One morning a couple of weeks ago, I crawled out of bed at two o'clock..The reason had to do with Sandy, who was a colleague of mine at Ash/Craft, and Mary, a bicycling friend of Nancy's and the person who got me involved in Suzanne's writing class. They they live within twenty miles of each other, but they were three thousand miles from home when they met while on a tour of the West Coast. Among other things they talked about Multiple Sclerosis. Mary's son has MS, and Sandy is friends with a woman and her brother, who both have MS.
In a Facebook message, Sandy told me about Ampyra, a drug that seems to be helping both the woman, who has the relapsing-remitting form of MS, and her brother, who has primary-progressive MS. And she asked if I was familiar with "When I Walk,"which is Jason DaSilva's account of his experience with MS. Mr. DaSilva is a filmmaker, and "When I Walk" was shown on the PBS series POV.
The film, which I was able to stream online, left me a welter of emotions. Mr. DaSilva was twenty-five when he was diagnosed with primary-progressive MS. I was my mid-forties when I started getting occasional strange sensation in my left leg. I was fifty-five when I started thinking they might be more than signs of advancing age and a lack of exercise. I was fifty-seven when I finally asked the doctor about them, and fifty-eight when the doctor said, "You have primary-progressive MS.".
I didn't plan for MS. But if I had, that is how I would have planned it. When Russ was a strapping lad of four or five, he often asked me to take him to the Squire Shop, a bakery where he could enjoy a powdered donut. He always promised to walk the whole way, both ways. Russ never had a problem getting there. Once he'd eaten his donut, however, Russ would tell me he was too tired to walk back home. "But you promised," I'd say. "But I'm tired," he'd say. I'd smile, pick him up and carry him home. Unforgettable moments I would not have experienced had MS struck me at twenty-five.
Somewhere around here there are pictures of Beth buried in a pile of leaves. I remember that fall afternoon. Beth waiting not so patiently for me to rake the leaves into a heap large enough for her to jump into. Raking I would not have been able to do had I had MS at twenty-five.
There were a million other moments at home -- playing ball with kids, painting the house, shoveling snow, taking the kids to the lake to swim on summer afternoons, mowing the lawn -- that wouldn't have happened if I'd had MS in my twenties. I worked at Ash/Craft with developmentally disabled adults for over twenty years and was on my feet most of the time. During my time as an intrepid sports reporter for the Star Beacon, I would not have been able to chase down coaches and athletes for post-game interviews if I had had MS in my twenties.
In the spring of 2005, I visited Mom and Dad in San Antonio. Dad loved to walk and he loved donuts. The bakery was a mile or so from their apartment, but when Dad asked if I wanted to walk with him, I did. It was a struggle for me. And I'm sure if there hadn't been so much on his mind, Dad would have noticed that after the first quarter mile I was walking a little funny. He didn't. Or he was too polite to mention it, if he did. A year later, I was not able to walk that distance.
The time is never right for any disease. But if MS had to come into my life, it came in at the best possible time, and for that I am grateful beyond words.
Though still a young man, Mr. DaSilva's physical limitations are greater than mine. He needs help getting into bed from his wheelchair; he needs help getting dressed; and he needs help bathing. I am still able to do those things independently. Day by day, however, they become more difficult. The film reminded me that the day is not far off when I too will need assistance for the simplest things. The thought scares me.
His physical limitations notwithstanding, Mr. DaSilva appears to be living a full and productive life. I am not. The thought angers me.
After I watched "When I Walk" and thought I should write about it, it was my intention to include the link for the film, which was available for streaming through October 23. I didn't meet the deadline.
Friday, October 3, 2014
The role reversals continue apace for Russ and me. When Russ was a young’un, and I was approaching middle age, I would take him to the Harbor Library. He was a regular at Story Time, and we often made our way over to the corner of Walnut Boulevard and Lake Avenue just to wander through the stacks.
A few weeks ago, Russ asked me if I’d like go to the library with him the following Sunday. I said I would, and we did. Russ and Karen don’t have children, but Russ has a father who needs considerable assistance when he goes anywhere. Russ provided that help, much more help than he needed to get to the library in his preschool days.
We were supposed to go back to the library last Sunday, but the weather forecast interfered. The one-hundred percent chance of precipitation kept us from venturing out. It also turned out to be one-hundred percent wrong. Russ did come over, however, to make sure the old man understood the intricate procedure for renewing books on-line. I’d taken care of the renewing Saturday, but not before coming within two tries of being locked out forever.
Russ’ fascination with libraries has served him well. On a warm, sunny day in August 1996, I drove Russ and his wherewithal to Kent, where he was about to begin his collegiate experience. A few hours later we stood in the parking lot, shook hands and said good-bye. “What are you going to do?” I asked him. “Go down to the library.” I got in the car, and Russ started down the hill. He looked so small, the campus looked so big. I felt like Professor Marvel in The Wizard of Oz, “Poor little kid. I hope he makes it.”
The real good-byes came a few days later when Debbie, Beth and I went to a cookout Kent put on for the incoming freshmen and their parents. In the course of conversation, I asked Russ if he’d checked out the library. He had and while there applied for a job, which he got and kept throughout his years as a Golden Flash.
Earlier last week, Russ stopped in to give me copies of his cartoons that appeared recently in Barron’s. He also mentioned that he and Karen think the apartment across the way from them is a corporate apartment. They are going to check into it. Karen’s mom will be visiting at Christmas time. And Bethany, Hayden and MaKenna are planning to make the long trip from Orofino to Columbus in April. I’m too old to look forward to my birthday, but I’m like a kid when the promised present is a chance to spend a few days with the grandkids.
After two straight nearly sleepless nights, I fell asleep as soon as my head hit the pillow round about 8:30 Monday night. At 11:15 I was roused by the phone. It was Al. He had coughed up some blood. I suggested he call the desk and have them call 911. “I don’t want to go to the hospital. They don’t know shit.” At first, he wanted me to come up. Then, “Oh hell, I can’t ask you to come up. It’s late, you’re tired, and if you come up, I won’t let you in.” End of conversation.
I put the phone down and immediately fell asleep. Fifteen minutes later I woke up. Not sure whether or not the call from Al had been a dream, I checked the phone. Yes, I had received a call from Al at 11:15. I got dressed and called Al.
“I’m coming up.”
“No you’re not. You need your sleep.”
“I’m coming up.”
“I don’t want you to come up.”
This conversation went on until I finally conceded that Al is more the more stubborn I. Al relented at 8:30 Tuesday morning and ordered me to report to his apartment. He was in his underwear when I arrived. Eight or ten neatly folded paper towels on the kitchen counter bore the evidence of coughed-up blood.
“You’ve got to get to the hospital.”
“I don’t want to go to the hospital.”
I was the more stubborn one this time, and Al said he’d call his friend Ken, the man who bought Al’s house when he moved to Covenant Woods eleven years ago. He picked up the phone, punched in the number and told Ken he wasn’t feeling well and he wouldn’t be meeting him for lunch. Not a word about needing to get to the hospital.
“You better call Penelope. If you don’t, I will, and she’ll make sure you get your ass to the hospital.”
With a noticeable lack of enthusiasm, Al called the desk and asked for Penelope. Shirley said Penelope wasn’t in, she was driving the bus. I have Penelope’s cell number on my phone. I found it, pushed “send,” and handed the phone to Al. Penelope, it turned out, wasn’t driving the bus, but she had taken a resident to the doctor and would be back in a half hour.
Faced with the task of getting dressed for a visit with the doctor, Al put aside all other concerns. “Damn it. I don’t know why I’m putting on so much weight. Look at this, I can’t even get my belt buckled.” But buckle it, he did. Despite his protestations, it’s hard to believe his girth has increased much over the years. Then he put on his shirt, a pull over with three buttons at the neck. Al buttoned the lower two buttons and looked in the mirror. “God damn it! Why didn’t I get a T-shirt with a V-neck. Shit. I hate it when you can see a little bit of your T-shirt at the neck. God damn it.” He buttoned the top button and stood there in his creased, navy blue trousers and light blue shirt. It didn’t require much imagination to picture him fifty years ago, in his khaki uniform with the oak leaves on the collar.
The paper Al brought back from the doctor gives the diagnosis as hemoptysis. I did a cursory Internet search and found there are a variety of causes for hemoptysis, some pretty serious. Al will be going back for X-rays in a day or two.
Isabelle has been in hospice for several days. She had been having difficulty breathing last week. She is eighty-eight. Al is ninety. Eating dinner with them is the highlight of my day.
While making my evening tour of the grounds, I noticed two women standing next to a car. I gave them a quick glance to see if I knew them. “Don’t look at me!” one of them yelled. The other woman said something to her, which prompted a harsh reply: “I don’t care. He’s got no business staring at me like that.”
I went on my way, going around front and entering through the main door. On the way to my apartment I noticed a woman approaching the B Building door. Gentleman that I am, I went and pressed the button to unlock the door, so she wouldn’t have to fumble with her keys. Only then did I realize she was the woman who had yelled at me. Shaking and having difficulty getting her words out, she apologized and went to her apartment.
After the woman shut her door, Leila, who was coming down the hall, said, “That lady was getting beat up by some woman. I think it was her daughter.” I went back up front to tell Aleisha there might be trouble afoot. On my way back, I saw Leila looking out the door. She said the woman had gone back outside. We stood by the door discussing the event, and moments later the woman came back in, still shaking and having difficulty talking. We walked with her to her apartment and helped her find the key for her door.
“Are you new here?” Leila asked.
“Yes, but I’m leaving as soon as I can find another place.”
“Who was beating you out there?”
“My sister. She’s cheating me. She cheated me out of $25,000,” the woman said as she went into the apartment and slammed the door shut behind her.
I haven’t seen her since.
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