Fall Risk Yellow

ID a white, female presenting person with chin length dark hair and dark eyes. They are wearing a yellow hospital gown with red around the neck and making a face at the camera.

Four years ago, almost to the day this post is being written, I went into the hospital for the first of several stays to deal with a health issue that had begun a few months before. That stay and those subsequent (including a later surgery), as well as the rest of my treatment and recovery process, left me with a lot of medical related trauma I still struggle with nearly daily. I actively try to avoid thinking about that time, but as the anniversary comes around flashbacks become more frequent. One memory that sticks with me is the gown I wore during those first few days.

It was yellow, with a red stripe around the neck. I remember thinking it was actually sort of pretty, as far as hospital gowns went. I mentioned this to one of the nurses, only to be told that was the gown they gave to all patients who were fall risks. One of my numerous armbands had the same warning printed on it. To them that’s what I was, a fall risk.

In the moment I couldn’t help but think how funny it was that I had been labeled as such. A full-time wheelchair user for nearly two decades, my ability to walk is more myth than legend at this point. I’m well aware trying to walk would be disastrous (if comical), so all the reminders seemed a bit much to me.

Of course the warnings weren’t for me, they were for the people who might come in contact with me. They let hospital staff know immediately what I was, or wasn’t, capable of. It remained up to me to explain my needs in full, which by and large went well enough. But the initial visual cues of the gown and armband helped lay the groundwork.

In the years since that hospital stay, I’ve done a lot of healing. I will likely always have scars from that period of my life, both physical and mental, but I hope with time the pain that caused them will fade. In the meantime, I’m left trying to reassess my capabilities and my needs, as well as how best to explain them.

I’ve thought about that gown and its significance often in the last few years. I’ve come to wish I had something like it to convey to the world my fragility, something that explained my needs without me having to reopen old wounds. I’m not sure there’s anything as painful as, accidentally or intentionally, tearing open something that had been on its way to healing.

I am so tired of bleeding to heal. But I don’t know any other way. It’s not as if there are grapic tees or outgoing messages for these situations.

I haven’t really been doing nothing, but panic attacks aren’t polite conversation.

Hi sorry I missed your call, I was dealing with a flashback. It will definitely happen again.

Maybe I’m putting too much emphasis on what I think people’s expectations of me are. That comes from a lifetime of society devaluing the accomplishments of people like me. I’m left feeling like I’m not allowed to not participate, contribute, prove my worth somehow. But I can’t, at least nowhere near consistently; and there’s no easy way to explain that. There’s no easy way to tell people that in so many ways I am still a fall risk.

My ability to function varies. My definition of function varies wildly. I am far from reliable currently, and I’m not sure that’s going to change soon. I’m not sure how much I actually want it to.

I’m writing this from a room I rarely leave, surrounded by comfort objects, anxiety aids and stim toys, most of which show their use plainly. This is my safe space. I’ve healed here. I’ve let myself hurt here.

The thought of venturing too far or too long outside this space is honestly a little terrifying, and would be global pandemic or no. That might change some day. I think I probably need it too. There are things I miss about the world, people I’ve been too long without. Not to mention I miss creating trouble away from my keyboard. But for now I’m still a fall risk, and the world doesn’t know how to catch me.

An Acquired Bitterness

There’s a, possibly misattributed, Vonnegut quote that talks about not letting the world and pain make you hard and bitter, continuing to see life as beautiful. I am learning, better every day, to find the beauty in this life. And while it may not look like it at first glance, I am a softer person than what I project to the world.

Despite this, I am regularly, and increasingly often, told I am bitter, that I have a dim view of the world, even that karma is going to collect on my negativity one day. In fact all of these comments came from a single comment made recently on a social media post where I pointed out Ableism. In another recent interaction, I asked a question about the accessibility of a local business and was told to shut up by another commenter. In interactions with people I’m closest to I’m often cautioned against sounding mean or harsh, told not to write while I’m angry. In her birthday message to me, my mother told me to be gentle with myself and the world.

I recognize the difference between strangers’ comments and familial advice. I grudgingly suffer one, and gladly welcome the other. But they both reiterate for me the fact that non disabled people lack an understanding of what it’s like to live as a disabled person. They don’t have the experience of existing in a world that constantly reminds you it wasn’t made for you. All the while society force feeds us the idea that we should be grateful for any little crumb of equality we get. So yes, perhaps I am bitter.

I’m bitter I can’t even get through the news, the latest movie, or even a YouTube video I was enjoying, without encountering Ableism. What can I say, I get a little tetchy. When my every day is a count down to the next time I am discounted, forgotten or “othered”, I have found I acquire a certain bitterness.

But I can’t bring myself to apologize. I can’t apologize for the way the world has made me, any more than the world will apologize to me for its treatment of myself and others like me. I can only continue to do the work of dismantling Ableism where I find it, being gentle where I can. And where I can’t, I only hope those around me learn to appreciate a little bit of acquired bitterness.

Not My War

It’s a common trend to associate people who are disabled or chronically ill with the term “warrior”, and to describe their life with the condition in question as a “battle”. This is especially prevalent in news stories about people who have died from cancer for example. It’s also sometimes said that the person lost their battle.

The same happens in regards to Spina Bifida. I cannot count the number of times I’ve seen a person with Spina Bifida referred to as a “Spina Bifida warrior”. It’s also common for those with Spina Bifida to adopt the descriptor for themselves. That’s all well and good. I firmly support a person’s right to refer to themselves and their illness or disability in whatever terms they are comfortable using.

For me though it’s never made sense. Thirty years of living, upwards of fifty surgeries in that time, and I still do not see myself as a warrior. I can’t. Spina Bifida isn’t a war I’m fighting; it’s the only life I’ve ever known.

As I said I’ve had upwards of fifty surgeries throughout my life, countless tests, and blood draws on top of that. But even the most high risk surgeries I’ve undergone haven’t been a battle. They were necessary for my survival and quality of life.

Being disabled has meant that I’ve spent a fair amount of time fighting other battles though. I’ve become practiced in combating ignorance and discrimination, adept at identifying and dealing with Ableism. In this way I’ve been more at war with the world around me than my disability. In that same way my body is not a battlefield, it’s my home.

Through all the ways it’s changed, that I’ve changed, grown, broken down and been built back up, my body has been my home. Even on the days when pain lays me out, when my eyes won’t focus or my stomach is throwing a fit, this is where I live. This is where I will keep living, especially on the days I think about not. Because even on those days my home keeps me safe, sees me through.

So no, Spina Bifida isn’t my war and I am not a warrior. I am a disabled person living the only life I have, the best way I can. I love my body for its strength and try to have grace for its weakness. In a world that makes both of those things painfully difficult, I’ll take those small victories.

A Message From Your Strong Friend

Hey! It’s me, your strong friend (child, sibling, coworker, neighbor). Sorry I didn’t get back to you yesterday (last week, last month, six months ago). I’ve been (really busy, dealing with a lot) struggling honestly. Wait, that part wasn’t meant to be out loud. Well I guess we’re doing the honesty thing huh? Ok, here goes.

Sometimes, ok a lot of the time, I struggle. But I don’t want you to know when things are hard. Well, that’s not true. I feel like I’m not supposed to show when I’m struggling. Because I am the strong friend. I’m the one people come to when they’re struggling, the problem solver, the shoulder to cry on.

But can I tell you a secret as your strong friend? Sometimes it feels like all I do is struggle, never making progress, never moving forward. Objectively I know that’s not true; progress is hard to measure and it’s not always obvious it’s being made. Regardless, instead of reaching out when I feel stuck, I hide.

I convince myself hiding and struggling is a better option than reaching out. If I don’t reach out I can’t disappoint myself and the person helping me when (not if) I can’t do what they suggest. Also, because I’ve withdrawn so much, that person likely has no metric of what I’m currently capable of. So that thing they suggest in good faith might genuinely be Mount Everest to me. But being honest about my current capabilities is also something of a Mount Everest, so I withdraw further.

Are you getting the picture? That’s right, I’m a disaster. And you call me your strong friend. No wait I did that. Why did I do that? That’s clearly not me.

It’s probably you though. If you’re my friend, I know it’s you. And if we’re not friends you’re probably still fantastic, smart, funny and a million other wonderful things. Because we’re all made up of lots of different parts. We’re our passions and our fears and even our struggles.

Sometimes our struggles may overwhelm the rest. That’s ok, it won’t last forever. Take the time you need to become whoever you’re becoming. Lean into the awkward and the uncomfortable. Embrace the you that’s trying to be. And never forget there are people out there ready to catch your hand when you reach out, like me, your (sometimes) strong friend.

Unprecedented

un·prec·e·dent·ed

/ˌənˈpresədən(t)əd/

Learn to pronounce

adjective

never done or known before.

“You keep using that word. I do not think it means what you think it means.”

— Inigo Montoya, The Princess Bride, on Vizzini’s use of the word “inconceivable”.

I honestly have half a mind to post the above without any further explanation. But in case any is needed, allow me to give some context to my thought process. In the past few months I have noticed increasing use, or rather misuse, of the word unprecedented to describe the state of the world right now. While I would agree 2020 has been stressful, filled with loss and ignited in many a fire for justice and change, none of those things, or the events leading to them are exactly unprecedented. 

Take the global pandemic, no seriously someone take it away. Pandemics, and many other sicknesses, are cyclical in nature. There have been several occurrences throughout history of illness running roughshod over mankind, similar to the way COVID-19 has ravaged communities across the globe. The death tolls then were also astronomical and nothing resembling herd immunity occurred until well after the number of deaths had climbed and when possible a vaccine was developed.

My point being, as horrible as this has been to witness, as devastating as the continued loss of life is, history told us this was possible. Some countries heeded that warning better than others. Regardless it is not so much unprecedented as a devastating matter of course. 

Another, no less devastating occurrence has been the fires, earlier this year in Australia and then, as happens fairly regularly on the west coast of the United States. At least in regards to the fires out west they are not unprepared. Evacuation plans and emergency planning remain in place to some degree. But always the damage seems to be far greater than anticipated. Fire and rescue struggle for weeks to maintain and mitigate the damage. Then communities are left with rebuilding. 

On top of the more nature based hardships this year, there has been a marked increase in protests against another that is purely man-made. Black Lives Matter protests have been nearly ongoing since the beginning of summer in response to the growing number of Black people routinely killed by police. This push back against the blatant racism and violence experienced by the Black community in America has seen support all around the world, though at home changes are slow to be made and the need for justice remains unmet. 

I don’t mean to in any way trivialize any of these issues. Each are devastating and life ending, but apart they are not unprecedented. Disease has existed as long as man, fire longer than that. Racism and hatred are purely man-made, but no less deadly. 

What I would say is unprecedented, something that all of the examples I’ve listed have in common, is their increased affect on disabled people. Evacuation plans rarely take disabled people into account. Shelters are rarely accessible or capable of serving medically fragile people. Because of this we are easily the most at risk during natural disasters. 

When cases of COVID-19 first started being reported experts said it was likely to only adversely affect the elderly and people with preexisting conditions. Public officials and news organizations clung to that. Even now with the death toll surpassing 200 thousand people are saying they’re not worried because they’re healthy, not realizing the sheer number of people they are essentially condemning to death. 

As far as police brutality is concerned, Black disabled people are disproportionately involved in altercations with police resulting in injury or death. In the case of injury, lasting effects often become disabling so regardless of any preexisting disability, people become disabled through police brutality. 

Full disclosure, even I have misused unprecedented here. Because Ableism is far from unprecedented. It has roots back to the birth of white supremacy and has maintained just as long.

So here’s a question: if disease, destruction, and white supremacy aren’t unprecedented, what’s stopping us from guarding better against or getting rid of them completely? In regards to COVID, social distancing, wearing a mask et cetera. Putting real actionable plans in place to protect everyone during a natural disaster. Work to dismantle the societal systems allowing white supremacy and Ableism to thrive. The work has already been started, let’s make sure it continues.

Radical

Recently it’s come to my attention that many of the views I hold may be seen as radical by some. This was news to me, but I’m curious if others might shed some light on the subject for me. I’ll start by sharing a few of these so called radical beliefs.

I believe everyone has certain rights, things that they are entitled to simply by virtue of being alive. Some examples of things I consider rights: physical safety, food, water, financial security, and health care. That’s by no means an exhaustive list. I also believe people are entitled to love whoever they love, build a family and practice their chosen faith. They should also be able to live without fear of persecution based on their sexual orientation, gender identity and expression, race, disability or any other inherent part of their identity. Oh and before I forget, a person’s worth is not inherently tied to their ability to perform labor.

None of these things seem to me to be terribly radical beliefs. But as I get older I’m beginning to understand that they are down right incendiary to others. It’s almost as if the freedoms that ought to belong to everyone have invisible qualifications attached. It’s almost as if unless you act a certain way, look a certain way, sound a certain way, they’re not your rights to claim; as if the conditions under which you were born define where you can go, what you can do, which dreams you can achieve.

We’re seeing every day the comparative worth placed on skin color, on wealth and status, on other people’s definitions of quality of life. The measuring of that worth has come at a steep price. It is the death toll of inequality and every day it climbs higher.

While I’m at it, here’s one more radical belief for you. I believe it is high time we demand change. The cost was too high to begin with, and it has been more than paid. Systemic violence needs to be put to an end. Life threatening social inequality need to be rectified. The disenfranchised and the marginalized deserve to finally enjoy the rights and freedoms they’ve been routinely denied. If believing all that makes me a radical, so be it.

The World Feels Smaller

No one ever told me grief could shrink my world. Growing up I learned all about how technology and travel had brought all the corners of the world closer. In many ways the speed with which we can now travel and communicate has literally shrunk the globe.

But no one ever mentioned this. No one ever said a person’s absence could be felt nearly as deeply as their presence. I was never taught that loss could so completely warp my world view that there doesn’t seem to be room for anything else. I have found however this is precisely the case. The world just feels smaller somehow.

And not small as in close knit and warm. Not the kind of small like a family dinner or an afternoon with a dear friend. This isn’t warm and comfortable. This is cold and dark. It’s empty and stiflingly close at the same time. I don’t know which way is up, but it hardly matters. I’m rooted to the floor.

Maybe it has to do with the near constant stream of loss we’ve been enduring lately. With this sheer magnitude the collective quickly becomes personal. It’s at the same time completely individual and intrinsically shared. And it is heavy, so heavy some days the only sensation I can register is fragility. I am brittle with grief, and sadness, and anger at the knowledge that it didn’t have to be this way. None of it did.

But for reasons beyond my understanding, and due to forces blessedly out of my control, I remain here, in this moment. I remain, to continue reaching out through the small, dark stillness in hopes of finding a hand to grasp on to. Maybe it’s your hand I’m looking for. Maybe you’re looking for mine. In any case, I hope we find each other. I don’t want my world to feel this small anymore.

A Few Important Announcements Regarding The Future Of Bif In Medias Res

Greetings friends and followers of Bif In Medias Res! Apologies for being gone so long. There has been a lot going on and I’ve been busy getting things in order. But I wanted to take an opportunity to explain everything that’s happening so you’re along with me for the ride.

First, I recently collaborated with fellow content creator Diamond Baldwin and a post I wrote is currently up on her blog. Her post will be shared here when it is complete. In the meantime, go check out her other projects !

Next, if you aren’t already aware, the blog now has a Facebook page . Updates will be posted there rather than my personal page from now on. I will also be interacting and sharing disability and activism related content to the page. You are welcome to like and follow as well as share the page with anyone who might be interested in it. I can also be reached there through messenger as well as at Bif In Medias Res’ email .

Also, I have created a linktree where you can find links to my PayPal, Twitter and other various and sundry items of interest. I thought it was important to have a centralized location for all of my various accounts. My PayPal is also still located on the About page for anyone who would like to support my work.

Lastly I’ve been doing some restructuring on the site. Along with the About page, the menu now includes a contact form and information for anyone interested in hiring me for writing, speaking or consultation regarding issues related to disability. I have always been passionate about using my skills and experience to help others and I think this will be a great opportunity for me to do that.

I think that about wraps up all the new things happening for Bif In Medias Res. There are still details to iron out and changes to make but I’m really excited to take things in a new direction. That being said, I still plan on being active here and updating as often as I can. Thank you to everyone who has supported me thus far. It truly means so much. Be well dear ones!

Be A Ripple

(Poem courtesy of one of the many lessons I’m learning at the weekly Crip Camp sessions)

I used to think to be remembered
one had to do big things,
make grand gestures.
As if that was the only way
to have an impact.

But now I realize that’s not the case.
It’s enough to be a small part of something bigger.
Supporting roles are just as important as the main players.

We can’t all move mountains, especially not alone.
But movement is movement no matter how small.
Focus on moving forward, even slowly.

It’s ok if what you do isn’t earth shaking.
Maybe you won’t be the force that breaks the dam.
Go ahead, be a ripple in your small pond.
You never know how far you might reach.

Still Compatible With Life

“Spina Bifida is the most common permanently disabling birth defect still compatible with life”

The above quote has been rattling around in my head almost as long as I’ve been learning, and teaching others about Spina Bifida (and disability in general) so roughly since my teenage years. It’s kind of a lot to digest. If it’s new to you as someone with Spina Bifida, or if you’re completely uninitiated, I’ll break it down for you.

Spina Bifida, literally “split spine”, is a neural tube defect present at birth in which a portion of the spinal cord is exposed to some degree. In my case, Spina Bifida (spine-uh bif-id-a) Myelomeningocele (milo-meh-ninja-seal), my spinal cord was fully exposed through an opening in my back between my fourth and fifth lumbar. I know that’s heavy. Pause here if you need to.

As for the rest of the quote, “still compatible with life”, means Spina Bifida is the most severe birth defect that is survivable to adulthood. These are words I have been sitting with (no pun intended) for years. At first, I’ll be honest, they terrified me. I couldn’t wrap my head around my diagnosis being fatal. Past that, how was it I avoided that fate? And why?

The latter of these questions wouldn’t come up until several years after I’d first found the quote. I didn’t spend middle school grinding about my purpose on this earth. That’s what college was for!

Sarcasm aside, these words have meant different things to me throughout my life. I went from being completely unnerved by the revelation, to hell bent on making sure my life meant something  to somebody. Recently I realized my understanding of the quote has changed again.

I now identify very strongly with the “still compatible” bit. I won’t belabor the details of things I’ve written about in other posts, but suffice to say I’ve struggled the last few years. I can’t go so far as saying I was ever actively suicidal. But the idea of just not existing has been extremely attractive on occasion. Thankfully I am in a much better place at present (at the time of writing, a literal blanket nest actually). Because of the energy and efforts I am putting toward staying in my current state, I can honestly say I believe the quote. I am still compatible with life, and I have every intention of keeping it that way.