Guest Post: Anti-Rape Nail Polish and the Ice Bucket Challenge: Symptoms of Similar Problems

Lately I’ve been blessed with a larger community of fellow writers and I’m happy to share my web site as a platform for them to in turn share their work with their own friends and fans and introduce my own readers to other points of view and ideas. This post by Lily Tsui is so thoughtful, insightful, and true to the pace of our lives and the weakness of our attention spans. She gives us a lot to think about, and as a health advocate constantly struggling to establish a lasting empathy for my child’s life-threatening disease, I sincerely appreciate the points she makes. Well done, Lily, thanks for sharing with us!

Anti-Rape Nail Polish and the Ice Bucket Challenge: Symptoms of Similar Problems

by Lily Tsui

My social media circles seem pretty evenly split when it comes to taking sides on both the rape-drug detecting nail polish and the ALS ice bucket challenge. It dawned on me (while thinking about life and things as I drove across town), that there are a lot of parallels.

Facts:

The nail polish may prevent some cases of sexual assault.
The ice bucket challenge has raised a shit-tonne of money and awareness for ALS.

Both of those things are not really controversial. Of course it’s good if someone detects that their drink has been tampered with. It’s also good that more people are now aware of ALS.

What’s problematic for me, is when we probe a little deeper and we ask, “What kind of world do we live in, where these things are good news?”

The fact that this nail polish has been invented tells us something about how deeply entrenched rape is in our culture. It is so prevalent and seen as so unstoppable that we are now designing cosmetics with additional safety features, because this is seen as more likely to work than actually expecting men to just NOT RAPE PEOPLE.

The fact that it took a viral social media campaign where we can gleefully watch our friends, family, and celebrities dump a bucket of ice water over our heads to get us to give a shit about a debilitating and fatal neurological disease tells us how willfully blind we are to things that are literally killing people. We live in a culture where without some trendy viral campaign or a rainbow parade of ribbons, we are simply unable to care. We cannot take action without prompting; when we take action we believe we are entitled to cookies and attention. What would happen if we took all the energy and time spent on dumping ice over our heads and used it to push our governments to invest in science, research, and healthcare in ways that actually results in better health for all? Then it wouldn’t be just about the disease of the day. It would be about systematic improvements in health for all.

The debate shouldn’t be about the nail polish or the ice bucket challenge as good or bad. They’re both. They are band-aid fixes to seriously broken systems. We need to focus on fixing the systems. Whether you’re pro-nail polish or anti-ice bucket challenge, I urge you, whether it’s sexual violence or disease that’s top of mind for you right now, dig a little deeper. Learn a little more. Do something beyond taking part in short-term quick fixes.

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Fascinating? Assholes?

A guest post by Anastasia Chipelski:

If I had my shit together enough to have a personal catchphrase, it would be “I’m ok” (subheading:  “no really, I’m ok.”)  I can be pretty consistently ok, or ok-passing, but most of the time I’m also the last one to notice when I’m not. That’s a problem, and it’s not ok.

But I’ve found a trick to clue in to my own ok-meter: I measure how I feel about strangers.

For the most part, I think that the other human beings living on this planet are fascinating. Not like love-everybody hashtag-blessed fascinating, but a curious “it’s amazing how we all get by” fascinating.

Working in social services, I’ve been trusted with snippets of strangers’ stories – nervous disclosure, brash assertions and all. Whether people’s stories align with our crappy stereotypes or not, everybody, rich or poor, educated in schools or on the street, well-dressed or couldn’t give two shits – when they are struggling, everyone has moments when they feel like they’re facing their particular problem all alone.

From the outside, there is no goddamn way to see the load someone is carrying, or to know whether they feel like they’re carrying it alone.

I’m a vault of stories, and the more I hear, the more I realize that I don’t know someone’s shit any better than they do. When someone chooses to share their tough day with me, it shines a light on my own ignorance. Living in any government system is a skill. Living on the street is a whole other set of skills. Living every day in your life and keeping your own damn self alive takes a set of strategies that, quite frankly, I can’t claim to know anything about.

I know how to do me, kind of, most days, alright kind of sort of, I mean, YES!  I’m ok.

When I really am ok, it’s easier to see the world with the belief that people can be weird as fuck and that they’re also all amazing. Comparing lives is a useless practice, and anyone who thinks they’re an expert on other people, well, I wouldn’t take their assertions too seriously (though I would still consider them to be oh so fascinating).

People can also be assholes, and they can be total jerks to other people, judgmental as fuck, and cruel. Exhibit one: the People of Wal-mart phenomenon, taking a sideways look at someone, measuring them up, and laughing. That fucking sucks.

A brilliant friend of mine (who has also been through the social services wringer) told me that people only hurt others when they are hurting. When people are assholes, I try to remember that those assholes are also dealing with some shit I know nothing about, with their end result being asshole.

So when I leave the house, am I ok? First check: how do I see these other human people, especially the random ones that I only catch half a glimpse of: The backwards ball-cap wearing dude who almost runs me off the road in his truck. The construction workers taking their first smoke break on the steps of the neighbourhood church. The mom impatiently pulling her crying toddler behind her, cursing aloud to the sky, and stopping in the middle of the street, making me brake suddenly to avoid a horrible crash.

We humans are judgmental creatures, and maybe we can’t help it. But if I stop to notice these judgments, I can decide which category my daily views are falling into. Fascinating? Or Everyone’s an Asshole, Kindly Fuck Off? Then I can ask myself: really, am I ok?

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At a Loss for Words

Aphasia  from ancient Greek ἀφασία (ἄφατος, ἀ- + φημί), “speechlessness”[1]) is an impairment of language ability. This class of language disorder ranges from having difficulty remembering words to being completely unable to speak, read, or write.  ~ Wikipedia

My first migraine occurred at age seven. Sobbing made it worse, so I was still, for days. By fourteen migraine visited every twenty-eight days until contraceptives regulated my hormones. On the pill migraines vanished for a year but returned with aphasia.

The first time I lost my words I laughed.  It didn’t last, then the pain came. My migraine pain is like at thumb pressed as hard as possible into a deep bruise, except the bruise is my entire head, and the thumb is the slightest sliver of light, the tiniest motion, a creaking bone, the brush of a pillow against my ear. I’ve known this pain most of my life, so while I dread it, I don’t fear it.

Migraine pain is fairly common, but aphasia migraine (sometimes called complex migraine) is rare.  It resembles a stroke.  My first was brief, and I didn’t equate it to the ensuing pain. My second severe aphasia experience occurred at twenty-six. A flash of light hit my peripheral vision. Moments later, I could not read. I called my sister but spoke gibberish.  For more than an hour I was hostage to my brain, which was thinking thoughts but losing language. As a writer, the fear of losing words forever filled me with terror. I didn’t know it was a migraine; I didn’t know if it would ever end. Finally, I was saved by the familiar pain that can only be soothed by absolute silence, stillness, and darkness.

For most of my thirties my migraines caused one side of my body to go entirely numb from the roof of my mouth to my pinky toe. During a rare night migraine I walked through the cold at a shopping center until I could see straight, wishing for the pain to come. I needed the pain because the aura only ends where the pain begins. Once I could tolerate the light, I spent two hours walking around Target with my child in a shopping cart, touching each finger to my thumb, over and over again until the feeling returned to my right hand. I feared speaking to the checker, afraid she would think I was drunk.

The migraine I experienced two years ago was my worst in twelve years.  I could not read the menu at the restaurant where we ate or a simple sign in the parking lot. I could not remember the words, “clam chowder,” even as I ate it. But I wasn’t scared because I knew what was happening when my right hand felt like ice and my teeth went numb.  I willed it to pass, and it did.  It was not a stroke, but my husband Jim was terrified. He wanted to take me to the ER, but I refused. Eventually, I saw a neurologist. An MRI showed scarring on my brain from decades of migraine, but it is blessedly more rare as I age.

For two years I was blessed without severe migraine, but Thursday I went to bed at 4:30 pm and didn’t get up for 45 hours. I couldn’t even look at a computer screen, much less read words. Jim challenged me to read a thank you card, I failed. The migraine passed, but not without reminding me how lucky I am to have my words and how I treasure them.

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The Fault in Our Hearts

I’ve never read The Hunger Games, or The Fault in Our Stars. It’s not that I’m dismissive of young adult (YA) literature, it’s just not my thing. I also don’t read westerns, mysteries, science fiction, or most fantasy,  but I do read the news and couldn’t miss the frenzy over The Fault in Our Stars film and author John Green.  I was curious about the title because I’d read that it was from a Shakespeare play, so I looked it up.

The source quote is from Julius Caesar and about negotiating the difference between fate and personal volition. Here is the quote:

Cassius: “The fault, dear Brutus, is not in our stars,
But in ourselves, that we are underlings.”
Julius Caesar (I, ii, 140-141)

This longer quote made me contemplate how much of my life over the past eleven and half years has been a response to the fate in my own stars – the uncontrollable facts of my life as I responded to my child’s illness. My reaction was to try to wrest control back by throwing my full weight against research and support for families facing Congenital Heart Disease. Ultimately, I came to the conclusion that all of my effort has been grief-bargaining with Fate, as if fighting the disease with all of my might would prolong my child’s life. Now I realize I wore myself down and burned out emotionally trying to negotiate with fate, when rationally I knew that I’ve done all that can be done.

This change has been coming for many years.  At first it was hard to step back, but I’ve come to understand that my withdrawal from advocacy-overload is not resignation to defeat but acceptance of the circumstances I cannot change. I can only change myself.

This shift in my identity from Advocate then Amanda to Amanda first, then Advocate, is happening at the same time my son is withdrawing from being seen as a patient. Back to John Green,  In this article,  Linda Holmes references Green’s fans by writing:

The Book Girls are only partly real; like most heavily marketed-to demographics, they only sort of exist. Every Book Girl is something else, too – a sportsy girl, a scientist, a nail-art aficionado, a poet, a prodigy, a patient. But the force they are exerting is real.

The red bold type is my addition. When I read this I was startled. Is “a patient” as much of a person’s identity as an interest in science or sports? It seems wrong that every other interest on that list was a positive, but identifying as a patient seems like it should be episodic, when you’re at the doctor or in the hospital, not a defining characteristic of your personality or existence. Was my focus on CHD forcing that identity on my son? Our lives are so much more than a medical condition, so much bigger than the difficult episodes. People want to be sporty, they don’t want to be patients. I don’t want my son to be a patient.

This article with that one tiny word brought an epiphany to fruition. I’ve been try to extricate our family from the “patient” label, thinking I alone had done the labeling. But no, it’s bigger than I am. This effort to wriggle from beneath a label began more than a year ago when I sat down to re-review the submissions people sent for Heart Warriors II. It was supposed to be an inspiring sequel to my first book that showed the world what made CHD survivors strong, what made them special, what it was like to face down this diseases from the patient’s perspective.

The stories were compelling, but the most interesting things, the most impacting things that happened to these people were not related to their CHD. The most pivotal moments of their lives happened not because they were patients but because they’re normal people. What I learned was that they were just like me, and so was Liam. He’s just a kid, not a hero, and putting a hero label on the shoulders of a little boy is beyond unfair. The label of hero as heavy as the label of victim, and neither is accurate. My son is a strong survivor, but he didn’t do anything any other human being wouldn’t do and has done when faced by a threat to life.

For the first part of my children’s lives. I was so immersed in my own identity as a heart mom, I crowded out full development of my family’s unique identity. I compromised my identity as “just a mom,” by trying to be a super-mom. We should be the Adams Family, The Board-Gamer Family, The Goldendoodle-lover Family, The Ordinary Family, and all these things we love and choose to do instead of being defined as a Heart Family. That label has constrained us in ways I couldn’t see while I wore it. I know I will always be a heart mom and I am not ashamed of that, but I am also more than that.

CHD-survivors who responded to my call for participation are no less compelling because CHD was not the driving factor in their lives. In fact they are richer, deeper, more diverse and interesting people than they are patients,  but it took reading their stories to realize they are not for me to tell. I was trying to tell a different story, the story of the heroic struggle, and that story was a fiction. The true story is ordinary people facing extraordinary interventions, not unlike any other person impacted by any other serious threat. The threat is not welcomed, but it is managed.

There was no pivotal patient moment that connected these stories. Instead there was the progression of life and the adaptation to circumstance, just the same motions of humanity we all do. Because the difficult events around our CHD journey seemed so huge, I gave them more space and meaning in my life than they deserve. Yes it was huge and most people don’t have to deal with all of this, but now that we’ve dealt with it, it’s time to let that go.  I don’t judge myself for how I coped or saw the world around me from where I stood. I am compassionate enough to myself to recognize my behavior and release my grip  on the past as an act of accountability and an effort to live in the present. Every year brings me more perspective, and I continue to change, just like everyone else.

John Green, as a famous writer, is a unique position to restore the perception of humanity in those who’ve been betrayed by their health and are no less human for it. CHD Survivors don’t need a pedestal, they deserve even footing to live  their normal lives. Someone once told me I’m famous in the CHD world, in the Heartland, because of the nonprofits I founded, the advocacy work I’ve done, this blog, and my first book. The fame label didn’t feel like an insult or a compliment, it felt like a responsibility.

I  don’t know if I am famous, but it’s my greatest hope that by sharing this long and perilous journey that this ending of Advocate-first Amanda the the emergence of Amanda, Mom-Wife-Writer-ProgramManager- first, Advocate-after helps other families who feel an affinity with our family find more perspective and healing. We can stop fighting with the stars or the futility of wishing away a disease. We can label ourselves something new and unique to each of us as individuals, something extraordinarily ordinary, something we choose for ourselves.

 

Posted in CHD (Congenital Heart Disease), Heart Warriors, Heartland, memoir, motherhood, Real Life, Uncategorized | Tagged , , , , , , , , , | 3 Comments

While it Lasts

This has been a most interesting week. My book Heart Warriors, A Family Faces Congenital Heart Disease went on sale Wednesday for $1.99, and by the end of the day my book was in the top 15 of all kindle biography and memoir titles. Then the next day came and I expected the rank to crash, but it stayed pretty high. Then today, I went looking for the crash, but instead found the book was once again on sale for $1.99.

I did not know Heart Warriors would be on sale again today. So, if you want it, get it now because I don’t know when it will stop being on sale. Anyway, here are some fun pictures of Aunt Amanda’s Wild Ride, and I’m sure, soon there will be a crash, but at least I had Friday to be the author of the #1 book in Medical Memoir. That’s a lot of awesome.

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A Decade of Mo – The Most Beautiful Girl in My World

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If a picture is worth a thousand words, then here is the story of the life my most precious pearl, june bug, Gemini, baby girl. The one, the only, the amazing Moira. Happy tenth birthday to my darling girl, no … Continue reading

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G is for Graduation, H is for Holter

Staying true to not writing about Liam’s personal life, I’m going to do my best to share only my feelings. Sufficed to say, Liam has never, ever liked Holter monitors, a documented historical fact, and it’s not gotten any better. The Holter monitor came back yesterday, it’s like a boomerang.

For those not in the know, a Holter monitor is a smallish box that connects to five leads that are attached to the skin over the ribs and sternum, and Liam happens to be allergic to the adhesive in most of the leads on the market which causes blisters under the pads that rip off with the pads, bleed, scab over, etc. The reason he has had so many is that he has a long and complicated history of rhythm issues. Let’s just say that as we endure the 21st or 23rd . . . certainly more than 20 . . . Holter in our house in the past seven years it’s gotten old.

Just now, from the corner of my eye, I saw Liam watching over Moira’s shoulder as she used the computer. He looked like he was holding an old Sony Walkman with a cord coming off it, just standing there holding an electronic device like any eleven year old boy. Then it hit me, again, that he’s wearing leads on his skin on top of 21 chest tube scars, and at the top of his sternum where his skin has been cut through with a scalpel six times. He’s holding a device that’s measuring his most vital sign of life because it came unclipped from his waist band. Why can’t it be a Walkman?

So back to me, because I don’t want to expose him any more than necessary. Our lives have been so stable and ordinary, for the most part, since Liam started kindergarten almost seven years ago. Yes, we’ve had a couple of trips to the ER and the whole pace-maker dance, routine appointments, curious blood work, the Philadelphia clinic visit, thousands of dollars worth of Holter monitors, etc. But no caths, no surgeries, no overnight hospitalizations since the week before he started elementary school. The Holter, with its wires and log sheet, just remind me of things I’d rather forget.

I always wondered how some heart parents could pretend like everything was in the past when we all know heart defects, especially palliated ones, are never fully “cured,” just treated. Then one day, we started living instead of surviving, and it really is easy to forget.  It’s also very painful to remember, a bit like whiplash.

We’re sixty minutes away from getting rid of this Holter and six days away from a biannual cardiology appointment. These are the moments anxiety and what-ifs typically seep into my subconscious mind and start keeping me up at night. These are the moments when I remember surviving and forget how much living we have done, and that is sad.

Liam “graduated” from elementary school last week. Jim and I got front and center seats, and we both cried big rolling tears.  Just days before our son started elementary school a nurse had thrown all of her weight on top of a sand bag that she was pressing against Liam’s femoral artery to keep him from bleeding out after a cath, where he had angioplasty and a stent placed after more than seven hours under general anesthesia. Then, he started school like nothing happened. Yes he had big IV bruises and was on blood thinners, but otherwise he was no different from the other five-year-olds in his classroom. He was so excited to start school and wanted us out of his school so it could be his place in the world. I watched other parents crying when their kids started kindergarten, but I was numb from the week before. Now, he’s a middle schooler – just like that.

Last Friday I was no longer numb. I felt the full weight of how very far we’d come, and the enormity of gratitude that I carry through my life. As emotional as I was, it was a blissful kind of contentment, the exact opposite of numbness. Then, yesterday the Holter came, and tomorrow it will leave, and we will ride the waves of this life, feel the panic of free fall, and find our balance again, and again, and again. This is what it means to live, and it is a beautiful thing.

 

 

 

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