A photograph of an orange and white striped cat laying on a pink-red bedspread.

Can I Cease Striving and Start Living?

I’ve stopped asking who I would be without my disability and begun to consider who I would be if I lived in a society that centered the needs of disabled people such as myself and which treated us as something more than the sum total of our “productivity.” I’m disturbed at how fully and uncritically I’d bought into capitalism and work as a measure of worth. Had I known where my effort was leading me, I would have course-corrected long ago.

An aspect of this reassessment has been to realize that many of the aspects of what I’ve consider success in other people are most likely, at least in part, the result of privilege. Yes, each person faces their own struggles and challenges in life, but some of us have a much shorter path to travel to arrive at the “American dream” than do others. Something has always felt off when people have praised me for prevailing against the odds and said they were proud of my accomplishments. I wonder if this is because reaching those accomplishments took from me or prevented me from obtaining core securities such as trust, relationships and safety.

Even writing this feels self-indulgent and disempowering. I don’t want to become stuck in anger, facing off with those with more power saying “fix it,” although that is likely a much more appropriate assignment of blame than shaming myself for being disabled. I want nothing more than to disengage from our capitalist society entirely and either emigrate or become wholly self-sufficient.

There are real limitations to what I can do right now to achieve these goals, so I find myself gravitating towards trying to accept a reality I despise. I would not miss my job or where I currently live for one heartbeat, but, in leaving abruptly, I would be choosing at least a time of severe poverty and lack of access to healthcare. I am at least burdened with a choice; I feel a new level of empathy for those who are trapped in relationships with family, partners and/or friends who cannot leave because our society’s lack of provision and accommodation for their disability prevents them from doing so.

I am sitting with where I’m at and allowing myself time to notice if any answers arrive. In the meantime, one question I want to begin to ask myself more frequently is the following: “What would I like to be doing right now?” rather than “what should I be doing right now?” I am so afraid of acting in a way I classify as lazy; I need to explore the discomfort of that space instead of busying myself in a futile attempt to subvert it. How much are you affected by needing to feel busy and productive? How much would you be or are you impacted by the word “lazy”? How far apart does “what I want” and “what I should do” feel to you?

Living and Working with Disability

During this past year, I sought out and was granted a disability accommodation at my job. My work is about to start back up after a natural break and I am filled with constant dread. I’ve searched for years for an alternative to working where I do and I’ve concluded that my disability (primarily PTSD but other issues as well) is so severe that I may need to seek permanent disability status. If I knew that I would be granted this if I sought it and that it wouldn’t be taken away from me, I would have applied for it yesterday. That’s how difficult it is for me to make it through each day at my job.

I am about a decade and a half from the earliest at which I could potentially retire with some benefits. I cannot imagine how I can possibly get through this as I feel that I’ve been running on fumes for the past three to four years and am about to coast to a full stop. The triggers that are present at my job are constant and intense and, as such, they overwhelm my capacity to cope. I’ve had time off and have done nothing but worry about what is to come in the next year; even away from it, my job consumes nearly all of my mental and emotional energy. Coming out as trans and non-binary has only escalated the situation and increased the likelihood of triggering situations.

I feel less stuck now that I’ve come to accept the reality that there isn’t another type of job that would alleviate my symptoms. I both can’t do my job and I’m choosing to do my job for right now as I weigh the pros and cons of applying for disability. I do not feel any shame about getting to this place, but it is bewildering to think back to my early 20’s where I never would have imagined I would be at this place (in fairness, I was frequently suicidal so I often saw no future at all for myself during that time).

I’ve told people again and again that getting up each day and taking care of food and shelter has felt as though it has taken everything I have in me, but I didn’t actually hear what I was saying because I couldn’t imagine a world where I wasn’t forced into an impossibly stressful and overwhelming experience every workday. I’ve significantly reduced my commitment at my job to the bare minimum of full-time work; in doing so, I’ve given up tens of thousands in income every year. This change has helped but, when a person is running on fumes, pushing with less intensity on the gas pedal still uses up whatever fuel remains.

I would be extremely grateful to read about your experiences if you’ve been on disability or thought about pursuing it. There are so many stereotypes and judgments about “not working” and I’ve definitely fallen for them myself for far too long. It took a lot for me to apply for disability accommodations and I regret not going down that path earlier, so I want to keep an open mind about my options now as well.

Living with Complex PTSD in a Pandemic

I don’t know if I’ve been having more self-doubts than I normally do or if I am simply more aware of the “negative” thoughts I have than I would be were life not impacted by the pandemic. In either case, in the past week, I’ve noticed myself questioning my interpersonal capacity and feeling glum about my limited social life more often than I typically would. I’m both alone and lonely, an unpleasant combination.

The pain and rage I feel from being invalidated or rejected by others is so exquisite that I have spent years cultivating a buffer of self-reliance and self-care through which I can shoulder as much of the emotional burden of being a human on my own as I possibly can. I have a paradoxical capacity to appear vulnerable and open while not actually feeling the emotions that are supposed to go with the intimacy I am able to create; this ends badly when I cut off relationships abruptly when my bullshit capacity is reached while the other person had no idea of the grave threat I viewed them as posing to me. I show up as warm and empathetic without an underlying loyalty or commitment to maintaining the trust I engender, which makes me view myself as manipulative. This has led me to scale back how far I go in engaging with others because I don’t want to hurt them. Their ability to rend my heart has diminished over time as I expect very little good from anyone.

I applied for and was granted ADA accommodations at my job related to having PTSD earlier this year. Something in that experience helped me come to terms with the fact that, although I always hold out hope for healing, I am probably going to be someone with life-long damage and deficiencies due to the childhood trauma I endured. I am disabled and no amount of “trying hard” is going to magically create relationships in which people get my disability and relate to me in a way that works with rather than against my needs. I could be and in fact have been met on a deep level by others, but it takes skill, patience and an unyielding dedication that the vast majority of people I’ve encountered are nowhere near capable of providing to me. People cause me more harm than healing and that isn’t all my fault or all my doing.

Writing out these truths and lessons helps me a little to make peace with the inner judgment and criticism I’ve been feeling. I’m worthy of grace and worthy of effort. I know I lack grace and effort in how I respond to others; I cannot abide relationships that trigger me but I can at least own the reasons why I may need to end them. I did that with a long-standing friendship that had become toxic last year and I feel much more at peace with its devolution than I otherwise would. “It’s not you, it’s me” is ugly, but sometimes ugliness is truth.

It’s been almost six weeks since I had any sort of “normal” in-person human interaction, aside from half-shouted conversations with neighbors at a distance, and I’m not collapsing underneath the isolation and the loneliness because it is not that different from my life before lockdown. I may be disabled by my trauma and my PTSD, but I will make as much of my life as I can. I suspect some people live in terror of my everyday–“what would it be if there was no one there for me”–and yet the adaptability and the persistence of life, of being as a human, of the will to be here, in this moment, fascinates and motivates me to endure.

A Change of Pace (Today's Moment of Gratitude)

I’m struggling through a migraine today and nearly forgot to make a daily post! Although taking time to appreciate the good I have in my life has been an intentional practice that’s enriched my day-to-day experience, focusing on it lately has felt at times like a way to escape grim reality or to brag about privilege more than a genuine stance. I am truly grateful, though, for the change of pace my life has undergone.

I’ve worked for the last three or four years to cut as many obligations out of my life as I could, after coming to terms with the fact that I have both physical and mental health conditions that are disabling. In some ways, the triggers that remain have become more destabilizing, as though I’m in shallower waters and therefore feel each ripple more acutely. I haven’t been able to arrive at a place of feeling secure and balanced.

Being allowed to work from home and having it be socially acceptable to minimize my contact with other people has felt like a prescription for good health, not a burden. People, especially when they are angry, are my main trigger, so having more control over the circumstances in which I encounter them has physically slowed my heart rate and lowered my blood pressure. I’m calmer and more grounded.

February was busier than normal for me, and the reset of my life through which I’m living right now is welcome, even if the circumstances leading to it are devastating and terrifying. Things will pick up again soon for about two months, and then I will have three months off of work entirely. This experience is teaching me that I might need a lot more physical distance from others than I thought I did. I’ve dreamed of moving to a remote area and living off the land. I figured it was one of those things that sounds good until you actually try it, now, I’m not as certain it’s a bad idea for many reasons. And, best of all, I have some space to try it out in small ways to see how it sits with me. What has happened to the pace of your life as of late? How has it affected you? For what are you grateful today?

An image of a puppy with white and red fur sleeping on a grey blanket with sunlight from a window landing on it.

Enjoying Nature from Home (Today’s Simple Pleasure)

Many of us, myself included, take the ability to go to a park or forest nearby to enjoy nature in the spring and summertime for granted. Even sitting by a window can allow access to these experiences for those with mobility concerns. Today, however, I wanted to share a way to enjoy at least the sights and sounds of nature for any times when we may be stuck indoors by bad weather, health conditions and so on: live streaming!

When the pandemic was sweeping through China, I’d read a story about botanists filming the cherry blossoms opening so that viewers could enjoy them. It struck me as something I hope will continue even after the health crisis passes; there are so many people who cannot easily get out and about who deserve to have a way to appreciate nature. At least one study has shown that even looking at a photograph of nature can lower stress, although I do think there are added benefits to direct participation in outdoor settings to whatever extent possible.

The website I found that feels like a treasure box is explore.org, which is filled with nature cams from around the world. I think my favorite so far has been the puppy cam, which, during the time I’ve watched, has consisted entirely of the puppies sleeping. I can feel my blood pressure dropping after a few seconds as I relax seeing how calm and snugly they are.

Overall, my anxiety has been spiking to the point that I think I would have a hard time sitting outside for an extended period of time, because my hyper-vigilance wouldn’t let me concentrate on my breathing and my senses fully. As soon as it fully warms up, I am going to try to go out and see how it goes, and I have been really liking going for short runs with my dog, where my anxiety gets worked out through physical exertion. Even though the great outdoors remain open to me, I consider observation through live-streaming as another tool in my self-care toolbox. What is your favorite live-stream of nature?

In the Age of Entrophy (Today’s Daily Work of Art)

Today is a day in which I remind myself art is not the same thing as beauty. I tend to lean much more towards the products of creativity I find aesthetically pleasing and soothing, rather than considering the entire range of responses that could possibly be evoked. I do this, in large part, because I am much more easily disgusted than the average person.

Part of the research on disgust suggests it is an emotional response that evolved from processes we developed to keep us safe from contamination. For this post, I’m defining entrophy as disorder, chaos, destruction and death. Contamination and entrophy (in its physical sense) are connected in that death and chaos increase the risk of viruses, fungi and bacteria being spread.

For my reflection, I decided to take some time to analyze my somatosensory system (ability to feel pain, temperature, pressure, etc.) as well as my sense of smell as it relates to entrophy. I avoided my visual system because the images of things that are unpleasant can haunt me for months and are pretty much unbearable. My misophonia, as it relates to my sense of sound, is strongly tied into my disgust response as well. What, then, is the felt sense of entrophy, and what does it smell like? If you are as easily disgusted or bothered by disorder as I am, you may want to stop reading here!

Disharmonious Feelings

  • Feeling another’s warmth drift from you the moment after an embrace
  • Being bumped into in a crowded public area
  • Missing a step when walking down stairs
  • Dropping a heavy or valuable object
  • Running over a curb while driving
  • Spilling food you’ve just prepared in every direction
  • Trying to concentrate in a stuffy room
  • Opening an umbrella when it is very windy outside
  • Shaking someone’s cold, limp or clammy hand
  • Sitting in the passenger seat of a dirty car

Scents of chaos

  • Body odor combined with perfume/cologne
  • A rotting animal corpse among the flowers on the edge of the road
  • Excessive perfume/cologne in a sterile area (like a doctor’s office)
  • An unidentifiable unpleasant odor
  • The smell of an appliance motor burning out in a kitchen while cooking

This post, especially the part on smell, was extremely hard for me to write and made me feel nauseous. I had to stop after only a few ideas because I felt so grossed out. I recall (at one of my worst jobs ever) getting yelled at by a supervisor in front of coworkers because I’d told someone at the place I worked at that I found a situation to be disgusting. I am unable to do much to mask my “eww” face, even when I want to in order to not have other people feel judged or criticized. I joke with others a lot about how “weak my stomach is” and such to lessen how intensely they perceive my possible responses, but, even after all of these experiences, I am still a bit amazed to realize how visceral my reaction is to simply thinking about situations involving entrophy.

I question to what extent this way of being reflect neurodivergence on my part as I’ve had so many social interactions which indicate others are not all at the same place I am with it. My capacity for disgust clearly limits what I can handle in everyday life and has, at times, led to avoidance behaviors. Part of the reason I’ve socially withdrawn to the extent I have is that I am so sensitive to smells, physical sensations and sounds that it makes it hard for me to be around others, especially in unpredictable situations. Clean, organized, spacious, low-stimuli environments are where I function most effectively, which is why my house appeals to me.

What, for you, does entrophy represent? What situations, in terms of smells and/or your felt sense, remind you of entrophy and/or evoke a disgust response? To what extent are you affected by these types of situations?

At the Edge, With Helplessness and Hopelessness (Today’s Daily Remembrance)

It is not a good day for my capacity to feel optimistic and bright. My attempt to get accommodations at my job is beginning to look like I am going to be retaliated against or, at the minimum, discounted. I could not sleep last night and now have no appetite. In the face of this situation, I need to take some time to access my inner world.

I feel helpless and hopeless. I gotten to this place many times before in my life, but have often failed to label what I was feeling in the moment. I would get stuck on the external threat, perseverating on how to mitigate it, and would ignore all of my internal processes. After several hours of frantically searching the web exploring my next steps, I saw into my inner world and noticed how much each part of me was scattering in every direction at once. I could not calm or come back to myself at all until I acknowledged the state I was in. I’m feeling trapped, alone without anyone to help me bear the burden and worried that even more devastation lies–unpredictably and uncontrollably–ahead.

I fear that I’m at the edge of the crevasse I’ve done everything in my power to avoid, the place where I lose my job, my home, my healthcare and anything else that provides a semblance of normal life. I’ve never asked for accommodations because I feared doing so would lead to this outcome. Logically I know I’m many, many steps from this dire fate, but the landscape feels tilted towards my inevitable demise. That is what helplessness and hopelessness look like to me–drifting from “functional human” into an animalistic state where moment-to-moment physical survival is my only focus. Openly acknowledging the effects of my trauma feels like a direct portal into reliving it writ large.

The few responses available to me when I feel helpless and hopeless center primarily on either engaging in a fight for control or on surrendering in acceptance of my fate. The “be louder” side won last night as I spent hour after hour complying a list of questions and additional documentation for my employer. I won’t get any clarity for a few days at the minimum, and my energy is flagging quickly, collapsing into “come what may.”

The ledge I perceive to be closing quickly has never left me ever since I came to terms with my childhood trauma and ended contact with my parents. I knew living my truth meant I could lose at winning or fail at succeeding at life; I knew I had to take that risk over denying what they’d done to me in hopes of having a “backup” plan. I’ve sworn up and down I’d die on the streets before I’d let them back in my life and I mean it as much today as I did the first day I said it.

Rage starts overtaking me when I sit too long in this place. They (my parents) irreparably broke my mind and the thin lines of glue with which I’ve managed to cobble together a person are yielding to the pressures of my life. I’ve come to a razor’s edge but I’ve never been hospitalized or taken off any significant amount of time because of my disability. I’ve walked and ran and scampered to stay back from the ledge and I’m so, so tired of fighting for a foothold. I feel like I literally asked my job for one g-d extra rope to help me stay secured, and all that’s happened is I’ve slipped further towards the breach. I’m sure if I fall in, people will suddenly, magically gain an ability to see my struggles, all while totally and utterly failing to account for the shoves downward they gave me and the shrugs they offered when I extended my hand in desperation.

Let me, come hell or high water, not be a bystander to someone else’s helpless and hopeless moments, even if all I can do is point them towards available resources. That’s all my suffering ever teaches me, how to not add to other peoples’ struggles. I have no greater insight into when to fight and when to yield, or how to avoid my personal pit. How do you handle feeling helpless and hopeless? What feels like your personal “worse case scenario” in life, and how do you cope with its existence? What are some resources you use to keep from going over the edge into despair?

Lessons Learned (Today’s Daily Remembrance)

Today’s card invited me to consider what I have learned from a mistake I’ve made. What sprung to my mind, based on current issues I’m facing, is that I’ve lived “as-if” at times in my life to my own detriment. Specifically, I’ve muddled my way through life as if I do not have a disability, when in fact I do.

I am in the process of applying for accommodations at my job due to my PTSD. I do not know if they will be granted or not, but I recognize in coming to the point where I need to request them that I have finally accepted that I am significantly affected by my mental health condition. I am not doing “fine.”

For over a decade, I’ve lived in a shadowland of feeling completely overwhelmed emotionally but also terrified that the shaky progress I’d made towards autonomy would instantly collapse if I asked for mercy for any reason. I’ve been driven further into the fog by experience after experience where I’ve conveyed my limitations in personal relationships, only to have them be completely ignored or used to harm me. I’ve little faith that institutional mechanisms will prove more reliable, but I have to at least try to seek them.

I feel weak and pathetic for not being able to muster the resolve to defeat my demons, as if where I’m at in terms of functioning is a choice I get to make. It’s as if I’ve run non-stop for almost 15 years and yet continue to question why my knees are bone-on-bone. As though I’d chose this life if presented alternatives without PTSD.

My mistake has been not only in living without accepting my limitations, it has also been in believing my situation to be feast or famine. I kid you not, my conception of my world is one where I work as a professional and make a solid income or one where I’m homeless, with no room for possibility in between. Prior to the last few weeks, I honestly never considered attempting to get accommodations, as I figured my only alternative, if I could not manage anymore, was to quit my job. I question which other areas of my life I hold in the same untenable perfect-ruined dichotomy.

Are there any areas of your life where you live “as-if” and struggle to accept the true nature of your situation? What would it look like to face reality? Are there any gradients available between “all is well” and “it’s gone to hell” in the issue with which you are dealing?

Indulge in Self-Care (Today’s Simple Pleasure)

As a person affected by multiple chronic physical and mental health conditions, including trigemnial neuralgia, complex PTSD, neck and arm radiculopathy and an undiagnosed systemic illness that has left me dehydrated and exhausted after multiple episodes last night that included digestive distress, fainting and low body temperature, I have no spoons to give today. The daily chores that must be completed to keep me fed and my house cleaned seem significantly more insurmountable than they do when my physical state is healthier. Taking time to engage in a simple pleasure on a day like today is another task rather than a bright moment of joy, but I felt determined to persist as I know giving up when I feel like this will only restart a cycle of depression.

As I use my Simple Pleasures cards, I am giving myself permission to adjust their instructions to a certain extent. Today’s draw was actually to buy up to five dollars in lottery tickets, but I know the excited anticipation they could perhaps bring would be missing with me feeling as sick as I am. Instead, I decided to use the money to buy myself flowers, which have a coalescence connotation which feels appropriate to my current state. I like the fact that they will last at least half a week and will continue to uplift my spirit as they fully blossom. Everyone deserves to have the ability to engage in self-care when they are feeling down; I am grateful for the privilege of being able to do so for myself.