Thank you to Bob, Rebecca, Dyanna and Rick for your heartfelt words of wisdom and the time you took to reach out. You are brave, caring people that I am glad I'm getting to know better. Each of you have provided encouragement and advice that I am listening to.
"Change Your Brain Change Your Body" is playing in the background. I happened upon it while I was sending an e-mail to Rick. Yes, it's Telethon Time on PBS, again. I just mute that part. I'm not getting the whole program, but multitasking is a way of life for me. It all started when I was a very young child.
Imagine if you will, a young mother and father in a small, rural town. They are newly married and starting their lives. The father is the local high school Basketball coach. The mother has gotten a job at the local Welfare Office. They have a daughter.
These two beautiful people soon discover that their beloved first born who terrorized them with colic is growing into a dynamic though not outwardly beautiful child. She has a healthy, athletic body and a strong spirit, though. At this point in their daughter's life, she is still cute simply because her personality outweighs her outward appearance, most of the time.
Her raging tirades are beautifully met by her mother with a calmly stern, "Oh. That was dramatic" which infuriates the child, and also lets the child know that her mother is in charge which while infuriating her further does give her much needed boundaries.
For the child, life is good. She jumps on her parents' bed whenever she can, sleeps in the bathtub until the dripping faucet discourages her completely, uses her bedspread as a blanket, and slides down the stair rail to get downstairs instead of walking because she's discovered that her bedspread blankie rolls up in a ball and chases her when it goes down the stairs with her in the morning. She has a sandbox in her yard, and there are many kids in the neighborhood to play with.
One day, the little girl gets very sick. She gets so sick that she ends up in a hospital. She has a high fever and no diagnosis. The tests begin. She begins sleeping away from her parents for the first time in her life, and it's not fun. She barely remembers the nurses and doctors because of her fever, but she does know that there are these things called, "needles" that they put in her body to make her feel better. The needles hurt, and she is afraid; but she does start to feel better, so the needles stop coming so often.
At the same time that the daughter is in the hospital, her parents get word that Great-Grandma Dina has died. They make the decision to go to the funeral and leave their daughter in the trusted hands of the medical professionals for one day. One or both sit down with the daughter and explain what is going on. The daughter cries and cries because she loved her Great-Grandma, and she doesn't want to be left alone in the hospital with the needles. The nurses reassure the family that the daughter will be OK and well cared for. The daughter is left in the hospital and the parents go to Great-Grandma Dina's funeral. She puts on a brave face, and begins learning how to survive on her own; or so she sees it.
To her great joy, her parents return. To her even greater joy, the nurses tell her family that she is able to go home as long as she will let them give her a HUGE booster shot of penicillin. She agrees and waits for the needle to come.
When the needle gets to her room, she quickly changes her mind. It is bigger than any needle she's ever seen. She is convinced by the nurse that if it is given to her in her touche that it will not hurt as badly as if it is given in her arm. She turns to her mom, and tries to relax. The nurse gives her the shot. She cries and squeezes her mom's arm. Her dad waits helplessly. The deed is done, and the daughter discovers that she has a HUGE, painful bump where she got the shot. She cannot sit on her touche because of it. She gets over being mad about this indignity, and leaves after thanking the medical staff for their care. She experiences a lot of emotions all at the same time, but mostly she feels sad that her Great-Grandma is gone. Next to sad, she is glad to be escaping from the hospital and makes a vow that she will not return. She no longer completely trusts her parents, but they're OK. Besides, what else is she going to do?
As the years go on, the daughter spends lots of time in hospitals. She spends time in the hospital in Minnesota, Wisconsin, and Iowa. She gets fevers of 106 degrees in about 20 minutes, and nobody can figure out why. She spends about two weeks in the hospital each time she goes in. This goes on for five years with approximately three visits a year. She grows from a five year old to a ten year old.
The daughter is unaware of how the parents feel about this at first, but when her mom opens her hospital room door in Iowa, gasps, and turns away in tears; the daughter starts to see even though she's laying on an ice bed and is the equivalent of a human earthquake. The wear and tear on her body simply from shaking is exhausting her and making her mad and sad; yet she has no energy to get up. She can see her mom walk away, though; and the daughter is devastated. This is bad. This is very bad. It's worse than listening to her Grandma Corbin urge Grandpa Corbin to drive quickly but safely while they drove the 45 minutes to the hospital. It is worse than the blanket on the back seat to block the sun. It is worse than anything she's ever experienced with whatever is making her sick.
She lays alone in the bed crying and shaking and sees her dad open the door. She hears him say, "Hi."
"Hi," she whispers.
Her dad calls for her mom, then turns and walks to her bed. He sits beside her.
"Oh, this is cold! How're you doing?"
"I'm cold."
"I know, Honey, but it's making you feel better."
"I feel better. Can it go away, please," the daughter chatters back. The negotiations have begun.
"Let me get a nurse," her dad says while walking to the door. He calls for her mom again and waits.
The daughter sees her parents talk in the doorway. She sees her mom wipe away her tears and hug her dad. Her mom walks to her bed and sits down.
"Oh, this is cold," she says and pulls a chair up beside the bed.
Her mom doesn't sit in the chair, though. She stands beside her daughter, holding her hand, stroking her forehead and tells her how scared she was and how sorry she is. The words pour out soothing her daughter. The hands give healing strength to her daughter because she is using that same calm, yet stern voice telling her that she has to stay on the ice bed; and that, she can do it. With each stroke of her hand, the mother and daughter form a bond of strength and determination. The daughter takes a deep breath and imagines sucking up all the cold; so that, her fever will go away. Her mom holds her hand and starts to tell stories about the ten hour trip down to see her. Her mom tells her that she is loved. Together they wait for the dad to return with the nurse which he does very shortly. Unfortunately, the nurse says the daughter has to stay on the ice bed for a while longer.
"I bet my fever is gone," chatters the daughter.
"You could take her temperature," her dad suggests.
"That would be OK, right, Honey?" her mom asks.
"Uh huh," the daughter agrees.
"I'd have to take it in your bottom," the nurse says.
"Ok," the daughters responds and turns to her side.
The nurse takes her temperature and exclaims, "OH! Well, yes. We can take you off the ice bed now."
MISSION ACCOMPLISHED. Whew.
It's a whole new ballgame, now. It's more than her parents bringing her homework in the hospital and going off to work. It's more than watching game shows and soap operas while doing the homework. The illness that is still undiagnosed has gotten stronger.
"You really scared us, kid," her dad tells her as they wait for the staff to arrive to remove the ice bed, "Your mom thought you were dead."
"What!?" the daughter exclaims and looks at her mom, "I'm not going to die."
"I know, Honey," her mom lies. Her lie is very good, and the daughter has no clue it is a lie.
"Yeah. I'm hungry, too."
The ice bed is removed. The daughter gets better, and everybody is happy again until the next hospital stay.
After 4 1/2 years, a diagnosis is discovered through the use of lots of needles, humiliating tests, and too many catheterizations. The daughter has started school and continues to miss many days while maintaining an "A" average. She is accustomed to doing her homework by herself without the aid of a tutor. She does receive a bit of aid from her parents and an occasional nurse, doctor or staff member.
For the most part she is treated well. There are only two incidents where she isn't. In one case, she tattled on the nurse who threw her into bed and never saw her again. She thanks Dr. John for this many times over. The other incident is the result of a gigantic hissy fit resulting in four nuns and nurses holding her down while a nurse puts another catheter in her.
When she is told that a doctor has figured out what is wrong with her; and that, he can fix it through surgery: she is ready to go. Bring on the scalpels! She learns that her ureter valves aren't working properly. Because her ureter valves aren't closing, her urine can go back up into her kidneys. This is why she gets fevers. Her body is being poisoned by her urine. She takes it all in, repeats the new words, and assures the doctor that she understands that he is going to make her ureter valves work like they should. The doctor also tells her that he is going to give her a "bikini scar", so she can keep wearing the bikinis that she likes to wear in the summertime. This makes her happy and curious.
"How much is he going to cut me," the daughter wonders to herself, but she never asks because it really isn't all that important. She'd have this surgery if it meant that she was cut from stem to stern.
The night before surgery, the daughter can't sleep. Since she doesn't have an IV, she wanders the halls of the hospital wing. It is a dedicated children's wing with an activity room. It is late, but she turns on the light, finds some art supplies and starts a project. Soon she is discovered by a beautiful and kind nurse. The nurse doesn't tell her that she has to leave. The nurse just requests that the daughter be good. The nurse also asks the daughter to come and find her when she's ready to go to bed because the nurse would like to tuck her in. When the daughter finally goes to find the nurse, the nurse is washing thermometers.
"Hi," the nurse says, "Are you ready to go to bed?"
"No," the daughter responds.
"Well, that's OK," the nurse continues, "You can stay here with me. I've got to wash all these thermometers."
"I can help," the daughter offers.
"Thank you, but I have to do this. You can watch. There are many things to do to properly sterilize our thermometers.
The daughter stays by the nurse's side until she can stand no more. She feels safe and believes everything the beautiful, kind, big city nurse tells her about her upcoming surgery and the doctor who is going to perform it. The nurse tells her about all the people who will be in the room and what kinds of needles she can expect to get put in her body. The nurse reassures her that the first needle, the first shot called, "a hypo", will make getting all the other shots much easier. The daughter is relieved. The nurse explains that the daughter will go to sleep and will wake up after the surgery feeling like a minute has passed. The nurse tells her that she will have pain, but that there is medicine to make it go away or at least make it less. The daughter listens and listens. She starts to fall asleep standing beside the nurse. The nurse takes her to her bed, tucks her in, and stays even after someone comes to see why the thermometers aren't completely washed, yet.
"She's having surgery tomorrow," the nurse replies, "They'll get washed. I'm staying here for now."
The daughter falls asleep with a smile on her face. She is safe and secure. She is so happy she found the nurse or the nurse found her. She is ready to feel better.
The morning of the surgery, the daughter is awakened by the usual blood test lady. Following the blood test lady is the nurse who tucked her in.
"Good morning, Sunshine," the nurse says.
"Hi," the daughter responds.
"I've got to give you your penicillin before surgery," the nurse tells her.
"Ahhh," the daughter whines and sighs.
"So where do you want it?" the nurse asks while pulling up the arm of her hospital gown.
"Not in my arm!"
"OK. Where then? Your bottom?"
"No!"
"OK. Calm down. Where do you think it should go?"
The daughter takes a moment and looks at her body. Both arms are bruised from all the other penicillin shots. Her touche still hurts from the few she's received there. She sees her thighs.
"In the thigh."
"Oooo," the nurse says taking in a deep breath, "There are so many muscles there. You'll have to really relax, or it's going to hurt even worse than getting it in your arm."
"But my arms are all bruised and smaller than my thighs."
"You don't want it in your bottom?"
"No. That hurts now. I'm going to be laying down a lot 'cause of the surgery. AND you can't put it in my arm 'cause I don't like IV's and my hand goes numb 'cause I hang on to the board so the needle won't break off. I don't want that needle breaking off in my hand, you know."
"Oh, Honey," the nurse realizes, "The needle from the IV is plastic and won't break. You don't have to be afraid of that."
"Still. My arms are done."
"OK, so it's the thigh then."
"Yep."
"OK. Listen to me. Take a deep breath and let your leg go limp. Close your eyes. I'll let you know what I'm doing."
"No."
"What?"
"Don't tell me. I can tell."
"OK. You ready?"
The daughter takes a deep breath, closes her eyes and relaxes her body as she exhales. She holds up two fingers indicating to the nurse that she is going to do this two more times. The nurse gets it.
The nurse cleans the area of the thigh that she has picked to give the daughter the penicillin shot. She continues each action in slow, purposeful and calming motion. She doesn't say a word.
The daughter keeps breathing. She feels the alcohol swab. She feels the needle go in, and she doesn't flinch. She feels the burn of the penicillin and doesn't tense up, instead she feels her warm tears roll down her cheeks and tastes the salt as they land on her lips.
"There. All done. You were great! I really can't believe how well you did," the nurse says while wiping away the daughter's tears, "OK, the hypo is next. Where do you want that one?"
"What?!" the daughter exclaims, "Why didn't you give me that one first?"
"It doesn't matter..."
"It matters to me," the daughter interrupts.
"Hold it. The hypo takes 20 minutes to take affect. You needed the penicillin shot now, so ..."
"Oh. OK. Other thigh, please."
With the hypo given, the nurse strokes the daughter's head, tells her that she's going to be back to see her, and leaves. The daughter hears her parents outside her door and starts telling them about the World's Best Nurse before they even enter her room.
Soon there is a flurry of activity. The daughter is moved from her bed to the gurney. She says her good-byes to her parents. Her parents tell her that they will be waiting for her and see her when she's out of surgery. She is taken away with a view of the ceilings on many floors. She notices the different types of ceilings and tries to count tiles. It's all too fast. The constant chatter from the attendant is enjoyable, though. She laughs. She falls asleep.
When the daughter comes to, she is being held down by four nurses who are telling her to stop doing something. She is grouchy and in pain. She realizes that she has an IV in her left hand again. She also realizes that her right hand is being pulled away from her left hand. She hears her doctor's voice.
"Hey. What are you doing, Kiddo?" her doctor says to her.
She sees his face. He is smiling. He is telling the nurses to calm down. He's talking to her while her arms and legs are put in restraints.
"Shhhh," he says, "I know. I know. Pretty uncomfortable, huh."
The daughter cries and struggles against the restraints. She is confused and angry. This is not what the World's Best Nurse told her would happen. She hears her doctor say something about bringing something for her. She sees another needle.
"I hear you like your shots in your thigh. I hear you're very good at relaxing, so you can get the shot in your thigh. Tell you what. You relax, and we'll make the pain go away and take the restraints off. You just have to promise not to pull out your IV, OK?"
The daughter takes a deep breath and unconsciously tries move her right hand to wipe away her tears. The doctor wipes her tears for her.
"You ready?"
"Not yet," the daughter replies, "I need three."
"Three breaths, right?"
"Uh huh."
The daughter takes her breaths and closes her eyes. She is limp. She receives her shot and remains limp.
"I've never seen anything like it," one of the Recovery Room nurses says to the doctor and starts removing the restraints.
The doctor nods his head and turns to the girl, "You'll be good, now, right? I'm going to see your mom and dad to tell them that you're awake and doing very well. I'll see you later."
"Will my nurse be there?" the daughter asks.
"I'll make sure she is," the doctor says, checks her chart and leaves.
The daughter is soon joined by another woman; a black woman who starts talking to the daughter in a soothing, deep voice, "Child, you were puttin' up such a fuss. I've never seen anybody come out of anesthesia like that. You're a fighter, aren't cha. Yep. You're going to be OK. I just know it."
The daughter listens and watches the woman take over removing her restraints. The daughter thinks of Kaylynn. She cries.
"Hey. What's wrong with you? I'm taking off the restraints. You won't feel the pain soon. Come on, now. It will be OK," the woman reassures her while taking a moment to stroke her hair.
The daughter looks at the woman through her tears and tells her in the most earnest and heart-wrenching voice, "I have a black baby doll."
"You do?"
"Yeah. It was Kaylynn's," the daughter continues.
The daughter proceeds to pour her heart out to the woman about Kaylyn's baby doll, and how Kaylynn was her "real-life baby doll. She tells the woman about how she'll never see Kaylynn again, but she has her baby doll to remember her by because of Grandpa Austin. She tells her about how when she first got sick her Great-Grandma died. The daughter even tells her that her parents never appreciated the Beatles like she did; and that, they're stupid for that and not telling her Kaylynn was going to get adopted. The daughter goes on and on while the woman sits beside her and listens.
Occasionally, the woman tells one of her co-workers that the daughter is quite the little girl; that she has seen a lot of life already. Other people come over to hear the daughter tell her story. So many people come over to hear her talk. She makes people laugh. She receives their condolences. She tries to make them feel better. She agrees with them that everybody is equally important just like Grandpa Austin, her parents, and Martin Luther King, Jr. have always said. The daughter has so many of the Recovery Room staff listening to her that one of their bosses has to tell them to get back to work.
"Oops. I'm sorry," the daughter tells the workers as they return to their tasks.
"No. No need to apologize. Glad you're feeling better. You scared us at first. You keep fighting. Keep on telling your stories. You take care of yourself, now, too. You'll be OK. That surgery fixed you," they respond.
The woman stays at her side until it is time for the daughter to leave the Recovery Room.
"I sure am glad I met you," the woman tells the daughter as she's leaving.
"Me too," the daughter calls back, "Thank you."
Imagine what a day April 10, 1970 was for the daughter, her parents and so many others. It was a new beginning. It was the end of the illness that kept her away from so many friends and family.
The years spent in hospitals took their toll, though. Between the ages of five and ten, the daughter did live a lot of experiences. Drastic changes severed her bonds with her family to some degree. So much time in hospitals hampered her social skills with her peers. She learned fear, distrust and heartache. She also learned how very valuable good people are.
It would take years for her to just slightly overcome her fear of needles. It had much to do with simply growing up and telling people about her fears while advising them of the best way she knew of to get the results they needed. She learned the importance of being listened to and continued to speak her mind as calmly as possible. She wasn't afraid to let loose, though. She developed many, many tricks to help her survive her life.
Lying was just one of her tricks, but she became very good at it. She learned that the best lies were simple and could be convincing with a little bit of acting. She grew to love acting and lying equally.
She learned to tell all her darkest secrets and griefs to her black baby doll, clutching her to her chest as she cried and fell asleep. She still missed Kaylynn and Great-Grandma Dina, but she went on living knowing that she'd never see them again. She took very good care of Kaylynn's black baby doll.
She survived the taunts of the mean kids when they teased her about her under-bite. She withdrew and emerged and repeated the cycle several times. She did the same when they teased her about her mom and dad, too. She learned to keep her mouth shut most of the time about her life and the lives of her parents, or so she believed. Sometimes she just couldn't help herself, and she heard from her mom many years later that she didn't have friends calling her because she always talked about her family. She learned that even her parents could continue to make mistakes, and that forgiveness was difficult. She learned that she preferred to be on her own rather than be around anyone who was mean. She made a point of conveying this message to her parents verbally. She never quite got the hang of it with her friends. She just left their presence when they turned into mean kids. She learned that she was a loner.
She kept her bedspread blankies and decided that she'd part with them the day they disintegrated as long as she had a replacement blankie ready to go. She discovered where to find a suitable blankie for all her years to come, and even graduated to having two at once. She survived the days when her blankies were washed just like Linus did and often thought of having a jacket blankie created to wear everywhere she went. She decided that she'd rather have her blankie than any mean people in her life. The cool cotton soothed her throughout the years as she regained her composure and confidence just like she'd done with so many hospital blankets. Her blankies never did her wrong and served a very valuable purpose.
"So what's one silly vice and attachment," the daughter would often think to herself as she resolved to never let her parents or anyone else take her blankies away. She also decided that only special people could touch her blankies. Oh, and how she despised anyone who said a bad word about her blankies. She learned to take a stand about something that only she understood.
She learned to weather the storms of her emotions and deal with the many, many mistakes that she made. She learned to forgive not only her own mistakes, but the mistakes of others even when it broke her heart. She decided that she had some value in this life, so she'd muddle through as best as she could. She learned that she hated the terms, "victim" and "survivor", but couldn't honestly deny that she had been one and was the other. She had to repeat this lesson too many times as far as she was concerned. She became tired of it all and collapsed a few times. She rose again, true to her Scorpio Phoenix nature, a few times, too.
She maintained her love for The Beatles throughout her life and credited them with teaching her quite a bit about life, music, and art. She accepted them as her personal gurus, and was delighted to have them to tea every afternoon when she got home from school. She knew they appreciated a private place to gather even after their break-up, so she never told people about her wonderful tea parties until much later. It was the least she could do for her gurus.
She learned so much about so much that her mind was boggled at what to when she grew up. She learned to play, laugh and keep reading. She learned that there were few things so wonderful as reading Shakespeare with her friend, Gretchen, either on horseback or in the armored van. She learned that she could be very happy and very sad; and that, she could handle it all with "a little help from her friends." The daughter lived quite a life starting from an early age.
On occasion, she took time off to deal with it all. She always emerged stronger for the rest. Her retreats might be noticed or not, but she knew when she was withdrawing and did her best to focus on re-emerging in spirit if not physically. As time went on, she realized that she didn't trust people very much. She also realized that the people she loved the most could cut her to the core more than any others. She spent more time alone than she would've liked; and yet, she was content to be alone for the most part.
The daughter was rewarded for simply hanging on and living. Her mom and dad were rewarded, too. It would be many years before the daughter asked her mom and dad how they survived the years when they didn't have a diagnosis. She would compliment them for not making her aware of how scared they were. These conversations happened after the daughter had become a Mom.
The daughter was very, very grateful that her children were not as sick as she was, or so she thought until they did get very, very sick. When they did, she rose to the occasion as best as she could. She did OK. Her children survived.
The daughter also learned that sometimes with a bit of persistent effort, a person can change their world. She learned this when she received a three-page letter about Kaylynn that was supposed to be a two-page letter. That's right. The daughter got news of Kaylynn after living with the pain of not knowing where she was for over 35 years. While the letter told her that no help could be given, the letter included the one extra sheet of paper with enough information for the daughter to do a simple Yahoo People Search. The "Magical, Mystery Sheet" sent her on a "Magical, Mystery Tour" of her own that turned into a "Magical, Mystery Tour" for two - and more.
The daughter learned that she never, ever had to feel the pain she had lived with for so long. The pain of her loneliness was replaced with a gigantic, shit-eating grin and a warm glow that over-took her on so many occasions that she continued to hang on. There's something about finding her "real-life baby doll now sister" after so many years of grief.
The daughter continues to learn and hang on. It hasn't really gotten any easier, but the tricks are still there. All the wobbly confidence and determination is struggling to rally to the cause. With respect for her fragile state, the daughter has decided to try again. Just typing those words makes her sick to her stomach, but she knows that it is just time to eat something and move on to take care of the many tasks on her list.
