Five Years to Live

by Frank Zaccari

  In the hospital there were routines. Everyone was familiar and comfortable living and working with disabled people. That is not the case back in the real world. Many people are not comfortable around a disabled person. They don’t know what to do or say. Far too many people talk to the person who is with the wheelchair user instead of directly to the person in the wheelchair. Some people would avoid Michael in stores or in church or just on the streets. As hard as living in a hospital can be, it is nothing compared to the isolation a disabled person feels in the real world. Yet Michael was determined that he was going to live in his beloved western New York. He planned to get a master’s degree at Buffalo State and become an advocate for the disabled community. He resolved to himself, I did this once at Canisius, and I will do it again.

  The last week in February found Michael in court over the insurance situation. After six months without the basic equipment he needed to survive, Michael was ready to go to court. His attorney prepared him for the argument from the worker’s compensation carrier.

  “They will try to question if this was a business trip and if you had taken the most expeditious route to Dover. They will have maps of different routes you could have taken, and they will question why you took this particular route. They will question where you stopped to eat. What you ate. Whether what you ate was reimbursed by your company.”

  “Why does this matter?” Michael asked.

  “In order to deny this claim they must prove that your travel was not work-related. They don’t have a case, but by using this delay tactic, they bought themselves six months to determine how to fund this loss.”

  Michael’s attorney set the stage to establish that this was a work-related injury. He presented Michael’s job description, which stated that his duties included driving to and from store locations over weekends. He also presented a written statement from Aces that Michael was to arrive in Dover on Monday, August 12 and that he would be driving from Delhi to Dover on Sunday, August 11.

  Michael’s attorney then explained in detail the nature and extent of Michael’s injury. He described in excruciating detail the pain and suffering involved with the surgery and rehabilitation. He showed diagrams, photos, and videos that explained the need for a customized power chair and a modified van. He ended by reading the detail of Michael’s shoulder injury, the additional damage that had occurred to his back due to his poor posture, and the additional surgeries due to calcium deposits. Michael’s attorney argued that the insurance carriers had six months to resolve this situation, but they elected to deny paying this claim until ordered to by a judge. To make him endure this additional and unnecessary pain, suffering, and hardship was unconscionable at best and willful gross negligence at worst.

  The worker’s compensation carrier challenged whether Michael was actually traveling for business on a Sunday. They challenged whether he took the most direct route to Dover in order to create the impression that this was a leisure trip.

  They challenged the route taken from Delhi to Dover. Michael responded, “It was the recommended route on the ‘trip ticket’ prepared by AAA.” The attorney then turned to where he stopped to eat and what he ate. The attorney, who sounded like Don Knots, asked Michael if he stopped to eat. Michael said “Yes.” Then the lawyer asked, “What did you eat?” Michael said “chicken and Sprite. Then this lawyer started saying things like “Did you pay for the chicken and Sprite? Did you get reimbursed from the company for the chicken and Sprite? Was chicken and Sprite an approved meal? Why did you stop at that restaurant for the chicken and Sprite?” It was like a bad episode of Andy Griffith where Barney Fife keeps repeating “chicken and Sprite, chicken and Sprite.” The judge was not amused.

  Michael answered all the questions and produced expense statements that showed he had been reimbursed for all travel-related expenses, including meals, for trips since he first joined Aces.

  The judge ordered the company to immediately pay all his hospital and doctor bills and for all the equipment listed in the complaint. In addition they had to renovate at least one house for him and customize a van. The judge was not happy with the insurance company. With this ruling, things started to happen, and Michael felt hopeful. As they left the courtroom, the attorney said to Tony, “I think we have a strong case against the state of New Jersey Highway Department for negligence. ”

  “Do what you have to do and keep us posted,” Tony said.

  Donna came to Dunkirk the first week in March to spend four or five days with Michael. Her goal for this visit was to be Michael’s primary caretaker. She wanted to see if she could at least do what was needed. Michael told his mother about Donna’s plan. All the family members agreed to let Donna do whatever she could, but the family would be there to help her. Donna gave it her best effort, but she struggled with every procedure. Michael encouraged her and even laughed when he slide off the transfer board and onto the floor. Donna felt terrible when she struggled and felt useless when Carm would step in and help her. One night she cried to Carm, “I am never going to learn to do this. I am going to end up doing something wrong and causing more damage.”

  Carm tried to reassure her that she would get it with time and practice. “The first time I tried to transfer Michael at Jefferson, I fell backward and he landed on me. The therapists had to lift him off me. Believe me, I felt totally useless, but I stuck with it and I learned. You will too.”

  Donna smiled and appreciated the comment, but deep down inside she wasn’t sure. When she drove home, she was full of sorrow and self-doubt.

  Chapter 12

  Another Detour

  By late March, Michael had his custom chair and van. He had contacted Buffalo State University and was applying for the MBA program starting in June.

  Carm and Anthony continued to be Michael’s sole caregivers. Finally, after very long and often heated family discussions, Michael’s parents agreed to let a nurse come in and help with his care. One day on a visit home, Joe and his family spent the night. The next morning the nurse was taking care of Michael. She came out of his bedroom and said to Joe, “Your brother wants to see you.”

  “What do you want, douche bag?” Joe said.

  He was expecting Michael to call him something that ended with the word “face” or “head,” but Michael just said, “I think there is something wrong with me.”

  “I hope you are not just figuring this out,” Joe joked. “I have been saying that for years.”

  “No, I am serious.” Michael said, “Just look.”

  Michael pulled back his sheet. Joe physically jumped. “Holy shit! What the hell is that? ”

  Michael’s testicles were a deep red, almost purple in color, and one was the size of a large grapefruit. Michael eyes were filled with fear as he said, “I don’t know,” and he swallowed hard.

  “Does it hurt?” Joe asked.

  “No, dumb-ass,” Michael sneered, “I’m still paralyzed.”

  “I never thought I would say this,” Joe confessed, “but I am glad you are paralyzed right now because that son of bitch looks like it hurts like hell. I’m having sympathy pains just looking at it. Let’s get you to the hospital.”

  “I have an appointment with my doctor this afternoon,” Michael said. “They are going to run some tests.”

  “Well, I have to go back to Elmira this evening. Call me as soon as you get the results back.” Michael promised he would.

  That next night when Joe returned home, his wife met him at the door. “Your mother called. Michael has testicular cancer.” The words exploded like a bomb. “They are going to operate next week.”

  “What the fuck more can happen to him?” Joe screamed. “Come on, God, give the poor guy a break. The life he was planning and worked so hard for is gone. He will live in pain and will need to use a wheelchair for the rest of his life. But no, all that’s not bad enough. Let’s give him cancer so he doesn’t even get to live the five years the doctors expect.”

  The entire family and Donna gathered
together at Buffalo General Hospital. Carm said, “Before the first surgery, I was praying, ‘Dear God, please let him walk again.’ Now I am praying to please let him live. How much suffering can one person take?”

  The doctors explained the risks of the surgery. “We believe the cancer has not spread. If that is the case, this is not a difficult procedure for an able-bodied person. This is not the case with Michael. There are so many more complications for a quad. His lungs will be at risk because his breathing capacity is already diminished. Any post-surgical infections can present a major issue, and we have the ongoing challenge of bed sores.”

  “Thanks for the positive prognosis, doctor,” Tony said with disgust.

  “We’ll do everything we can.”

  Before the operation Michael told his brothers and sisters, “Whatever happens, don’t let them put me on any artificial respiration. If I’m going to die, let me go naturally.” He also expressed this to the surgical team and had his lawyer prepare a statement that he did not want any heroics or extraordinary lifesaving procedures.

  The operation was a success. They removed the cancer and one testicle, but his lungs filled up with fluid and he needed help breathing. They put him on a ventilator during the surgery to help with his breathing. The doctors explained to the family that the use of a ventilator in this case is not an extraordinary procedure and is standard practice to prevent pneumonia during surgery. “We will remove it in two or three days as we clear the fluid from his lungs and he regains his lung capacity.”

  Now, without the use of his voice and very limited use of his hands, communicating with Michael became very difficult. With Michael’s voice still ringing in their ears, “Don’t let them put me on any artificial respiration,” the family looked into his frustrated eyes and tried to keep their attitudes positive and their own feelings of guilt and sorrow hidden.

  “He seems to be slipping away,” Anne said. “Every time we visit him, he seems further and further away. We have to just keep talking to him to let him know that we are still here.” After a couple days, spirit and emotion numbing fatigue started to settle on the family. Michael drifted in and out of sleep all day long. They all told Michael repeatedly that they loved him and that they were there for him.

  At one point Michael opened his eyes like a man emerging from a dark place. Joe said to him, “Mike, I have a question for you. If the plural for mouse is mice, what is the plural for moose? Meese?” Michael looked at Joe as if he had lost his mind. “I was just wondering,” Joe added. He sat there thoughtfully for a second and then said, “Do you think there is a sign in the restrooms at the sewage treatment plant that says, ‘Employees must wash hands BEFORE and AFTER using the restroom?” This got a smile from Michael. “I was just wondering. How do you know when sour cream has gone bad? Just wondering.”

  Tony chuckled and joined in, “If a guy in the audience of a silent movie started talking, do you think the other patrons would tell him to be quiet? I was just wondering.” This got a few more snickers from everyone in the room. Michael shrugged and motioned towards his parents, but Carm objected, “Hey, we weren’t old enough to go to silent movies, Mr. Smart Ass.” This brought on peals of laughter. After a few minutes of this, the whole family was laughing at their own absurdity and exhaustion. Michael started to react, smiling and shaking his head. His ash-white skin started taking on a more natural reddish hue. In his eyes they could see a look of recognition.

  “I think he is coming back,” Anne said excitedly. “I think he knows who we are again.”

  “And he looks like little Mikey again too,” Mary said with relief in her voice.

  “I guess laughter is the best medicine,” Anthony mused.

  Michael was definitely back. His attitude was better, and he seemed stronger. Anne found a way for him to communicate. She bought a Magic Marker and a large sketchpad. She found that if she held the pad directly in front of him while he was lying in bed, he could write clearly enough to tell everyone what he wanted. Michael wrote on the pad all the time. One day when his arms were just too tired, he tried to tell Anne what he wanted by just motioning with his head and arms. Anne said, “I don’t understand. Just write it down.” Michael just shook his head in frustration and kept motioning with his arms and head. Finally Anne just repeated, “Write it down.”

  Michael relented and wrote in capital letters, “RAISE THE HEAD OF THE BED.”

  When Anne read his message, she said, “Well, you don’t have to yell at me.” Michael just rolled his eyes and shook his head. “I know what you are saying now.” She parodied a male voice, saying, “‘Anne, you are such an asshole.’” Michael grinned and just started tapping the tip of his nose like in charades to indicate that you got it “right on the nose.”

  “Well, you are an asshole too,” Anne replied jokingly.

  Their parents gave each other a satisfied smile, nodded, and agreed that everything was indeed back to normal.

  Chapter 13

  I Release You

  After the cancer surgery and radiation, Michael came to the realization that Dr. Steele’s prognosis of living five years was accurate. He started to believe he wouldn’t live five years. None-the-less, Michael was determined to get his MBA and at least attempt to become an advocate for the disabled community, but the cancer surgery pushed back his start date at Buffalo State University from June to September.

  Michael noticed that his conversations with Donna had moved from those between lovers and a couple planning a life together to a patient/caretaker scenario. This caused him great sorrow. He so wanted to marry Donna. He had held out hope that maybe he would recover enough that Donna could be a wife and not his primary caretaker. After the cancer surgery, he knew in his heart that was never going to happen. Michael talked with a psychiatrist, Joe, and Mary. He came to the inevitable conclusion that he had to let Donna go so she could have the life they both wanted and had dreamed about.

  Donna Harris looked and felt as if she had aged ten years during the past ten months. Her eyes had lost their sparkle, and friends commented that they couldn’t remember the last time they had seen her laugh or even smile. Donna’s heart was broken. She was just twenty-four and was taking Prozac for depression. Over a cup of tea, she confided in her mother, “Mom, I am so afraid for Michael. The doctors said his life expectancy before the cancer was just five years. Now with this cancer, who knows.”

  “The two of you have been through a horrible year.”

  “I am so tired, Mom. He is the love of my life, but I can’t do any of the things he needs. I suck at trying to transfer or dress him, and I will never get that catheter to work right. I am going to make things worse for him.” Donna started to cry.

  As her mother hugged her she said, “Sweetheart, no one should go through what you have this past year. I think you have been amazing. You have been there for the man you love. You have done the very best you could. Maybe it’s time for you and Michael to talk and see where you both are now.”

  “What if we were married and this happened? Would I still have these doubts? I feel like I will be abandoning Michael.”

  “Donna, the one thing that I know about Michael is he loves you totally and completely. I know he wants you to be happy and I believe with all my heart that he wants you to have the life the two of you had planned. This terrible accident is a life-changing event. Nothing will ever be the same. Whatever the two of you decide, your family and his family will be there.”

  “I am going to see him this weekend. We’ll see what happens.”

  Donna arrived in Dunkirk in time for dinner with the family. They all talked, laughed, and played cribbage. Donna helped Carm get Michael into bed, and then she joined him. She kissed him, and they both knew this would be the last time they shared a bed together. In the morning after Michael was out of bed and in his wheelchair, the two sat on the front porch. The red flame of dawn shone in her face. “Are you sure we are doing the right thing?” Donna asked as emotions, all too raw a
nd real, came to the surface and her eyes melted into puddles of tears.

  “No, I am not sure.” Michael submitted his reply with a heavy heart. “I know my accident was a game changer. Ever since I have known you, you have wanted to have children. Not only can I not give you children, I won’t be much help to you in raising any children that we would have adopted. I won’t be able to get out of bed for a midnight feeding. I won’t be able to hold them. Actually, I would be a distraction for you because I need so much care. And if the doctors are right, I will be dead in five years anyway, leaving you a widow with a bunch of kids. I am trying to do the noble thing here, you know, ‘to love pure and chaste from afar.’”

  “What the hell are you talking about, Michael?”

  “You know, the movie, The Man from La Mancha? Don Quixote? The Impossible Dream?” She still looked confused, and when he realized nothing was landing, he said, “Never mind. It’s not important.”

  “Are you sure has nothing to do with our weekend we spent alone together?” Donna sobbed. “I really want to take care of you, but I am afraid. What if I do something wrong and you get hurt? What if I don’t do your catheter correctly and you get an UIT?”