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.

It’s Not Normal and It’s Not New

I hate the phrase “the new normal.” Implied in it is an expectation of psychological adjustment, without any of the requisite grief and mourning that adjustment will require for many. For some, their life narrative may have a framing of “life before COVID” and “life after COVID;” for others, this may not be the most significant shift in their story. Although the event is universal, the impact is unevenly distributed. I think it reeks of privilege and a shallowness of one’s capacity to feel to assume everyone, including people who are being disproportionally affected, should instantly absorb earth-shattering change and move on having potentially redefined nearly every aspect of their life as though nothing happened.

As a trauma survivor, the framing of the “new normal” is all too familiar. We have mantras like “forgive and forget” in our society as a way to absolve the bystanders of a need for collective grief when any one of us is harmed. This moment and the moments to follow deserve a witness. They deserve a deep grief, if not for our personal pain, for our collective suffering. I think we vary in terms of how much of this we can individually bear, but to mock and label cowardly those who do so on behalf of us all reveals much about one’s character. I hope life grants you the space and support to feel what you feel and to adjust to what is unfolding in your way and your own time.

Suffering Fools and Finding Grace

I’ve been burning with a bottomless rage for weeks now, the flames of which only intensify every time I read another news story or see another image of people without a moral core demanding their “freedom” to infect themselves and the rest of us with the virus that causes COVID-19. I’ve finally been able to put a name to what I’m witnessing, which is dehumanization. We’re being told that, if we are “true” Americans, we should be willing to die for $10/hour to prove our “patriotism.” We are disposable and our physical vulnerability is an inconvenience to the machine of capitalism.

Wrapped into this package of dehumanization is a concept of fairness that sickens me. People would rather a good portion of their fellow citizens die than risk anyone sitting “idle,” taking from others out of laziness. Undeserved generosity and kindness are viewed with more contempt than preventable suffering, disability and death. On these fools’ lips, “I helped someone who wasn’t as grateful or as invested as I believe they should have been” is a worse outcome than “I spread a deadly illness to others through my selfish desire for, let’s say, a haircut.” No, it isn’t “fair” when people take more than they need, but it sure as f*ck isn’t fair, right or moral when one’s actions kill others because of their own unquenchable want of “freedom.”

I feel no empathy for people whose craven stupidity endangers us all and I want karma to find them. I lack grace; I find myself in my mind’s eye at a moment of decision–would I swing fate their way if given the choice–and all I want is vengeance. They force me to confront my inner demons of hate and my inability to turn away from wanting payment for injustice. They are still human, they are still made of the same stuff of which I’m made and yet I cannot bear the thought of them existing anywhere in my daily life.

I believe that my lack of care is part of the legacy of unresolved trauma that I bear. Having been violated and having no justice served me for my childhood, my rage looks for new villains and finds them in every direction. I know grief is the answer; as I sit with this notion, what comes to my mind immediately are the innocent that are suffering and that will suffer because of the horrible choices people are making. The restaurant worker forced back because they will otherwise lose their unemployment, only to be exposed by a customer who just had to meet up with friends. The healthcare worker who may make it through the first wave only to bring the virus home to a loved one after exposure to a person who decided a vacation was in order. I feel so powerless because COVidiots do not listen to reason, but I can focus my energy on the people who are doing their best to protect and support others during this crisis and on those who are most vulnerable to its effects.

I ventured to a nature area today and witnessed dozens of people on my journey who were violating the mask-wearing and social distancing mandates in my state. My anger grew exponentially and I flipped off a sh*thead who drove his bike around my car despite a fire engine coming from the other direction with lights flashing. I’d about lost hope when, with a block from my house, I passed a young person wearing a flowing purple and blue bandanna around their face. The elegance of the mask-wear’s choice of garment brought to mind my bedrock belief: in the midst of our present suffering and our subjugation, there is more beauty than pain in the world.

The Blame Game (Today’s Daily Remembrance)

I’ve spent today getting blamed repeatedly for something that isn’t my fault and having every offer of help I’ve given batted out of my hand. I’m being cast in the role of villain in another person’s story and wow is that triggering as f*ck to someone with complex PTSD. It is so difficult for me not to take a personal attack to heart.

I was able to give myself a little space and realized that what was happening was that I was being manipulated with a “give me what I want or I’ll leave you” to which I said and meant “okay leave if you must” which only caused a further escalation of emotions. I hold my boundaries sacred and refuse to allow myself to give into manipulative tactics, but the emotional waves I have to ride in doing so are quite large. I feel angry and anxious.

It takes a lot of social support to resist the efforts of someone who is being abusive, which I’m sure is why abusers try to separate their victims from loved ones. I immediately sought out others who might be influential in the situation I was facing, both to make sure I was protected and to process my reactions. They helped me parse apart the practical part of the situation from the emotional aspect of it, which is allowing me to be dispassionate in my overt response.

I’m still reeling a bit and am not certain if the situation is resolved or if it will continue to escalate, so my anxiety is intense. I’m trying to calm myself and ground myself in the here and now but it isn’t working very well. Having someone else dump what is their responsibility on my lap and blame me for the mess makes me want to clean up what I didn’t spill. I need to brush myself off and walk away, leaving them to manage their own outburst and to seek me out if they choose to do so once they’ve found a better way to communicate. How do you handle being unfairly attacked and blamed for someone else’s issue? What do situations like this trigger for you? How do you protect yourself mentally when faced with another’s scorn and wrath?

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.

Why I Write (Today’s Daily Remembrance)

Yesterday, I missed my first daily post since starting this blog. I had an unpleasant obligation in the afternoon that disrupted my normal writing schedule and I forgot to come back to post. Perhaps that is why I continued to have strange dreams and felt restless!

After this unintended mini-break, I decided to reflect a bit on what this blog has meant for me. I began posting to this blog last September, first with recording simple pleasures and then expanding into topics like card draws and meditation. I’ve also chronicled aspects of my journey as a trans and non-binary person and discussed life as a person with disabling PTSD and other chronic illnesses.

I am proud of the fact that lots of aspects of who I am are able to show up in my writing. This blog functions primarily as a personal record of my life, but there have been days where I feel that I have a message I need to share with others. Something about having to craft my words to be comprehensible to an audience functions so much better for me than trying to write a paper-and-pencil journal.

I don’t have a particular goal or “next step” set in my mind for my writing, but I am looking forward to more free time in about a month and a half during which I hope I can further reflect on where I am at in my life and what I’m learning. Writing on my blog feels like exercise most days, something that I don’t necessarily always want to do, but something from which I benefit every single time I engage. What does your blog mean to you? What do you get from it, and what goals, if any, have you set regarding it?

Befriending the Fearful Parts

Today is barrels of fun as I’m dealing with the potential for severe weather as well as the ongoing pandemic. Right after learning about the upcoming weather events, someone posted “tips” for dealing with anxiety on a social media site I visited. What they wrote immediately irritated me as their message was basically “think positive” and “distract yourself.” That approach may work for some people, but, to me, it dishonors the role that parts of myself–the ones with strong emotions–play.

Anxiety is often relegated to the role of a deceptive betrayer, a cowardly enemy or a feminized hysteric in modern culture and modern psychotherapy. I find it unfunny but ironic that many of the exposure and response prevention tasks that people with contamination OCD have had to endure, such as touching a doorknob and not washing one’s hands, fly directly in the face of declarations from the W.H.O. and the C.D.C. in terms of dealing with the pandemic. We have been told to fight our fears, to quell the whispers of obsessive thoughts and to “calm the f*ck” down” when, in reality, the world presents dangers. I find myself deeply questioning the years of training I received in graduate school, wondering how much the “treatment” of anxiety is really a tutelage in social norming in order to not disturb the sheltered peace of the privileged optimists among us.

What relationship can we have, then, with our anxiety that does not trade fighting for subservience and terror? I view it as one of acknowledgment, honorance and the formation of an alliance. If this framing doesn’t work for you, ignore it! I first encountered in during Buddhist practice and immediately knew it was for me, but it may not be the story you need to tell.

To me, getting to know the scared parts of myself is first a practice in realizing there have been and continue to be things that are frightening in the world. I’m not “stupid” or “over-reacting” when I worry. I concentrate on the process of how I worry and thank the parts of self that bring worries to my mind for their care for me. There is a way to worry well or at least to negotiate with worry. I take action based on my fears, action aimed at reducing the likelihood that they will come true as well as methods of building resources if they do. Sometimes, my fears fuel panic-buying, but I’ve grown to trust myself more deeply than I did in the past, so this happens here and there, not with consistency. In short, I prepare for danger, and, in doing so, often fear it less.

I also check in with myself and with my fear to watch the extent to which it is based on concrete reality and the extent to which it is a physical reaction to stress. I find that I actually have the most difficulty with anxiety after a stressor has occurred, when I’ve taken all the practical steps possible and simply am in a state of waiting for resolution. For me, behaviors such as not sleeping or eating poorly can create their own spin-offs of fear that have to be managed by self-care.

Perhaps because I’ve been invalidated for my fears on a non-stop basis, told not to worry, that my worries are unreasonable or that they don’t deserve attention, I’m not good at remembering that, even if the worst happens, I’m not alone. There may or may not be people willing to help or sufficient resources to recover, but, even if safeguards fail me, we are interconnected and each of our lives, in my worldview, are more than a beginning and an end. What would it mean to tell the next person you hear panicking that you will be there for them in whatever way you can if their worries come to fruition, rather than telling them not worry? To have that said to you? I try to do this for my anxious parts, to let them know they aren’t going to be abandoned to fear, that the rest of me will consolidate and bring the resources I have to bear to manage the situation.

Anxiety, even at the “pathological” level I possess of it, isn’t my enemy. It does not deceive me. It isn’t hysterical. It is a biological response that has been preserved in pretty much all animals by the process of evolution to warn us of danger. Humans have the gift of foresight, of anticipating threats before they occur. We can rage against this capacity, deny its presence, numb it or attempt to silence it through invented worlds of positivity, or we can come to know the inner monsters we hold and realize they are frightened children who need love. We can come to know it as a part of us, steady in its reliable angst, and, like all parts, only made whole when it is welcomed into the family of our being.

Inner Complexity (In the Cards)

I brainstormed questions to my parts for a card for my In an Open Hand deck today; I have several left to create for the spring season. Today’s focus was about showing all sides of who I am. In reflecting on this theme, I was struck by the contradictions and nuances I’m finding in the unexpected expansiveness of being able to work from home.

From last August till this March, my mental health condition (PTSD) had been getting significantly worse, and I was struggling to find hope as I faced a seemingly unending series of triggers. Being able to disengage from face-to-face contact with people entirely has been a godsend to me, an experiment I never would have contemplated life would have enabled me to undertake. I’m “supposed” to be feeling lonely and anxious, but I feel calmer and happier than I have since last summer. My daily thought isn’t “when can I get back to normal life” but rather “oh shit, what am I going to do when I have to get back to normal life?”

I keep reminding myself that I’ve had more phone calls and text conversations and Zoom sessions than ever, so the feelings of peaceful relaxation may not be due solely to the change in the frequency of in-person interaction I’m having. I don’t know what it would be like if my internet and phone went out and I was truly alone with my thoughts, but I’m not convinced it would cause me immense suffering. Having to interact with people, especially in tense situations, causes me immense suffering.

The image that comes to mind is a broad path to the top of a mountain. I’ve managed to wander off of it and now the bridge across the stream it crosses has washed out, so climbing it is out of the question. I’ve meandered into a beautiful meadow filled with butterflies and tall grasses and a healing sun, and the shouts and commotion of “other people’s presence” are growing more and more distant. I’m no longer remotely convinced climbing the mountain of success through relationships and money holds any proximal or distant joy for me. I still require a sense of community, a sense of being a part of humanity, but what if I live it in my own garden and share my bounty in ways that work for me, rather than in a rigidly-defined and prescribed form?

There is still immense grief for others and the potential for my own losses in all of this; I’m not rose-colored in my meadow. I feel that finding my own place and pace is allowing me access to expressions of community and solidarity, instead of isolating me from them. Perhaps the best way I can say it is, more days than not (there was a notable exception), in the past two weeks I think I’ve come closer than I ever have to experiencing what it would be like to live without PTSD triggers constantly at the ready, and I love it and I don’t want to leave it. I never thought I’d have an opportunity to experience this side of things. I hope who I am inside can bundle the memories of this in a way that informs choices I make for myself in the future. What are you learning? What inner needs are making themselves known to you?

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?

Answering the “What Ifs” (Today’s Daily Remembrance)

After several days of non-stop work, today has been a bit slower. And, predictably, my mind now has a few seconds to spare to race towards “what if” scenarios. The area where I live is already in a state where bars, restaurants and schools are closed, and I’m afraid that even more stringent requirements may be enacted. My primary concern is about whether I’ll be able to keep my job and keep my house in functioning order. I’m mentally (not in reality) racing to the place on the path where I’m at the end of myself and have no idea how to proceed.

About a decade ago, when I began my current job, I moved across several states and had barely settled in when my then supervisor (thankfully not working at my job anymore) threatened to try to get me fired. I honestly believe her motivation was jealousy more than anything else; it is a long story. That experience was the closest I’ve come to “I’m lost without direction.” I dissociated to the point where I kept thinking I was dreaming and would snap in and out of glimpses of reality. I worked the way I’ve worked the past few days for months on end, doing everything I could to prove myself worthy (I also kindled a flame of burning hatred I carry to this day towards her). The experience scarred and traumatized me; the feeling of having put in decades of work and finally “arriving” and then being told it could all be taken from me without cause hasn’t left me. I didn’t learn anything from it because I did truly lose myself when the crisis hit; I became suicidal and a workaholic rather than comforting or being with myself through it.

I want to say to the terrified small parts of self who chorus their “what ifs” to me: I’ll be here with you in it if it comes again. I may lose my job, my house, my pup and my health (my four biggest worries), but I do not have to discard who I am if any of those losses occur. I have resources and I have coping skills that I did not have in the past. What do the little or young parts of self need to hear from you today? To which events in your life does your mind unconsciously cycle if you are feeling anxious, helpless or hopeless? What’s different about your life now than it was then?