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Five Years to Live

Page 9

by Frank Zaccari


  Tears stared welling up in Carm and Anthony’s eyes. Tony asked, “What is his likely life expectancy?”

  Dr. Steele started to reply, “Life expectancy varies depending...” but Tony cut her off .

  “Cut to the chase, doctor. We aren’t going to hold your feet to the fire here. I have read that many people with this injury die within five years. Is that accurate?”

  “Yes, many patients with this level of injury die within five years. Many others live longer.” Dr. Steele paused for a moment and took a deep breath before continuing. “This is a life-changing event for Michael, and all of you. He is never going to be the same. He will need help dressing and cleaning himself.” The doctor paused for a moment to let them process what she was saying, and then continued, “You may want to consider putting him in a good nursing home.”

  “No,” Carm choked out after she regained some composure. “We will learn whatever we need to in order to take care of him ourselves.”

  “You might want to reconsider,” the doctor began again. “It is going to be a lot of work and it will not be…”

  “Doc,” Michael’s father cut her off abruptly, “that option is not on the table.”

  Dr. Steele scanned the room. Everyone was nodding in agreement, confirming his or her firm resolution that Michael would never see the inside of a nursing home.

  Dr. Steele looked at Dr. Keller and finally said, “With a support team like this, I have no doubt that Michael will be in good hands.” She gave Carm a tight-lipped smile and then said, “Okay, here is what we have to do...” The meeting went on for an hour and a half. Plans were made, assignments were delegated, and an army of family, friends, and hospital staff members was galvanized behind a single, noble cause.

  “Now,” Dr. Steele said, “it’s time to tell Michael. I told him it is not practical to have all of you in the room, and I asked him which family member he wants to be with him. He told me he wanted Mary because she is involved in long-term rehabilitation, and she will be able to help him understand. All of you are welcome to come in after.” Donna visibly slumped in her chair when she heard this. With that, the two doctors and Mary went to see Michael. The rest of the family headed to the waiting room.

  Even though Michael was still in pain from the surgery and halo, he was engaged in the discussion, asking all the important questions. “How long will I be in the halo? How long will I be in a hospital? What side effects will I have to deal with?”

  Dr. Steele asked how he knew so much about all of this.

  “You have really good nurses here.” He paused and emphatically said, “THEY have answered my questions.”

  Dr. Steele took the jab in stride. “We want to make sure patients are ready to have that discussion, which usually takes place right after surgery, but your blood clot set us back a bit.”

  “You do realize they took one on the chin for you?” Michael couldn’t resist throwing another jab her way.

  She just nodded and asked if he had any more questions.

  “How long does it take for the spinal cord to heal?”

  Happy to be discussing medicine again, she answered, “It generally takes two years for the swelling to go down.”

  “Okay, so I have two years to get my strength back. I need to bust my ass for the next two years.”

  He just kept saying the words “two years” over and over in his head. After the doctor left, he whispered to Mary, “Fuck their prognosis. I’ll be walking within two years.”

  Mary was pleased Michael was ready to fight this battle.

  That night back in the dormitory, Mary was filling the family in on the expected rehabilitation. She explained all the tests and how long the expected stay would be at Jefferson and then Magee Rehabilitation Hospital. After the news Donna asked Tony if she could talk to him privately. As they walked out into the cool Philadelphia night, she told Tony how hurt she was that Michael had asked for Mary while she was trying to comfort him. She said, “I feel like he’s pushing me away. He just wants his family here now.”

  Tony said, “Donna, you are very important in Michael’s life. You can do things for him that we can’t. Please keep in mind Mary is a professional therapist. She does this for a living. She understands what is going to happen from the clinical perspective. The rest of us can offer emotional support and love, but Mary can explain what is going to happen and why.”

  Donna started to cry and said, “I know you’re right, Tony, but Michael and I were planning to get married.”

  Tony handed her a tissue and said, “I know. He told us. We know what you mean to him. We know he wants to spend his life with you, and we all hope with our hearts and souls that happens.”

  “What do you think is going to happen, Tony?”

  “I don’t know, Donna. We are a very close family. All we had growing up was each other. When one of us is happy, we are all happy, and when one is hurting, we all circle the wagons and protect. I am a realist. I am not expecting a miracle to occur. It’s like the doctor said, this is a life-changing event. None of us will ever be the same. You are welcome to stay as long as you like. You may be able to deal with this long-term or not. If you do, that will be wonderful. However, if you can’t, no one in the family will hold that against you. There is one thing you have to understand...” Tony paused for a moment to search for a way to soften his next words. When he realized that he could not add any fragrance to this flower, he just said bluntly, “You may not always be his girlfriend, but he will always be our brother.”

  Donna started to cry again. Tony quickly added, “I am not telling you this to hurt you. I want more than anything in the world for you to be my sister-in-law. I know Michael wants you to be his wife.” Tony hugged Donna as she broke down. Once her sobs subsided, he said, “Let’s go back inside. I have some wings and Philly cheesesteaks being delivered.”

  Chapter 8

  The New Journey Begins

  The day after the surgery, the family met with the lawyers in Philly while Donna and Michael spent some time alone. Tony told them the story and the family’s concern. The senior partner said they would be happy to represent Michael, and they felt there might be a case against the New Jersey Highway Department. He said if there was a case, they wouldn’t charge them a dime. They would take a percentage of the settlement. Tony told them to do what they needed to do and keep him posted.

  Michael was now in a halo. A metal halo was screwed into his head in four places. It had four metal posts coming off the halo ring, which were connected to a padded vest that he was now wearing. It had the same material as football pads. This device would keep him from moving his neck. Donna was sitting with him before she headed home and did most of the talking. “Michael, I know we are going to get through this ordeal. I know you are going to walk out of here, and we will go on with the life we are planning. I know God is listening, and He is going to make you better. This is just a temporary setback. You believe that don’t you?” she asked pleadingly.

  “I believe that. We’re going to be okay.” Michael’s words were audible but not convincing.

  Donna picked up the doubt in his words. “Don’t you give up on us, Michael. I love you, and we are getting married. Do you hear me? Don’t give up on us,” she said with the conviction of a preacher.

  Michael smiled at her and said, “I won’t. I love you. I’ll be here when you get back.”

  Donna hugged and kissed him good-bye. As she walked to the door, tears were streaming down her face.

  After she was out of earshot, Michael starting praying out loud. “Dear God, help her to understand and accept this situation. I am no longer the man she fell in love with. I may never be the same. She needs a man who can give her the life she deserves. Please bring that man into her life.”

  After the meeting with the lawyer, Tony went with Donna to the airport. “Tony, I just know Michael is going to walk out of that hospital.”

  Tony wanted to say, I just hope that whatever time he has to live h
e won’t be in pain and suffering, but he just patted her hand and said, “I hope you’re right.”

  Donna was lost back in Delhi. She appeared to be in a trance. She did her job but couldn’t tell you what she just did. Her eyes were constantly filled with tears that overflowed several times every day. Her family and friends stayed with her constantly and did their best to make her feel better. “Honey, it’s in God’s hands now,” her mother told her. “It will be good for you to get out. Let’s go have dinner and see a movie. ”

  “I can’t do anything here, Mom,” Donna cried. “Everything in this God-forsaken town reminds me of Michael. We did everything here together. I cry everywhere. I start to cry when I drive by Aces or the coffee shop where we had our first date, or every restaurant we went too or in this apartment where we first made love and planned our life together.” Donna dissolved into a puddle of tears.

  Her mother just hugged her and whispered, “Time heals all things. We just have to give it time and accept that this is in God’s hands.”

  The next few weeks at Jefferson were spent re-learning everything. Basic activities like how to balance himself; how to hold a specially designed fork, spoon, and knife; how to actually get the food from the plate to the fork and ultimately into his mouth. One thing Michael used to motivate himself was a burning determination to prove all the doctors wrong. “I will walk out of here. I will get my life back. I will show them. I will not let this stop me.” Each day in therapy, his fighting spirit was renewed. However, each day, in barely noticeable increments, he was growing more resigned to the realities and severity of his condition.

  Routines were put into place. One week after the surgery, Anthony went back to work. He would come to Philadelphia every two weeks. Mary went back to work in New Jersey and returned every weekend. Donna came every other weekend. Every weekend family and friends made their way to Philadelphia. Carm was the contact. She didn’t return home the entire two months that Michael was at Jefferson. When Michael transferred to Magee, she moved out of the dorm and took the thirty-minute train ride to and from Frank Mancuso’s house each day for the first two months. While Michael was in therapy, Carm would visit all the historical sites in Philadelphia. She would take Michael’s visitors on tours of the city and was affectionately called “Ranger Rick” by the family and hospital staff for her knowledge and ability to give detailed directions to wherever someone wanted to go.

  Michael had to learn how to move with assistance from the bed to the wheelchair and how to maneuver with the wheelchair. He learned words like “transfer board,” “long sitting,” “commode chair,” “internal” and “external catheter,” and the names of various wheelchair seating cushions and backrests, able-bodied vs. disabled, and UTI (short for Urinary Tract Infection). He was measured and sized for a customized power chair and manual chair. There were physical tests to determine his lung capacity, arm strength, and the dexterity of his fingers and hands. There were occupational tests to determine his interests and capabilities and psychological tests for his emotional stability and acceptance of his new status.

  The psychologist had noted that Michael was in denial about his injury and not accepting the fact that he would never walk again. Judy, the physical therapist, had noticed this in Michael’s chart and mentioned it to Mary one Saturday morning.

  “Michael is working really hard in all his therapy sessions, but his team has discussed his psychological state a few times. You realize he is in denial,” Judy said in a very medical, professional tone.

  “I know that,” Mary said in a very matter-of-fact manner. “It’s what’s keeping him from giving up right now. We both know in time people with this injury figure out what’s really going to happen.”

  “But he could be in for a big psychological meltdown when he figures this out. Aren’t you worried about that?” Judy asked with great concern .

  “Judy, you have worked with him long enough to know that is not going to happen. He will start to accept this gradually.” Mary, who had made it her mission to watch closely over Michael ever since he was in a body cast back in junior high, knew her brother so well that she could already see the change in his attitude and his concerns about Donna. She paused and then, almost in a warning tone, added, “I don’t want ANYONE to take away his hope.” The stare she held after that statement clearly implied that if anyone defied her wishes, they would have to deal with her and all the fury in hell.

  “Okay, I’ll keep a watch on him while he is here and let you know what I see,” Judy replied, noting that this subject had been addressed with the family.

  During these team meetings with Michael, they asked him to define his own personal goal. That one was easy. Michael told everyone, “Until I start walking again, my goal is to be as independent as possible. I want to be able to live in a house, drive a modified van, have a job, buy and cook my own food, go to restaurants, movies, and athletic and cultural events with the minimum amount of aid and assistance.” He was very clear that “I only want aides to help me with my bowel and bladder program, get me into bed, turn me every two hours, and get me up and dressed in the morning. I want to do everything else myself.”

  They seemed pleased with the announced goals, but everyone noted he was still in denial. After Michael left the meeting, Judy shared her conversation with Mary. Mary said, “At the appropriate time, I will have the psychologist sit with Michael, preferably after he gets to Magee.”

  Michael attacked every test, determined to exceed every standard. He was not going to let this injury beat him. He kept a note Joe had written the day after the surgery next to his bed as a constant source of inspiration. The letter read :

  Dear Michael,

  We are not going to let this paralysis beat us. Our family has endured great hardships. Remember all the stories Grandma used to tell us about how they lost everything in the fire on the farm during the Great Depression? How at eight months pregnant, she ran back into the fire to save the babies, Uncle Marion and Aunt Mary? They made it through those times by staying together and working toward a goal. Well, we have that same blood pumping through our veins. We have that same stubborn pride, that strong sense of family loyalty and that courageous spirit to run back into the fires that life sometimes sets.

  Remember all the great things we said we would do someday? Well, this is where we begin. This is not a problem; it’s an opportunity. Let’s show them what we got.

  Joe

  P.S. Mom wants to know, did you at least have clean underwear on?

  Mountains of insurance forms, papers, and statements were completed and submitted into the “black hole” so the health care provider and the worker’s compensation carrier could battle it out to see which one would ultimately have to pay.

  Cards, letters, and visitors continued to stream into Jefferson. Visitors and hospital staff were impressed with Michael’s attitude and progress. One of the hospital psychiatrists asked Michael if he would talk to another patient who was twenty-five years old, despondent, and not responding to or participating in any therapy. Michael was more than happy to talk. The two became friends and often talked about life, love, and moving forward during their time at Jefferson.

  Michael’s biggest concern remained Donna. He missed her terribly. He prayed every day that he would be able to resume some semblance of the life they had planned but deep down he was having real doubts.

  One day Michael asked Dr. Henler if he would be able to have sex. The doctor replied, “Yes, as long as you can get an erection, you can have sex. But you won’t be able to have psychogenic erection.”

  “What are you talking about?” Michael asked with that puzzled look that usually came to him when talking with the doctors.

  “Most men can get aroused psychologically—seeing a naked woman, you know, some type of psychological/visual stimuli,” the doctor answered, still sounding strangely clinical. “But you can still achieve an erection with physical stimulation. Do you understand?”

  “Ye
s, I understand that.”

  “There is some bad news even if you can achieve a physically stimulated erection. You won’t have any feeling down there during sex.”

  “Aren’t you just full of good news today, doc,” Michael said without even attempting to veil his sarcasm.

  “Sex isn’t all about the physical aspects. It’s ninety percent mental.”

  “I’m not sure who you are having sex with, doc,” Michael said as he gave him a perplexed sideways glare with a raised eyebrow, “but it’s not ninety percent mental to me. Are you sure you are doing it right, doc?”

  “Ask a woman and see what she’ll tell you. They understand this better than men. It’s about connecting with someone on all levels, not just the physical level.”

  “Well, I think you are full of shit, but my next question is if I can’t feel it, then can I have children? ”

  “Probably not. There is less than a one percent chance of you fathering a child. Because of your level of injury, you cannot ejaculate. The valve that closes off so you can ejaculate doesn’t work anymore. If you were to produce any sperm, it would go back up into your bladder and come out when you urinate.” The doctor finally broke out of his professional mode as he said, “On the plus side for your girlfriend, because you cannot ejaculate, you will be able to maintain an erection for two or three hours.”

  Michael did not hear anything the doctor said after the words “probably not.” This really caused Mike to immediately think of Donna and their plans to have two kids. He then asked with great apprehension, “How do I tell Donna I can’t have children?”

  “She already knows. We discussed this early on when we met with your family.”

  “How will I know if any of this is correct?” Michael asked.

  “You’ll have to try it and see,” was the answer. “We can make arrangements for you and your wife or girlfriend to have some privacy. There is a family room on your floor, and you two can spend some time alone there. Then you’ll know.”

 

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