Trick and Treat

Each year my mother would reiterate her two rules about Halloween. The first rule was “no accepting sweets.” The “no candy” rule extended all year with the exception of the Christmas multicolored ribbons my Aunt gave as a gift. However, on Halloween she saw the parade of little monsters and goblins ringing our doorbell as beggars. “Saying trick or treat doesn’t make it right,” she muttered. Mom had grown up poor and proud. She had never asked for a handout in her life.

As generous as she was to the neighborhood children every other day of the year, on Halloween she halfheartedly handed them sticks of sugar-free gum or tiny bags of popcorn. As soon as I was old enough, I shared the task of opening the front door. I was not allowed to join them. As I glanced at the full sacks of tasty treats each child gripped tightly, the demon of envy crawled up and out like a Halloween spider. The trick I learned was to look into each child’s face, not what they carried. It melted my resentment like warm chocolate and it is a technique I have used all of my life.

Mom’s second Halloween rule was that I could only wear a costume I designed and stitched myself. We were not poor, but every spare nickel and dime went into a savings account my mother called my college fund. “It’s just a waste of money to buy a costume when you can make one yourself,” Mom said.

This was my treat. I spent weeks thinking about what costume I could make that was both unique and fun to wear. Looking for something unlike the trite witches and ghosts, I would flip pages in magazines. After watching the Shriner’s parade one summer, I crafted an outfit that resembled a genie sprung from a bottle. I sorted through the old clothes, costume jewelry, hats, scarfs, bits of fabric. The balloon leg pants came from a tattered chenille bedspread. The pants puffed out at the legs, held tightly to my waste and ankles with elastic seams. The wrapped turban was scrounged from one of my father’s old jersey undershirts. I wore a single hoop earring. I stitched slippers that had a curled back point at the toe. I can still see that one-of-a-kind costume in my memory and feel the sense of accomplishment. It has lasted longer than the taste of any candy.

“Everything…affects everything”

Ralph the custodian at the library arrived for work on a chilly morning. He noticed another car at the back of the parking lot. “That’s odd,” he thought, “the library doesn’t open for another two hours.” He thought perhaps the owner had not been able to start it for some reason and left it there, but then he noticed the engine was running. Ralph walked over to see if the car’s owner had left a note on the windshield. It startled him to see that in the driver’s seat was a young woman, slumped over the steering wheel. He knocked on the window and got no response. The car door was locked.

By the time I pulled my car into the lot everything appeared as usual, Ralph was standing by the door waiting for me. He opened the door so that I would not have to use my key. His usually cheerful face was grave. Halting a bit, he explained the police had come and gone. As Ralph feared, the woman was dead. She had blocked the car’s exhaust pipe, turned on the car engine, locked the doors, and waited to die. If she had had any second thoughts later she would have been too paralyzed by the fumes to get out of the death trap she had constructed.

I had often thought of Ralph as our Tin Woodman, a man who was more comfortable building bookcases and taking care of people, than acknowledging his kind heartedness. He lowered his voice and said, “They took her body to the morgue and towed her car away.”

It was mid-morning when the police officer came to the library to say that they had identified the body. She was a college freshman. The officer told me her name, but I didn’t recognize it. Her name rippled from one staff member to another in hushed tones. Most shook their heads and said, “No I don’t remember her.” Murmurs of “How sad,” echoed each time another staff member came into work.

But Emily at the circulation desk said, “Oh yes, I remember her now. She was soft spoken, kind of shy. She probably used the college library most of the time, but she came here every once in a while.” 

Most of that day few people talked about it. The atmosphere was somber. At the staff meeting the next day, I asked everyone to say a few words about what they had felt when they learned of the suicide. Some librarians, who had children of their own, thought how the young woman’s parents must be grieving. Several people said that they wished they had known her better, known that she seemed withdrawn and anxious. Perhaps if they had taken the time, while checking out her books, to inquire how she was, they could have offered her some comfort. If she hadn’t felt so alone, could it have made a difference? Then Ralph spoke, “I thought I was the only one who thought perhaps I could have prevented this. I wondered if I had just arrived extra early to work, could I have saved her life.”

I think she would have been surprised that the town librarians sat together mourning her death. She may have been astounded to know that thirty years after her suicide, the director of the library still remembered her death as tragic.

Internet Snake

I was searching the Internet when I got a pop-up warning me that my computer had been infected. Odd I thought since I had blocked pop-ups. The message gave me a phone number to call to fix the problem. I couldn’t shut down my browser and I panicked. My reptilian brain hissed “do something quick or you will be sorry.” I called the number. The man on the phone said he could see if I had a problem or not and before I could say anything he took remote control of my laptop. That’s when I began to think I had made a stupid mistake. My curser was moving and it wasn’t me moving it. He showed me reports from my system and said, “Your warranty has expired and you have no virus protection. See all those zeros on this report? I can get rid of the malware, clean up your system and install virus protection right now.”

“How much will that cost me?” I said as fear began to be replaced with skepticism.

“That depends whether you want protection for one year, three years or five years.” Then after I was silent he said, “One year is $99.”

“I can purchase virus protection from some other company, if I need it.” I said.

“Oh yes, but with a Mac, your choices are very limited.” I knew that was not true, but I just wanted to end the conversation so I didn’t argue.

“Then I’ll go to a Mac store,” I said.

“I’m okay with that,” he said.

I didn’t really care if it was okay with him, I thought. I was now angrier than scared. “If I change my mind what number can I call?”

As soon as I ended the call on the phone, I disconnected my computer from the Wi-Fi and shut it down. Then I called Apple Support. “No one should take control of your computer without your consent,” she said. “I would have been just as frightened as you were about what he might be doing.” Then she assured me that I had done the right thing to shut the computer down.

As I suspected even though the warranty had expired, that had not affected my virus protection. At no charge, she directed me through a series of tests on my computer system. The scam artist had lied on several counts and in doing so he had also defamed Apple. Relieved that no damage had been done, I told my reptilian brain to go sleep under a rock and then gave Apple Support the phone number from the scam artist.

“Everything…affects everything”

Ralph the custodian at the library arrived for work on a chilly morning. He noticed another car at the back of the parking lot. “That’s odd,” he thought, “the library doesn’t open for another two hours.” He thought perhaps the owner had not been able to start it for some reason and left it there, but then he noticed the engine was running. Ralph walked over to see if the car’s owner had left a note on the windshield. It startled him to see that in the driver’s seat was a young woman, slumped over the steering wheel. He knocked on the window and got no response. The car door was locked.

By the time I pulled my car into the lot everything appeared as usual, Ralph was standing by the door waiting for me. He opened the door so that I would not have to use my key. His usually cheerful face was grave. Halting a bit, he explained the police had come and gone. As Ralph feared, the woman was dead. She had blocked the car’s exhaust pipe, turned on the car engine, locked the doors, and waited to die. If she had had any second thoughts later she would have been too paralyzed by the fumes to get out of the death trap she had constructed.

I had often thought of Ralph as our Tin Woodman, a man who was more comfortable building bookcases and taking care of people, than acknowledging his kind heartedness. He lowered his voice and said, “They took her body to the morgue and towed her car away.”

It was mid-morning when the police officer came to the library to say that they had identified the body. She was a college freshman. The officer told me her name, but I didn’t recognize it. Her name rippled from one staff member to another in hushed tones. Most shook their heads and said, “No I don’t remember her.” Murmurs of “How sad,” echoed each time another staff member came into work.

But Emily at the circulation desk said, “Oh yes, I remember her now. She was soft spoken, kind of shy. She probably used the college library most of the time, but she came here every once in a while.” 


Most of that day few people talked about it. The atmosphere was somber. At the staff meeting the next day, I asked everyone to say a few words about what they had felt when they learned of the suicide. Some librarians, who had children of their own, thought how the young woman’s parents must be grieving. Several people said that they wished they had known her better, known that she seemed withdrawn and anxious. Perhaps if they had taken the time, while checking out her books, to inquire how she was, they could have offered her some comfort. If she hadn’t felt so alone, could it have made a difference? Then Ralph spoke, “I thought I was the only one who thought perhaps I could have prevented this. I wondered if I had just arrived extra early to work, could I have saved her life.”

I think she would have been surprised that the town librarians sat together mourning her death. She may have been astounded to know that thirty years after her suicide, the director of the library still remembered her death as tragic.
“Everything…affects everything”
Jay Asher (Thirteen Reasons Why)

Not Today

One of the youngest members of our Fibrinogen Free community recently had a conversation with his cousin that went like this.

Cousin: “Do you have Hemophilia?”

Response: “Umm, not today.”

I think I know how he feels. I began this blog six years ago, and I haven’t posted in almost two years. Each time I think about posting I think to myself, “Umm, not today.” At 66 years of age I actually feel like I don’t have a bleeding disorder except for the few hours I spend each week being infused with Factor I.

The biggest change is that fibrinogen concentrate is now available and cleansed of known viruses. The standard of care is to use this concentrate on a prophylactic basis so that it prevents the deterioration of joint tissue and life threatening bleeding. And, gene therapy is in the works. Then there will be no more concern about what undetectable hazard has entered the blood pool. I believe it will not be long before Factor I deficiency is a thing of the past.

When I began this blog I hoped to find some more people who either had a fibrinogen deficiency or had someone who was a family member with little or no fibrinogen. We are a small group yet we know there are more. We learn from each other, support one another, and advocate together. I am grateful that folks younger than I are using social media to reach out and say, “Hello, you are not alone.”

Scars from bleeds in the past now limit my walking. I don’t climb stairs with ease. Knees, ankles, shoulders, and back aches remind me daily that being born with no fibrinogen has taken a toll. My brain does not function the way it did before a hemorrhagic stroke in 2002.

The more we know about preventing unnecessary bleeding incidents the healthier we will be. Because I am currently the oldest member of our online community I remember the bad old days viscerally. My body and mind signal the reminders of insufficient treatments or delayed medical attention. There are still many people who experience this needlessly. There are still doctors who do not properly diagnose or treat those of us with Factor I deficiency.

We all deserve to have more days when we don’t feel like we have hemophilia.