Lives are changed forever by an incurable disorder. |
Beep. Beep. Beep. Beep. The sound was steady, almost hypnotizing. It was also tangible evidence that her daughter was alive. Alive only by the grace of God and medical science, an arguable gift at best. Irene tightened her jaw against the wave of fresh pain, and focused instead on the regular whoosh, hisss of the ventilator that breathed for Jessica. Her fourteen-year-old daughter lay immobile in the hospital bed, with tubes, wires, and surgical tape covering nearly every visible inch of skin. Jessica’s face was nearly unrecognizable, puffy from medication and recent surgeries. Her head was bandaged, but the stent was clearly visible, although Irene would not look at it. The stent served a vital purpose, draining the life-threatening fluid that threatened to crush her daughter’s brain with pressure. Every time she looked, she could barely look away, and it became her focus, rather than her daughter, who should be her focus. She reached out and gently touched Jessica’s unbroken hand. “Hi there, Feather. It’s Mom. Grandma wants me to tell you hello, she loves you and misses you. And Aunt Ruth said to tell you Sarah is finally walking.” Irene paused to wipe her eyes with a tissue. “Your math teacher…I don’t remember his name….said to tell you that you got a 100% on the math assessment, just like you thought. Dr. Sorenson said the concert was great, but that they really missed your string bass in the Star Spangled Banner. Mr. Sherry came to visit, but your Dad wouldn’t let him in.” Irene stopped. Dave’s furious refusal to let the school vice-principal visit had caused a scene that normally would have embarrassed her. This time, though, she had welcomed the opportunity to be spiteful to a naysayer. It was bad of her, perhaps, but Rick Sherry’s absolute refusal to believe that Jessica had problems had led to this tragedy, at least in part. She remembered the first time they had tried to get help for Jessica, after years of horrible fights, unpredictable behavior, and finally, the out of control spending using old credit cards. It had been a nightmare to get Jessica to talk to a counselor, but when she finally did, there had been relief. For a time. At first, the counselor had thought she had Attention Deficit Disorder, like her sister. Then he thought maybe it was just anger management issues. Finally, he had succeeded in helping Jessica develop coping skills for stress, and it had helped a small measure. After two years of counseling, there had been progress, with some setbacks, but Jessica had felt she didn’t need to continue counseling. Irene had agreed, with Dave’s reluctant consent. The year that had followed had been challenging for Jessica. Her grades seesawed and she got into a fight with a girl who had been her best friend. She had been suspended from school for a day for the push and shove match. When the summer came, a Girl Scout camping trip had raised her spirits, and no more odd purchases had shown up to cause fights with Dave. Irene had breathed a sigh of relief when school started in the fall, because Jessica had found some new friends and seemed to be starting fresh. That hope was shattered in September, when Irene had come home from work and discovered her daughter had swallowed half a bottle of Sudafed® tablets. Normally harmless to anything but severe congestion, the twenty or thirty pills Jessica had ingested had put her at risk for heart failure from the ephedrine they contained. She had rushed her daughter to the hospital, where she had spent five hours watching her daughter’s heartbeat and pulse race and then slow down. The activated charcoal the ER doctors had given had solved the problem, and just as they got to go home, the entire mess had come up, giving Irene an unpleasant view of just how many pills her daughter had taken. She had driven home with instructions to see the hospital psychiatrist before her daughter could return to school. In fact, she had been told that the only condition under which they would release Jessica to her care was Irene’s assurance that they would see the doctor as soon as possible. She had driven home thanking God for her daughter’s safe return home. The visit to the psychiatrist had been a mixed blessing. Diagnosis: Bipolar Disorder, commonly known as Manic Depression. On the plus side, it was a relief to finally have the answer to the puzzle. It was treatable with medication and intermittent therapy. On the minus side, it was a lifelong mental illness. It was incurable, and hard to manage appropriately. The psychiatrist had warned Irene that she would have to monitor her daughter closely, that it was easy to miss some of the early warning signs of a mania, or to underestimate the depths of a depression. She and Dave had done their best to watch, but had made a crucial error. Unwilling to wake Jessica before six o’clock in the morning, they had relied on Jessica to take her morning dose of medicine. Two months later, the school guidance counselor had called her at work. Did you know that your daughter has been cutting her arms? Irene had been shocked speechless for a moment. Did she know?? Of course she hadn’t! If she had, she would never have sent Jessica to school that day. She rushed home after calling her husband, and picked Jessica up. They’d had a heart to heart talk, and Jessica vowed she wouldn’t do it ever again. She swore she had only tried it because “all her friends” had done it. Honest, Mom, I wasn’t trying to kill myself. It’s just that everyone else does it, and they all say that it makes you feel better. I just kind of started, and then I couldn’t stop. It didn’t really hurt, not when I did it. She had also learned that Jessica hadn’t been taking her morning medication. I just kept forgetting, Mom. And I really don’t need it. Anyway, I think I’m doing OK without it.{i/} Unwilling to see their daughter committed to a psychiatric ward, Irene and Dave had hoped that Jessica had learned a valuable lesson. Indeed, they saw no evidence of cutting for a while, and her mood swings seemed to have stabilized. Then came the night when their oldest, Mary, had approached them. Ummm…I know Jessica will be mad, but I caught her with this…she was cutting herself… Mary had held out a kitchen knife with trembling fingers. They had called the psychiatrist then. Dr. Davis had seen her the next day, and recommended immediate hospitalization in the psychiatric ward. It had been the hardest week of their lives. Mary had been in tears that day, feeling responsible for Jessica being parted from the family. Irene had no idea what to expect, but the signs on the door of ward 4-West were clear: Keep door secure. Elopement risk. Mary had asked what that meant. Why would they worry about people running off to get married? Irene had explained that elopement was running away, not getting married. She had stared at the door, with its covered window and black phone for entry, and shivered. Jessica in there for a whole week? The week had passed by, and the whole family had rallied for Jessica. Her aunts and uncles had visited, and her grandparents. Of course, Irene, Dave, and Mary had visited every night, and Jessica had made several friends. Through her therapy, she had learned to cope with her depression, and to recognize her triggers for cutting. She had also learned how to redirect her thoughts. After she was released, it seemed to be better. Dr. Davis had put her on an anti-depressant along with the mood stabilizer she had been taking before, and it seemed to be working. Irene had to make sure Jessica got her morning dose, and Dave handled the evening dose. It meant pushing the window for getting to work on time, but it was worth it. Jessica seemed to settle into a stable pattern, her outbursts getting rarer and rarer. Irene had read as much as she could find on bipolar disorders. It was a controversial diagnosis: many people absolutely refused to believe it existed, or that it could exist in non-adults. This attitude had puzzled Irene, but not really alarmed her. She chalked it up to ignorance, either willful or uneducated. She now understood that the uncontrolled buying Jessica had done was the manic phase of her illness, and she and Dave destroyed all the old credit cards, and made certain their current ones were unreachable. They shredded all of the statements as they came in. They were sure this wouldn’t be a problem. What Irene worried about was the depressive phase. There were several statistics that had alarmed her. She’d read that in the depression, her daughter was apt to find her problems too weighty to manage, and she might hear things that weren’t there. Irene felt this was the biggest danger. The reading material she had found had all stressed the high suicide rate from people who suffered from bipolar disorder. The biggest stumbling block became school. One side effect of the medication was drowsiness, and Jessica started sleeping through her alarm. She was regularly late or absent from school, and the vice-principal, Mr. Sherry, had taken a firm stance. He was nice, but he seemed unwilling or unable to understand that Jessica suffered from a severe mental illness. Jessica’s guidance counselor and the school nurse had both tried to get him to understand, but he just didn’t seem to get it. Jessica’s depression seesawed through the remainder of the school year, and as the year drew to a close, she finally seemed to perk up. She became animated, looking forward to the end of the school year, and the class formal. Jessica was moving on to high school in the fall, and couldn’t wait to become the band’s “pet freshman”. Mary had already declared that Jessica just HAD to join the band, not the orchestra. Since the diagnosis, Mary had made a concerted effort to understand and support her little sister. They had become best friends for the first time in their lives. Jessica was reveling in all the attention, and was helping to plan her sister’s big sixteenth birthday party. Everything was going her way. Her teachers had made a concentrated effort to help her pass, she had bought her dress for the formal, complete with all accessories, and she was going to be in a concert with the county youth orchestra the day after the formal. Her excitement had all seemed perfectly natural. The night of the formal, she had been bubbly and vivacious, excited to be going. She had convinced one of her best friends to go, and she was practically dancing in the car on the way to the school. With a jaunty wave and a quick “Bye Mom! Love ya!” she had dashed over to where her friend stood. She had looked like some sort of sprite or fairy, white chiffon over a sky-blue sundress, curly hair in a high ponytail. Beepbeep. Beepbeep. Beep. Beep. Quick, arrhythmic shudders of Jessica’s heartbeat interrupted Irene’s memories. Looking at the monitor, she could see the sudden spike of irregular beats marring the steady rhythm from earlier. One of the machines attached to Jessica started to chime, its high, clear pitch out of place against the steady whoosh, hisss of the room. A nurse rushed in, checked the monitor, and then rushed out again, making a beeline for the nurse’s station right across the hall. She could hear the drone of a rapid consultation, and then the quick tap-tap-tap of fingers on a phone. She assumed they were calling Jessica’s doctors, the neurologist and the surgeon who had worked so hard to put her daughter back together. Like all the king’s horses and all the king’s men who tried to put Humpty-Dumpty back together, they hadn’t succeeded. All they had accomplished was to put together this shell that breathed through machines and wouldn’t wake up and tell her mother it was all a bad dream. Bye Mom! Love ya! She had heard the sirens, of course. They only lived a mile from the school. When the shrill whine of the emergency vehicles pierced the night, she and Dave had assumed that some idiot teenager had been racing along the roads out behind their house. It was a common occurrence. Mary had been worried, though. I hope Jessica’s OK. They had reassured her. Jessica was safe at school, and it didn’t seem possible that her life would be in jeopardy. Then the phone rang. Startled, heart pounding, Irene had watched Dave answer the phone. She thought she might faint when she saw his face go pale. She nearly did when he collapsed to his knees, huge tears rolling down his face. He handed the phone to her, unable to speak, and covered his face. Hello? Mrs. Parkman? This is Officer Martindale, with the police. She had felt the blood pounding in her head, and had fought to keep control of her emotions. Jessica was hurt, she knew. Mrs. Parkman? We need you and your husband to meet us at the hospital. Your daughter’s been badly hurt. We’re sending a patrol car over to escort you. The drive to the hospital had been surreal. Following the speeding police car with its red and blue lights flashing, siren wailing, had been an experience she would never forget. When they had reached the hospital, they had been met by a doctor and a priest, and Irene had been afraid her daughter was dead. She was not, although she was only barely alive. As she listened to the doctor bravely trying to give her the extent of her daughter’s injuries, she’d blurted out one question. What happened?? The doctor had stopped, then. He was obviously unsure what to say. I don’t really know, ma’am. All I can tell you is she took a very, very bad fall. I was told she fell from the roof of the school. Fell from the roof of the school. The words had echoed in her head. Her daughter’s injuries were catastrophic. She had a fractured skull, a fractured spine, ruptured internal organs, and broken limbs. The surgeons had done their best to repair the damage in the initial surgery, but she would need several more, if she lived. If she lived. The words had become trapped in Irene’s mind. Over the next few days, the story came out from the terrified kids who had witnessed it. Jessica hadn’t fallen, she had tried to fly. She had told her friends that she felt so spectacular; she just knew nothing would go wrong. She had laughingly boasted that she just knew she could fly. When a group of boys derided her boast, she had grown angry, and insisted on proving it. With her friends protesting, but afraid to physically stop her, she had climbed a maintenance ladder to the roof. Beverly, the girl she had struggled to convince to go to the dance, had run tearfully in search of an adult. The first one she had found had been Rick Sherry, who had come on the run, realizing that perhaps his troublesome student really did have a problem. He had arrived in time to see Jessica vault herself into the air, screaming joyfully that she really could fly! The horrified crowd of children below had been witness to her devastating impact on the concrete below. Jessica’s fingers twitched suddenly, and Irene smoothed the delicate skin over the back of her daughter’s hand. “It’s OK, baby. Mom’s here. Don’t worry. I’ve got you” The words came automatically to Irene, as though they were at home, and Jessica was only having a bad dream. She felt a hand on her shoulder, and knew that Dave had come in to stand beside her. He hadn’t spoken at all since the last surgery. When the neurologist had told them Jessica was in a coma, and was unlikely to wake up, he had turned and walked away. He hadn’t said anything to anyone since then, and barely ate or slept. He had lost weight, and his face was darkly shadowed with grief. A smaller hand touched her other shoulder, and she realized Mary had come in as well. Irene’s heart, already grieving for her youngest daughter, was wounded again every time she looked at Mary. Her oldest daughter had gone gaunt, every bone, every joint, in stark relief against her skin. She had been unable to get Mary to eat at all. Mary still talked, but only to the dogs and to Jessica’s cat. The house had become empty of human contact and conversation, and the void left by Jessica’s fiery personality was painfully obvious. Beepbeep. Beepbeepbeep. Beep. Beepbeep. Again, the erratic noise of Jessica’s heartbeat overwhelmed her. Even more irregular, as though she was still struggling to fly. Maybe she was. Maybe she was trying to fly from her body, so badly damaged by the fall. Maybe she was trying to fly away from her mind, which had been unable to cope with its divided nature. More nurses rushed in, accompanied by the doctor. The small ICU room became a controlled chaos, and Irene, Dave, and Mary were politely but firmly edged out the door. Irene could still hear the erratic beeping of the machines, insistently announcing Jessica’s heartbeat to anyone in hearing range, even over the now urgent shouts of the ICU staff. Beepbeep. Beepbeep. Beep. Beep. Beep. Bee…. The sudden silence was deafening for its split second existence, and then the steady drone of the machine induced a further frenzy by the doctor and nurses. Eeeeeeeeeeee……… The tone didn’t change, even with the renewed efforts of the staff. Finally the machine was turned off, though the ventilator still whooshed. In a moment, even that was still. The nurses filed out, all but one, who quietly straightened the bed and Jessica’s clothing. The doctor turned and looked at them. “I’m sorry.” There wasn’t more to say. He had been the one who had let them know how traumatic Jessica’s injuries were. He understood that nothing he could say would ease the pain. He touched their shoulders in passing as he left the room. The nurse followed, leaving them to stand beside their daughter’s bed. They stood in silence for a few moments, and then Irene pulled her chair back up to the bed. Taking Jessica’s hand in hers once again, she stroked it softly. “It’s OK, baby. Momma’s here.” |