Uncategorized - Stacy Kess

Let’s really talk about it

Ya know what? Let’s talk about it.

Black and Brown parents have The Talk with their kids. Little girls get a different kind of The Talk from the women in their lives. Jewish and Muslim kids get a version of it too. LGBTQ+ families have a version too. All for certain scenarios.

What do you do if you run into a situation where you are singled out for who you are and aggression — maybe even violence or death — is likely to come your way? The Talk is always given in a way where we, the potential victim, are told to do our best to be calm, collected, proper, polite. We are supposed to do everything right. Whether you are a Black father giving The Talk to your son about how to interact with the police or a mother explaining to her daughter how to avoid date rape or a Muslim family explaining how to avoid an anti-Muslim confrontation to your teen daughter newly wearing the hijab or an Asian-American parent talking to your child about what to do if confronted with anti-Asian hate: You know I’m right.

I know what I’d do because I’ve lived through several situations, some where I’ve frozen, some where I’ve ran and some where I’ve fought back. I know what I was supposed to do in each scenario, but my fight-flight-freeze response took over — because I’m human.

I survived in every situation. I’m lucky. My body froze when it needed to freeze. I ran when I needed to run. I fought back when I needed to fight back. But what if I hadn’t?

When I saw Tyre Nichols get up from the first set of beatings and run, I saw a person running for his life. I saw fear. I’ve felt that. But he was running from five police officers with weapons who caught him and beat him so severely that his injuries were fatal; there was no escaping that outcome.

Perhaps you’ve never been in a situation where you were confronted with the possibility of violence just because of who you are — just because of the color of your skin, or your gender, or your religion, or your disability, or anything that makes you different from those who hold power in a situation. If you haven’t, imagine yourself in that scenario and tell me what you would do. You imagine you’d do everything right, everything your elders told you to do. And still you are beaten. Still you are raped. Still you are terrorized. Still you are hunted. Still you are murdered.

This is the America – née the World — far too many of us know.

Bye, bye, Birdie: Twitter fires Accessibility Team

I didn’t want to write about the Twitter takeover by Elon Musk.

In fact, I was hoping I’d never write about Musk at all.

Not here in my notebook.

Not in a news article.

Not ever.

Ok, maybe the occasional snarky remark, but besides that? No.

But here we are.

On November 4, Musk fired a huge number of his Twitter workforce because he spent too much money on a social media company that he decided he wanted to buy, then didn’t want to buy, then bought in the end for money than it was worth and now he claims he has to fix the fiscal mess that Twitter’s in.

This is why we can’t have nice things.

In the process, he fired the entire Accessibility Experience Team, announced by Accessibility Experience manager Gerard Cohen on Twitter at 1:30 p.m. EST.

This team, some of whom identify as disabled themselves and often engaged people from the disability communities in their work, is responsibility for all the features that makes it possible for those with a wide variety of different needs to find Twitter very usable. These needs come from an array of disabilities.

These features are everything from an easy ALT text for screen readers feature that was oft-promoted to dim mode for low visual acuity. Cohen said in his thread there were more projects in the work.

I’ve used many social media over the years and quit using most of them. I’ve also had a few web sites and worked with a few designers. I’ve worked with a number of content management systems (CMS) and I can say that I found Twitter’s accessibility tools extremely user friendly on the creator end — like adding ALT text — and on the user end, when viewing ALT text. And it’s not always that way. (I’m still catching up putting back in the ALT text, one of the many broken things, since the Great StacyKess.com Goes Kersplat Because of Incompetent Web Host of October 2022 — but that’s another story for another time.)

I am very concerned for the people of the Accessibility Experience Team, their work and for those of us on Twitter they welcomed with amazing user tools.

I don’t know what will happen to Twitter without an accessibility team. Will the existing tools break? Probably not outright. If and when they do break will they be repaired? Probably not. But will new accessibility tools roll out? No. Will disabled users feel a difference without support? Yes. Is this a major problem? Yes.

My hope for the people of the former Twitter Accessibility Experience Team is that they quickly land on their proverbial feet — that they find a place that supports them, their work and their mission. I hope they go on to create even better social media and web experiences for disabled users.

For the disability communities of Twitter, I am wish I had a positive outlook. Social media has been a major part of our organizing since, well, social media became a thing. It’s also how our communities, dispersed all over the world connect with each other. After all, about a quarter of all people — I’ve even heard up to a third — identify as disabled for a wide variety of reasons.

Without accessibility at Twitter being supported, certainly Twitter should not be the social media of choice for disabled communities.

Likewise, as human rights teams, curation teams, pubic policy teams and other teams supporting tools that assist and protect communities have been deeply cut or eliminated, I am beginning to wonder if what the future is of Twitter.

What I do know is it will be resigned to the history books of social media and content sites collecting dust.

Will we remember it with rose colored glasses like MySpace?

Or will we remember it as it going down in disgrace?

Or will it be, “Hey, whatever happened to Twitter?”

I’m grieving too

I’ve thought a lot about grief.

When I was 15, I lost my maternal grandfather with whom I was very close. I woke up at approximately the time of his death — somewhere around 2:30-something in the morning — and could not go back to sleep. The faith in which I was raised had very organized rituals around death and grieving, but it didn’t help at the time.

And I still grieve his loss to this day.

In the past few years, I’ve lost a number of childhood friends to different cancers. In the past few weeks, a dear friend who was suffering from Ehlers Danlos Syndrome (EDS) and its related pain and destruction chose to apply for Canada’s version of physician-assisted suicide. I don’t blame her; she’s been under 100 lbs. from related gastroparesis for years in addition to dealing with the physical pain, organ failure, and so much more. Then, this week, a friend of my family who was like a second mother to me also died after struggling decades with another connective tissue disorder, systemic scleroderma.

I’m grieving the best way I know how: writing about it, distracting myself, humor and more distraction.

A lot of distraction.

I can’t even tweet about the hurricanes, to tell you the truth, because for the most part it brings back some painful memories that I try to not engage. I’ve been sticking with health news and a few funny things here and there.

I’m terrible at grieving.

Then again, I don’t think anyone can say they are “good at” grieving. We have this idea that grief comes in neat emotions: sadness, anger, denial, bargaining and then we come out the other side. Or something like that. There’s variations. Hell, even corporations have gotten in on the “grief” curve and adapted it to their purposes.

The thing is, grief is messy. Emotion comes how it comes: sometimes all at once, sometimes delayed.

When I was officially diagnosed with EDS, after four decades of living with symptoms of the disease and its related cruelty, I spent the first few weeks elated. I had answers. I had answers after decades of begging people to listen to me, to stop telling me it was all in my head. Then when I came back to my regular health care system with a list of recommendations from the geneticist/EDS specialist but couldn’t get the help I needed because doctors here either disagreed or saw me as a loose confederation of organs, the anger began to set in. The anger lasted months. And months.

And months.

Until it became all consuming.

That’s when I started exploring grief. I bought fresh copies of “On Death and Dying” and “Grief and Grieving,” by the late Elizabeth Kubler-Ross, and I went to an intensive therapy program. I tried to write a book about grieving diagnoses, be they chronic, terminal or both.

It helped personally, but I couldn’t finish my book about grief. (I blame this on the fact that I’ve never written an article more than a few thousand words. A book? Inconceivable!)

Now that I’m personally grieving and that so many are grieving following almost three years of a destructive pandemic, two terrible back-to-back hurricanes, the war in Ukraine, the never-ending civil war in Syria, the proxy war no one likes to talk about in Yemen, and so much more death and injustice around the world that I’m not even listing here, I thought it was time to try writing about grief again.

But all I can come up with is this:

Your grief is valid.

Your anger, confusion, sadness, bargaining, denial, crude humor, tears, awkward laughter and however you are muddling through it are valid.

Feeling it all at once is valid. Not feeling it for a while is valid. Distraction so you don’t feel overwhelmed is valid. Doing the next right thing, proverbially putting one foot in front of the other to get through the day and just breathing is valid.

Just surviving is valid.

Your grief is valid.

You are valid.

You are valid.

Lessons from a rescue dog

Four years ago, I had puppy-fever.

Whenever I saw a puppy, I cooed. I walked unabashedly up to the puppy’s human and said, “May I snuggle your puppy?” I repeatedly, wistfully said to my partner, “I want a puppy.”

At the time, we were living in a crowded one-bedroom apartment graciously shared with us by our 7-year-old dog who my partner had taken in from a rehoming situation only a few years prior and our almost 2-year-old skittish cat that we had adopted from the Humane Society the previous fall.

Let’s be real: It’s their world and we just live in it.

In the time we had been together, his dog became my dog. But wouldn’t a puppy just complete our little family?

“I want a puppy,” I’d say as we snuggled in to watch a movie and a cute little blob of fur waddled into frame.

“Ooooh, puhp-PEEE!” I’d coo as we walked by the pet store’s window display with pictures of baby dogs playing with toys.

One cold November evening, as I waited for my partner to return home from work and errands, my phone rang. “Come to the back door,” he said.

Oh no, I thought, what huge thing did he buy? I looked around the apartment and imagined rearranging for his new indulgence. That’s when I heard strange sounds clattering up the back metal steps.

He swung open the back door and walked in with a gangly puppy, nearly all skin and bones whose paws seemed to go in all directions. I gasped and dropped to the floor. The puppy ran over to me as if he already knew me and crawled into my lap and began licking my face in earnest.

“What’s this?” I asked?

“You said you wanted a puppy,” my partner said, “so I got you a puppy.”

I looked at the wild-eyed thing in front of me. His fur smelled of urine, he was wearing a Thunder Shirt, and every bone in his body was visible – even those under his Thunder Shirt. It would be days later that I learned the whole full story of how my partner picked out this puppy. And for that, I’ll tell it like he – a fantastic storyteller – tells it.

My partner and I both have a dedication to adopting. He decided as we already had one who had been rehomed (and prior to that was a side-of-the road rescue, then a graduate of a prison training program, then an underutilized adoptee) and another who was an adoptee from a no-kill high quality shelter, he would visit “the worst of the worst” shelters: the county pound. He said many dogs – big, medium and little – caught his eye. But there was this tiny strange looking creature in the back of a small cage who met his gaze. Every time he walked by, the dog was barking non-stop. As he and the pup locked eyes, the strange looking dog would stop barking – just for a moment.

“I’d like to see that puppy, please,” he told the shelter attendant.

The attendant – a 6-foot-something burly man with a shaved head and muscles as big as my partner’s head – told him, “That guy? You don’t want him. He’s crazy.”

My partner persisted, he related to me later, and the attended gave in, picking up the tiny dog, a golden miniature pincher, under one arm.

“This guy is crazy,” the attendant ominously warned again. In fact, it turned out, this puppy had already been adopted twice and returned to the shelter after only a couple days each time. A two-time reject. Before that? The scars on his body and in his behavior told the story: there was a healed tear in his ear and old scars everywhere, and they had the dog labeled as a year old. The dog, full of “behavior problems” and deemed unadoptable, was likely to be euthanized.

In a meeting “room,” the puppy bounced off the walls, occasionally pausing in my partner’s lap. But he said, he saw something in the puppy, maybe that he needed the kind of radical love we could provide, that we could provide him with a chance to live or even that the strange creature could provide us with something.

“We’ll take him,” my partner told the attendant.

Again, the attendant warned him off. “This guy? This guy is crazy.”

“Great,” my partner said. “His kind of crazy will fit with our kind of crazy.”

With a small payment and a name and address, the puppy was ours.

At his first physical exam at the veterinarian, we soon found out that dog was younger than a year. We called in a behavioralist and learned it was likely that he had experienced head trauma. The pound had sent him home on trazadone; we worked with first one vet and then another more familiar with traumatized and injured dogs until we came up with a medication regiment right for him. Still, what we knew about our dog is that what he needed most was time and love.

In that first year, the puppy learned how to eat and drink out of a bowl, how to walk on a leash, how to properly potty outside, to bark a whole lot less and how to play. It took two years to get him up to a healthy weight.

Last year, he finally started becoming more comfortable being apart from me, going off to his dog bed on his own to nap whenever he wants.

This November will mark the fourth anniversary since we adopted the unadoptable puppy. He physically and mentally still acts a lot like a puppy. We continue to have trouble with barking inappropriately. He still plays like a puppy. He still gets scared like a puppy. He still flops his legs around like a puppy. He even still looks like a puppy.

In these years, as a family, we have also learned a lot of patience and unconditional love. This dog will not develop on anyone else’s schedule. He is joyous and loving, and very smart, but he is going to grow up on his own timeline. And we’re not going to rush it in anyway.

I’ll get my booster, but I’ll continue to wear my mask too

The U.S. Food and Drug Administration approved the bivalent COVID booster shots Wedensday – a reformulation split between the orginal mRNA vaccine formula and an updated version targeted to the most recent Omicron variants.

It’s a formulation long overdue. Afterall, Omicron BA.4 and BA.5 swept the world this summer. But it’s a formulation that offers no gauruntees since we don’t know what variant will come next; if it will be in the Omicron line or if it will escape the immunity provided by this booster; the previous vaccines and by previous infections. And that’s why I will continue to wear a good fitting mask that provides fine particle filtration such as an N95 or similar.

I won’t go so far as I did the first two and a half years of this pandemic. You see, I sat out the beginning of COVID as a reporter. In fact, I also sat out most of 2020, 2021 and 2022 from society.

I tend to get sick easily, and despite my strong belief in vaccinations, I don’t have a very good history of seroconversion. It often takes multiple boosters or full repetition of vaccine series for my body to show immunity from a vaccine.

My household took extreme cautions early in 2020 to protect me: good masking beginning in March 2020, isolating me as much as possible, etc.

In the last couple of years, we learned that while my risk for catching COVID isn’t necessarily higher because of my diagnosed disease, Ehlers Danlos, or its associated complications, I am at a higher risk of complications from COVID because of some of my complications such as multi-valvular regurgitation and aortic insufficiency; heritable thoracic aortic aneurysm and dissection (hTAAD); and gastroparesis and micro-deficiencies. Additionally, if I did catch COVID, I am not eligible for the drug Paxlovid due to a drug interaction with my cardiac medications.

My partner and I finally caught COVID in the first days of June 2022. We don’t know where we caught it. It could have been one of several appointments where I was the only masked person in the waiting room. It could have been one of his side gigs where he took off his mask to drink something.

The first day of symptoms I excused as just having an bad day; EDS and its complications can leave me feeling drained sometimes, and joint pains are common.

The second morning, I lost my voice. Vocal cord troubles are something that comes anytime I have a terrible upper respiratory infection. (Remember: connective tissues are everywhere, and if something such as a respiratory infection irritates or inflames my connective tissues such as those involve in my vocal cords, my voice is sure to be affected. I took a rapid antigen test (RAT), and it immediately turned positive. I woke up my partner who also took a RAT and got a positive result.

I phoned my internal medicine doctor, who said he’d need a few hours to figure out exactly how to get me some treatment; in the meantime, if any of my vital signs or symptoms worsened, I needed to get to the emergency room.

By 10 a.m. that day, despite my heart meds, my heart was racing and my blood pressure was sinking. My pain level was rising, and my chest hurt from my rising heart rate. My partner and I knew it was time to take me to the hospital. I grabbed my rapid test and my iPad (to work as my voice) and he drove me to hospital, where he dropped me off at the ER entrance at 11 a.m. not knowing when he would see me again.

When I made it to the nurse check-in desk, I showed my positive RAT, motioned to my chest to indicate chest pain and to my throat and mouth to indicate that I had lost my voice. She checked me in and led me back to a crowded triage area. I was called back, and showed the triage nurse a short SBAR — an old nursing acronym for situation, background, assessment and recommendation — that I had typed up about myself. The nurse took my vital signs, and I was sent for some blood work and an ECG. Then, I was told to go wait in a crowded, mostly unmasked waiting room. I pulled my mask tighter, not wanting to infect anyone.

As I waited hour after hour, my phone would occasionally ring: a nurse checking on me, letting me know they couldn’t have direct contact with me since I had an airborne infection; registration checking me in via phone from a room 10 feet away where they were checking in the other patients, apologizing because of “airborne precautions.” But there I sat, in the packed waiting room, where some patients were forced to stand while they waited.

As I waited, my headache grew worse, and my joints grew to a level of pain I had only felt once before – years earlier when I had been infected with H1N1. I began to wonder if I was finally feverish. I walked up to the front desk and asked the check-in nurse for acetaminophen. She called me a few minutes later and passed a medicine cup and small cup of water through the opening in the glass.

Sometime around 9 p.m., I was finally called back; an isolation room was ready for me. I showed the nurse, followed by the resident, then the attending my SBAR, and offered to type up answers as it was becoming extremely painful for me to try to use my raspy whisper of a voice. The resident asked me if I was certain I had COVID and not streptococcus. I showed the positive COVID RAT and used my remaining voice to explain that I’d had strep throat so many times — four times in a single year once — that I could assure her this was not strep simply by the way it felt. Still, she was unconvinced. She wanted to order a strep test.

Instead, they ordered another RAT and then asked me more about my current conditions. I carefully — my remaining voice barely audible — explained EDS, the cardiac complications and that ivabradine is contraindicated with Paxlovid. I said that my chest hurt and that this happens when my heart races for long periods of time, and I am on ivabradine to try to control inappropriate sinus tachycardia. I suggested that perhaps she or the attended consult with my congenital cardiologist or EDS specialist, either of whom would be happy to help in this situation. I said even my internal medicine doctor would not mind a page at this hour if it meant I get good care. I was told they didn’t need to page anyone because they are the ER.

Finally, after much discussion between the attending and the resident, a course of monoclonal antibodies (MAB) was chosen.

Shortly after midnight, after the shift-change for the doctors, I was given the MAB injections. “You’ll feel better in 3 days or so,” the nurse told me.

By this time, I was in so much pain, I could not sit still on the gurney. I had to pace and move around simply to keep from my joints freezing. The nurse re-checked my blood pressure, heart rate, pulse ox and around 3 a.m., I was released to go home.

When I returned home, I rechecked all my vitals, including my temperature: 103.9. I had already maxed out my acetaminophen for the day, so I cooled myself with a cold shower.

That’s the last thing I remember for about a week.

My partner recalls that there was much of the week where I was so sick that he thought I was dying, but he didn’t want to take me back to the ER because they had released me with a high temp, they didn’t know what to do with me when I was there, and he knew that per my wishes if I was going to die, it sure as hell wasn’t going to be in a hospital without him by my side.

For the first couple of days, he said I didn’t get out of bed at all. For the days after, I only got out of bed for broth. After that, I began trying to be out of bed more, but he tells me, I wasn’t very present.

My memory starts back in the second week of COVID. My partner was on the mend by this point and back to exercising. I was trying to get out by helping him walk the dogs around the block, but it was slow going. Things beyond that are a little spotty.

By the third week, my mind was active, but my body was a little sluggish. My brain was ready and raring to go, but I was still coughing, aching and tired. I was frustrated. My partner told me that I had told him, “As long as I don’t die, end up on a ventilator or get long COVID, the monoclonal antibodies did their jobs.” I don’t remember saying that but I’m fairly smart, so I can believe I said it.

I’m happy to say I survived COVID, and it seems that I have no long-term consequences. But I fear for another infection.

So while I don’t know how protective the new booster will be against any future infection, I do know I will get it because I’m taking the chance that it will help. But I’ll also be wearing a high quality good-fitting mask because I don’t want to struggle to survive COVID again.

It’s more than just a threat

As a health reporter, I’ve spent quite a bit of time in hospitals.

For the brief time that I practiced nursing, I took many days off my life in the hospital.

And I’ve spent too much time in the hospital as a patient.

When I read this morning about the bomb threat called in not even 24 hours ago on Aug 30 to Boston Children’s Hospital, I reacted viscerally.

The police identified the threat as being just that: a threat. Beyond that, neither the hospital nor law enforcement is saying much other than the investigation is continuing. There is much speculation that because of so much recent maligned attention from TikTok star and social media personality Chaya Raichik who goes by “Libs of TikTok,” conservative talkshow hosts, rightwing bloggers and even conservative Georgia U.S. Rep. Marjorie Taylor Green to Boston Children’s care for transgender patients, the threat could be retaliation for the hospital’s care for transgender patients.

The bomb threat was called in at 8:05 p.m., at a time when emergency rooms are bustling, night-shift nurses are doing their evening rounds, and families are saying goodnight to their loved ones who have inpatient stays. At Boston Children’s, the clinics are long closed by 8 p.m. and the visiting hours end by 8 p.m., so it was the staff, patients and guardians who were staying with patients overnight who bore the weight of that bomb threat, though I’m certain staff took great pains to put patients and families at ease. Local media reports streets around the hospital were closed off for nearly two hours while law enforcement investigated. Fortunately, no physical threat was found.

First, some facts: Boston Children’s provides trans affirmative care to trans youth under 18. This consists of puberty blockers, a reversible drug option; psychological and psychiatric care, and as the child enters late adolescence discussions on more options such as hormone therapy. The hospital provides genital surgical care for trans patients over 18 and will provide in rare cases consultation for patients 17 years old.

Rumors have swirled as to what kind of diabolical things the hospital might be doing to children, but there is nothing diabolical about saving children’s lives. Gender affirming care is the standard for children under 18 and that includes exactly what is listed above: therapy, allowing the child to come to terms with where they are on the gender spectrum (male, female, nonbinary or gender non-conforming), and providing puberty blockers if necessary. Then, as the child ages into late adolescence and turns 18, providing additional care as necessary: hormones, and top/bottom surgery. Not all trans, non-binary or gender non-conforming people choose hormones or surgery. Some choose one. Some choose both.

Not to minimize this part of Boston Children’s services, but this hospital also provides a spectrum of care from life-saving transplant surgeries to every day to treating cancer to treating childhood sleep disorders to working with children who experience chronic illness.

Still, last night and in the last few months, extremists haven’t cared about any of that. Or about the fact that gender affirming care – such as simply using a child’s proper name instead of their deadname – is life-saving care as studies have shown. Such care reduces suicidal ideation and suicidal behavior among trans youth.

No. Instead extremists have only cared about rumors that doctors are doing nefarious things that I don’t care to repeat here. And that brings us to last night when a place filled with doctors and nurses and respiratory therapists and pharmacists and aides and cooks and janitors all serving the tiniest and most vulnerable in our population was threatened because of one among many clinics they have, because of one type of care they offer among many – in a state where it is perfectly legal in a country where we speak of individual freedoms to live our lives the way we want to live our lives.

As a health reporter, I wonder if perhaps my profession has failed to properly report on what trans affirming care actually includes while allowing conspiracy theorists to let their imaginations run wild.

As a nurse, I’m angry. You threatened healthcare workers. These are my people. You threatened my people.

As a patient whose care team includes a few doctors who practice such specialized care that they see both children and adults, I am heartbroken because I worry: Will their facilities be next?

Mostly, what I want is for this to stop. There is no need for violence or threats. A children’s hospital is a place where the whole team does everything – and I do mean everything – possible to put patients at ease and to save children’s lives. To this staff, every child is a gift, and they will go to all lengths to do what is best for the child. You may not agree with that what or how the hospital does that, and that’s your right as an American. But when people start committing crimes – such as calling in a bomb threat or worse – we’ve crossed a line into into a dark place.

Where do we go from here?

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