A Seat on the Bus on 4th of July

Fourth of July

Fourth of July, St. Helena Island, South Carolina

On our bus route in NYC, no one got up when a grey-haired man with a long pony tail lurched up the steps, walker first. Printed on his worn brown cap was “American Veteran” and it was the Fourth of July. The vet was going to sit though no seat was open, and he motioned to a white-haired man to move over one in the handicapped seat area at the front of the bus. And he did, grimacing, but kept his legs spread wide, his manicured white fingers trembling from age or anger, I wasn’t sure which.

The vet was a big man in a loose T-shirt and shorts, awkward, and vocal. I don’t know where he was headed. He launched into a description of how important this day was to him and the three ladies in the handicapped seats opposite listened and nodded.

“This is the first day I’m out of my wheelchair in four years,” he explained and when he spoke, his gums showed where he was missing front teeth. He began a story about the VA and his endless struggle to get his healthcare right.

He maneuvered the walker up beside him into a raised space near the front where people sometimes rest their bags. Twisting in his seat, his large backpack squeezed the space of the man next to him, who nudged it, then hit at it. I thought a fight might break out right there but it didn’t, and they settled in after a few pushes.

“I feel bad,” I said.

“Don’t,” a young woman next to me said, “He’s taking care of himself, he’s strong, and he’s going to be just fine.”

I started worrying about the night’s celebrations and the noise of it all, and how people who’d been in the wars would feel with the fireworks going off. I had a flashback to a fireworks display in Albany years ago where a homeless man raced out into the crowd from under an overpass, terrified and yelling, thinking he was at war again.

I remembered my childhood Fourth-of-July times, confusing because my mother wouldn’t condone fireworks – dangerous for the fingers and she was a pianist – and my father, also a veteran, didn’t like the noise-makers. Long after I’d left home I realized he probably had post-traumatic-stress-disorder (PTSD) and I began to understand the “rockets red glare, bombs bursting in air” brought back painful memories, as it does for many of the men and women who’ve been in combat.

Military with PTSD is helping with signs this year for veterans and loved ones to put out: “Combat Veteran Lives Here – Please Be Courteous with Fireworks.” If you see one of these, you can let them know if you’ve got fireworks planned so they can prepare and get headphones on or at least, avoid the surprise.

May your Fourth of July be a safe one, and may you get a seat on the bus, wherever your life is taking you.

The Other Side of a Migraine

I’ve been having migraine headaches that fully flatten me a few days each month for about 15 years now, and my worst one ever was Monday and Tuesday of this week. But I don’t want to think about what the migraine does to me during the “attack” as it’s called, or the aura that comes before.

No, I’m interested in the other side of a migraine, the precious hours when it recedes.

That strange time between migraine and normal is like being born all over again, going from a state of darkness, as helpless as an unborn child, right back to the state of adulthood all within the matter of a day.

Gargoyle in Jackson Heights, Queens

Gargoyle in Jackson Heights, Queens

My usual abilities and senses reappear gradually and it seems odd to say, but they surprise me as they come back. I can hear someone walk through the apartment and be happy they are here, instead of thinking the entire building is about to come crashing down with their every step. I can walk again, myself, albeit slowly and a bit unsteadily like a clumsy toddler, and remember with each step how much I really like to walk.

I can tolerate, and even enjoy, scents without getting sick while I make coffee and light incense in the kitchen, just like I usually would when I don’t have a migraine. I can come into the light, and even open the curtains and let daylight stream in through the tall maple trees from the courtyard. I’m able to eat something, and to make it down two flights of stairs, outside.

I’m functional enough to step into a sunlit patch on the partly shaded sidewalk. I can’t yet take full sun, but can squint at the light reflecting on the tiger lilies blooming down my street, and the gargoyles guarding the neighbor’s gardens, and remember how I love the sun. Colors jump out all around me every step by deliberate step of the way to the morning train.

On the other side of a migraine, my senses transform from an abnormal and painful state of fully overwhelmed nerves to simply hyperactive. They are on their way back to normal, and in these sensitive moments they seem precious to me.

Colors are still almost painfully vibrant but I want to see them, scents come in too sharp but I want to smell them, and sounds that were only a few hours before causing tumultuous pounding in my brain now seem interesting to me. I hear the smallest things I would normally completely miss, blocking them out whether from familiarity or dislike, I don’t know. But now I want to be able to hear them again.

I want all these sense impressions again, and as the dark blanket of pain falls away, I can handle them.

The strangest part of the other side of a migraine is how thoughts rush back in like a waterfall after a good rain, as if to say, “Hey, listen to me! Why weren’t you paying any attention to me these last days? Where did you go? You know what I think? Well, I’m about to tell you…” and then come the 1,000 things the mind wants to do and say and accomplish now that the darkness is gone. So, OK mind, I’m here again. I’m listening.

Thank you migraine, for helping me remember how much I really wanted to be here.

Queens Botanical Gardens, J.J.Brown

Queens Botanical Garden, J.J.Brown

In Memory of Norman Brown, on Father’s Day

Norman Brown 1945

When a father can’t be there, it’s tempting to say, “He is gone.”

I could say that my father, Norman Lester Brown, passed away. But his words, his ways, his stories come to mind so often that a more truthful thing to say is, “He is always with me.”

I could say that my father died of lung and bone cancer some 14 years ago, but since half his DNA floats around in each of my living cells, and a quarter of his DNA makes up the genes in each of my daughters’ living cells too, “dead” hardly seems like the right way to put it, either. I tell my daughters the things he told me many a time when I don’t know quite what to say.

He and my mother made me; he and my mother shaped me. I am, because they gave me everything I needed to survive before I could ask for it, demand it, work  for it. I like to think that I’m like him in some ways, and in a photos from when we were about the same age, him in 1945 and me in 1980, I imagine that I resemble him.

J.J.Brown 1980

When I was very young, before I had started school, I remember asking my mother, “Why do we need a father?”

“God wouldn’t let me have you without a father,” she said.

She was cooking at the table and I was in some kind of high wooden chair beside her close to the kitchen window. I looked out the window at his garage workshop there down the hill from the house, which is where he usually was during my waking hours. At the time, I was certain God made a big mistake there, because my mother was always with me, always talking with me, feeding me, bathing me, and I hardly ever saw my father. He seemed to be not the least bit interested in my early childhood foolishness.

As I got older, I came to understand the essential, supportive, grounding role he carried on for each of us in our little family. But when I was a child, my father and I didn’t have much of what you would call conversation.

“Little girls are to be seen and not heard,” was a well-meaning comment I heard from him way too often for my liking.

To be sure, I was annoying, and yet he was never angry with me. I talked constantly when I had the chance. Sometimes, more directly, he would simply tell me to be quiet because he was listening to the news, or the opera, or reading the paper, or The New Yorker, or Sciences – and if I kept on, he couldn’t do any of those things.

I listened to him. I watched him. I followed him around as he was working. My father became a subject of observation, and later, of fascination. Norman and Jennifer 1977

As I remember him, Norman Brown was over six feet tall, slim, and iron clad in muscle. He kept his black hair very short and his face clean-shaven, had large blue eyes with perfect eyesight, and a steady hand with any kind of tool. He was masterful with machines, some of which he invented out in his garage, and with fixing or rebuilding all types of vehicles – anything from motorcycles to sports cars to bulldozers.

He was also a storyteller. When he was in the mood, and I was still awake, he retold Norse myths, Isaac Bashevis Singer stories, and tales from his past. Things like how even as a child, he was always working. He drove a truck loaded with potatoes in and out of New York City before he was even in high school, and too young to legally drive. He cut school many a day to work on the small farm and fields surrounding the house I also grew up in, years later.

At 18, he volunteered for the U.S. army after his stepbrother, who had been drafted, was killed in Germany. His stepmother couldn’t stop either one of them. In basic training in Texas he found out that nothing could motivate him to kill a stranger, someone he didn’t know, who had a family, who might be much like he was – as he explained it to us. He suffered through many a psychiatric investigation trying set him right as a good soldier. Finally, the army gave up on training him and he was used to stand guard outside General MacArthur’s tent in the Philippines, and later in Japan, to cart away the dead and bring food to survivors.

One of the many important things my father taught me was to be in the moment, because what was right and wrong, truth or lie, was always relative to the context of that one moment. So here, now, the truth is Norman Lester Brown is with me for Father’s Day not only in memories, but in how I see and live in my world every day.

My Vaccine Memories

My vaccine memories are personal ones from my childhood. But these are colored from my years in biomedical research when protecting people from infectious diseases like hepatitis C and HIV was an unreachable goal. We still don’t have a vaccine for either virus.

Have a look at the History of Vaccines site, from the College of Physicians of Philadelphia to see how far we have come with other vaccines, like measles.

Dark Childhood Memories

The summer before I began kindergarten, my sister stayed in bed for a long time, unable to move. I don’t know how many days or weeks it was, but we thought it would be for a long time, maybe forever.

FDRMy mom said my sister had something like polio, and told me the story of our past president Franklin Roosevelt (shown with his dog Fala). He was paralyzed by the disease for life. This is how I came to know about polio. The word became terrifying. I thought, no one wants their sister to lie in bed unable to move, thinking their days will go on like that until the end. Not if they have a choice.

Later the doctor identified my sister’s infection as a different virus – an echo virus, or one of the coxsackie viruses which can cause paralysis. We lived near the town of Coxsacki, in upstate New York, but as a child, I didn’t ever understand how that was related to her paralysis. In time, she recovered. She stood up, and with a lot of undivided attention from my mom, she got to walking around and was just like normal again.

The Mystery of School Shots

When I started public school, we got all our vaccinations there. I don’t remember getting any before that, though I must have when I was a baby, because all the information was filled out on my vaccination record card. I still have it. There may come a day when we have to show it, if we start regulating adult vaccination.

I remember standing in a long line the day shots were given to all the school children. The floor was marble, the hallway was cold, the windows were cracked open, the air smelled of that strange particulate stuff they sprinkled over vomit in the public schools. I was small, maybe between five and seven, and silent as I could be, hoping to disappear.

The public school nurse and a teacher’s aide loomed over us children as we trailed along toward the front of the line. I imagine that we were dragging our feet, and though no one was talking, I remember both girls and boys crying.

No one wanted to get their shots, of course. I didn’t know which dread diseases the vaccination was to protect me from getting – we either didn’t talk about it, or it was not memorable.

Later, at home, my mom told me the story of why a neighbor’s youngest son was slow, and deaf, and couldn’t speak in a way any of us could understand. It was because she had suffered from German measles while she was pregnant with her son, and the disease affected him that way as he was growing inside her. The neighbor was one of the school aides, and whenever I saw her, I thought of her son and German measles. But when I was in school, which was where we got all our shots, no doctor or nurse ever said anything I remembered about how vaccines kept me from catching viral or bacterial infections. We could change that.

Children cried on the day we lined up for shots, afraid of needles I think. They baffled me. I had been sewing and knitting at home – or trying to – since I had been trying to write. So getting stuck with pins and needles while I was making doll clothes, aprons, and later my clothes, had become a kind of routine. And living near the woods where I spent much of my free time roaming around alone, running into things and falling over them, led to so many rips and tears in that fragile envelope of skin I had, that a little blood or a small scar didn’t bother me either.

The vaccine shot was not a big deal for me, except for this: I didn’t know the man who was doing it. Who was he? Was he trustworthy? Did he care about us kids? I had no idea. I think that this kind of internal questioning may still part of the experience for children who get vaccinated today.

The Routine of Vaccination

Freehold, New York

Freehold, New York

Before entering junior high and high school, I had to show vaccination records, and again before college. By then, getting immunized to meet the requirements had become routine. It was something I understood. I had been given tetanus shots more times than I cared to think of after things like rusty metal punctures from exposed nails in abandoned country barns. And from reading, I had learned about the unfathomable numbers who died from plagues of smallpox, measles, mumps, rubella, diphtheria, pertussis, and polio in history. I thought of the vaccines as helping keep me alive.

While we didn’t have any individual choice about getting vaccinated, that didn’t seem to matter to me, my parents, or anyone I knew at the time. This has really changed. Now with the newer vaccines like HPV (human papilloma virus) and chicken pox, more of us question the safety and ask about the risks in addition to the protections the shots can give.

Protection from Dreaded Diseases

When I started working with infectious diseases in science labs, vaccination for hepatitis B virus was required by OSHA, and still is. I thought of it as protection, and was eager to see my titers and know whether my antibodies had gotten up to the level needed to keep me safe.

When each new person joined the lab, I asked them if they had their shots first before getting them involved with the hepatitis B viral cultures, infected cells, or animals I worked with there. One of our younger students hadn’t had her hepatitis B shots, and I told her to go get them before she started working. It caused a conflict with the lab head, who overheard me. He wanted her to go ahead and start, and said the vaccine wasn’t important. He physically dragged me into his office, closed the door on me, and yelled for a while about who was in control.

I went to fill out a complaint for assault and for not following the OSHA regulations, at the school’s safety department. But the safety officer dismissed the scene without any action at all, giving me a stern warning, “politics is real.” I never figured that one out. But the memory is a raw reminder that we are not all in agreement about when vaccines are required, not even the people working in biomedical research who have strict regulations.

A Wish for New Vaccines

Working with HIV virus and hepatitis C virus infected blood, and cells, or animals during my graduate school years and then post-doctoral fellowships, we had no such luck – there were no vaccines. I can’t even describe the level of fear that it strikes into the heart knowing that you are handling things like that. They are viruses that infect and kill too many of thousands of people every year. I would wear gloves, move the materials around carefully, wash my hands all the time, and sometimes bag up my clothes when I came home.

I remember wishing we had vaccines for these viruses, too. I still do.

What are your vaccine memories?

 

Love Safe, You Might Be the Vector

Infectious diseases we pass on to the people we love are painful tragedies. We are vectors. Sometimes we’re a vector for change, for good, but sometimes what we pass on is a virus that’s fatal – and one we didn’t even know we had.

Dramatized in the Screen Actor’s Guild Award-winning “The Normal Heart”, in January 2015 Mark Ruffalo won best best male actor in a TV movie or miniseries for his portrait of facing HIV/AIDS. Male or female, young or old, black or white, no one is immune to the ever changing and highly mutable HIV virus. And it’s not because people are afraid of getting their immunizations, like we’ve seen with measles in the United States, or because we have a good reason not to get our shots. It’s only because we have no vaccine to prevent HIV infection.

Anyone could pass on viruses they don’t know they have, to someone else who has no idea what they are getting. Testing to find out if you are infected is getting easier, for the HIV virus. The latest is an HIV diagnostic smartphone dongle that gives results in 15 minutes, invented by a group at Columbia in New York City. Health workers are using it in areas of Rwanda in Africa, where access to healthcare is difficult for rural people.

In the United States, and even in New York City where I live, HIV infections are still surprisingly common. Many New Yorkers don’t know our status. For those who got tested and do know, NYC’s records show 2,832 people were newly diagnosed with HIV in 2013, and 1,527 people died of it here, with 117,618 now living in the city with an HIV positive diagnosis – this is in New York City’s 5 boroughs alone. On National Black HIV/AIDS Awareness Day February 7th, groups around the country are having events to raise awareness and get more people in their community tested. We don’t have a vaccine, but other prevention steps work, like using condoms and having safe sex.

“Get educated, get tested, get involved, get treated,” urges the National Black HIV/AIDS Awareness Day Strategic Planning Committee. There is so much a person can do. You can be an angel and prevent an infection. You can be a dragon slayer and get into a treatment program that controls the virus, to keep it from expanding further into our communities.

I wrote the novel Vector,  a story of a singer coming of age in New York City during the HIV epidemic, based on my own experiences in healthcare and biomedical research over the years as a scientist. Readers see the young woman’s HIV/AIDS journey through the eyes of her doctor who runs a clinic in New York.

Here’s an excerpt from the book, after a benefit ball to support the doctor’s HIV/AIDS foundation, when he is walking home through the city streets with his partner.

Book Excerpt

Vector a Modern Love Story – J.J.Brown

9780983821137

When Louis and Victor walked out of the hotel together onto Forty-Ninth Street, arm in arm, it was nearly three in the morning and cold, and a misty rain was falling. It was the tail end of the storm. The sidewalks were wet and crosswalks flooded at the corners where debris had collected in the runoff from the rain throughout the night.

“Are you alright?” Louis asked as they turned on Park Avenue.

Victor shrugged. He wondered why Louis seemed never to get tired.

“Worried about Julio?” Louis persisted.

“Of course.”

“You want us to get a ride?”

“No, no, let’s walk, please. It would be good for me to walk a bit. The thing is, no one’s seen him in a while, not at the clinic, no follow-up appointments, not at the counseling sessions, you know? It’s concerning.”

“Julio’s been depressed before. He’s been sick for a long time, Vic.”

Victor looked down as he spoke to avoid stepping in the deep pools of water at the corners. “And now he has the AIDS dementia. That’s the worst part of the disease, in my opinion. He’s been sick for years, four or five years, but now it’s changed him. It’s changed him completely. So difficult for Raul. And I think it, it may be more than that now, you know? It may be, it may be…”

He looked up and saw a homeless woman with thin blonde hair who was wearing a beautiful, billowing golden overcoat. She walked past them, drifting along in the middle of the street like an apparition. The contrast between the wretched woman and the fashionable coat was jarring. Dr. Victor stopped, looked at her and continued. “It may be the end.”

Louis snorted. “Don’t fixate on that part of it. Even if it is the end for Julio, death doesn’t define you. How many people in the history of the world died of one kind of venereal disease or another? How many plagues have come and gone? If you’re spared, what does it mean? Does it mean anything at all? And if a person died, do we say, ‘Well, so and so, they died of this or that’? It’s your life, not your death, that defines you.”

Victor looked up at him quizzically and felt infinitely grateful for the diversion Louis always provided on nights like this one.

“I’ll say a name and you say what you think of—ready? What you think of immediately, what you associate the name with. Don’t take time with it, don’t work on it.”

Victor nodded in agreement.

“Beethoven.”

“Sonatas. The Appassionata. Bliss.”

“That’s what I mean. How many people, when you say his name, think immediately of syphilis?”

Victor thought about it; in his profession, possibly a few.

“Casanova,” Louis continued.

“Love.”

“You see? You don’t right away think, ‘Oh, that’s the guy who used sheep’s gut for a condom tied with a pretty pink ribbon, and he still got syphilis anyway,’ do you? No. What about Shubert?”

“Dances. Ländler. Piano music.”

“And Cellini?”

“I see your point. Sculpture. Italy.” Victor laughed lightly.

“That’s what I’m saying. You don’t think about how they died from VD. Arthur Ashe?”

“First black tennis champion.”

“And Anthony Perkins—Psycho, right? The movie? Tell me: When I say their names, you remember what they did when they were alive, not how each of these men died from AIDS. Can’t you tell me that? I know you can.” Louis was almost pleading now.

“Ach! They did die of AIDS. Terrible. I’m a doctor. I think about these things. Let’s change the subject, can’t we? I’m afraid I’m going to cry.”

Louis continued very gently but determined. “Dear, I’m not finished with you yet. When I say ‘Rudolf Nureyev,’ what do you think? Hmm?”

“Of the most beautiful dancing of all time. Ballet. Russia. I know. I know.”

Victor observed the old woman in the yellow coat wandering in front of them. She sat down on a sidewalk bench in front of a dark café that was closed for the night. He watched her and he was immobilized. “I thought they were open all night,” he said weakly.

“Vic. Come on,” Louis urged.

“It’s just…”

“There’s nothing you can do right now, dear. Really, there isn’t.”

“Something isn’t right.”

“In there?” Louis gestured back toward the hotel. “Or out here?” Louis nodded toward the woman. She leaned back on the bench and covered her body carefully with the overcoat, pulling it around her bare, red and swollen feet. She was making a bed for herself.

“I don’t know.” Victor put a hand over his heart. “But I think in here.”

– J.J.Brown, Vector a Modern Love Story

Where to Find the Book

You can buy Vector in print and ebook editions here:  Amazon   /   iTunes   /  Barnes & Noble   /  IndieBound / Smashwords

And read reviews of Vector here: Goodreads  /  Sharon Buchbinder’s Reviews / Cynthia Robertson’s Reviews / Shoot Your Eye Out Publisher Review