Notes from the Home - May 20, 2014

   I stopped to talk to John one morning. He is getting ready to move. He will be joining Lorene, his wife, who two months ago moved to a memory-care facility in Canton, Georgia, which is north of Atlanta.

   “We wanted to find a place where we could live together in sort of semi-independent situation. Like we did here,” John said. “There isn’t any place around Columbus that has that option. But it worked out OK. Our daughter lives in Canton. Both our sons live here in Columbus.”

   I often see Anne in the morning when she is out walking her two Jack Russell terriers. Her husband has Alzheimer’s and lives in another facility here in Columbus. She visits him every weekend, and it is often a trying experience.

   “I finally got a break this weekend,” she told me about a month ago when she spent several days with her daughter and her family.

Not every weekend with her husband is an ordeal, however. Monday she said, “It was such a nice weekend with him. So relaxing.”

   I have been using a urinary catheter for nearly eight years and have never given it much thought. Well, maybe a little thought at first. In 2006, when the people at the Cleveland Clinic were trying to determine what was wrong with me, the doctors would frequently ask if I had trouble getting things started when I urinated and, once having urinated, did I feel as though the job wasn’t quite done.

   My answer to both questions was “yes,” for which I won a visit to the urologist. There, a nurse encouraged me to drink heartily and let her know when I needed to visit the restroom. When my bladder called, the nurse gave me a plastic urinal and pointed me toward the restroom. After pissing around, I returned and handed the urinal to the nurse. She made a note of how much was in it and then rubbed some sort of computer thingy around my abdomen until she found my bladder. Looking at the readout on her handheld computer, she yelped, “Oh my God! You’re bladder must be the size of a basketball,” and sent me to the catheter training facility.

   Nancy, my significant other at the time, was with me. While we waited for the nurse who would instruct me in proper catheter use, Nancy called my attention to the construction workers on the building next door. “They’ll be watching you,” she said. This must have been an issue with some patients. When the nurse arrived, the first thing she said was, “The windows are reflective. We can see them, but they can’t see us.”

   She went on to explain that using a catheter before going to bed would increase my chances of sleeping through the night. Also, using a catheter to empty my bladder once or twice during the day would reduce my chances of getting a urinary tract infection. Following a short video, she handed me a catheter, a urinal, some tissue paper and a tube of personal lubricant. “OK,” she said, “try it.”

   I did. And with Nancy, who is an RN, and the Cleveland Clinic nurse watching me, it was a trying experiences. I mean, a gentleman isn’t supposed to try to do such things in front of ladies, even the ladies are medical professionals.

   “This is much easier for men than it is for women,” the Cleveland Clinic nurse said and quickly added the anatomical reason why. Too Much Information. Way too much. That bit of urologist humor gave me a visual a gentleman shouldn’t have while in the company of two lovely ladies, especially when said gentleman is already engaged in an activity not suitable for mixed company, or any company for that matter.

   But I persevered and soon discovered that using a catheter in the privacy of my own bathroom is no big deal. As with most things that are not big deals, I did it every day and never gave it any thought. Sunday night, however, I thought, “I wonder who figured out that if you ran a tube down your, uh . . . your you know . . . it would cause you to . . . well, you know.”

   According to the website urotoday.com, catheters were used as long ago as 3000 BC. It didn’t say who had the bright idea, but it does say the earliest catheters were pieces of straw or rolled up palm leaves. Ouch!

   Wandering around cyberspace the other day, I came upon a short video of David Sedaris. The video was part of an interview Mr. Sedaris did for a film titled Do I Sound Gay? The subject was the “gay voice,” and Mr. Sedaris talked about calling a dentist’s office for an appointment. The woman he spoke with kept calling him ma’am even after he gave her his name. “How many women do you know named David?” he asked the interviewer.

   I have the same problem with my MS voice. In fact, earlier the same day, the woman who answered the phone at Medical and Health Resources called me ma’am several times. She switched to sir after the second time she asked me my name, and I told her “Thomas” for the second time. She wasn’t completely convinced, however. I’m sure she’ll look at me long and hard when I show up for my appointment Wednesday.

   That wasn’t the first time a stranger on the telephone line mistook me for Thomasina. They’ve been doing it for seven or eight years. No one has told me I have a sexy voice, but no one has told me I sound oh, so virile, either. A month or two after I moved down here, the Emory Clinic gave me a call.

   “This call is for Thomas Harris,” the woman said.

   “This is he.”

   “No, I said, ‘this call is for Thomas Harris,’” she said.

   “This is he.”

   “Oh, you’re his wife . . .” and she went on to tell Mrs. Harris what Thomas would need when he went for his appointment.

   In another possibly MS-related development, I have convulsed with laughter more than a few times over the last several months. It’s not a terrible thing, but it is damned inconvenient. I’ll be trading barbs with another smartass and something he or she says, or the comeback I’m about to launch, strikes me as so funny I can’t say a word. It takes me four or five tries to get anything but guffaws out of my mouth. People laugh at me laughing, and the zinger I hoped to unleash loses it zing before I can get it out.

   Thinking I had read or heard something about this, I did a search for convulsive laughter and people with MS. OMG I might have PBA. Folks with Psuedobulbar Affect cry or laugh uncontrollably. They might laugh or cry for extended periods of time for no reason. Or their hardy laugh might be too hardy for whatever caused the person to laugh in the first place.

   According to the article PBA might be related to depression, which is depressing, and fifty percent of the people diagnosed MS, ALS and similar neurologic disorders have PBA. So, the odds are even that I have PBA. Of course, the odds are also even that I’m just weird. 

   I think I know where those who know me best will come down on that issue.

Lessons in Life

   Getting dressed was a struggle Friday morning. My legs were stiff and uncooperative. My balance was questionable, and every time I reached for something I was sure I’d fall from my perch on the bed and land on the floor. My frustration manifested itself in a string of obscenities. And I spewed a fresh load of invective when I looked at the clock and realized it had taken twenty-five minutes for me to get into my shirt, a pair of jeans, socks and shoes.

   Mom had emphysema. The smallest tasks were struggles for her. The twenty-five minutes it took for me to get dressed Friday was a fraction of the time it took Mom each and every day. There had to be days when she overwhelmed by the small chores she had once done quickly, easily and without thought. But she kept going.

   My favorite picture of Mom was taken a month before she died. She is sitting at a table, the day’s crossword puzzle and a glass of wine before her. The plastic tube attached to her nostrils feeds her oxygen. And Mom is smiling. It’s not the smile of someone told to smile for the camera. Mom is smiling the smile of a person enjoying the moment. There is a lesson in her smile.

   Last week, the Pittsburgh Post-Gazette website had a story about Ella Jane Custer, who was preparing to run in the Pittsburgh Half Marathon. Mrs. Custer is eighty-four. A half marathon is 13.1 miles. Her agenda for this summer includes half marathons in Wheeling, West Virginia, and Columbus, Ohio. Last year, at the age of eighty-three, Mrs. Custer ran in a half-marathon in Parkersburg, West Virginia, drove home to Wheeling, and ran in a 5K that evening.

   Back when I loitered at the Star Beacon’s sports desk, I had the opportunity to talk to some Ashtabula area runners who had competed in the Parkersburg race. The Mountain State’s topography was a challenge to each of them. And most of those runners were no more than half Mrs. Custer’s age. There is a lesson in her determination.

   Dixie was putting his clothes in the dryer when I got to the laundry room one recent evening. He and his wife had lived in one of the Covenant Woods’ duplexes. She died a couple of months ago, and he moved into an apartment.

   Dixie is blind. He was the only person in the laundry room when I got there. He ran into a problem when he tried to turn on the dryer. Apparently the dryer door was not completely shut. It was not opened enough that Dixie could feel it when he ran his finger along the rim. And it was not opened enough that I could tell by looking at it. Everything else appeared to be in order, however. On the theory that it couldn’t hurt and might help, I opened the dryer door and shut it with authority. The recalcitrant appliance sprang to life.

   When the washer was through with my stuff, and I was stuffing it in a dryer, Dixie asked which dryer I was using. I told him the one on the end. “Good,” he said. “The middle one doesn’t work very well.” From time to time Dixie went over to the dryer, opened the door, pulled out the clothes that were dry and put them in his basket. “The only things still in there are a couple knit shirts. They take a long time to dry.” Once they were dry and in the basket, Dixie held the basket with his left arm and used his right hand to guide him out of the laundry room and down the hall to his apartment. 

   There is a lesson in watching him keep on keeping on.