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.

Air after Rainstorm

I have been posting less frequently as of late. I thought I would be entering a time of rest and relaxation and have instead learned that I will likely have to begin a lengthy period of intense focus and large amounts of unpaid labor related to my job. I’ve gone through pretty much all of the stages of grief in relation to this. I was at first furious and then depressed that my plans had been dashed; I’ve now adjusted to the news as best I can and finding glimpses of gratitude.

In the context of this time of transition, the weather where I live has been equally unpredictable and out of sync with what it would normally be for this time of year. Today, though, we’re getting late-spring heavy rain. I went outside during a break in the downpours and was blessed by the intense earthy and floral perfume that seemed suspended in the saturated air. I have a pine tree and I noticed drops of water clinging to the end of each needle–the moment before, now and after co-existing in the surface tension.

The most joyous part of my meditation was the birdsong. It was bursting from trees in every direction and I felt that I’d stumbled into the middle of a sing-off between rival bird groups. For once, there was more non-human than human noise where I live and I relished the moment. How is nature showing up for you today?

Perennial Blooms (Today’s Simple Pleasure)

Last year, back when going to a gardening center was a totally normal and not at all potentially life-threatening activity, I purchased and then planted five perennial flowers. I don’t know what type they are and three of them died within a few months. Two plants, the ones with white flowers, not only made it through the winter but are now bursting with new blooms. Their endurance and resurgence, coupled with the loss of the others, is a reminder that there is a seasonality to our lives that is not fully predictable. I still can’t fully discern what lines the boundary of gratitude and grief, of loss and life, but I’m sitting with awareness of it today. What symbolizes this edge for you?

Open Space for Transition

I’ve been almost confused at times in the past few weeks as to why my mood is suddenly so much better than it has been in months. I realized today that a good part of the calm I’m feeling is the fact that I am no longer being misgendered* countless times every day. The few times it’s happened in recent weeks, it has stung just as much as it did in the past, but having it occur once a week doesn’t deplete my mental resources the same way more frequent misgenderings do. In addition, I’ve been getting “he/him” pronouns in one of my social media groups, which, although inaccurate, is much less painful than the ones I’m used to getting.

I can simply be myself now, and don’t have to put much effort into my appearance or being “read” correctly. Every now and again, I remind myself that I’m on T and that it will continue to affect how I look, because I’m a little worried I’ll first take a good look at myself in August, which is when I anticipate having to return to in-person work, and not recognize myself anymore if I don’t attend to the subtle changes that are happening.

I absolutely love not having to contend with others’ views of me and not needing to absorb their judgments unless I want to (in that I can choose when and how I engage much more than I could in the past). I don’t want this way of life to end, but I don’t think I can maintain my income anywhere near its current level if I try to work from home on an ongoing basis after this crisis ends. It is important, though, to know that enjoying minimal in-person contact isn’t a false fantasy I’m conjuring, but a lived reality I’m appreciating.

I have to fully re-start working from home tomorrow, so it will be highly interesting to observe how much of my positive attitude relates to the decrease in transphobia I’m experiencing and how much relates to the PTSD triggers which will start to pick up once I have more online interaction. I have seven weeks to get through and then I will have a few months off this summer. At the minimum, doing everything I can to be able to take the summers off consistently is a top priority for me in order to meet my personal and mental health needs as much as I can.

*My heart goes out to trans people that are currently trapped in abusive and unwelcoming environments because of stay-in-place orders. Here are some resources specific to COVID-19 and the trans community.

  1. Trans Equality
  2. Trans Lifeline
  3. Trans Advocate

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?

Action and Acceptance

In my graduate school education in psychology, I was taught to treat questions of “but what if” with a healthy dose of skepticism, to then ask, “what is the likelihood of that happening in real life?” I would then typically challenge my client to see how improbable it was that the fear would be realized. Sometimes, though, the unlikely occurs and we have to move through our disbelief into action and acceptance.

Psychologists frame action as a coping mechanism that stands in opposition to acceptance–namely, that we try to problem-solve. When our problem-solving fails at finding a solution, we move to a place of tending our emotions. We are also different culturally and constitutionally as to which strategy we tend to employ.

I wonder, though, if there is ample room for both. We can take steps to control what can be controlled as well as to make our peace with our fate. I cannot with people who try to placate me with telling me horrible outcomes could never happen, who discount the need for any type of coping. They already have for me as a small child, so I experience “don’t worry” as “I can’t hear or see your fear as legitimate.”

To me, acceptance is the antidote to denial; it is a coming to rest at a crossroads, knowing that I do not know which paths will remain open to me and that I do not control the maintenance of the roads. None of us can predict the future and none of us can preemptively problem-solve for all eventualities. All I ask of my future self is that, if tragedy awaits, I do my best to keep my dignity and self-respect intact.

My worst fear, the “but what if” that keeps me up at night, is losing my autonomy–my ability to choose for myself where I tread through my own solution-generation. I know there are monsters who prey on the vulnerable. But there are kind souls as well and, whether it is rational or not, I attempt to believe they are in the majority. I think that is what I will focus on finding in this trying time–examples of human compassion that existed even when it seemed like all the roads were blocked with boulders. In my own timeline, I do not know who I will meet if all my ways forward collapse into one, but what if they were trustworthy and brave? What if you or I are that person for someone else?

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?

Finding Peace in a Time of Panic

Leaders around the world have begun to reference the global pandemic within the framework of a humanity facing a war. We are admonished not to panic, whatever that means. In my country, our leadership’s been rudderless and we’ve received daily contradictory messages. Things are not fine.

As a person with lifelong severe anxiety, including PTSD caused by childhood abuse, it feels like I’ve spent so many years trying to tell myself that the world was now “safe” and that I could let my guard down. I’ve felt so jealous of people who are carefree and secure in their daily lives. Now I’m not sure if it was they or I or both of us whose prior learning deceived us.

The truth, most likely, lies somewhere in the middle. Our lives are likely more fragile and less guaranteed than the “everything will be fine” but also on stronger footing than “we’re all going to catastrophically die now” crowd would have you think. As a group, we need a range of tolerances for risk, otherwise nothing or everything would be chanced.

I keep noticing a theme of uncertainty as a driver for panic, but those of us who live deep in the realm of fear might know a different cause: no good options. The unknown isn’t what frightens me per se, it is the potential unavailability of a solution to whatever threat I might face that I find intolerable. I know what it is like to be trapped with no way out; I spent many years living that reality and it caused me to split myself apart internally simply to exist.

I refuse to bind my peace to the notion that no catastrophe will ever arrive at my doorstep. I find it insulting to be told not to worry or to trust that the higher-ups know what they are doing. The peace I seek is simply this–that there is more beauty than pain in the world. That, even in the darkest moments imaginable, kindness and compassion remain somewhere to be found, if not by me, then by the next person.

I’ve been shocked to find myself arriving at an inner well of actually giving a shit about the people in my life, a place I thought long lost and dried up. I’m not resorting to “me and mine” to the extent I would have predicted. I believe that crises can bring out the best in us, not because we avoid feelings of panic and terror, not because a solution will arrive if we simply hope enough, but because there is something central about teamwork and collaboration to the nature of being human. We will find our peace in this, together.

A Good Distraction (Today’s Simple Pleasure)

With national and global events heading into a tailspin, I’m finding myself seeking out ways to engage my mind that do not involve worrying, planning or taking action. Although I am taking events seriously and have created several posts recently that speak to the deliberations and reactions I’m having, staying in a gloom and doom state for extended periods of time will only lead me to respond in unhealthy ways. So, I’ve found myself “gaming” more than I have in a long time.

I put gaming in quotes because I do not even own a television, much less a gaming system. I’m basically one step removed from a paper-and-pencil crossword in terms of what I find enjoyable. Too many bells and whistles overstimulates my mind and I get a headache. I dislike most board games as well and find myself immensely bored by the rigidity of the schema under which they operate. In general, I prefer games that are either entirely word-based or that involve abstract, image-based strategy.

My current favorites include the NY Times Tiles and Mini-Crossword games. I’ve also downloaded the apps Word Search and Tiny Bubbles. I’ve yet to venture into games that involve communicating with other players; I suspect, based on how much I’ve hated board game-themed parties, that I would not be a fan. I find it fascinating to consider how our brains approach human-made puzzles in different ways, with some of us enthralled and others of us wanting more nature-based experiences. To what extent do you consider yourself a gamer? What types of games, if any, do you enjoy? How does your brain respond to mental puzzles and challenges?

In Case of Emergency (Today’s Moment of Gratitude)

Today I am grateful for a feeling of empowerment I’m accessing as I better organizing my personal affairs. I would likely come across to most people as the type of person whose file drawer is enviable, but the reality of my schema for categorizing documents and the like is that I store most of what I need to function as an adult in my head and/or computer, so there is little evidence of how I manage bills and such that physically exists in my life. I have a plastic bin into which I’ve placed most of my important documents, but it could easily take someone hours to sort through it to find the one they might need.

The realities of the potential for a healthcare crisis (among other threats) in my country has pushed me into the realization that, were I incapacitated, it would be difficult for someone to step into my life and manage things for me. Lacking a spouse and family puts in me in a much more precarious situation than most people, one that has left me inert with anxiety ever time I’ve tried to cross this threshold of preparedness. Now, though, the threat is more real than it’s ever been to me and I feel compelled to take action. I am compiling a binder with all the relevant information necessary. It should serve not only the emergency for which I am designing it, but will also be something I can grab and go if there is a natural disaster.

I am also planning to meet with an “elder law” attorney this summer, even though I am decades off from being considered elderly. I need to know my options for designating someone to manage my healthcare as well as the welfare of my dog, should anything happen to me. What I find bizarre about the whole situation is that I’ve been suicidal more times than I can count in the past, sometimes seriously, but taking these steps of actual preparation feels very daunting and challenging. I suppose I’m not afraid of being dead but I am extremely scared of losing my autonomy and having to rely on others to ensure my safety, so much so that even planning for it feels risky. I’m grateful, though, for the privilege of being able to make choices now for myself as I find the courage to face my fears and am taking concrete steps forward. What is something you’ve been putting off that you’ve begun to address?