Non-Vaccination and Ableism or How I am Excluded from Attending my Grandmother's Funeral

So, my grandmother died this last weekend.  She was on hospice; it was expected.  Yet there is still some processing to be had.  I cannot go to her funeral.  I have been excluded from her funeral.  I am furious and heart-sore.  

Here's how that happened:  there are members of my family that are not vaccinated.  While enforcing their "right to choose" to not get vaccinated for whatever individual purpose, they might be very focused on their own intentions, but there is an unmentioned impact.  I've heard it repeated that it doesn't hurt anyone else.  And yet, here we are with a clear example.   

I'm immunocompromised.  I have to protect myself.  By choosing to not be vaccinated, that means that they are refusing to make accommodations that respect that need.  It's the same energy as if I were wheelchair bound and asked if I'm going rock climbing with the rest of the family and then to be told that the choice not to go was purely my decision.  The conditions were inhospitable for my needs and then the implication is that I also am the only one to shoulder the blame.  This is ableism.  And there is real hurt here, inflicted by members of my extended family.

So, no, no one has outright told me that I'm not welcome, but their actions have.  If there are no ramps or even handrails on the steps, we exclude structurally without outright saying anything.  If there are no options to meet different dietary needs, we exclude persons from the meal and the community of that space.  If we don't take active steps to protect people with weakened immune systems, then we exclude them from those spaces.  

There is a ground assumption that "my" needs are the same as everyone else's in this way of thinking--when this assumption is then enacted out, this is ableism.  Logically we can recognize that individual needs vary, but there are still parts where signs of this thinking are so firmly entrenched in our surroundings that we don't realize it, until we try to fit a wheelchair through the doorway of a tiny bathroom or try to stand back up and have nothing to grab on to.  If it is "too much work" or "it's too inconvenient" or even "too expensive" to meet someone's needs, then there is a clear signal here that that individual simply isn't welcome.  Eventually, when we exclude those different voices for enough time, those remaining continue to reinforce their version of "normal" and then adjusting to include people again becomes all that much harder.  

We live in a collective society, where all of our decisions impact others around us.  I could make many, many excuses about how inconvenient it is to stop at a red light, but I have agreed to sign that societal contract, which not only protects me but helps protect other people.  Vaccinations are the same--maybe we won't see the personal benefit to ourselves, but we will also not have a six-car collision in our rear-view mirror.  

The decision to get the vaccine and the booster is about community health more than it is about individual health.  It is about seeing people and their needs.  It is about inclusion.  It is an expression of love to other people.  Whatever the specific intention is behind the choice to not be vaccinated, there is a profound impact of silent casualties--missing voices, broken relationships, the cumulative weight of guilting, and, yes, spreading disease and then deflecting the blame around to someone else.  The impact is there, even if one's intentions don't think it should be.  It is there.

I will not bear the risk of spreading Covid to my patients that are already ill and the impossible guilt that would follow.  I will not--after fighting impossibly hard for my current state of health--put my body at risk of developing temporary or long-term issues.  My feelings of frustration and anger in watching others choose to invalidate these concerns are wholly valid.  

I do not shake my fist at some generic idea of Covid; I openly distrust persons who choose not to care about other people, who (amongst other injuries) have denied me the sense of closure that I could have had in going to a funeral.  I am one of many in the last few years that has had to face such a quandary, weighing the emotional, physical, spiritual, and safety needs of situations and gatherings.  

The impact of individual decisions not to vaccinate prolong the crisis, continue to hurt, continue to harm.  Why refusing to not be vaccinated is a hill to (sometimes literally) die on continues to confound me.  At what point is the cost too much?  Is this a cause so worth the pain it is inflicting?  The best-case scenario is that persons who choose not to vaccinate are hurting others out of ignorance.  But that doesn't make the impact go away.  The not-so-good-case scenario is that those persons know they're hurting others and don't care.  If the point I want someone to understand is that they should simply give a damn about other people, I walk away from the unproductive argument.  In other words, I am hoping that the bulk of people that are unvaccinated are ignorant to the broader harms, that maybe I can put words to the trickier parts to process or be a face of a faceless "other."  

Because I feel unseen.  Because I feel unheard.  Because I feel invalidated by the apathy.  And because I know that I am worth more than that, and I know that I am one of many in a screaming chorus of similar hurt.  We are here.  We rail against the idea that it didn't hurt anyone else.  

Measuring Stick

I had an important interaction with a patient a while back.  They were bemoaning their current condition, upset that they had experienced a setback in their health.  They mentioned how they were trying to "eat better" and "take better care of [their] health" but it didn't seem to be doing anything.  

So I asked a simple question:  "How are you measuring that?"

They paused.  Noticeably chewed on the question.  "What do you mean?"

I explained that "better" didn't mean much.  What does better look like?  How could they tell if they were actually making any progress?  And they were quiet again.  

And then I went on to explain a little further:  If I say that I am trying to lose weight, I could get very disheartened by only gauging my success by what I see on the scale.  But if I consider how my clothes are fitting, that my resting heartrate is lowering, measuring certain areas of my body, noting how much less huffing and puffing there is after my cardio warm-up, the amount of weight I can lift, now I suddenly have many ways to gauge how well I am progressing.  These will ultimately be more encouraging to me and validate the progress I have made in the same breath.  In my particular case, I have lost forty pounds in a month before when my Crohn's was sixteen kinds of angry--the best BMI in my adult life I have ever been is when I was unarguably the sickest.  Subsequently, the number on the scale has not meant much to me in terms of measuring health for years.  An indicator, sure, but not the end-all, be-all, particularly compared to how much more stamina I have than I used to.  

Sometimes, we need to check our measuring sticks.  The goal cannot be something as amorphous as "better."  Creating a half-assed goal of "better" sets one up for disappointment.   It is important to set a goal that is measurable, attenable, time-based, and productive.  

Useless goal:  "Eat better."

Useful goal:  "Pack lunch for work three days out of the week;" "rotate in seasonal veggies as sides for X number of meals a week;" "decrease portion sizes by X% for five out of seven meals a week"

Useless goal:  "Smoke/Drink less"

Useful goal:  "Limit smoking to X per day; wine allotment for the week is Y glasses"

Useless goal:  "Get into a better writing schedule"

Useful goal:  "On days off, before noon, have at least a half-hour of writing time"

Another important pitfall to avoid is not starting with the end goal as the ONLY goal.  The ultimate goal for high blood pressure, for example, would be to have blood pressures consistently in a certain range, but it cannot start there, nor can the half-baked goal be all-or-nothing.  No one goes from inactive to marathon runner in one jump:  the baby steps deserve praise.  Not only that, but it can take a lofty aspiration and break it into chewable pieces.  

A diabetic could have a goal of having their blood sugar be under X amount before two out of three meals in a day, Y number of times a week.  Someone with a new blood pressure medication could set a goal of taking their medication every day for a month and another goal of going for a fifteen-minute walk three times a week.  Getting up to the chair for all three meals in a day is a brilliant goal for post-surgery recovery.  For mental health, it could be something like doing a five-minute meditation four of our seven days a week or scheduling the first therapist appointment within the month or starting each day saying three positive things about oneself or practicing a grounding exercise each time Outlook is opened to preempt a normalized panic at seeing the mountain of unreads.  Even something intangible can be translated into something meaningful--e.g. I will rate my mood of higher than three on a rubric made to help scale two days out of the week. 

It takes time and energy to frame goals well, yet the process of individualizing them to one's own ability level keeps drive for the goal in a better place and honors both the speeds and needs of the goal-setter.  Someone else's pace may not match our own needs or abilities, nor should we expect them to, even if the verbiage around New Years' Resolutions seems to oddly push specific examples and ideas as doctrine.  My goals are about being a better version of myself, not being better than someone else; it's a small but important frameshift that allows for greater freedom.  It can be helpful to have a scripted step-by-step; it can also be helpful to recognize that my personal success may not look like someone else's.  

Keep strong on those promises you've made to yourselves, my friends, even if that means finding a new way to approach them.  

Fledgling Nurse, Part 6: Melvin as a Superpower

So, I have had patients that needed to vent before, patients that were so caught up in what their current circumstances.  Being in the hospital is a traumatic thing, where the "normal" is broken.  And being "fine" one day and requiring to call someone to help you go to the bathroom the next does not always sit well with a lot of people.  A lot of people tend to feel very much out of control in these spaces and subconsciously try to reestablish control by making demands or picking a small fight.

Not everyone has the vocabulary to dig into what they're feeling in those spaces.  I am very intentional when I meet a patient to ask them what I may call them and often whether they would like their door open or shut--in other words, I start off by checking for consent and permission while also honoring their space and giving them a modicum of control.  I think it helps.  Giving the patient a degree of choice and autonomy in the first few moments of our interaction is what I would want at least.  

Later in conversation with the patient, while helping them to the bathroom, performing my morning assessment, or documenting all of their morning medications, I tend to see if I can get a conversation going, to understand a bit more about their situation and where they're at.  If I have caught the patient in a space where they A) trust me enough to be honest, B) are emotionally overwhelmed enough that it doesn't matter, C) seek to manipulate me in some capacity (unconsciously or otherwise), or D) some combination thereof, I might be able to tap in to how they are coping emotionally as well.  I try to make specific invitations to these places, actually.  

Every now and again, though, I get a patient that tells me that I don't understand what it's like to actually be in the hospital.  And they cannot see small tightening of my lips under my mask as I have an involuntary, rueful smile.  Then, I tell the patient, that, sure, I cannot understand exactly what they might be going through, but I have some idea, at least.  At that point, I may add in that I have had a chronic illness since I was twelve and have a permanent colostomy that I call Melvin, with a long hospitalization fresh enough that I still remember a lot of those same general feelings.  It's only ever a sentence or two, unless they start to ask about details, because I put the conversation focus right back on them--it is a vessel to validate their feelings, to acknowledge some frustrations that are real yet hitherto unnamed.  I establish my credibility and authority not only as a nurse but now as a human being that has also been in a similar space.  I might mention how inconvenient it is to twist around for the toilet paper in the bathroom, particularly if one is sore and achy or recently had abdominal surgery.  I might mention that the first time one can shower by themselves again is a glorious achievement, as is the first time farting after a surgery.  But I always come back to their current experience.  I show them briefly my authority to empathize, and then it is back to a new, deeper understanding between us.  

And often the conversation is free to dig into the real concerns that they want to talk about.  I listen, paraphrase back, add in my own ways of describing similar feelings, and continue to listen while tidying up the room a bit or occasionally doing some quick charting to allow myself to linger a moment longer.  Other times, it's clear I need to put down some distractions and either touch their shoulder gently or take their hand, offer a tissue.  

I don't always have as much time as I would like for these holy, human moments.  It does make them all the more precious.  

It's odd to think how having a chronic illness and an ostomy can become its own superpower.  Frankly, to some people living with an ostomy is the worst-case scenario, that they cannot "imagine having to do that!" (which people have said to my face, that my life embodies their hell, which is...not exactly uplifting).  And yet.  Here I am.  Certainly with scars and trauma that I wear perhaps too well some days, but I am here.  I went to nursing school and swim laps and am happily married and have a dog and proceed to keep living, even with an ostomy and, in fact, because of my ostomy.  A patient's demeanor can change dramatically when I choose to reveal this vulnerability, this small piece of truth, occasionally putting a couple of other things into perspective for them, too:  their current distress is real and difficult to process; there are also quite possibly ways to accept it and people who have whose experience can be learned from.  

That's with patients, though.  I'm not shy about telling my peers about my ostomy either.  And, honestly, it is such a relief to be around people that I don't have to go into a full lesson about what an ostomy is--there is a base, mechanical understanding immediately there.  I know that if I have a bag blow-out in a shift that I could have hands that would know how to act and help in the immediate physical places (grabbing my supplies, getting new scrubs, checking in on a patient, etc.) and a number that I would trust to support me in the emotional ones.  Inevitably there will be a day where I need that kind of help, and I feel a community present in these spaces.  

Melvin's presence has a way of helping me, too:  I have less trouble asking for help when it comes to Melvin.  It is something so un-normal for most people that there are few assumptions made about what I do and don't need in those spaces, so I can set the timbre.  I tell people frankly that I need to vent the bag or that the loud, wet sound they heard was "just my ostomy," to normalize it a bit more, sometimes for myself.  Melvin also gives me an excuse to go to the bathroom--I can tend to Melvin with little internal discussion when I had successfully ignored my bladder for the last several hours, which means that it is also a good time to pause for some water and otherwise take a few mindful breaths while I'm at it.  

Just a normal bathroom, for our version of normal

Melvin makes me pause, both to my frustration and relief.  Melvin humanizes me to both my patients and my peers.  Melvin does not define me, but it definitely does frame my experience significantly to the degree that I cannot separate myself from my disability.  Living with an ostomy means that I always have to be checking in with my body in certain ways and have contingency plans for different situations, which can turn into experience I share with patients all over again and reasons to further self-advocacy.  It is a continuous journey of self-acceptance, grief, and resilience, overlapping corners with other challenges and the needs of the moment.  And the only visible marker of all these things hides under my shirt.