Hope's Existence

The door of her Honda closed with a thud, sealing her inside the lukewarm air laced with the scent of a cheap cinnamon air freshener and hand sanitizer.

She closed her eyes and pressed her head against the steering wheel.

If she had been new to this, she would have cried. She would have lashed out and beat her fists on the interior of her car until her hands were bruised. Now, there was only a sense of falling through thick, stifling air. It felt as if she couldn’t breathe.

She’d just left a patient’s house. It was a routine homecare visit; they were supposed to have worked on living room modification. Instead, Linda, who had suffered two strokes and now dealt with extreme anxiety due to the abuse her ex-husband inflicted on her, spent the entire session crying in front of Mira. It was a shivering, broken sob. The hopeless kind.

Mira leaned back and looked through the windshield.

In front of her was the Glacier Highway, near Mendenhall Valley in Juneau, Alaska. She looked west and saw the high knobs of green mountains rising from the sea some thirty miles away, across Favorite Strait.

She longed to be there. To be in the elevations and trees where words like Alzheimer's, abuse, stroke, Parkinson's, dementia, down syndrome, and spinal cord tumors did not exist. Up there, she could forget.

In the center console was a dog-eared paperback, John Muir’s Travels in Alaska. It was the book that had led her to the southeast peninsula of Alaska. Mira hoped that being in the place of Muir’s 1879 trip could clear her memory of what had happened just a month before.

Mira checked her phone. The date on the screen read August 14^th.

Twenty-nine days ago, she’d said goodbye to Anthony. Or rather, he’d said goodbye to her. She couldn’t think about that now, it was a dark emptiness with the whispering rush of emotional wind that would send her tumbling.

She shut off the screen and started to drive.

Minutes later she arrived at her third patient of the day, a twenty-one-year-old male who’d been diagnosed with MS. His name was Peter Mullaly.

Mira was a home health occupational therapist, OT for short. Most people had to ask what that was because most people have never needed OT. Her response was a juxtaposition. A PT, physical therapist, helps a patient get back to where they were. An OT helps you modify your lifestyle and home, because the patient is never getting back to where they were.

The difference is stark. Not because of the title but because of the patients one works with. In physical therapy, there is hope to regain what was lost. In occupational therapy, you can only try to manage with what’s left.

Peter Mullaly’s home was on Douglas Island at the banks of Gastineau Channel, opposite side of the water from downtown Juneau. From the exterior, it was a modest bungalow with a garage. Painted blue with white trim. It was smart looking but well kept landscaping gave it the air of a house belonging to someone much older.

Mira walked from her car, her medical bag slung over one shoulder, a clipboard in the other. She wore scrubs. A navy top, gray bottoms, and black sneakers.

She pressed the doorbell.

A moment later the door opened and tall man with wavy silver hair greeted her.

“Hi. I’m Mira, the occupational therapist from St. John’s,” Mira offered.

“Right. Yes, we were expecting you,” said the silver haired man, “come in.”

He turned and allowed her in the home.

It’s an intimidating thing to do, going into a stranger’s home. Especially as a woman. Even more so as an attractive woman, as Mira was. Even though she was tough, cautious, intentionally wore clothes that concealed her figure, and never wore make up or styled her hair, there was always that knowledge in the back of her mind that she was on someone else’s ground and anything could happen. It had before, almost.

There was another factor too.

Often, she visited patients with very limited mobility and even lower drive to maintain their space, so much that the largest obstacle to entering a home was navigating piles of detritus and useless items that had been neglected for year, even decades.

This home was not her usual.

It was clean and orderly, not a speck of dirt anywhere. When they entered the living-room she was struck by the large windows that boasted a grand view of Gastineau Chanel. Across the bay were massive cruise ships at dock, downtown, and the looming mountains behind. It was breathtaking and even in a place as remote and landlocked as Juneau, Mira knew the home was worth close to a million dollars, if not more.

“This way,” said the silver haired man, leading her away from the living room to the left and through the kitchen.

“Are you Peter’s caretaker?” Mira asked, as they went down a flight of stairs to the basement.

“No,” he answered flatly. “I’m his grandfather.”

The tone of his voice was flat and detached. Tired, Mira thought, she’d heard that sound before.

They arrived at a door, at the end of the hall in the basement. It was dim and cold there. Mira felt goosebumps rise on her forearms and silently cursed herself for not wearing a sweater.

“Peter,” the grandfather called through the door, “the therapist is here to see you.” There was a dull thud behind the door but no response otherwise. They waited.

“Peter?” called the grandfather again.

Nothing.

The old man turned to Mira, his eyes darker.

“He’s often difficult. I can’t blame him, honestly. I’ll go in and let you know when to join us,” said the grandfather then he opened the door quickly, stepped through, and was gone.

In the brief moment the door was open, Mira caught a glimpse of the inside. On the ground was a spill of books near the bed. The covers of the bed were rumpled and unkempt. A couple drawers were half open. She didn’t see her patient.

Mira checked the time. Ninety minutes until her next appointment.

In the beginning, she had sympathized with her patients and felt a strong urge to help as much as she could. That was before she realized that, above all the ailments and disabilities a patient could have, despair was at the top. Like a head, it turned the minds of her patients off to the possibility of a life beyond their circumstances.

As a chronic optimist, Mira had been up to the challenge. She had injected her energy into each person in the belief that it would be contagious, some responded, but most could not be convinced of hope’s existence.

She ended her days by strategizing for each patient, trying to find what it is they wanted most, looking for a subtle way to manipulate them toward success. It took a lot from her, too much. It had destroyed her relationships and drained her energy for anything beyond her career. In the end, she found herself as desperate as her clients. In the end, she had to separate. She became detached, a self-preserving mechanism to manage the day to day.

“You can come in now,” said the grandfather’s voice through the door.

Mira inhaled and went inside.

The room was dark and musty, filled with scent of sleeping bodies and dirty laundry. A bed, a bookshelf, a dresser, portraits of her client and his family hung on the wall. In the far corner, to the left, under the high window that made Mira think of a prison, was a young man in a chair with his legs covered in a blanket and he stared toward the adjacent corner of the room, away from her. His grandfather stood nearby, hands in his pockets.

Mira walked over to them.

“Hello, Peter. I’m Mira, your occupational therapist from St. Johns. How are you doing today?”

Peter didn’t respond or look at her.

She cleared her throat.

The grandfather brought a chair over and motioned for Mira to sit. After she thanked him and sat down, the grandfather walked across the room and sat on the edge of the bed, facing her and Peter.

Mira began to grab paperwork, the intake form which was a long series of questions for new patients.

“You won’t need that,” he mumbled.

Mira looked up, arched an eyebrow.

Peter was motionless. For a moment, Mira wondered whether he’d spoken at all.

“I’m sorry?” She asked.

“I said, you won’t need that,” said Peter. His eyes trained at the near wall at his right, Mira’s left.

           Mira paused, then spoke again.

           “It’s just a few questions before we get started…” she began.

           “Try a hundred and sixty-three questions,” Peter interrupted. “I’ve done the form with the PT, Nurse, Doctors, and Psychologist. Is it really necessary to do it all over again? Don’t you idiots communicate with each other at all?”

           “Peter!” scolded the grandfather.

           “I’m serious! This is lunacy,” snapped Peter.

           Mira folded her hands and waited. Peter hadn’t moved much in the exchange and his eyes never changed direction. It was sad to see someone so young devastated by disease, but Mira couldn’t change what had happened, she just needed to check boxes and follow her training as to what the patient needed most. She needed him to cooperate.

           “Is there something you’d rather talk about?” asked Mira.

           Peter snorted.

           “You have a cute voice,” Peter began, then asked, “does it the body match?”

           Instinctively, Mira tensed and shot a look at the grandfather.

           The grandfather folded his arms and shook his head before he spoke.

           “I’m sorry, Miss. He’s not himself, there’s no excuse for his offensive manners. Maybe you can come back another time when he’s more respectable?” the grandfather offered in a tired voice.

           Mira nodded, then began to put her papers away and stood.

           When she neared the door, Peter began to chuckle. Mira and the grandfather turned to look at him. The young man looked much older and frail in the dim light, his shoulders hunched and shook as he laughed.

           “Yes, yes. I’m not myself,” Peter began, “today is a bad day for me. It’s both my eyes and my legs. Last week it was just the legs. The week before that it was the eyes. A month ago, it was everything up to my neck. Mira, have you ever lost feeling from your toes to your neck? Not just the tingly sleepy leg syndrome but actually felt like there was an eternity between your toes and the earth, even though you could look down and watch your toes scrape the carpet?”

           “No, I haven’t,” Mira said flatly.

           She’d knew about the episodic nature of MS, a neurological auto-immune disease that runs in the background like the silent ticking time bomb. There are people who’ve learned to live with it, minimized their episodes through dietary modification, but to this day there’s no cure and only experimental medication with side-affects that rival the symptom of MS.

           “Have you ever gone blind?” asked Peter.

           “No. Never,” replied Mira.

           “Well, what can you help me with then? What are you here for?” asked Peter, somewhat petulant.

           “I’m the person that helps you optimize your living situation so that you can achieve maximum potential with your current health restrictions,” replied Mira succinctly.

           Peter guffawed.

           “Did you just google that? I feel like I just had a textbook read to me,” replied Peter, incredulous.

           Mira stiffened, then sighed and looked at the grandfather. The old man ran a hand through his hair and shrugged, then nodded toward the door. Mira held up a hand.

           “It’s true, Peter,” Mira began, “that’s basically how an occupational therapist is described in the course handbook. I’m not going to apologize, because just like you’re limited, so am I. Today, I saw a woman who is nineteen and has thirteen tumors on her spine. The chance of her living a year longer is less than a percent of a percent. After that, I saw a woman who suffered two strokes leaving her left arm and cheek muscles limp, she’s permanently blind in one eye, and hasn’t left her home in nine years because, even if she could find a way to leave, her anxiety is crippling because her former husband kept her trapped inside their home and beat her if she tried to leave.

           “There was a time that I could give each patient all my energy. I poured myself into each person and, given a situation like this, leaving would be the last thing on my mind. I lost two really great relationships that way, didn’t see my grandmother the last two years before she died, and found myself dislocated from everything I love about life. Like I said, I’m limited.

           “I want to help you. More than anything. But the biggest roadblock to me doing that, is you and your mindset. I’m not supposed to say that, ever. In fact, I could be fired for it. I’ve never been blind or lost control of my limbs or any of that. But I know what it feels like to lose someone you truly love, and I imagine that’s a lot like losing part of yourself.”

           There was a pause, the room was silent.

           Peter sighed and rubbed his face with his palms.

           “I’m sorry, Mira. Like Grandpa said, I’m not myself today. I haven’t been myself in five-hundred and seventy-two days and I’m afraid I’ll never be myself again,” said Peter in resignation and turned his head back toward the far wall.

           With that, he folded his arms and fell silent.

           The grandfather nudged Mira’s arm and led her to the door.

           They walked silently up the stairs to the main floor. Mira’s heart was pounding, she feared her outburst would cost her later. She wondered what Peter’s grandfather made of it.

           “Do you have a moment before you leave?” asked the grandfather.

           Mira searched his eyes; he didn’t seem angry. She waited for an explanation.

           “There’s just something I want you to see, it has to do with Peter,” he added when Mira didn’t reply.

           Mira checked her watch, even though she still had plenty of time before her next appointment. She nodded.

           “I can spare a few minutes,” she said.

           They walked through the living room and went through a door to a den. It was a well decorated room with a large bookshelf on the wall opposite the door, to the left was an elegant desk in front of the bay view windows, and to the right wall was a trophy case and it was in front of the trophy case that the grandfather stopped, his hands crossed behind himself.

           Mira pulled up beside him.

           Every inch of the trophy case was covered with medals, trophies, and photos or a smart looking young baseball player, a pitcher from the looks of it. The photos were a timeline from middle school to college. A jersey hung to the right side of the case, it read Mullaly on the back above the numbers. The team colors were the red and white with a collegiate emblem on the shoulder. It was Peter’s old jersey.

           “For over a decade, I watched him do incredible things. As a shorter man, the said he’d never be a pitcher, just didn’t have the length for a fast pitch. He proved them wrong. He became starting pitcher in sophomore year and led set regional records for most no hitters in a season. They won state two years in a row. He was invited to U16 and U18 team USA. Then went on to a full ride to University of Arkansas, one of the best college baseball teams in the country. It was his second year at Arkansas when he was hit with the swine flu and a month later he was diagnosed with MS, ending his baseball dreams” said the grandfather sadly.

           They were silent for a moment.

           “I don’t know what to say. That’s so sad to hear,” said Mira, as her eyes passed over the trophies which seemed to her like artifacts of a different era.

           The grandfather turned to her and searched her eyes before he spoke.

           “You were right in there, you know. He has lost himself and, because of it, we’ve lost him. But he’s not dead. He needs a reason to live, Mira. I can’t give it to him, and neither can you but, maybe, there’s something we can do together help believe that hope still exists,” said the grandfather.

           Mira nodded. She didn’t know what that looked like.

           At the door, they said goodbye.

           “See you next week?” asked the grandfather.

           “Yes. See you then,” replied Mira.

           Mira slid into the frayed seats of her Honda and sat quietly for a minute. Then she screamed and punched the steering wheel until her voice was hoarse and her hands were bruised.