Flowering Among the Weeds – Repost

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I originally wrote this blog entry as a guest blogger in August 2016 for the Arthritis National Research Foundation and shared it via this blog.

As the guest blog posts are no longer available, I thought I’d repost it fully here, especially due to the pandemic’s continuing impact and a need for this personal reminder:

Flowering Among the Weeds
By Kristin Seaman

Sharing your life with a chronic disease can be extraordinarily discouraging. It robs us of who we thought we were and what we hoped to be; healthy, normal, and full of youthful vigor.

The health once known now riddled with weeds of disease emerging from beneath our shell. The aching inflammation takes over and serves as a constant reminder that life will never be the same as it was before dis-ease.

There will be the impossible days, along with those awful hard days, even some seemingly better days, hopefully followed by some wondrous days that leave us feeling less guilt about coping with it all.

But even during those most impossible days, there is a strength rooted within you, just waiting to bloom. It took a while for me to dig around in the dirt and find it buried under all the weeds. There were times I even doubted that it had survived the bone chilling nature of my disease.

But there that little bulb was, nestled deep, stubborn enough to still sprout fire.

It all started at the point in one’s youth where you really start to look forward to adulthood and make plans for the future.

Instead, I found myself and everything I knew crumble from the inside out into rubble.

Void of all hope that I could ever hold myself upright again as a bright shining jewel of health, I felt reduced to aching stone and aged before my time.

At the age of sixteen, I was diagnosed with Rheumatoid Arthritis. Rh positive, nodules sprouting along my knuckles, with joint deformity staking its claim to weaken me.

In an attempt to make sense of my diagnosis, I felt that I must have done something to deserve this punishment.

Was it from misbehavior? Had I spoken back too much? Surely it had to be from the chocolate I had sworn to give up on Lent, but ate anyway. Was it me? Something I did or perhaps even didn’t do? What could anyone have done to deserve this?

If I did something differently, anything differently, would it stop and let me have my life back?

I felt like Cripple Van Winkle.

To wake up one day and find everything you knew and trusted about your body has been rewritten in a language that no one can exactly decipher, a new code with origin unknown.

I first noticed that something didn’t seem right during gym class. It was halfway through the Fall term, the point where range of motion should be increasing and yet I noticed a new resistance and fatigue.

Throughout the school year, this disease nestled deep into my joints to make its nest, spreading around to wrap up my body in its wings of constant pain and inflammation.

It hurt to move. It hurt to remain still in this cocoon of disease. It simply hurt too much to even want to live, let alone live with it.

Most nights, I sobbed myself to sleep. I wanted so much for the sharp and dull aching to stop, even if it meant not waking up.

I thought I was weak. I felt like a teenaged feeble freak with nothing to live for anymore

Then in my early twenties I developed an infection that nearly killed me. Only then did I start to unearth the courage that Rheumatoid Arthritis gifted to me. A hardy bulb thought dormant with roots reaching deep into my heart and soul.

The doctor informed me that I was not expected to survive that night in the ICU. I found myself fighting to dig in and hang on despite the odds stacked against me.

After multiple tests, doctor visits, hospitalizations, and my heart opened up twice for repair, I was still alive and kicking.

Not only could I hear it thanks to my new ticking heart valve, but I could also feel it due to the Rheumatoid Arthritis. I still ached, taking a newfound comfort in my dis-ease. I made it. It finally felt good again to be alive.

The body is a garden to tend dearly, no matter the changing conditions nature rains upon our health.

We often wish so much for a restoration of our previous physical health that we forget the strength planted long ago in our very human nature.

More than physicality, it takes an inner persistence to survive in this world.

At the start of this journey, I viewed Rheumatoid Arthritis as an incurable curse, poisoning me with destruction from the inside out.

But over time, I found my original judgement was not only unfair to myself, but even unfair to my disease.

The Rheumatoid Arthritis planted the seeds of strength I needed in order to bloom in spite of it, a fiery flower among the weeds.

Busy Bones

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I am still alive…

to the chagrin of my neighbors on NextDoor.

Now, an update to a macabre little free-write from a November 2018 post.

Enjoy…

Busy Bones

She was running out of room.

Where could they go?

The skeletons were all over the house!

Pushed to the back of closets.

Stuffed behind the couch.

Hiding under beds and behind doors.

Was there anywhere else they could go?

The cellar long ago had ceased being an option.

That’s where she buried the bodies of her ghosts.

It was packed down there, stuffed to the gills.

A festering tomb to behold.

No, the skeletons simply would not fit!

The attic was out too.

That’s where the ghosts liked to roam.

Up in the cobwebs, whispering from corners.

They would resent the intrusion.

So many skeletons…yet no place for them to go!

Halloween was too far away to use as decorations.

If she put them out now, there would be questions.

Perhaps it was time to start somewhere fresh…and empty?

And SELL!

Insufficient Storage

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Maybe I should write a story about sleeping one’s life away because of demands on it from my disease (need for napping was one of the first noticeable symptoms at 15), depression/antidepressant. and existing in a pandemic. Social interactions drain me more than before since my tolerance from 5 days a week is gone.

It could be nonfiction. Or fictional. A fairytale.

I tell myself “oh, it’s just the 4th vaccine this weekend” but honestly, I don’t feel it. My Humira wipes me out way more than these vaccinations.

And Jeff will often let me sleep, unless I have specific can’t miss plans. He knows I need the rest. I know I need the rest. But i just resent myself for needing so much rest.

This demand for sleep is a hidden cost of being immunocompromised, living with an incurable and disabling autoimmune disease.

Selfish people in this pandemic tell me and others like me to “just stay home” if we don’t want to catch Covid-19 and so that they can be selfish entitled assholes in a world designed for them and their entitlement.

But the thing is, I’ve always stayed home on my “time off” from work. And now I even stay home all the more, because work allows for it.

But it’s nice to leave the house once and again to pretend that I’m a normal person, who gets to do normal things.

They can’t stick us in asylums to forget about anymore.

I just keep sleeping the days away, hoping to wake up in a better world.

It hasn’t happened yet.

But maybe tomorrow….

Normal.

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I hate my disease. I hate having to be forced to give up so much time living with it, dealing with it,, treating it, pretending to be well when I’m not, especially in this ableist society.

I have my disease because an asymptomatic virus triggered something in my immune system to go haywire and turn upon itself as the enemy.

So now for almost 27 years from the promising age of 15, when you have your whole entire fucking life out ahead of you, I’ve had to fight and struggle against my own body, against the disease that too over as it has tried to destroy itself, Me, from the inside out. Then and now until the day I die.

But go on about how vaccines and masks are too much or too difficult or how they rob you of your “freedumbs”…

You want to know what robs you and your children of your so-called freedom?

A fucking virus that cares only to destroy from the inside out followed by a fucking disease that cares only to destroy from the inside out. And you fight an often losing battle trying to find the right treatment, trying to keep up with enough treatments to keep the autoimmune disease at bay. But just like a virus, autoimmune diseases are clever and find little ways to sneak through, forcing one to increase treatments or change treatments.

You want to complain about vaccine side effects? Look up the side effects for my fucking Humira and then get back to me. We aren’t doing flips and cartwheels afterwards like the commercials indicate. I’ve utilized this treatment since 2006 and one day, I know it will fail me. I’ve had to increase treatments to control my disease activity.

But go on and complain about how “you can still get Covid-19 if vaccinated.” Your immune system would have a fucking chance to fight it and protect your immune system’s health and future instead of being compromised to the point of triggering a destructive autoimmune disease, so get vaccinated.

It isn’t just imminent death and illness from the virus that you should fear but also the long term effects of surviving the virus.

Where’s your freedom when you’re seeing a specialist to find out why your body hurts and you can’t move easily, freely?


Where’s your freedom when you have to start treatments to control your immune system and hinder disease activity?


Where’s your freedom when you have to deal with prior authorization bullshit and insurance companies?

Where’s your freedom when you have to find copay assistance programs to afford your thousands of dollars treatment?


Where’s your freedom when you have to dedicate time to your treatment and its recovery?


Where’s your freedom when you’re too ill from side effects of treatment to do anything you want or anything that you had planned, forced to watch the world pass you by as you fight a battle against a disease trying so hard to destroy you from inside?


You want to complain about hating this “new normal” of the pandemic and quarantines?


Try the new normal of an incurable autoimmune disease and the new normal of a chronic disabling health condition.

Where’s your motherfucking freedom then?

Feel free to share. Maybe it will spare one child from losing their healthy immune system like I did at age 15..

Mechanical Heart Strings – Pitch Concept

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I wrote this for a Pitchapalooza virtual event recently. I wasn’t chosen at random, but I figure I can still put it out there.

A crabby hermit clambering through different shells.

Pretty shells, gritty shells, broken shells, stubborn shells; a continuous struggle against the shells that hold us and the shells that expose us.

Shells echo sound, often the crashing waves of the ocean…though now, the crashing waves of my life.

But what if the sound echoed from my heart? Not a beating heart, but a ticking one. Ticking soft, ticking loud.

Every tick of time marks a moment in the stories of my life.

Some shells may tick louder than others – Every tick is solid in its impact, reverberating though time, like a note plucked on a guitar string.

My heart’s strings, sounding out the stories of a lonely child, multiple relocations, a new country, the cruelty of peers – both in youth and adulthood, the chronic pain of a new normal, the nevermore of what you expected to always be, how passion lies and heartbreak subsides, the feeling of Death as It claws near but releases you to start anew, how it is to be a woman but not a mother, a woman but not a housewife, and a woman with little care for tact yet a heart full of empathy for what truly matters.

Because she knows how every shell has its own echo; every form that holds each story was designed to fit differently and reveal its truth brilliantly.

Pick up and hold these shells as you would a book laid open in your hands.

Do you feel the echoes as the moments of my life tick loud?

Soak up the cacophony of ticking memories.

It’s only my story plucking at your heart strings.

The Privilege of Turning Away

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It seems that I have lost a fellow Rheumatoid Arthritis friend over my blunt, informed, and unapologetic Anti-Racism stance. Though Durazo might put it another way…

Someone who I fully believed in, especially as they navigate their life with this horrible disease, whether a new problem or new journey. As an old soul with this never-ending disease, I know it helps to connect with others suffering from this same bullshit. Because it never goes away really. It just looks for sneakier ways to attack from inside.

Oh, what does that remind me of? 

I don’t recall saying anything rude nor truly problematic. Those who know me in real life or even long and well enough on here (but especially in real life) know that I’m capable of saying some shit out of nowhere. Zing! Absolutely brilliant stuff. Think like Wednesday Addams deadpanning. Wide eyes and dropped jaws abound.

But the people who know me in real life usually understand why I don’t sugarcoat things, especially when it comes to the issues of social justice and Anti-Racism. Especially those who have become my friends through 14 years of working together. Many of them see the problem of oppression within our society and community. Some actually live it. No matter what they do or where they go, they’re forced to experience racism. 

There are things I can get away with that they can’t because of my white privilege, such as calling out and naming a coworker’s and their racist action publicly, to HR’s chagrin. Because of that blindingly white privilege, there are many things that I have no room to judge any Black person on, whatsoever. Today’s lesson involves riots and looting.

Us white people have no room to judge how Black people feel in fighting for their lives, especially when it comes to the particulars of how they have to fight. I’m sorry that so few people comprehend this about Black Lives Matter. I’m not sorry that Designer stores were damaged during the urgency of protesting Black oppression. Also not sorry that I refuse to judge, again because that’s not my lane to ever judge within. Period. Not sorry that I (repeatedly) posted information to educate on the existence and psychology of “riotous behavior”.

However,  I am sorry that I held back on responding more, if at all, to their posts about the riots. Calling out unfair and privileged judgment. But I figured my Facebook posts (incessant as they are) would help do the work for me. I didn’t argue on their page since it’s often promotional for work in various industries. I generously respected that due to the shared path of RA. I rolled my eyes and scrolled right on past, tucking a little red flag away for the time being. I continued posting Anti-Racism information. 

Probem is…I notice everything. You just told on yourself. I see what you did there. Most might just unfollow, because as mentioned before, incessant posting sessions. And just like some in my family, after I had called out a problematic family member (racism and misogyny) for which excuses are often made; friends but not really…not anymore, since I made them uncomfortable, angry, bothered.

But that’s all right. They’re just telling on themselves. Just like you. It’s funny though. Us RA patients, we’re so used to being uncomfortable. In our bodies, from the physical pain. Uncontrollable, random, hovering always, threatening to ruin everything. I’m okay with being uncomfortable, at least more than most. I can sit with it. Acknowledge its existence. Unpack it and learn from it. But I tend to forget that not every RA patient, not every white person, is as seemingly capable or as comfortable nor as empathetic. This is a disease inside of us, destroying us from inside out. We pursue treatments to help ourselves and curb its destruction. We’ve got options available and we doggedly pursue obtaining them because we want to stop the disease, the destruction, the whole process destroying us from inside out.

But what happens when we don’t have options? Or when those in power over our access (insurance companies or government agencies, laws, etc.) stand in our way? We want to fight them. Make them listen. Get them to help us now. NOW. Not tomorrow. There might not be a tomorrow. It hurts so much. Well, what if they didn’t listen? Didn’t care? Negated and rejected us, our needs, our right to be comfortable in our bodies, our skin, at every fucking turn? And not just once, but repeatedly. Day after day. Environment after environment. Situation after situation. Generation after generation. 

Would you be calm, content to play by their rules all the time, even after having learned already that they don’t fucking listen, they don’t fucking care…just another body, another annoyance, something to reject. The little rules and policies that work for them will never work for you, because it’s designed that way. Designed to work against you. Designed to destroy you from inside out, a constant state of inflammation, burning and eating you up until there’s nothing left but desperate rage to be heard, to live, to be valid in the eyes and hearts of them all.

They want to destroy you. But you don’t want to be destroyed. You want it to stop. You want to live, to breathe. But you can’t breathe. Not anymore. You can’t hold that fire burning inside you, burning up all of your oxygen. Not anymore. You can’t let it destroy you ANYMORE. So you take the fire burning inside and burn it out through your body into the world, onto what they care about. Things, not people. Appearances, not humanity. Stores and their facades. Image and privilege on a pedestal. 

So when you judge their riotous behavior, you judge their right to be so justifiably enraged by how society is specifically designed to mistreat them in life, day after fucking day. Generation after generation. 

You expect people fighting for their lives to do so politely? Fuck off with that bullshit. So many Black lives have been destroyed. All killed simply for existing. Beating hearts slaughtered over and over, day after year after generation.

Burn that whole motherfucker down.

Pillage

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I’m really tired of healthy people bitching about the inconveniences of face masks and social distancing during a pandemic of a viral illness. At least y’all get some warning and know it’s around.

With chronic illness, it comes out of fucking nowhere and one day, you’re just sitting there wondering why you can’t bend your damn fingers. Why it hurts to get out of a chair. Why it hurts to lay in bed and you can’t sleep because it’s constant. And there’s no fucking cure. You’re stuck with a new normal and life is never again the same.

June marks 25 years since my diagnosis. Next fall season will mark my 26th year. I went from Fall to June and was becoming a cripple, at age 15/16. And people wanna complain about the pandemic new normal and wearing a face mask for an ounce of prevention.

Do you know how many of us wish we could have prevented our chronic incurable painful disease? So many people have already been robbed by Covid-19…patients, families, dead or injured. Why can’t anyone fucking realize that you don’t ever get that shit back?! It’s priceless. Once it’s gone, it’s fucking gone forever.

Do you really want that kind of new normal? The kind with no new memories? The kind full of tears and dust in the wind? The kind of normal where you can’t really breathe, either because you’re sobbing from your loss so much or because your lungs are so scarred by viral disease.

You better take that last deep breathe now, it’s going to have to last you forevermore. Remember, there are no guarantees.

But if you had that one chance, just that one chance to stop it…would you?

I’m here to tell you that you should. Don’t rob yourself into being devastated by death or disease.

And you will feel devastated.

That I can guarantee.

2/23/2020

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Running feels so free to do. It’s just you, your body cleansing itself from heart, muscle to mind. Pumping your legs. It feels like this freedom within the body. It honestly feels so good. And it’s so healthy for you. And Ahmaud couldn’t even have that. He couldn’t even have a nice run in broad daylight on a neighborhood street because 3 racists refused to see his humanity.


In those moments before the murderers crossed his path, he must have felt so free; In the wind, breathing deep. Yet he wasn’t free to run. He wasn’t free to deeply gulp in the fresh wind as he pumped his legs, feet striking the ground of the supposed “Land of the Free, Home of the Brave”. Imagine how good he must have felt when he started his jog. The wind in his face, body free and moving forward with his strength burning from inside his muscles, free to breathe. Then imagine his horror when he saw that truck, parked and waiting for him. You can see he is strong as he runs and changes course. You can see it as he is forced to fight for his life. But racism is stronger, disgustingly so. Racism is insidious. It kills with abandon. Racism killed #AhmaudArbery.


Every bullet was filled with hate. It took his breath away forever. No more running with the wind hitting his face, inhaling that fresh sun-filled air deep into his lungs. No more feet striking the pavement, pushing forward to free his own body and mind against the world. His life and body were taken from him by hatred for his life and his body because of the color of his skin. Never mind that his muscles and his bones were born human. He was his “ancestors’ wildest dreams,” as their quote goes…and then the horrifying nightmare of racism reared its ugly head to lynch him.


All he wanted in those moments was to run free in the wind. To run free, alive. Not run for his life, as he was forced to do in the end. But to run and be alive; feel his life, pumping through his legs into his heart, breathing deeply, exhilarated by the joy of being alive. When running, the movements feel like freedom. Fully alive. But racism doesn’t care how he felt running free in the wind. It hates that he’s alive. Racism slaughtered him to the ground, no longer free to live those “wildest dreams” of his ancestors, as the quote goes. There, one moment. Extinguished in the next. Racism kills dreams. Racism killed #AhmaudArbery.

Racism protects his murderers and then condemns the life of Ahmaud; a life running free in the sun and the wind, breathing in deep the freedom to be here now and soar with his own power pumping from his muscles through his feet. Racism stopped his feet. Racism stopped his heart. Racism took his breath and lynched him in broad daylight, slaughtered onto the street, treated like an animal and not as a human being. But he was a human being. Ahmaud’s whole life, as human as you and me! His murderers though, are monsters of humanity. They don’t deserve to be recognized as human “beings”…They don’t belong among us. Though they are…there are others like them among us, for racism is insidious. It hides and lurks in humans, in thoughts and rationalizations, not always buried deep. It’s on the tip of their tongue, waiting to be expressed, exposed, explained., treated as though innocent and innocuous. But racism isn’t innocent nor innocuous. Racism kills. It kills humans, people, friends, neighbors, loved ones, family, children, adults, human beings! It kills without remorse, repentance, reparations. Racism kills with impunity. Racism killed #AhmaudArbery.
#RunWithMaud

The New Normal

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This current “normal” is what it’s like to actually reside inside the mind and heart of an immunocompromised patient. People standing too close to us in public. Now you see why we get cranky about it. Why we glare when you stick your arms and hands in our faces to grab something or when you hog the fucking aisle so that we can’t avoid breathing you when we finally have the energy to run errands. We’ve known how to open doors using different contact methods,  to avoid pain and exposure. 

Your germs have never been safe for us. Your colds. Your flu. Your oh so minor symptoms that you bring to work. Your fear of vaccinations. Your fear of the immune response kicking in. Your inability to flush the fucking toilet completely or even wash hands thoroughly. Crowding around us because you want in through the doors, buildings, or transportation.  Being depressed and disappointed for missing out on things because of our conditions,  medications,  and need for rest and recovery. 

This current reality? This is what we always have to think about, how we’ve lived, this entire time that we have carried our conditions within us. Always thinking ahead of exposure too. Because our lives, our health, our immunity has always been at risk.  Our treatments put us at further risk. You think you’re afraid of getting sick and dying now? Where have you been?

This normal is not new to us, at all. You think you’re tired, especially in coping with these changes to a new normal now? Try doing it for years. Fucking decades. And there’s no cure. No fucking cure for so many of us. All we can do is wait, rest, and try to get through the next day because that new normal isn’t going anywhere. Or hope that a ne medication will make a difference.  But they still have side effects.

Everyone’s treatment and response is different.  You can see the drug companies try to sell us the cure of a Utopian dreamland in which we can once again grasp that normal self who existed before crippling disease. But it’s a lie. A damned illusion.

Nothing will be the same, ever again. There will be another new normal. Accept it. This world can only carry us forward so much before it’s too late for to halt the damage of our social inflammation. We’ve been sick for so long, we don’t even recognize the truth in the mirror. The human disease has always been there. Nothing will get better for us if we continue to ignore the symptoms. You can try to fight it all you want. Believe me, all of us immunocompromised patients have been there. But it won’t cure anything. Now do you understand what it’s like to ache constantly and want to live life like you used to? But yet, you can’t.

Haunt

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I wish I never found out that I’m infertile.

Wish I’d never thought of having one kid at all.

It’s been like the death of me for so long.

It entered my mind with Jeff, because he’s so good to me.

He’s so funny.

We were at his work picnic event and someone’s bald headed baby was crawling around on a blanket with a dog.

And I thought maybe we could have that…

But that was before my cardiologist confirmed that pregnancy could kill me and a baby.

My warfarin, which keeps my mechanical mitral valve functioning efficiently, could irreversibly damage and deform a baby.

If blood volume rapidly changed, as it does throughout stages of pregnancy, my blood could become too prone to clotting, risking my valve throwing a blood clot.

Or I could hemorrhage.

That was before I found out IVF and surrogacy isn’t an option because of premature ovarian failure.

I wish somethings didn’t fail me in life.

But this body is the only home for me to live in.

It’s a haunted abode.