my mind churns.

Another day, legs still don’t work, hours to fill.

So many things I cannot do. I brood until

My mind rages, fills with regrets, and then it yearns.

At four a.m., I lie awake; the world is still.

I’d like to walk through a park, maybe climb a hill,

Chase a ball, jump for joy – I’d love to. My mind burns;

Another day, legs still don’t work, hours to fill

Watching TV, surfing the Net. It gives me a chill,

That thought of nothing to do, and my stomach just turns.

At four a.m., I lie awake; the world is still.

It’s strange, how many times I have wished I felt ill

And content with what I cannot do. Weird concerns.

Another day, legs still don’t work, hours to fill.

Damned Multiple Sclerosis, it’s a bitter pill.

Stay positive, they say. I try, but anger returns.

At four a.m., I lie awake, the world is still;

Another day, legs still don’t work, hours to fill.