Sunday, September 28, 2014

Notes from the Home - September 28, 2014

   As I was unlocking my door Monday afternoon, Cherie, a nurse’s aide, came down the hall.
   “Are you bored?” she asked.
   “I’m always bored, but more bored than usual today.”
   “Probably the weather,” she said.
   “Probably is.”
   “When I get home tonight,” Cherie said as she started back down the hall, “I’m going to have a glass of wine and think about you.”
   “Me or your husband?”
   “Well, him, too.”
   With that, the door to Richie’s apartment opened, and William, the loudest, most obnoxious lout at Covenant Woods, yelled, “Hey, we’re trying to watch TV in here. Keep it down,” and slammed the door shut. I gave him the finger. William didn’t see it, of course, but on this nothing day there was something immensely satisfying in the adolescent act of shooting him the bird. An half-hour later, the sun came out. Coincidence? I don’t think so.

   Other than Monday’s boredom-inducing conditions, the weather has been bordering on lovely for nearly a week. The morning temperatures have been in the sixties, down from the mid- to high-seventies of the last five months. By mid-afternoon it is uncomfortably hot, but the air cools when the shadows begin to lengthen.
   Meandering through the Covenant Woods’ parking lots after dinner Friday, the sunshine, cool air and pleasant breeze took me back to Ashtabula, to Cederquist Park, watching Russ and Beth playing Little League ball. Alas, my reverie was disturbed by the realization that in six weeks the clocks go back to standard time, and my early evening wanderings will go on hiatus for a few months. “Straighten up, Thomas. Don’t fret about what will be. Enjoy the moment” I told myself. Too bad I seldom listen to myself.
   This morning I found out that life on this side of Mr. Mason’s and Mr. Dixon’s line has taken its toll on me. I am now a weather wimp. At ten-of-eight, attired as usual in shorts and a T-shirt, I went outside to enjoy the abundant sunshine. Sunshine or not, the brisk morning air was too much and I headed for the main entrance. Annie, who was in the lobby, gave me a funny look.
   “Too cold,” I said.
   “Too cold?” Annie said. “Mr. Ohio Man thinks it’s too cold?”
   “Yes,” I said softly as I headed back to the apartment to put on long pants and a jacket.

   My life is now a chapter in a book. Penelope, the activities director, and her friend Beverly wrote short biographical pieces about fourteen Covenant Woods’ residents. I am the baby boomer in the midst of greatest generation folks. Fortunately, my story, appropriately titled “Tom-Foolery,” is the final chapter in Black & White Tales in Graying Times. That fortuitous placement gives the reader something boring to fall asleep to after the excitement of the previous chapters.
   There was a book signing Sunday in the dining room; a very pleasant affair with lots of cookies and pastries. Those of us featured in the book were scattered around the room – Al and I shared a table – and folks came by with books and asked us to sign our respective chapters.
   That system worked well for me. I don’t have much trouble getting around the dining room at meal times. Everyone is busy eating. Dances and other events in the dining room, however, scare me. People sit down, stand up, walk about helter-skelter and inevitably get to where I’m trying to get seconds before I get there. All the people at Covenant Woods whom I’ve come close to running into with the wheelchair were in the dining room when I almost hit them. It was a wonderful feeling to sit in the middle of the room and have people circulate around me. Much better than being a forgotten man in the corner. I used to think I was the only wheelchair-bound resident who felt this way, but others have told me they too feel isolated and trapped at the dances.

   Mae joined Al and me for dinner Wednesday. Al talked about the junk mail he has been receiving. He is a very generous man, and all the charities he has given to over the years regularly send him reminders of his previous generosity and of their on-going need for donations. Then he turned his attention to telephone solicitors. When he was through, Mae took up the subject.
   “Some guy called me last night,” she said. “He was trying to raise money for some organization; I forget what. Anyway, I told him I didn’t have any extra money. He said, the amount didn’t matter, even a small donation helps. So I told him, ‘I’m going to a séance tonight. I’m hoping to reach my aunt. They say before she died she hid thousands and thousands of dollars. If I get to talk to her and if she’ll tell me where the money is, I’ll be able to make a huge donation. Is there a number where I can reach you in case I’m suddenly rich?’ He hung up. He never said a word, not even ‘good-bye.’ He just hung up.”

   Wednesday afternoon was different. I was sitting at the computer squandering another hour when Tee, one of the housekeepers, came to give the apartment its weekly once over. She was in a chatty mood – among other things, she asked why I didn’t go online and find a woman. As we were talking, someone came a-knocking. It was Stacie, a server in the dining room, who was going to the rooms of some of the people featured in the book and reading their stories. Before Stacie started reading my story, however, she and Tee swapped gossip. While their tongues were wagging, there was another knock on the door. I yelled, “Come in,” and in came Laura.
   Laura is a retired teacher who comes to Covenant Woods every few weeks with a craft project for interested residents. Not being a crafty guy, I hadn’t met Laura until Sunday at the book signing, where she talked to Al and me for fifteen or twenty minutes. For reasons known only to him, Al told her the tote tied on the back of my wheelchair needed something to firm up the bottom. Could she make something to fit in it? She said she could.
   I promptly forgot about it and assumed Laura had too. She hadn’t and had come to measure the tote. Three women in the apartment; this had never happened before. Laura talked knowledgably and at length about knitting and crocheting. It all sailed over my head.
   Stacie finished reading the story about me and headed to Al’s room to read his story. Tee finished cleaning my apartment and went to another, one probably inhabited by someone less slovenly than I. As Laura was getting ready to go, she said she’d read somewhere recently that eating three radishes a day can help you lose weight.
   A refreshingly out of the ordinary afternoon at Covenant Woods.

   On I came across an essay titled “Why I Hope to Die at 75,” written by Ezekiel Emanuel, a healthy fifty-seven-year-old, who serves as a director of Clinical Bioethics at the National Institute of Health and who is head of the Department of Medical Ethics at the University of Pennsylvania.
   “But here is a simple truth that many of us seem to resist: living too long is also a loss,” he writes. “It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.”
   Covenant Woods is full of exceptions to Mr. Emanuel’s rule. But barring a miraculous medical breakthrough, I won’t be one of those exceptions. I’m in no hurry to make my final exit. I am, however, disabled, faltering and on my way to becoming feeble, ineffectual, even pathetic. I would like very much to go before I get there.

Friday, September 19, 2014

Notes from the Home - September 19, 2014

  For weeks and weeks, I’ve felt like the guy in the old commercial who complained, “My get up and go got up and went.” Mine returned for a couple hours Saturday evening. It was nice to have some energy. Too bad I didn’t handle it very well.
   I’ve forgotten what we had for dinner, but maybe it’s what gave me a boost. After I finished eating, helping with the menus and making two laps of the Covenant Woods’ parking lots, I went back to the apartment and looked for something to do. The overflowing hamper was easy to spot, and off I went to the laundry room. When the washers finished their task, the clothes went into the dryer, and I went back to the apartment to do the dishes.
   Before getting started on the fresh batch of dirty dishes I needed to put away the clean dishes that had been sitting in the drainer for a day or two – or maybe three. There weren’t many. Most of the now dirty dishes had been in the drainer earlier in the day. Among the items still in the drainer, however, was a small frying pan, which I put in the cupboard beneath the sink. In the process of maneuvering the wheelchair, I managed to get the toe of my left shoe under the cupboard’s overhang above the splash board.
   It wasn’t my intention to put my foot there; I didn’t know it was there. And it stayed there when I backed away from the sink, and as my already stiff leg got stiffer. A wiser man would have stopped the wheelchair and worked his foot free. I, being less than wise, attempted to free my foot as the chair was going backwards. The foot didn’t budge, and my arse slid off the wheelchair’s seat and on to the floor.
   There I was, staring at decades of Harris family history. The occasional table six inches from my face once graced the first-floor landing in Nana and Jim’s house on Clearfield Street in Pittsburgh’s Sheraden area. In time, perhaps when Nana and Jim moved to Green Tree, the table made its way to the Harris estate on Myrna Drive, and Mom refinished it. Years later, when Mom and Dad forsook the Steel City for the Alamo City, the table went to live in northeast Ohio. In the spring of 2012, along with me, it came south.
   In Sheraden, a tiffany lamp graced the table. In Bethel Park, Mom covered it with beautiful plants of all descriptions. Here in Columbus, the table has a more prosaic existence. A microwave, a toaster, a coffee maker, and a bottle of fiber pills sit atop it. Underneath, fifteen or twenty crumpled up plastic grocery bags from Publix bide their time until, one-by-one, they are pressed into service as garbage bags.
   Next to the occasional table is a wash stand that Mom also refinished. I’m not sure where it came from; maybe it was Grandma’s. In any event, it occupied a corner of the family room in Bethel Park for many years, before it too went north to Ashtabula. It is now the repository for all the stuff there is no place else for, and all the stuff I’m too lazy to throw away.
   But there was no time to reminisce. The task before me was getting back on the chair, and it soon became evident I couldn’t do it on my own. I called the desk and explained the situation to Shirley, who said she’d try to find someone to help.
   “Everyone is busy,” she told me, via the intercom, ten minutes later. “I’m going to call 911. Is that all right?”
   The embarrassment of having a couple EMTs being seen at my door paled next to the possibility of spending an hour or two on the floor waiting for in-house help. “Go ahead,” I told Shirley. After what seemed to be twenty minutes, but what was probably half that, two EMTs were at my door. Seconds later, I was back in my chair. They took my vitals, asked a few questions, told me I would not receive a bill – they pick up uninjured people who have fallen as a public service – and went. I spent a lot of time Sunday and Monday telling the story of my adventure to the inquiring minds who wanted to know.

   Tuesday, I paid a visit to Dr. Verson. The MRI of my neck, he said, didn’t show anything that would account for my physical deficits. This left him wondering about the spinal tap I had in the spring of 2006. There was something in the spinal fluid that shouldn’t have been there, I told him, and the doctors thought I might have transverse myelitis. That led to three IV steroid injections, which did wonders for my mood, but not a damn thing for my gait. After that the doctors at the Cleveland Clinic referred me to the Clinic’s Mellen Center, which is where the primary-progressive MS diagnosis was made.
   The records Dr.Verson received from the Cleveland Clinic do not include any notes on the spinal tap I had in 2006. He said he would try again to get them. I’m hoping he does. The spinal tap itself was a piece of cake. The next two days were hell – headaches, nausea, and more headaches, and more nausea. I have no desire to go through it again – ever.
   But there was good news: I don’t go back until January. Which means, save for a date with retinal specialist next month, I am medical-appointment free until 2015.

   Wednesday, about five, as we were sitting down to dinner, there was a booming-boom. The residents reacted in one of two ways. Half of them gasped and said, “Oh, my God! What the hell was that?” The others got puzzled looks on their faces and said, “What was what? I didn’t hear anything.” A few minutes later, Russ called and asked if I’d heard the explosion. He said he’d heard it, and Karen, who was still at work, had called him and said she’d heard it. It turned out the noise was caused by a plane breaking the sound barrier.

   And finally, in the Things PJ Never Told Me Department: Pastor John Dennis stood in the pulpit of the Ruthfred Lutheran Church for decades on end. Often during his endless sermons, PJ quoted Martin Luther at length – great length – but he didn’t tell the whole story. Only the other day, I discovered Luther is credited with saying something with more kick than, “Here I stand,” and on a subject livelier than justification through faith. Yes, it was sly, old Marty who first said, “Who loves not women, wine and song remains a fool his whole life long.”
You can look it up.

Sunday, September 7, 2014

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.”

Tuesday, September 2, 2014

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.
   “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.

To Bed, Perchance to Sleep

According to an article on the National Multiple Sclerosis Society's website, a person with MS is up to three times more likely to exper...