“Mom, tell them to shut up.”
Donna received no help from her mother, who was also laughing hysterically. “You would be legendary in Delaware County, sweetheart. Can you imagine that? His grandmother, old lady Collins, would have a heart attack on the spot. Your grandmother would need to change her pants.”
Finally, Donna started to laugh. “I know, Karen, when I get to that part, you can hold up a sign that just says, ‘Tim.’ Oh my God, I can’t believe I said, ‘Michael.’”
“Well, you would be married to Michael right now if…” Carol’s voice trailed off without completing her thought.
“Okay, no more talk about the vows. This stays in the car!” Donna said in a threatening tone.
Karen was laughing so hard she could hardly breathe but still managed to say, “Maybe you should consider just repeating after Pastor Norman because you are real bad at this vow-writing thing.”
“All right, that’s enough now,” her mother said, trying to be serious, but she couldn’t stop herself from laughing.
Michael watched the video and listened to Mary’s description of the house. Mary wasn’t kidding; it was a mirror image of her house. The price was well below market value, and it would come fully furnished. The family had the talk with Michael about leaving western New York. Everyone, Carm included, said it would be best for him to move to Phoenix. Not one to make a snap decision, Michael said, “I’ll sleep on it and we’ll all talk in the morning.”
Michael spent the night doing the pros and cons list in his mind. While he loved western New York, this accident had altered his life forever. He knew the right decision was to buy the house and move to Arizona. Mary would be next door. Tony was a two-hour flight away, and his mother and father would spend half the year in Phoenix. Joe and Anne would come to Phoenix at least once a year, and all the other New York cousins would come to visit. He thought, I wouldn’t be alone in Phoenix. The weather is definitely better, and Arizona’s infrastructure is very disability-friendly. His life with Donna was over. Maybe I am supposed to be in Phoenix. He remembered a story Father Dowdell, one of his high school teachers, once told him. “If you want to make God laugh, tell him your plan.” “Okay, God,” Michael said out loud. “If that is what you wanted, you could have just told me and we could have avoided this whole quadriplegic thing. But then again, I guess you never do things the easy way. You make your people work for their assignments so that when you give it to them they are ready. You made Moses and his people wander around the desert for forty years. You could have given them a map, maybe write some directions on the other side of the Ten Commandment tablets. Well, I guess it’s time to pack it up and put this place in my rearview mirror.” Michael thought about Donna and then said, “Yes, it is time to let go.”
Chapter 18
Starting Over
The sale of the Phoenix house occurred in early June. Mary estimated it would take until mid-July for the worker’s compensation carrier to approve the renovation plans and another month for the renovations to be complete. The best guess was the house would be ready for Michael around Labor Day in early September.
After recovering from surgery, Michael was back at Fredonia State. Even though he would be moving in a few months, he planned to create processes, procedures, guidelines, and a five-year action plan. Michael left no stone unturned. He consulted with his former doctors and therapists from Magee, construction companies, and Max Cleland, the former administrator of the United States Veterans Administration. Mr. Cleland was a good friend of Mary Battaglia. He served in the United States Army during the Vietnam War, attaining the rank of captain. He was awarded the Silver Star and the Bronze Star for valorous action in combat. On April 8, with a month left in his tour, a grenade exploded and the blast shredded both his legs and one arm. Max was a tireless and passionate advocate for veteran and disabled rights. He gave Michael a great deal of information regarding handicapped services and where and how to apply for federal grants .
Michael worked like a man on a mission. The campus was undergoing major capital construction projects, and Michael was actively involved in every one. He brought a positive attitude and offered many suggestions that were incorporated into the engineering design plans with minimal increase in cost. Michael was seen meeting and working in every corner of the campus. Nearly everyone on campus knew his name and stopped to say hi and offer encouragement. He was back to his old role of “The Mayor.”
There was genuine sadness when he announced his resignation due to his pending move to Phoenix. His good-bye party, which he thought would be a cake with a few coworkers, turned out to be a major event. The President of the University, along with several deans, department heads, and senior management of several architectural, engineering, and construction companies, attended, as well as a large number of disabled students and their parents. The students and parents thanked Michael for giving them both a voice and a chance. When it was time for Michael to speak, he said, “I am so grateful for all the kind words. This job was a labor of love for me. I used my education from Canisius, my experience from my job at Aces, and knowledge I gained from the angels of mercy at Thomas Jefferson Hospital and Magee. To all the students and parents here, you can be whatever you want to be if you are willing to put in the work and the effort. No one owes you anything, but the opportunities are there if you are willing to work. To the business and academic leaders, I hope I helped you see and understand that disabled is not unable. The battle is not over. I am not sure what I will be doing in Phoenix, but it will be something to help children and the disabled.” There were hugs and tears as the party ended. Michael left with a sense of accomplishment. He thought, If the doctors are right and I am going to die next year, at least I got a master’s degree and made a difference here at Fredonia State. Screw those doctors. I’m going to live another fifty years.
The Collins/Harris wedding was set for Labor Day weekend, 1989. All the preparations were made and the big day had finally arrived. Donna and the bridal party finished their last-minute details in the church balcony. Donna wore a strapless, A-line, floor-length satin gown that accentuated her voluptuous breasts and exposed just a teasing amount of cleavage. She carried burgundy chrysanthemums, which complemented her long, flowing, auburn hair. Her blonde highlights seemed to create a halo around her head. Her eyes, sparkling green to the second power, at first scanned the church casually from her perch in the balcony. As the time to begin the ceremony drew closer, her eyes grew more and more panicked and frantically searched the crowd. Her sister leaned in toward her and said, “Stop it. I know what you are doing. He is not coming.” Donna shot her an indignant look, which Karen just returned mockingly.
“I’m not looking for Michael,” Donna said with distain.
“I hope you don’t think that Dustin Hoffman is going to come here and start pounding on the door.”
“What are you babbling about Karen?”
“You know damn well what I am talking about. In the movie The Graduate, there is a wedding scene where Dustin Hoffman pounds on the door of the church and then he and Katherine Ross run off together.” Donna just looked bewildered. Karen said, “Never mind, but you really need to dust off that moss-covered purse of yours and buy a VCR.”
Donna became very pensive and distant. Tears started forming in the corners of her eyes. “Michael used to tell me that too.”
Karen’s head and shoulders dropped in resignation as she thought, Oh shit, she is marrying the wrong guy. She said to her sister, “You know you don’t have to go through with this, Donna. It will be one of the biggest scandals in Delhi history,” Karen said with a laugh, “but we’ll survive. We may have to move to Syracuse, but we’ll survive.” Karen took a deep breath as if searching for the right words. “Tim is a good man, but he is not Michael. If you give him a chance, he will be a good husband and father. He loves you with all his heart. The question is, do you feel the same?”
“I know he is a good man, Karen, and I do lov
e him, but how do you know if it’s going to work, if it is the right thing? How did you feel just before you married Ted?”
“I was involved with Tommy for several years before Ted. In fact, we all thought Tommy and I were going to get married, remember?” Donna nodded. “But it didn’t work out. I remember having the exact same thoughts minutes before my wedding. Ted and I were married over three years before I truly felt it was the right thing. You just do the best you can every day. I often wondered about Tommy, but I didn’t obsess. I tried not to compare Ted to Tommy or turn Ted into Tommy. I gave him a chance and he gave me a chance and like the movie Fiddler on the Roof, over time we learned to love each other. Now I wouldn’t have it any other way.”
“Thanks, Karen. I love you.” The two sisters hugged. Then Karen said, “Look what I have.” She held up a three-by-five-inch card with the letters T I M written on it. “I made it just in case.” They both laughed at themselves and each other.
Tim wore a white tux with tails, which transformed the modest, humble man into the ranks of royalty. He looked regal as the sunlight shining through the stained glass fell upon him. The organist started the familiar “Here Comes the Bride.” Everyone stood and turned to see Donna in her moment. She was stunning as she started down the aisle with her father. She glowed as only a bride on her wedding day can. As she approached the front of the church, her eyes welled up with tears of joy and sorrow. She closed her eyes and thought, Please God, don’t let me say the wrong name.
The minister asked, “Who gives this woman to be married?”
Jerry Harris answered, “Her mother and I.” Then Mr. Harris performed the task that every father looks forward to and dreads: he lifted the veil, softly kissed his daughter, and gave her hand to Timothy Collins. The couple took the few steps to the altar and the ceremony began.
Tim said his wows. They were short and to the point, pledging his everlasting love and devotion to Donna. Then it was Donna’s turn. She took a deep breath. Her mother and sisters all held theirs. “I have dreamed of this day my whole life, and today it finally arrived. My heart is overflowing with joy and love as today, I, Donna Harris, take you, Timothy Collins…” Donna, her mother, and sisters all exhaled with relief.
Labor Day weekend saw the Battaglia family in Phoenix helping Michael move into his newly renovated home. Doorways had been widened, and doors with recessed hinges to provide more access were installed. The floors were sand-colored laminate, creating easy traction for both the power and manual chairs. The sink and oven were lowered to make them accessible to Michael. The bathroom was the highlight of the house. There was a roll-in shower and a sink with a large counter deep enough for Michael to wheel up and do whatever he needed to do. There was a large, paved backyard with a pool. The contractor had installed a lift so Michael could be lifted from his chair and lowered into the pool. Mary’s house was right next door, and the contractor installed a power gate for easy access between the backyards.
Carm Battaglia was not going to just spend the week and leave her “baby” in Phoenix. Since the accident Carm had either been Michael’s primary caregiver or oversaw the caregivers. After a week in Phoenix, Anthony, Joe, and Anne returned to Dunkirk. Tony and his family flew back to California, but Carm stayed. She was involved in the interviews for Michael’s aides. Aides were going to come to the house every night day to help Michael with his night time and morning routines. They would do light cleaning; do Michael’s laundry; and prepare his breakfast in the morning. Carm was going to make sure they did things her way and used all the tools and tricks she had learned over four years. Carm showed all the aides how to perform a transfer; how to perform Michael’s bowel program; how to turn him at night; and little secrets on how to keep the catheter in place; how to use a silk draw sheet, which made it much easier to turn Michael in bed; and how to strategically place pillows between his knees and ankles to prevent bed sores.
Carm stayed in Phoenix through Easter. The entire family returned to Phoenix the first Thanksgiving and Christmas. Going forward, Carm and Anthony came to Phoenix right after New Year’s Day and stayed until the beginning of May. Carm joked to her friends, “I live in New York until the temperature gets to ten degrees, and I live in Phoenix until it gets to one hundred and ten.”
That first winter in Phoenix was like a God-send. Without the bitter cold and snow, Michael stayed relatively healthy. He had a UTI but no respiratory infections. One extra benefit was that the warm Phoenix weather also provided great relief for Carm’s arthritis. Without the constant infections, Michael was able to regain his strength. He felt good enough to join the health club at Paradise Valley Community College.
The first Phoenix summer took some adjustment. Michael used a portable mister to spray water on his head and face. His favorite expression became, “Damn, it’s hotter than a pizza oven in hell.” It was critical he learned how to regulate his body temperature in 110-degree-plus heat. After surviving the first Phoenix winter and summer, plus having his house become “Hotel Battaglia” from the constant stream of friends and family who came to visit, Michael was ready to get involved in an activity or two. He decided he would get involved with one business venture, one church activity that involved students, and one sport or community activity.
On August 11, 1990, the Battaglia family and friends gathered in Phoenix to celebrate the five-year anniversary of Michael’s accident. He had past the first major milestone by living five years. At the celebration Michael said, “You people all look surprised that I lasted this long. Well, I have news for you: I expect to see all of you at my fifty-and sixty-year anniversary because I am not going anywhere.”
Mary was very well-connected in the head injury world, which was her specialty and many other areas in the disabled community. She introduced Michael to Bill Scott, a paraplegic, who had developed an excellent reputation as an advocate for the disabled community. There was a bill making its way through Congress to address and regulate the rights of the disabled. The Americans with Disabilities Act (ADA) is a law that was enacted by the U.S. Congress in 1990 and signed into law on July 26, 1990, by President George H. W. Bush. It was later amended with changes effective January 1, 2009.
The ADA is a wide-ranging civil rights law that prohibits, under certain circumstances, discrimination based on disability. It affords similar protections against discrimination to Americans with disabilities as the Civil Rights Act of 1964, which made discrimination based on race, religion, sex, national origin, and other characteristics illegal. Disability is defined by the ADA as “a physical or mental impairment that substantially limits a major life activity.” The determination of whether any particular condition is considered a disability is made on a case-by-case basis. Certain specific conditions are excluded as disabilities, such as current substance abuse and visual impairment which is correctable by prescription lenses.
The “original intent” of the law, as co-conceived by Lex Frieden and Mitchell J. Rappaport, was to create civil rights law protections for people with disabilities that would be permanent, would not be able to be reversed or weakened, and would prohibit all discrimination. It was also intended so that Americans with disabilities would be kept in the mainstream in terms of scientific and medical research and developments, especially opening future opportunities in space exploration to them, as well as public policy changes, health care law and policy changes, and civil rights protections and public law changes for Americans with physical, mental, and cognitive disabilities. It was intended to be a flexible set of laws that could only be strengthened, not weakened, by future case law .
Mary, Michael, and Bill decided to form a corporation named Abilities Unlimited. The mission of Abilities Unlimited would be to assist businesses in understanding and complying with Title III of the ADA: Public Accommodations and Commercial Facilities. Like with most new laws, there was a great deal of confusion and people who attempted to manipulate the spirit of the law for their personal financial gain.
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p; The confusion resulted from the ADA wording, for example:
Under Title III, no individual may be discriminated against on the basis of disability with regards to the full and equal enjoyment of the goods, services, facilities, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation. “Public accommodations” include most places of lodging (such as inns and hotels), recreation, transportation, education, and dining, along with stores, care providers, and places of public displays, among other things.
Under Title III of the ADA, all “new construction” (construction, modification, or alterations) after the effective date of the ADA must be fully compliant with the Americans With Disabilities Act Accessibility Guidelines.
Title III also applies to existing facilities. One of the definitions of “discrimination” under Title III of the ADA is a “failure to remove” architectural barriers in existing facilities. This means that even facilities that have not been modified or altered in any way after the ADA was passed still have obligations. The standard is whether “removing barriers” (typically defined as bringing a condition into compliance with the ADAAG) is “readily achievable,” defined as “easily accomplished without much difficulty or expense.”
The statutory definition of “readily achievable” calls for a balancing test between the cost of the proposed “fix” and the wherewithal of the business and/or owners of the business. Thus, what might be readily achievable for a sophisticated and financially capable corporation might not be readily achievable for a small or local business.
Five Years to Live Page 16