National Gay Men’s HIV Testing Day Events in Tallahassee

I made some new friends for a cause I’ve long supported when I went to Neighborhood Medical Center’s STD Prevention 101 Healthy Happy Hour last week. I was there partially because I wanted to get a picture I could share on the Sept. 21 #ADayWithHIV. I got my picture:

 

And I got so much more…

I got a reminder that there are people in our community of all ages, races, genders and walks of life who face decisions every day about their sexual partners and practices. Especially among young people, some of these decisions are poorly informed (or downright misinformed). It takes candid talk, acceptance and easy access to testing and treatment options to help them make the best decisions for their health.

As I alluded to in this post, helping people be aware of the risks they face, the options from which to choose and the resources available to them takes explicit discussions (i.e., naming body parts correctly, not being shocked by the array of ways people interact with each other sexually and throwing away assumptions). It also, however, requires the intuition and empathy to understand how self-esteem plays in. A 15-year-old young woman, for example, said “I’m not going to get tested; I know my [18-year-old] partner is positive, so I’ll just get reinfected.”

It has been a long time since I was on the front lines of this particular kind of work (and even when I was, it was on the phone as a counselor/supervisor for the Florida AIDS Hotline, so my “front line” was a telephone receiver). I have so much appreciation and respect for what these people do. Additionally, I am grateful for the federal, state and local funding (Leon County Board of Commissioners, United Way of the Big Bend)  that makes it possible. The links I have shared aren’t comprehensive: my point is that it takes funding from a variety of sources and those are, in my opinion, jeopardized by our current political environment. We should advocate for them to be continued.)

National Gay Men’s HIV Testing Day

National Gay Men’s HIV Testing Day is coming up on September 27, and my new friends asked me to share information about the events that will be held throughout the week to observe it. I am happy to do so; here’s what they said:

Our community knows how important it is to maintain an active role in our own health. Starting Friday, September 28, 2018 through Sunday, September 30, 2018 Neighborhood Medical Center will be hosting our 4th Annual Health Extravaganza for National Gay Men’s HIV Testing Day. All events will take place at Hotel Duval (415 N. Monroe St. Tallahassee, FL. 32301) and will be free of charge to the general public. Below is a detailed list of the events that will take place during the 4th Annual Health Extravaganza:

Friday, September 28, 2018 Live Couch Talk
An interactive conversation with a health care team about HIV prevention and treatment options for people living with HIV/AIDS. Come hear the personal life story of one person’s HIV diagnosis and their journey to living a healthy lifestyle.

Gay Men HIV Testing

Saturday, September 29, 2018 PrEP First Drag Show
An informational health event about PrEP {Pre-Exposure Prophylaxis} with a Drag Exposé. This FREE event will provide educational components, speakers, drag shows and lots of fun with a twist.

Gay Men HIV Testing

Sunday, September 30, 2018 Gospel Drag Brunch
An event to close out the Health Extravaganza weekend. We will fellowship through food and song as we commemorate the precious lives lost in the LGBTQ community and individuals affected by HIV/AIDS.Gay Men HIV Testing

No one will leave this event empty handed or uninformed as we will have booths presented by our partner agencies: Big Bend Cares, FAMU Health, FSU CHAW, and Florida Health, amongst others. Please come out to help Neighborhood Medical Center and our partners spread the word to patients, family, friends, and community members about PrEP and HIV/AIDS.

Each of these three events is free. However, the organizers ask that you register through this link, which has a separate registration for each event.

For additional information, feel free to contact:
Mathias Sweet at (850) 688-0914 or msweet@neighborhoodmedicalcenter.org
Joseph Ward (850) 577-1562 or Jward@neighborhoodmedicalcenter.org

Gay Men HIV Testing

Banned Books Week 2018

Banned Books Week 2018 is September 23 through 29, 2018.

Since 2014, I have participated in the Banned Books Week Virtual Readout (which, by the way, can be done anytime — not just during BBW). In 2017, I read from I Am Jazz (here’s the recording). In 2016, I read from Beyond Magenta: Transgender Teens Speak Out (here’s the recording). In 2015, I read from The Curious Incident of the Dog in the Night-time (here’s the recording). In 2014, I read from Captain Underpants and the Big, Bad Battle of the Bionic Booger Boy (here’s the recording).

This year, I am reading from And Tango Makes Three . The American Library Association’s Office for Intellectual Freedom recorded challenges to/bans of 416 books in 2017.

Banned Books Week 2018

Of the top ten, this book was number nine. The ALA says, “Returning after a brief hiatus from the Top Ten Most Challenged list, this ALA Notable Children’s Book, published in 2005, was challenged and labeled because it features a same-sex relationship.”

Here’s my readout:

How I Chose This Year’s Book

This year’s process wasn’t especially formal. I ruled out books I had read before, and solicited opinions on Facebook (scientific, right?). I ended up choosing “And Tango Makes Three” because my friend Rebecca said her little boy likes it. The end.

After reading it, I can say I like it too. It’s about New York City, first of all, and evokes my memories of going to the Toy Boat Pond with Tenley years ago (I’ve never been to the Central Park Zoo, oddly enough!).

I like how Roy and Silo (Tango’s Parents) were much like me as a parent-to-be and then a parent. They hoped fervently to have a child of their own to raise and prepared as well as they could. When she finally arrived, she hung the moon in their eyes. Universal parenting aspirations.

About To Kill a Mockingbird

Most people in my informal poll wanted me to read To Kill a Mockingbird. I have read it before, but it has been so long. I’m not sure why it intrigued so many people in the discussion, but for the record, here is why it was challenged, according to the ALA:

This Pulitzer Prize-winning novel, considered an American classic, was challenged and banned because of violence and its use of the N-word.

I need to revisit TKaM anyway. It’s on my list.

Why Book Challenges and Bans Matter

This year’s Banned Books Week theme is “banning books silences stories.” I believe wholeheartedly in the power of stories (even (especially?) stories that make us uncomfortable, introduce an idea or concept that is new to us or in some other way expand our worlds.

Banned Books Week 2018

In Why do we ban books, anyway? Chelsea Condren writes, “The power and danger in book banning lies in someone’s ability to think their opinion is the only one that matters, and, thereby, the only one that is allowed. I think a lot of us want what’s best for children. But being able to decide for oneself the quality of someone else’s thoughts, and being able to use those skills to form your own opinions, is a skill best learned by reading. The ability to think critically is important, and books are the tools with which we whittle that ability.” I agree.

I also am reminded, by an author who has had his share of challenges (Mark Haddon), that it’s short-sighted to be even a hair smug or self-righteous about being an advocate against challenges/bans, because “…both sides, paradoxically, are to be thanked for getting more people reading and talking about books.”

Banned Books Week 2018

Here’s to letting all stories see the light of day. Banned Books Week 2018

 

 

Five Minute Friday: COMPLETE

 

Five Minute Friday

Today’s Prompt: COMPLETE

“Pick a stick from this bag,” said the facilitator at last night’s “Happy Hour” focused on STD Prevention. (For the record, the bag was filled with popsicle sticks of varying colors and condoms.) I took one, no questions asked.

Once everyone had chosen a stick, the facilitator told me what our sticks represented:

Orange: HIV

Blue: Syphilis

Yellow: Chlamydia

Red: HPV

Purple: Gonorrhea

Green: Negative

As you can see below, I “had” chlamydia.

Five Minute Friday

This is an exercise educators use to help young people (and, apparently 53-year-old people) understand the effects of their actions.

“Did you think to ask me ‘why should I take that stick?’ he asked us.” NO. We just did it, because he offered.

I attended the event because I wanted to reconnect with the world of education/advocacy about Sexually Transmitted Diseases in advance of today’s #ADayWithHIV (here’s a previous year’s post).

In addition to the samples of how the educators connect with young people (like the popsicle stick activity), there were discussions of the basics about STDs and how they are transmitted.

More than the graphic pictures and the clinical discussion, though, I was struck by something the educator said overtly once or twice but implied throughout: people have sex with other people, even in situations that they may *know* are risky, because they lack the self esteem to advocate for themselves.

They see it as something that will make them complete, yet it may lead to illness, pain and an altered life course.

This is why we owe it to our fellow human beings to help do something to build up, not tear down, self esteem when possible.

 

Five Minute Friday

 

 

 

Kleine-Levin Syndrome: A Family Ascends the Mountain

It is particularly significant to me that my friend, Jonathan Lyons, allowed me to share this reflection he wrote in advance of Rosh Hashanah this year. He, his wife Barbara Forbes-Lyons and their son, Avner, are navigating a changed life due to Avner’s diagnosis with Kleine-Levin Syndrome (KLS). My goals in sharing Jon’s story are a) to support him and his family b) to expand awareness of KLS c) to help other families coping with the chronic and severe illness of a child know they are not alone and d) to celebrate the fact that this family is not defined by KLS. 

Yom Kippur. a time of atonement and repentance, is approaching. This quote (attributed to Maya Angelou but I can’t completely confirm) said something about forgiveness that pertains to Jon’s piece:

Forgive yourself for not knowing what you didn’t know before you learned it.

Jon’s post touches two complementary ideas:

As parents, he and Barb have been weighed down by the heaviness that comes from trying to define (and resolve) the rare condition that became apparent as their son’s physical condition and behavior changed drastically. 

Related, as Jon mentions in the post, he and Barb were told that perhaps they should move on emotionally. Why do we as human beings presume to know what a family going through something so intricately difficult and chronic needs to do? It must be hard to forgive these people for “what they didn’t know before they learned it” but perhaps this post can put a tiny dent into helping others learn.

~ Paula

Kleine-Levin Syndrome

Jon, Barb and Avner

Yom Kippur is nearly upon us. The cycle of the new year has begun for Jews around the world and part of this will include reading of the binding of Isaac, Abraham’s favorite son, born of his wife Sarah. None of that was on my mind until just recently.

It struck me, seemingly from nowhere. For the past couple years, nearly the only thing on my mind was the health of my only child. My son, Avner has a very rare, devastating neurological illness called Kleine-Levin Syndrome (KLS). KLS is a form of ideopathic hypersomnia. That means that people with KLS, sleep a lot. Some of them sleep for days at a time.

When they are not asleep, but “in an episode” their waking moments are marked by mood changes, memory deficits, and many strange behaviors. Parents like myself, flock to the online support group and frequently rant when our children are gone again. We hope it will not be for long and that this might be the last such episode.

Often this disease takes years to be properly diagnosed. Patients frequently collect incorrect diagnoses of severe mental illnesses until a doctor or a desperate parent finds the KLS diagnosis and the search begins to find a qualified medical team that can test and evaluate the patient for KLS. I say parent, because the mean age of onset for KLS is 16 years old, but my son had his first episode at 12. Some aren’t diagnosed or experience symptoms until well into adulthood.

My son’s prognosis is tentatively good. He responds well to a course of medical treatment. Only 30% to 40% of patients see relief from lithium. No other drug currently performs as well. Though we also rely on a second medication which is custom compounded for hypersomnia patients, as an off-label prescription.

I tell this tale frequently. I tell it too frequently. As a parent of a healthy child, until this disease, I was ill prepared for such a radical change in lifestyle and perspective. Parenting is difficult and we all struggle at times, but without much doubt, my wife, Barbara and I have struggled more than many because of the great uncertainty created by KLS. Even now, we do not know if our child will wake tomorrow or if we will return to the painful cycle we lived before the medication seemed to be working.

So, someone who heard me tell the tale too much, told me so and suggested it’s time to move forward again. It woke me up and made me more self aware, which is certainly a theme of Rosh Hashanah.

After sleeping on it, a little like Jacob, wrestling his own angel, I had my own insight. We all read biblical stories through the lens of our own experiences. The Binding of Isaac certainly invites such opportunities.

My friend David turned to me one year during holiday services and said to me “Isaac was an idiot.” We ducked out of services so he could grab a quick bite and he laid before me his literary criticism of Isaac and made a compelling case for some kind of developmental deficit. It absolutely fascinated me and probably established my deep interest in this passage as an insight into late Stone Age or early Bronze Age cultures.

In our sanitized modern culture, the story still horrifies us. No doubt, some kids must come home from services wondering if their parents are going to tie them down and offer them up as a holy sacrifice. Post Holocaust, a common criticism of Abraham is that he failed G-d’s test because he argued for the innocent of Sodom and Gomorrah, but not for the life of his own son.

Now I’ve gained yet another perspective on the tale. We read this story from different key perspectives through our lives. Upon our introduction to the story, usually at a young age, we see the story as Abraham’s servants saw it play out before them. They brought the wood and their master and Isaac. They saw the plot played out before them with keen interest but without personal investment. On those initial readings, we learn the sequence of events and we know that they have great importance.

We become familiar with the story and we try on the role of Isaac. At first we wonder at the journey and we put our trust into Abraham, when he tells us that G-d will provide the ram. We experience the fear of the raised knife. Like young adults, we may feel indignity at being the passive object of everyone else’s designs. Where is Abraham’s chutzpah, willing to raise his objection to his G-d in the name of the unverified good souls in Sodom and Gomorrah, but not for his own flesh?

Perhaps, like my friend David, you seek an explanation by way of some defect in Isaac. Was he a simpleton, unable to speak intelligently for himself? The narrative makes quite the point of the simple childlike questions that Isaac asks, yet the chronology of the story tells us that he is a grown man by this time. Could this have been a Stoneage rite, to rid the tribe of members who could not contribute? Could the importance of the tale be that Abraham broke the tradition to give us a new modern morality? Did Abraham pass the holy test by sparing his son or following the command of his deity? Did he fail for following an immoral order without question? These questions have long been debated between Jewish scholars.

Yet there is another reading. Parents who enjoyed the growth of healthy children and suddenly struggle with their own infirmities while caring for an ailing child know this reading. Abraham has grown old in the service of his Lord. He has profited and grown his wealth and that of his people. All has gone well for this servant of G-d. Abraham has G-d’s ear and great influence in his known world. Then his life which moved from strength to strength changes course abruptly.

My own child was strong, energetic and brilliant with an insatiable curiosity. We used to run together when I trained for triathlons. Then he disappeared inside himself for more than two years and we were living with a walking husk of the child we once knew.

It occurs to me, that maybe we have been reading the story of the binding of Isaac all wrong. It’s not a test of Abraham’s will, or devotion or even his ultimate morality. It’s not a test at all. Through Abraham’s eyes it’s a journey of a father who faces an impossible task regarding a child he loves. He has no choice in the matter. His only option is to move forward through the horror ahead.

In the next part of Abraham’s tale, he loses his wife. He does not speak directly to G-d again, as far as we know. He seems broken by the experience as far as we can see. His demise follows closely enough, and the great wealth and the land holdings he gathered will not pass to the next generation. Isaac was a dweller of tents, we are told. He was a nomad.

It doesn’t make for a tidy reading. There’s no tightly knit resolution, except to say that everyone continued to live their lives and that struggle would ensue.

Those of us who have watched a healthy child fade before our eyes, walk in similar paths. We watch the graduation announcements and the triumphant first day of school photos in social media. Instead,we celebrate when our child is well enough to continue school, or the school is willing to amend accommodations that help our child stay enrolled, if we are very lucky.

We are ascending the mountain, because we must. We have the blade in our hands. Our beautiful children walk beside us, struggling under the load of the wood they bear to the altar. We are both hoping and praying that this will work out in some other way than what it seems. We continue through the day. Then we gather our loads, and we do it again.Kleine-Levin Syndrome

How You Can Help

To educate yourself, visit this link.

To donate, click here.

To learn more about how to speak with a family dealing with a rare illness, click here.

 

Five Minute Friday: CROWD

Five Minute Friday

Today’s Prompt: CROWD

I haven’t done a Black Friday shopping trip in years, and I never was crazed like some people get, but the crowds can get insane. If you’re having trouble conjuring an image (which you probably aren’t!), here’s help:

This is what my brain has looked like in the early mornings for a long time, as I immediately picked up my phone to check email, Facebook, Twitter, Instagram and possibly a few other things the minute I was out of bed. Not to delve into TMI land, but I do mean first thing.

I was unleashing a flood of other people’s priorities, not to mention some truly superficial bits of information, into my head.

As I began my full-time job Monday, I wanted to turn over a new leaf. Although I had been working at the organization already as a freelancer, and mostly full-time hours, I have a renewed sense of the need to focus, especially since the bulk of the work is editing (as a freelancer, a portion of my responsibilities included research and writing, which to me requires a bit of a different focus approach).

I decided if I wasn’t able to live without my phone for that first few minutes (sigh), at least I could be doing something that contributes to my ability to focus and incorporates a positive, uplifting message for the day.

That’s why I put Daily Burst from AudioJoy on my phone. Each morning, the app serves up a thought-provoking or inspiring quote, an article (which I don’t usually read…but it’s there), a scale to gauge how I am feeling that day, and a brief audio reflection (3-5 minutes) with the accompanying text.

***end of five minutes***

My brain is not a loss-leader meant to be fought over by other people with their own priorities.

It is the only one I have, the resource I need to do a job I love already well, and something over which I want to take firm control.

Today’s reading included this passage, which I find much more constructive than a doorbuster.

Five Minute Friday

Five Minute Friday

 

 

 

Squeezing Big Meaning from Small Moments

“Procrasticleaning” is not something I can recall ever experiencing:

Procrastination Rewards

However, I procrastinate in other ways. We all have the activities we turn to when avoiding life’s bigger and more intimidating projects.

A weekly prompt from the Poets & Writers site references a Philip Roth quote:

Now I can have a glass of orange juice in the morning and read the newspaper.

Apparently Roth wrote this upon his retirement as a fiction writer. The prompt directs the writers to, “Write a personal essay about the simple, everyday things you wish you had more time to do, that are often sacrificed to a busy schedule,” and asks, “How are these activities enticing in a way that is different from the excitement of grander plans?”

P&W had another prompt based on the portmanteau procrastibaking.

Let the orange juice flow; here are my thoughts on the intersection of putting things off and finding alternate rewards along the way.

Procrastination Rewards

As I formally wrap up more than four years as a freelancer (more on that toward the end of this post), it would be easy to reflect on the things I could have done better or more efficiently.

The year after my father-in-law died, especially, was free of many of the distractions (logistical and emotional) that came with being part of a marriage in which both of us were primary caregivers to my father-in-law.

With different time management, I could potentially have:

-Used the roughly 52,000 words I have written in weekly Sunday blog posts and weekly Five Minute Friday posts to make progress on the book about Camp Gordon Johnston I have been saying for years I plan to write

-Helped the family bottom line more by ramping up pitches for paid freelance writing

-Helped the family bottom line even more by becoming a transcriber earlier and buckling down to accumulate more hours of paid transcription

My procrastination that got in the way of those types of things was characterized mostly by time on social media that didn’t have an immediately obvious positive effect on my pocketbook, productivity or general outlook on life. I sure didn’t (as mentioned at the top) clean house better.

However, there is a certain amount of processing involved in adjusting once a loved one is gone, and once all the responsibilities and constant vigilance of taking care of someone with short-term memory disorder (and two occurrences of cancer) involves. We also became a true empty nest when my son moved out to go to school, which also was an adjustment. I am choosing to give myself grace for that.

If Time Were No Object

Since the prompt asked, here are the small(ish) things I could make a higher priority and why they matter to me.

Cleaning

Let’s just get this one out of the way. I wish I could be one of those people who say, “I had a sponsored post due at 5 p.m. yesterday, so of course my floors were sparkling and there wasn’t a speck of dust in the house by 3:55.” I’m not that type of human, as I’ve discussed previously. It does matter, though, because I hate living in a cluttered, untidy house as much as the next person.

Social Media

Such a mixed bag here. I don’t need to make it a higher priority. If anything, it is too high now. I do wish I had time to delve deeper into some people’s shares. I know I owe people in some of my groups a thorough reading of their posts, a sharing of their content, and a thoughtful comment. They’ve certainly done that for me without much reciprocity on my end. Social media is one of my primary outlets for connecting, especially since I work from home. I think the key is using it more judiciously, not necessarily making a drastic cut in the quantity of time I spend there.

Needlework

The last counted cross stitch project I did took roughly three years to complete! However, every time I touched it, I was reminded of the comforting rhythm of doing something you can hold in your hands (that isn’t a smartphone). I also realized why my mom said “it just bothers my eyes” as she got older. The tiny work is not as much fun as it used to be for me, either. But the repetitive nature, seeing a design come together, knowing the project is a way to convey my affection for the recipient — those are all positives.

Procrastination Rewards

This doesn’t showcase the incredible job the framer did; I forgot to take a pic before it was packaged. Also: Censored for being NSFW — it’s a bit of an inside joke!

Exercise

I have finally gotten back into an exercise groove (yay), but I am still fitting in what to me is a bare minimum. I would love to find a new/different class, walk a different route, join a friend for some type of fitness experiment.

Coffee With Friends

This isn’t really that small in the long run, but I sure could happily put off some things in favor of time spent chatting with friends over coffee (or wine — I’m flexible!). I know that I have tended to say what I really mean through my writing more than my voice in recent years — and I need the real-time reactions and thoughts of people who know me well. I also need to give back to them by being a sounding board. It works differently eye to eye than it does in Facebook messenger.

Get Lost in a Project

I feel a little ridiculous admitting how much relaxation and joy I got from creating things with Smarties. I love the candy itself but I also really love gluing it together to design an image.

Procrastination Rewards

I guess Smarties Art kind of ties in to some of the other things I mentioned above — doing projects with my hands, seeing a vision come to life (even if it’s silly chickens!), spending time away from a screen, giving people conversation starters.

I think that was Philip Roth’s point: each individual would probably choose something different if time were not constrained. The prompt asks about the small things, not the big bucket list things. I’ve always felt that less monumental actions and conversations are the adhesive that binds our lives together (I especially feel that way about parenting), and this is what I would do with mine.

How about you?

Procrastination Rewards

Here’s How Things are Changing for Me

My period of time working solely as a freelancer is coming to a close, as I mentioned above. This may leave less time for needlework, Smarties Art and cleaning (um…not a worry!), but this is a welcome change and a career transition that allows me to be a bigger part of an organization that has grown in significance to me, both its product and its people, since I began as a freelancer in January 2017.

I will be a full-time editor at SmartBrief starting tomorrow, editing email newsletters such as the Social Work SmartBrief. Please visit the main site here and subscribe to any of the newsletters that appeal to you (there’s something for everyone).

Procrastination Rewards

Five Minute Friday: RAIN

Five Minute Friday

Today’s Prompt: RAIN

When I went grocery shopping at Publix recently, a little voice in the back of my head said, “take the umbrella.”

It’s not, of course, uncommon to have an unexpected deluge here in Florida in the late afternoon, but I often think “I can sprint to the car” if it’s raining.

Not that day.

Between the time the automatic doors swished open and the time I got to my car, the skies had opened up.

I must have looked *hilarious* trying to juggle the groceries (being especially careful not to drop the wine!) and the umbrella. I didn’t do a very good job because I came out of the process soaked to the bone.

I took a picture (from inside the car) to share a humorous tweet about the inevitability of the daily shopping trip (specifically the car-loading portion) intersecting with the daily downpour.

I could just share the picture here, but I think it’s important to keep the ability to craft images using only words. I’m a pretty visual person, so that’s always been a challenge.

This day, the rain seemed bent on invading every thread of my clothing. I suppose it’s good that I had gotten plastic bags (I usually ask for paper) because paper would have deteriorated in the rain and I would have run the risk of dropping all the groceries (did I mention the importance of protecting the wine?!).

The umbrella was blowing inside out because it was so windy. I did get my phone in the truck (priorities) because a waterlogged phone was the last thing I needed.

***end of five minutes***

My head was trying to embrace the “isn’t life an adventure and isn’t it a privilege to be holding all these groceries, to not have to worry about where the next meal will come from?” angle but my annoyance was winning out, I must say.

What I know beyond a doubt, though, is that I had a dry home to which to return and a roof over my head, not to mention the ability to laugh at my “misfortune,” so my annoyance abated almost as quickly as a Florida afternoon thunderstorm.

Five Minute Friday

 

 

 

4 Cardiac Health Stories Relevant to Women

My friend Lorraine has been posting recently about her medical journey. She almost went down a road that would have involved invasive surgery, a lengthy recovery and time lost on the things she loves most. However, she sought a second opinion and has a new plan that will hopefully resolve her issue while preserving her health and time.

Although Lorraine’s story doesn’t regard cardiac health, it dovetails with four different cardiac health stories I’ve heard this week. The topic is personally relevant for many reasons, and each story left me wishing we handled women’s cardiac health issues differently.

Sudden Death Due to Cardiac Arrhythmia

My friend Chris Russell shared a story this week about a young endurance runner who died suddenly due to a cardiac arrhythmia.

The information about cardiac arrhythmia accompanying the article says this:

Cardiac arrhythmia is a frequent cause of death during sleep. This is when the heartbeat is irregular and the heart may be beating too fast or too slowly. Although they can affect all age groups, it is more common in older people and drinking in excess or being overweight puts people at greater risk. Sudden cardiac death from an arrhythmia kills around 100,000 people every year.

Note: I believe the “100,000 people per year” figure applies to the UK. The Cleveland Clinic puts the figure for adults in the US at 325,000.

Whether it’s 100,000 or 325,000, the number is too high. Due to our family’s experience with Long QT Syndrome (we lost a family member who died in her sleep at age 30, leaving behind three young children), along with stories such as Christine Garwitz Puricelli’s regarding her daughter Emilie (here’s Emilie’s page for info and donations), I am a staunch advocate for awareness on the part of medical practitioners and self-advocacy by patients.

Women and Cardiac Health

Emilie Puricelli

Takeaway: Be persistent if you feel there is an issue even after doctors say things are okay. (My sister-in-law had been hospitalized a short time before her death, but the medical exploration focused on areas besides cardiac issues. How could a 30-year-old with a career and three little kids, appearing mostly healthy, have a cardiac problem?)

(Now that we know of the issue, most people in the family who share genetics with my sister-in-law have been tested and the ones who do have Long QT are on appropriate medication and know what precautions to take — this stands a significant chance of helping them normal lives with normal longevity, thank goodness.)

A Close Call Due to Sudden Cardiac Arrest

My friend Lisa posted this article about a man who went into sudden cardiac arrest during a workout and was revived by a truly serendipitous combination of events that included the presence of nurses (and easy access to an AED).

Lisa should know. I think it’s safe to say every single one of us in the Tallahassee running community who know and love Lisa said something like “you must not mean Lisa” when we first heard about her cardiac arrest and subsequent surgery a few years ago. (Lisa tells her story here in this older post from a time when we were trying to help her with a particular campaign.)

Takeaway:  While it would be unrealistic to say “never work out alone” or “always have a trained medical professional nearby,” do be cognizant of your workout conditions, especially if you have a family history (Lisa had a family history; I’m not sure about the cross fitter featured in the other article). I suppose the other takeaway is “don’t assume anyone is invincible.”

A New Cardiac Problem Along With a New Baby

My friend and former coworker Janet posted this article about a woman who developed postpartum cardiomyopathy shortly after her baby was born. Janet, who also came far too close to losing her life due to PPCM, feels that education is important (I agree).

More about PPCM (from My Heart Sisters):

In PPCM, heart cells become damaged through an inflammatory process, and a woman can go from healthy to complete heart failure in hours, days, weeks or months after giving birth and sometimes while pregnant. It is one pregnancy complication that is rarely spoken about and because no one talks about it, it continues to claim lives and cause incredible suffering.

Much like Serena Williams had to convince doctors that she was on the verge of a life-threatening condition right after she gave birth, many PPCM stories I hear have the same thread: “thank goodness a medical professional FINALLY listened.”

When Technology Helps Reveal An Underlying Issue

My friend Karen had serious open-heart surgery last year. I believe it’s safe to say everyone thought the major issues were resolved, and she returned to her taxing career as an elementary school teacher. I’m keeping this explanation concise, because it’s a developing situation and I respect her privacy.

But apparently she had an Internal Loop Recorder placed after her original surgery. It recently showed signs of a serious new issue. That led to a life-saving placement of a pacemaker/defibrillator. Without the loop recorder, it could have taken much longer for the new issue to arise, and her life would have been more at risk.

Takeaway: Technology can play a huge role in cardiac health. I have an IRL too (for a much less serious reason than Karen) and I am reassured that it is keeping track of my Multifocal Atrial Tachycardia so if an issue does arise, I can have it addressed immediately and my physician will have lots of useful information. By the same token, and I realize this contradicts what I just said, don’t depend solely on technology. It isn’t the only information that helps a doctor make a decision and it can be inaccurate.

How to Be Your Own Best Advocate

When I set out to write this post, I asked if I am really qualified to do that (this is a question I ask before writing most posts, but in general I believe in taking the first step and acknowledging that there is a wealth of information among my readers/followers — what I don’t know (or get wrong), they can fill in the blanks).

Based on the four scenarios and takeaways I shared above, here are 5 important tips (even if I don’t practice them perfectly myself).

  • Keep asking even if told you are okay
  • Modify your fitness routine to accommodate any potential cardiac issues
  • Do your own research
  • Document everything
  • Take advantage of technology

I also like much of what Trin Perkins has to say in 5 Ways to Be Your Own Health Advocate, including “view yourself as the client, not the patient.” She has a point.

I am happy some of the people mentioned in the stories I shared today survived, and sad that some lost their lives when I believe more awareness of women’s cardiac health issues could have led to a different outcome.

Speak up, friends. Your life may depend on it. (And please listen up, medical professionals. Our lives may depend on it.)

Women and Cardiac Health

 

Five Minute Friday: RUSH

Five Minute Friday

Today’s Prompt: RUSH

Full disclosure: I am having trouble focusing today. Usually, for my Five Minute Friday, I set the timer and put on classical music so that I can concentrate.

Not today!

I can’t tear myself away from Aretha Franklin’s funeral, for one thing (a favorite line, from former President Clinton: “she decided to be the composer of her own life song.”) Isn’t that awesome?

I suppose I *can* tear myself away, though, because I’m listening to Les Brown right now in preparation for embedding this video into today’s post:

Here’s the role this video had in my life this week. (The version I was shown was a bit abbreviated, but the theme is the same.) I was preparing for a job interview I had been working toward for quite a few months. The time had finally come and I was trying to figure out how to convey that one of my best qualities is consistency.

I asked an extremely tight-knit (and private) small group of friends for parables or other brief stories and examples about consistency. My friend Yolanda said: this is what I think of you … and linked to this video.

I started watching the video and found myself crying the most genuine tears I’ve cried since my mom died in February. I don’t want to spoil it by telling you the video’s point, but in essence it is …

***end of five minutes***

…that sometimes the efforts we make to nurture the things that matter in life take an agonizingly long time. Sometimes it doesn’t look like you’re making progress. BUT if you are consistent in preparing, growth may come in a rush when all that patient nurturing pays off.

I encourage you to watch it too. Maybe you’ll carry away a different lesson than I did, but I think you’ll find something inspiring or motivational.

And on a different topic, I want to ask your good thoughts and prayers for Megan Johnson. It doesn’t render well below, but the caption to this Instagram picture is “when the why is clear, the how is easy.” I’m not sure if the “how” of things has been especially easy for me even though my “why” has felt pretty consistent over the last few years. Yet, I am touched by her sentiment and I want to encourage everyone’s thoughts, since she was hit by a drunk driver recently (as per Annie Jorgensen, Miss Georgia ). Annie says Megan is stable but in pain. If you happen to be on Instagram, rush on over and leave her some kind and healing thoughts please!


Five Minute Friday

 

 

 

9 Reasons Gender Reveals Make Me Uneasy

Gender Reveals

Full disclosure before you read more: this is a curmudgeon post, not my usual sunshine and rainbows. It’s just how I feel. I support everyone’s choices (okay, maybe not the one with the live alligator, but I’m getting ahead of myself…)

9 Reasons Gender Reveals Make Me Uneasy

Many of them involve contraptions that emit pink or blue smoke. It’s dramatic (which is cool and makes for great pictures) but (and I realize this is a bit of an optical illusion) it appears to suffocate all the celebrants.

The “shooting” imagery weirds me out. This is often part of the “smoke” gender reveals (but also part of the “confetti” gender reveals). Sometimes, the father-to-be is pointing the shooting mechanism that is going to emit the smoke or the confetti at the pregnant woman. What’s up with that?

The sharp objects involved are so … evil-looking. Especially with those ubiquitous black balloons filled with pink or blue mini-balloons, someone has to wield a sharp object to pop the thing. It’s strange to me. (Related: one gender reveal I saw had a complicated (and, honestly, very cool-looking) balloon creation that replicated the mother. The gender reveal was done by inserting a sharp object into the balloon “belly,” which then released the gender-disclosing balloons. It was seriously disturbing to watch the real mom plunge the sharp implement into the balloon belly.)

They are pretentious. Not all gender reveals are pretentious. Some are simple and elegant at the same time. But the extravagant productions make me scratch my head. Some are so over the top.

Gender Reveals

They freak the siblings out. I have seen multiple gender reveal videos where a toddler is totally intimidated by the smoke, the general hullabaloo, or the sight of their parents jumping around like lunatics in celebration. (While, of course, the photographer hired to document the occasion tries to capture the picture-perfect shot that captures the family’s bliss and glee.)

Something could go wrong. Granted, this is just the way I think about the world (despite my Optimism Light persona). But what if the vendor packed pink balloons instead of blue? What if someone is allergic to tinted smoke? What if the sharp implement slips? What if the car with the special burnout packet designed to emit tinted smoke has an accident or runs into a participant? My list goes on and on. In addition, unless people get a chromosomal analysis, ultrasounds have been wrong.

“Flaming balls”? There’s a particular type of firework that emits “flaming balls.” Here’s an example I saw on Instagram.

Gender Reveals

“Shoots flaming balls.” What could possibly go wrong?

The mixed messages are off-putting. I love a good theme as much as the next person, but some of the messages (and the way they are implemented) make me want to wash my hands). Specifically, there’s an entire genre of “here for the sex” products and themes. One Gender Reveal video I saw showed the mom, dad and a sibling who appeared to be around 9 years old cutting into an “I’m here for the sex” cake. How did they explain what “here for the sex” means?

Our society is at a different place about gender norms. A few popular themes include “quarterback or cheerleader,” “boots or bows,” “staches or lashes” and “cupcake or stud muffin.” You can peruse many more through this link. It would be dishonest of me to say that my expectations during my pregnancies didn’t align pretty much with traditional “pink or blue” and “ballerina or ball player” thoughts. My kids are both cisgender and my daughter is a ballerina while my son is a car guy, but something about these themes seems at odds with an increasing awareness of intersectionality and the growing acknowledgement in society that many people don’t identify as strictly male or female. I suppose it’s a topic for a different post (or, honestly, coffee in person — gender fluidity is something that takes nuance and diplomacy, in my opinion) but I suppose ultimately what I would rather a reveal predict is “this kid is going to be an amazing, compassionate, capable human being who makes the world a better place!”

BUT

I’m going to pull myself out of curmudgeon land for a moment to say this: Sometimes a gender reveal is the right thing to do and brings joy to everyone around. I may differ on how people choose to share details as their pregnancies progress (one wish I have regarding mine is that I had waited to be surprised regarding the gender of one of my children, honestly), but ultimately whether someone finds out at all, chooses to share the information, posts a simple picture to Instagram or puts on a lavish party, a new baby brings hope. The biggest thing a Gender Reveal shows is that we can all put aside the pessimism so predominant in our world today for a moment to celebrate new beginnings.

Here’s one that doesn’t get a complete curmudgeon vote from me. I admire this family for finding a way to celebrate their new arrival even though they are physically separated*:

*And I acknowledge that this gender reveal leaves some people (including me) with a not-so-great feeling because it implies the gender (male) is what the dad prefers. Otherwise, it makes me happy.

I am linking this post with Kat Bouska’s blog this week, for the prompt “Write a blog post in exactly 9 lines.” I fudged a bit but there are nine specific lines here about my topic!

Gender Reveals