Tono had reluctantly agreed to hire a full-time physical therapist rather than take on the role by himself. It would require skills he didn’t have to keep Mick in the best physical shape possible. Every day they learned more and more about ALS. What neither of them had realized was that physical therapy would not “bring back” any of the muscles that were already dead or dying; they couldn’t be coaxed back to life. In addition, any form of exercise had to be restrained so functioning muscles would not be overworked. There was no such thing as “feeling the burn,” and strenuous weightlifting was discouraged as it could possibly advance the progress of the ALS rather than hamper it. Samuel had to stress the fact that Mick’s paralysis was not caused by an injury. It was systemic and progressive; no amount of bodybuilding would stop it. The important thing was to prevent disuse atrophy of the muscles that were still good and unaffected by the motor neuron degeneration.
Samuel explained that joint stiffness and pain would occur if weak limbs were not stretched properly and given adequate full range of motion. The stiffness was due to tightening of the muscles and tissues surrounding the joints. Limitation of motion could also cause inflammatory thickening, resulting in adhesive capsulitis, often referred to as “frozen shoulder.” It was extremely important that Mick stand at different intervals throughout the day, aided by one of the men in his immediate circle, or the exercise bars. This would help with normal function of the intestines, bladder, and kidneys, preventing complications such as constipation and urinary tract infections, a very common occurrence in patients who were completely immobile.
Samuel was as tall as a small mahogany tree and had the same coloring. His deeply melodic Jamaican accent was pleasing to the ear, and his ripped body was the eye candy Mick needed to get his mind off what they were doing. Samuel always showed up in white stretch pants and a white tank top, guaranteed to display every chiseled plane on his body. When informed that Mick was a writer and prone to sitting in front of the computer for long periods of time, he spoke of contractures and blood clots, painting a vivid picture of worst-case scenarios, scaring the crap out of Mick and Tono. Samuel had no qualms about interrupting Mick at work and lifting him off his chair to a standing position; the stretch would help to prevent clots from forming in the calf, or behind the knee, an all too frequent event.
Tono had no idea what a contracture was, but Samuel told him that it was a shortening of muscle or connective tissue around joints, preventing the normal range of motion. The tightening of these muscles could cause deformities or joints to become bent in a fixed position that could become resistant to stretching out to a straight position. Contractures could occur in the finger, hand, wrist, elbow, shoulder, ankle, knee, and hip joints, including flexion contractures of the neck. Weak limbs could lead to an unending cycle of complications; prevention was the key.
Pressure sores and ulcers frequently occurred in people who were immobile. Samuel explained that any surface pressing against the skin and underlying tissues would decrease circulation to the area, collapsing capillaries and interrupting the tissue’s supply of oxygen and nutrients. Samuel’s singsong patois made the lessons a little easier to swallow, and his sense of humor always brought a smile to Mick’s face. Samuel warned the men that when a person remained in the same position for too long, the pressure obstructed the blood flow, causing tissue to break down. The first sign of this was redness, which Samuel checked for every day despite Mick’s protests at being manhandled like a Ken doll. This morning’s routine had been a sampling of the verbal tussle Tono was subjected to on a daily basis. He’d listened in amusement as Mick bitched.
“You can’t just barge in here when you feel like it, Samuel.”
“Sorry to disturb, mon.” The Jamaican’s deep voice was completely unapologetic as it filled the small bathroom. “I need to check for red spots because this means a pressure sore is developing.”
“What the hell! You flip me around like a frigging pancake,” Mick protested, uncomfortable with all the scrutiny in his nether regions.
“Better my intrusion than an ulcer, or even worse, deep tissue destruction. Did you know that the damage starts from the inside and works its way out? By the time the red spot appears, the damage in the muscle is already quite severe.”
“I had no idea.” Mick’s tone was disgusted. “Who knew that being paralyzed was so fucking complicated?”
“Oh, come now, mon. There is paralysis and there is ALS. I have patients who are in far worse shape than you.”
“I know,” Mick said, shrugging off the momentary slip. “I need to be grateful for what I can do and not dwell on what I can’t.”
“That’s right, Mick. You can still get it up for that gorgeous man over there, so don’t worry, be happy.” Samuel chuckled, enjoying Mick and Tono’s shocked look.
“Samuel! Are you gay?”
“No, I’m not, but I know a happy man when I see one. Your partner has that happy, just fucked look on his face, which is always nice to see.”
Tono grinned and shook his head as he listened to the banter. He was leaning on the doorjamb, watching the therapist go through his motions. Tono was determined to keep Mick free of any complications if he could help it, and observing Samuel go through his inspection was one way of learning what to look for.
Mick’s face was on fire, and Samuel cuffed him lightly. “No worries, mon. Don’t be embarrassed.”
“You are something else, Samuel. Can I call you Sam?”
“I’m afraid my mother would object strenuously to the nickname. I’ve been told repeatedly that she spent nine months thinking of the perfect name for me and was not about to have it shortened for expediency.”
“And you always obey your mother?”
“I do.”
“Then I guess we’ll have to call you Samuel.”
“That’s my name, mon.”
“You sound like an ad for Bacardi Rum.”
“I make a very excellent mojito, if you’re ever in the mood.”
“Lovely. You and Tono can trade recipes. He can whip up a mean sangria.”
“That sounds good, Mick.”
“Since we’ve already broached the subject, and I’ve pretty much bared my soul, not to mention my fair ass, how long do you think I’ll be able to get it up?”
“Mick, ALS affects the voluntary muscles. You know as well as I that your joystick is the most involuntary thing in your body.”
Mick laughed. “It does seem like that.”
“Sure, and don’t we all know it,” Samuel smirked. “There have been scientific studies devoted to sexual function. If the penis were a voluntary muscle, there would be no need for Viagra. We could will it to stay perpetually hard.”
“And live on love forever. Sounds like paradise, doesn’t it?”
“Sure, it does. Now, Tono, come here and let me show you what we’re looking for,” Samuel said, reverting to his serious voice. “You see these two spots right here?” He pointed to a slight reddening on Mick’s buttocks. “This is normal, but anything more than that, you let me know.”
Tono nodded. “I will be happy to inspect him every day.”
Mick smiled as Tono’s gentle words washed over him. Even more important was the look in his eyes as he gazed at Mick lovingly, reassuring him that he was loved and respected, despite the indignities he’d have to endure on a regular basis.
“Are you guys done ogling my ass? I have an appointment with Paul, and you know how anal he is about time, if you’ll pardon the pun.” Mick grinned.
THAT was thirty minutes ago, and now Samuel was letting himself into the apartment after having deposited Mick upstairs.
“Everything all good?” Tono asked.
“He’s sitting with Mr. Alcott in front of the computer. I’ll go back up in half an hour to make him stand for a few minutes.”
Tono nodded. “Would you like something to drink while you’re waiting?”
“I have some bottled water that I placed in the refr
igerator. I’ll go and get that. Did you want to talk?”
“Yes. I have some questions.”
When Samuel returned, Tono pointed to the sofa and said, “Sit for a minute. How is Mick doing, really? Is he as good as you say?”
Samuel took a long pull of his drink, draining half the bottle in a few gulps. He wiped his mouth with the back of his hand and put the bottle on the table in front of him. “You know, this is very early in the disease, so most of his organs are still functioning well. My goal is to keep him this way as long as possible.”
“Mine too. I will do everything you tell me to do, even if it involves fighting with him.”
“The important thing is to keep him mentally stable,” Samuel said. “Most ALS patients become very depressed because they are fully aware of their body’s deterioration. Keep his mind occupied and keep on loving him, Tono. That’s half the battle right there.”
“Were you serious when you were kidding around about sex? Can we really continue as normal?”
“Absolutely. You must continue with your daily activities so long as you are able to perform them safely, and as tolerated, while avoiding overexertion. The general rule is, do as much as you can, for as long as you can, and rest when you are tired. Overexertion may aggravate breathing, and shortness of breath is a sign to stop activities and rest.”
“Samuel, you know damn well you get short of breath when you have sex.”
“I’m not talking about that, Tono. I’m talking about stuff you do in the gym. He shouldn’t be allowed to lift weights, and push-ups should be done in bed, as needed,” Samuel grinned, “if you know what I mean.”
Tono rolled his eyes. “I got it.”
“On the days that I’m not here, you need to do stretching and range-of-motion exercises to each of his joints several times a day.”
“I can do that.” Tono nodded. “Will water help?”
“You mean swimming?”
“Yes.”
“It’s a gentle form of exercise, although Mick no longer has use of his legs, which could lead to accidents in the water.”
“Oh yes. We had an incident a few days ago.”
“So you know he cannot be left on his own in the pool. He needs constant supervision.”
“Sí.”
“And knowing Mick, he’ll fight you on that, right?”
“He forgets what’s happening to him, so he does resist.”
“All normal, Tono. How long have you guys been together?”
“Six years and a few months.”
“You seem very happy.”
“We are.”
“That’s the most important thing. The heart and mind are powerful juju. It’s extremely important to maintain regular contact with people and not allow immobility or embarrassment to be a barrier to interacting with others. Mick needs this to minimize feelings of loneliness. If possible, attend sporting events or parties. Don’t isolate him.”
“I would never do that,” Tono protested.
“You’d be amazed how different people react to this disease. A lot of family members hide their patients away from the world, almost ashamed of what’s happening.”
“That won’t happen in this house. Mick is too social and loves to party.”
“That’s great. Tell me a little about that man upstairs.”
“Pol?”
“Yeah. What’s his deal?”
Chapter 18
“POL is Mick’s publisher and editor. He’s also an old friend.”
“He seems very affectionate for a friend,” Samuel said disapprovingly.
“He and Mick were lovers before we met.”
“I see. He still loves him, doesn’t he?”
Tono nodded silently.
“Doesn’t it bother you?”
“Sí,” he replied with a shrug. “It’s complicated, Samuel.”
“I guess it’s the whole gay thing I’m not getting, right?”
“What are you talking about?” Tono’s voice turned icy.
“Aren’t gay men into multiple sex partners?”
Tono was appalled that Samuel would even suggest such a thing, especially since he and Mick had recently argued about the very same topic. It felt like the Jamaican was reading his mind somehow, and he resented the intrusion.
“Are you a drug dealer, Samuel?” Tono asked pointedly.
“What the hell, mon!”
“Exactly!” Tono pounced. “Don’t turn us into a cliché, Samuel, or I’ll presume you’re a pot-smoking, drug-dealing, good-for-nothing junkie from Kingston.”
“I’m sorry,” Samuel said quickly, “I didn’t mean any disrespect.”
“Let’s get back to Mick’s medical issues,” Tono said seriously. His mood shift was as obvious as the changing colors in Central Park. It was the end of September, and although the city was still in the midst of an Indian summer, with temperatures soaring into the nineties on some days, the sights and smells of fall were right around the corner. They were already starting to sell Halloween candy, and costumes were appearing in store windows.
“What else would you like to know?” Samuel asked politely.
“Whatever you consider important.”
“You asked me about water earlier, and although you meant swimming, I’d like to talk about fluid intake.”
“It’s important?”
“Very. Right now Mick’s throat muscles and lungs are working fine. There will come a day when swallowing and breathing becomes an issue. Keeping him hydrated prevents thick secretions in the airways. It also helps to prevent or relieve constipation while it protects against urinary tract infections and kidney stones. In addition, a sufficient fluid intake prevents dehydration that can lead to increased thickening of the blood, resulting in blood clot formation.”
“Does it have to be water or will any liquid work?”
“Water is the best. At least eight glasses a day. Big ones.”
Tono nodded. “Anything else?”
“Good body alignment and regular repositioning promotes circulation, enhances lung expansion for optimal breathing and coughing, and helps with gastrointestinal function. It’s not an issue right now, but you need to prevent flexion contractures of the neck by maintaining an upright head posture.”
“How the hell do I do that?”
“You have to be vigilant and watch him. When you see him slouching forward, or with his head bent for long periods of time, distract him and get him to move.”
“I’ll try.”
“Hey, it’s a lot to take in right now; I understand. Things will become routine after a while, and you’ll do things for him automatically.”
“Can we travel?”
“Of course. Where did you want to go?”
“I’d like to spend Christmas in San Sebastian with my family.”
“I don’t see that as a problem. I certainly can’t go with you, but we have three months to teach you everything you need to know about his exercise routine.”
“I thought so too. Is it time for a repositioning?”
Samuel glanced at his watch. “Yes. Why don’t you go upstairs and do it. I’ll check on Mick’s mattress and make sure the foam overlay is here. I ordered it a few days ago. Do you know if it arrived?”
“I saw a package in the hallway, but I didn’t open it.”
“That’s probably it.”
“What’s it for?”
“It protects against pressure points, particularly the bony prominences. We need to get one for sitting as well. Maybe a gel seat cushion for the wheelchair.”
“Order whatever you need, Samuel.”
“I will.”
“Sorry about the other thing,” Tono said gruffly. “I didn’t mean to bite your head off.”
“I was out of line, mon. No worries.”
“Yeah. I’ll see you shortly.”
“YOU have outdone yourself with this sequel, Mick. I’m pretty sure the studio will want to make another movie.”
�
��You think so?” Mick’s face broke into a smile. High praise from Paul Alcott was rare.
“I know so. Let’s target a holiday release. What do you think? Are you up to burning the midnight oil?”
“Yes. It’ll take my mind off my body and give me something to look forward to.”
“Good. I’ll go through the manuscript in the next few days, and then it’s all yours. I’ll need it back by the end of October if we’re going to make the Christmas release.”
“You’ll have it. Paul?”
“What, babe?”
“Thank you.”
Paul reached over and took Mick’s hand in his and gave it a squeeze. “Alcott Press published your first book, Mick. This is part of my job.”
“I know, but you could have pawned me off on one of the guys in editing.”
“And lose out on a chance to redeem myself? Not likely.” Paul laughed. “I owe you, Mick.”
“You keep saying that, and I don’t know why. Your company published the first book; you have rights to the sequel. I don’t think you owe me anything; as a matter of fact, I owe you. This book should have been completed several years ago, but I fiddle-fucked around in Spain. I think I’m the one who should be apologizing.”
“It is what it is. Let’s not have a contest over who’s in debt. Let’s just get on with this.”
“That’s fine with me. Now, can we talk about Tono’s book?”
Paul sighed. “Do we have to?”
“You told me you’d help him.”
Paul raked his hair with slender fingers, wondering how to get out of this. Aside from the obvious―Tono’s book would need to be completely revamped―the thought of being associated with a romantic novel, even as editor, made his hair curl. But, more importantly, the idea of spending so much time alone with Tono disturbed him. There was a definite physical attraction, despite the obvious rivalry, and acting on it again seemed wrong. He knew that Mick and Tono were players, and he’d been invited into their bed the first time, but they’d been drunk; that incident could be written off as a one-time event. The second time Tono had been desperate for Paul’s help in supporting Mick through a highly charged and emotional moment, and that instance was also understandable and easily dismissed.
Loving Edits Page 12