Tag: Family

Baby Goes to Boston

~ Linda Wright
It is standard practice for doctors and hospital staff to ask questions. From dentists to phlebotomists each new encounter brings the inquiries:
 
“How did they discover that you had a bleeding disorder?”
 
“How old were you when your bleeding disorder was diagnosed?”
 
“Were you born with the bleeding disorder?”
 
The questions rarely vary and neither do the answers I give. I try not to answer mechanically, understanding that the medical professional in front of me has never seen someone with my condition. What I have is rare, a one in a million chance.
There was no evidence at my birth that I had a bleeding disorder. The family physician identified there was something wrong when I was still a baby. Each time I received an immunization shot, I developed a large bruise. At first, the doctor apologized for the bruises caused by the injections. Later, he began to recognize that my bruises indicated am underlying problem. I am sure that this was simply confirmation for what my mother already knew. The elderly doctor seemed like a physician from an earlier century. He still made house calls carrying his large black leather bag filled with stethoscope, small surgical tools and many bottles of assorted pills. His office was a room on the first floor of his home. He was wise enough to know that he could not make a diagnosis of my problems himself, but he did know who could. He recommended we go to Boston and see Dr. William Dameshek.
Dr. William Dameshek
My parents did not yet own a car and my father could not afford to take a day off from work. It was a half-day journey to Boston on the train. Because of the familiar nursery rhyme my father had read to me so many times, “Baby Goes to Boston,” I was happy to go on the trip. Mom had packed a lunch for us and the Raggedy Anne doll she had hand sewn. For me it was a grand adventure.
 
My parents were thirty-six years old the year I was born.  Mom and Dad had been married for ten years by then. Life was hard in those post- World War II days. My parents were renting a cold-water apartment on the second floor of a three-story tenement. The gray stucco building had an exterior staircase. Mom cleaned when she was anxious. She scrubbed the kitchen floor on her hands and knees in the chilly, walk-up apartment as she worried about how the bills would be paid. My father took the bus to work, carrying his lunch in a tin pail. He did his share of worrying too.
 
On the day we took the train to Boston, my mother carried the cash that was required to see this world famous specialist. My father’s health insurance plan covered only hospitalizations, not doctor’s appointments. The money was more than a month’s pay for my father.
 
That day there were no answers. First, Dr. Dameshek ordered some blood samples to be drawn. He interviewed my mother about our families’ medical history. Then he performed a physical examination and talked directly to me. His white lab coat was meticulously clean and crisp. From the first, I liked this man with the round face and relaxed smile.
 
A week or two later a letter arrived from Dr. Dameshek. He had determined that I had congenital afibrinogenemia. Over the next few years, Dr. Dameshek followed my progress carefully. My mother and I made routine train trips to Boston four times each year. Each time he greeted me enthusiastically, as if I was his guest, not his patient. He never missed an opportunity to teach me something. His explanations were clear and simple while remaining accurate. He beamed when, at three years old, I could say congenital afibrinogenemia. “Knowledge will save your life,” he said with pride.

How long have you had hemophilia?

~ Linda Wright

My friend Bill and I used to joke about the questions health care providers asked us. Bill had Hemophilia B, a factor IX deficiency. Although our bleeding disorders were different, our experiences with doctors had been much the same. Medical professionals rarely wrote our answers down or consulted our previous medical records for information. Not surprising to us the questions didn’t make any improvement in our medical care. What was startling though was how the questions we had been asked so routinely were identical. By the time we were in our twenties we had answered the same questions countless times. More than once I had been asked. “How long have you had congenital afibrinogenemia?” I felt as if I should carry a dictionary with me and open it up to congenital: adjective (esp. of a disease or physical abnormality) present from birth.

Often two or three different doctors would ask the same questions in one day. Once the doctor had finished asking his or her questions, they showed little or no interest in us. It felt like we were rare birds in a zoo, not people who had gone to a hospital for treatment. It took years for us to understand that we were viewed as subjects for research. We were offering a short cut for doctors who didn’t want to use the medical library.

Bill started responding with “Are the answers to your questions going to help you treat me or are you asking me because you need to learn?” He didn’t say this with a sarcastic tone of voice; he simply wanted the inquisitive doctor to be honest.

Like many people we wanted to be of help in educating doctors. We weren’t acknowledged for providing a service; instead we were expected to respond to questions that seemed irrelevant, even foolish, before we could receive medical attention. It seemed as if the priorities were upside down.

 
 

Do No Harm

~ Linda Wright
When I need medical treatment, I go to a hospital. Once they save my life, I get out before they kill me. I have been doing this since my first hospital admission.
 
I do not actually remember the experience; I was less than two years old at the time. My parents told and retold the details so often it feels as if I can remember that day.
 
When my father told the story it was with pride. It was like the story Dad told about purchasing one guaranteed-to-be-spill-proof baby dish after another, only to watch me overcome the newest foil. He seemed pleased by his daughter’s ability to solve problems. He saw it as a sign of intelligence. I have no memory of ever sitting in a highchair spilling pureed vegetables onto the floor for entertainment.
 
When my mother told the story of my first hospitalization it was tainted with remorse.
 
When I tell the story, the lesson is about the failure of hospitals to live up to the Hippocratic oath.
 
This is my version. As a toddler, I loved taking a bath. The Ivory soap floating on the surface of the water was like a wonderful toy. It had a pungent smell and it made bubbles as my mother lathered my hair. I wiggled as she scrubbed my back with the washcloth. But one night, I slipped and hit the bridge of my nose on the edge of the porcelain bathtub. It seemed unimportant at first.
 
By the next morning, a deep blue sac appeared under my tongue. It hurt when I tried to eat or drink. My mother was already aware that I bruised easily, although I had not yet been diagnosed with a bleeding disorder.
 
The Emergency Room physician put his fingers on the pressure points under my chin and squeezed hard. My mother protested and he threatened to have her removed from the room. The technique did not work. Instead of stopping the internal bleeding, it created red welts around my tiny neck. If the doctor regretted accusing the terrified woman facing him of being a “hysterical mother,” he never said.
 
I received a whole blood transfusion and was admitted to the pediatric ward for observation. The charge nurse assured my mother that the hospital crib would confine even an energetic child. If the nurse felt sorry for ignoring my mother’s misgivings, she never said.
 
Visiting hours ended. By the time my mother reached the elevator door, she turned to see me tottering down the hallway behind her. I had climbed to the top of the metal bars and shimmied down to the polished linoleum floor below. I wanted to go home… before they killed me.

Shoe Laces

~ Linda Wright ~ 3 Comments

A long time ago, I was born with a very rare bleeding disorder. Actually, I bleed just fine. My clotting is disabled. To be more specific, my blood does not clot at all without a transfusion of the clotting factor that my body does not produce on it’s own. It seems appropriate to me to use the term “disorder.” Living with a bleeding disorder can topple my to-do plans into chaotic debris at the most unexpected times.

It’s not like the fairly tale “The Princess and the Pea” or the phrase that has been spoken to me so many times in an anxious tone, “does that mean you could bleed to death from a small cut?” No, it does not and no, it is not about a softer mattress. It means that shoelaces can be hazards to my health.

Recently, I spent the better part of one day in a hospital being infused with clotting factor to stop a bruise that was swelling at the top of my foot. “How did this happen?” the doctor asked. As I feel my shoulders droop and my eyes focus on my own knees, it seems I have taken on the body language of the three-year old still inside me. I mutter, “I laced my shoes too tightly.”

More often than not, it is the kind of accident that would have no noticeable impact for someone with the ability to clot. Like the accident that happened to me in a parking lot, on my way to my annual mammogram appointment. On that occasion, my right arm met the side-view mirror of a parked car. On the side-view mirror it says, “Objects in mirror appear closer than they really are,” and this mirror itself was closer to me than I expected.

Because of my bleeding disorder, this type of accident can transform my plans for several days and even weeks. This one refocused my attention almost immediately. The bruise, between my wrist and elbow, was noticeable within minutes. It swelled and grew as I fretted about my options. The technician in radiology could provide no ice pack for temporary relief. Even after all these years, it’s hard to switch plans, like the ones I had made for the remainder of that weekend.

I’ve learned not to listen to the mother‘s voice that I internalized long ago. I still hear her voice saying, “What did you do?” Those words sound accusatory to me, as if I had inflicted the pain on myself through my carelessness or stupidity. Mom meant well, though, and her training about how to be attentive has minimized my injuries. It still crosses my mind that if I hadn’t been in a hurry to get to the appointment on time… if I just hadn’t been so preoccupied with having a mammogram, it would not have happened. After all, I did not get a bruise from the mammogram itself, which sometimes happens. So, why can’t I just listen to Bobby McFerrin’s voice singing in my head? “Don’t Worry, Be Happy.”

“What happened to you?” I imagine people asking me in the next three to four weeks as the bruise enlarges, spreads and then fades away slowly. “Oh, I got into a fender bender with a parked vehicle and my arm was damaged, but the car is fine.”

Not Ivy

~ Linda Wright

“Ivy had hands just like yours,” my mother said as I struggled to practice my piano lesson. “Her fingers didn’t reach a full octave either, but it didn’t stop her from playing the piano.”

It made me want to scream, “I am not Ivy.”

Ivy spent every weekend doing the laundry and cooking for her brother Byron and their mother. As far as anyone knew, she had made no friends in Kentville and had never been smitten by love. After her mother died in 1959, Ivy continued to spend her days off from work with Byron at the farmhouse.

On a Sunday night in late June of 1962 Ivy died in a car accident. She was driving back to her apartment in Kentville from her weekend at the farmhouse. The Royal Canadian Mounted Police (RCMP) notified Byron who sat alone in the dark until morning before calling his brother Guy. The telephone tree was started from one sibling to the next. “I can’t believe it,” my mother said as she hung up from the call she received that morning. Even though she was forty-four years old, they still considered Ivy the baby of their family. She had been the last to be born and now she was the first to die. Those who had moved out of Nova Scotia caught flights from Toronto, Montreal and Boston. They had not been together since their mother had died three years earlier.

When some of Ivy’s brothers and sisters met with the RCMP to hear the report of what had caused the accident, they learned an intoxicated driver had tried to pass her car. Ivy slowed down to let him pass. The driver saw an oncoming car and swerved to get back into the space he had just left. He didn’t notice that the car he had attempted to pass was not where it had been before. He knocked Ivy’s car off the road. Trying to do the other driver a favor, she lost her life.

As mourners came to her funeral I heard people saying, “She was so loyal to the family homestead.”

“She took care of her mother and her brother and never thought about herself.”

My mother’s grief was complicated by regret. Ivy was four years younger than my mother and Mom felt closer to her than her older sisters. However, a disagreement the last time they had seen each other had ended in angry words.

After Ivy’s death, when my mother compared me to Ivy it made me feel like spiders were crawling up my back. On my birthdays Mom began commenting, “If Ivy was still alive it would be her birthday this week too.”

On a chilly autumn night in 1993, I had left work about ten p.m.. I was tired, having worked since early that morning. I was enjoying the 45 minutes of quiet in my car. The traffic was light as compared to the usual rush hour times of day. I had traveled this route daily. The straight, well-lit highway required little thought or concentration.

The harvest moon seemed to smile down on me from a cloudless sky. When I lowered my eyes back to the road I spotted a skunk meandering across the highway in the path of my car. The slow-moving skunk seemed out for a relaxing stroll. Without thinking, I jerked the steering wheel to the left in an attempt to avoid crushing the critter. Instantly I realized my car was now heading toward the median strip, and the oncoming vehicles on the other side. I yanked the wheel of the car, this time to the right, and slammed my foot on the brake. This action sent the car out of my control. I was forty-four years old. My first thought was “I’m going to die just like Ivy.”

In a heartbeat, I hit the curb on the right. The car flipped over as I gripped the wheel in disbelief. In a few brief seconds, it was over. My car toppled upside down, and landed right side up in a strip of grass between an exit and an entrance ramp. I stared at the tree, just inches in front of my car.

I unbuckled my seat belt and stepped out to see a beautiful night sky filled with glowing planets and blinking stars. I averted my eyes from the crumpled car beside me. In minutes a State Police trouper came to investigate. A truck driver who witnessed the accident had reported it. The trouper asked, “Did you fall asleep at the wheel?”

I responded, “No, I was awake for the whole thing.” I wanted to laugh or maybe cry. Adrenalin was still making my heart pump faster than usual. I was alive and I could feel giggle bubbles rising in my chest. I wanted to shout, “I’m not dead!” The police trouper looked like a no nonsense kind of person and I decided to suppress my joy for the moment.

“We’ll get your car towed and I’ll drive you to the station where you can call someone to pick you up,” he said. I could see him watching me walk as he led me to the cruiser. I was still a little dizzy and wondered if the car had rolled over more than once. My knees were weak but I had no trouble getting into the cruiser. I babbled about the skunk and how I hadn’t wanted to hit it. He glanced at me in his rear view mirror and said, “Next time, hit the skunk.”

When we got to the State Police barracks I realized that my first call should be to my doctor. As a person with a bleeding disorder I could not believe that I had escaped with no injuries. My hematologist was on call. He listened and then said, “I want you to put the phone down and feel all over your head for any sore spots.” I looked around at the police officers behind the desk and heaved a sigh. This I thought would cause the officers to question my sanity. I did as the doctor requested. I ran my fingers across my face and massaged my scalp. “No soreness,” I said, picking up the phone again.

“Good,” he said, “but I want you to come to the hospital anyway.” Like me he was doubtful that I had escaped with no internal injury.

Next, I called my spouse, Robin. “Would you come get me?” I said, trying to keep my voice as calm as possible. “I’m at the State Police Barracks. I’m fine. I’ll tell you the story when you get here.”

After examination in the hospital it was determined that I was unhurt. Back at home as I drifted off to sleep, I thought for one last time, “I am not Ivy.”