Author: Linda Wright

Linda Wright, author of "My Turn: When Caregiving Roles Reverse," now lives in Florida. She has served on the boards of organizations serving people with rare, genetic bleeding disorders like hers. As a writer, she has contributed to several anthologies and is a member of the Tallahassee Writers Association. Linda is married to the Reverend Ms. Robin Gray.

The Faces of Hemophilia

~ Linda Wright
I celebrated my 62nd birthday a few weeks ago. At two years old, I was diagnosed with a rare bleeding disorder, congenital afibrinogenemia or Factor I deficiency. In addition to having blood that does not clot, I have battled attitudinal barriers all of my life.
 
When I was young, and people were told of my medical disorder, it often triggered a fear response. “Does that mean you will bleed to death, if you cut yourself?” It didn’t take me long to notice that some adults were overly concerned for my safety, while others were simply afraid to be around me.
 
In the fairy tale story of the Princess and the Pea, the real princess was so sensitive she could feel a single pea on a bedstead piled with twenty feather mattresses on top of it. I always felt I had something in common with her. Not that I claimed to be a real princess, but because the smallest object could leave a painful mark on my body. The little girl in that story, however, lost a good night’s sleep and gained a Prince; I lost being allowed to participate in sports and received odd stares and nosey questions day after day.
 
“What did you do to get that bruise?” or “Why are you limping today?” people would ask. If I explained that I did not know what caused the injury, the questioner’s faces would show disbelief.  If I had no visible bruises I would hear how cute I was, or how smart. When my disorder was apparent in bruises or limping, the disability was all that most people saw when they looked at me. The other parts of me became invisible.
 
At eight years old, a doctor told my mother I would not live past ten. At twelve years of age an orthopedic surgeon told me that I did not have a bleeding disorder and he could replace my damaged ankle joints without factor replacement therapy. When I was sixteen a medical technician told me that people with severe bleeding disorders did not live longer than twenty. None of those opinions were true.
 
Those who fear me have distorted my self-image; medical judgments have threatened to contaminate my view of what I could achieve. Still I have believed in myself. I treasure the benefits of living in the moment. I am proud to be a woman with a bleeding disorder, a retired librarian, a writer of creative non-fiction and coach for other women with bleeding disorders who want to write their own stories.
 
Most of all however, I long for a day when I, and other people with bleeding disorders, are seen as people first.

Itsy Bitsy Spider

~ Linda Wright ~ 1 Comment
I tossed my bathing suit and towel bag into the back seat of the car, feeling refreshed and energetic after my morning in the physical therapy pool. In my mind, I was sorting out the day’s to-do list: grocery store, dry cleaners, and committee meeting in the evening. I barely noticed that when I opened the car door, it hit my left arm.
 
“Don’t even ask where I got it, let’s just say it was another automobile accident with a car that was not moving at the time.” I wrote to my cousin Barbara. “The bruise is deep and it took 3 full days to show purple on the surface. Then, I went into four days of denial, so I didn’t call the doctor for a full seven days.”
 
My cousin Barbara says she is going to start calling me “Cleopatra, Queen of Denial.” Denial is my favorite coping mechanism! Like most coping mechanisms it is not effective in the long term. Once I came back to my senses and could see the bruise without judging it or myself, I was able to admit that I needed to pay attention.
 
It is the refusal to let go of my ego that causes suffering, not the bruise. It is letting go of the plans I made, the expectations I have of my life and myself. Like the unsuspecting insect stuck on a spider web filament, I struggle to free myself from my entanglement.  The spider knows I’m there. It watches and smiles and waits until I am exhausted.
 
The bruise wraps around the upper left arm almost from shoulder to below the elbow. After two infusions of cryoprecipitate, it is now in that motley fading-out period and looks like a very large multi-colored tattoo. It doesn’t hurt anymore, unless I use the arm muscle.
 
I could learn a lot about mindfulness from that eight-legged crawly.

Fear of crying

~ Linda Wright
My roommate, April, had been throwing up and in distress by the pain. Earlier in the day, she had her appendix removed. Her parents and the doctor told her she would be fine. She was still groggy from the anesthesia when she realized she most certainly was not fine. I left the room to go to the nurse’s station, since I knew that pushing the call button by the bed usually yielded no response. The nurse reluctantly got up from the chair and sauntered off to check on April. It made me feel better to be of use to the novice patient. Besides, I was eleven at the time and felt very grown-up.
 
After accomplishing my mission, I wandered into the day room of the hospital, dragging the IV pole and trying to protect some dignity despite the hospital robe and floppy slippers. After 8:00 at night, all visitors had left and the brightest lights turned out in the hope that some would sleep.
 
Even the children who were my age or older had never been in a hospital before. For me it had become routine; I felt almost as comfortable in the dayroom as I did in my family’s living room. Long ago I had learned where they kept the graham crackers, milk and Jello snacks on the ward. I could help myself without troubling a busy nurse. I had also picked up the language spoken in hospitals, the cultural cues of what was acceptable behavior, and what was taboo.
 
The tropical fish tank gave a soft glow to the room and the lights of the city were visible from the large glass windows. I was glad for a little quiet time by myself and so I sat with my legs curled under me on a chair thinking about what I would do once I was released and home again. A
young man in a white lab coat, probably an intern, came in and sat in a chair. He didn’t seem to notice me; his eyes went directly to the fish circling slowly in the water. Whether it was perception or projection, I will never know, but I sensed that the young man was deeply sad. He sat and watched the fish for what seemed like a very long time. His shoulders drooped; I was afraid he was about to break one of those unwritten rules. I watched him intently, just as he was watching the fish, thinking about how odd it was to see a doctor looking hopeless. In my experience the staff of the hospital were all business, some did their jobs quickly, some were slow to react, some were comforting and good about explaining things but they never ever showed their own feelings.
 
More amazing to me is that on the few occasions when I have cried a nurse has leapt to my side offering medications to calm me or a Chaplain to bolster my faith when a simple “There, there” and a tissue would have been more appropriate. I doubt that the medical system would be weakened if crying was permitted. Who knows it might be healthier for us all.

How can I keep from singing!

~ Linda Wright ~ 4 Comments
The piano came crashing down onto the cement floor of the basement. One of the movers had let go of the rope when the piano was halfway between the hatchway and the cellar. Nonetheless the piano survived. The movers picked it up and set it against a concrete wall where it sat comfortably for many years.
 
The piano had belonged to my grandmother; the grandmother I never met. She died when my father was still a young boy and he remembered how she used to sit at the piano and play in the evening. Deep within the belly of that piano, I believed, was the soul of my grandmother, gentle, compassionate and harmonious.
 
Mellow and rich sounds responded to the touch of my fingers and I spun the round piano bench until it was the right height for my eight-year-old legs, stretching to reach the keys. I ached to learn how to make music on it.
 
When my father played the piano, he only used the black keys between the whole notes. It was fun to watch like a magic trick and it amused my friends, but I knew it wasn’t the way one was supposed to play a piano.
 
Piano lessons were expensive and my mother threatened me that if I did not practice faithfully the lessons would end. I played the scales over and over again, learning to read the notes on the printed book propped up and resting on the tilted music stand. Plunk, plunk, plunk, I hit note after note; my fingers held in the stiff posture, parallel to the key board and flexing only at the knuckle. It was not joyful, or rewarding, and it seemed to have little to do with making music.
 
I was ashamed that the four-year old girl, who lived next door, could pick out any tune she had heard with accuracy, using impeccable chords and rhythms. Day after day she proved that my problem was my own, not a flaw in the piano.
 
It was harsh to compare my piano ability to another’s, and it eroded my self-confidence. Eventually it led me to give up on the piano lessons. I thought of myself as unmusical. I carried this image into adulthood. At church when I could hear my voice bleat a missed note, I sang with less and less confidence.
 
So, a few months ago when a friend told me that she was taking singing lessons, I thought I might give myself another chance. If my grandmother’s piano could survive a plunge I mused, perhaps I can too. I’ve only had two lessons so far, and I am expanding my range, both in my voice and in my spirit. 

Trusting My Gut Feeling

~ Linda Wright

In late January of 2000 I was hospitalized for an extended period of time with a perforated large intestine. Diverticulitis had silently crept up without a warning. My internal organs were contaminated with infectious matter. Not a pretty thought. The doctor walked into my hospital room and grimly declared that the bleeding had been stopped, but without surgery to implant a temporary colostomy, the infection would not go away.

I know that given enough clotting factor for a long enough time, I can survive surgery. There was an inner voice, however, that disagreed with the gloomy predictions of my doctor.

“I’ll be fine, just let me rest.”

“No you won’t,” the doctor continued to argue.

“Look,” I said, “it’s my body.”

With that, he left with what sounded like a threat, “I’ll send the surgeon in to talk with you.”

The conversation with the surgeon didn’t persuade me to change my mind. In the coming days antibiotics, nourishment and clotting factor were all dripped into my veins. Each morning, when I awoke I would meditate; focusing on my breathing and listening to my body.

The surgeon would appear at my door. He would nod his head in acknowledgement, and I would return his greeting with a wave.

“Vulture looking for fresh carrion,” I commented to the nurse who had just come to switch my saline drip to the antibiotic.

She laughed. “He’s at the age where he needs a challenge,” she whispered. “You know most cases look routine to him. You don’t.”

“Too bad I have to disappoint him.”

My hematologist wasn’t as subtle as the surgeon. He stood at my bedside every afternoon and lectured me. It was clear that he was genuinely worried that I had made a fatal mistake. A friend called to tell me she had refused surgery at first for diverticulitis. She had several reoccurrences until she finally took her doctor’s recommendation. Since the surgery, she hadn’t had one more episode. My bravado shrank day by day and I began to doubt my decision.

Nevertheless, I continued to feel better and better. I noticed that the surgeon was looking at me with less interest each morning. I imagined that his nod was wistful.

It’s really hard for me to know now if I had in fact been so in tune with my body that I sensed something the doctors could not discern. Now more than a decade later all I know is that I recovered without the surgery and never had a relapse of the diverticulitis.