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.

A Shift in the Wind (Today’s Moment of Gratitude)

I’ve been experiencing brief moments of intense grief since the pandemic began; today’s was a doozy. A friend whose baby shower was cancelled stopped by to pick up her gift. I stood by the window with my pup. He was so thrilled to see her and then seemed saddened when she left again right away. The realization that I won’t be able to spend time with her in person before she gives birth and may not get to see her newborn baby till who knows when really hurt my heart.

It’s been humid and unseasonably hot for a few days here. I walked outside a few minutes after my friend left to discover a sudden change in the weather. The wind was swirling the tree buds in every direction and the temperature had dropped considerably. I felt my grief surrounding me instead of locked inside me, as though nature was responding to the exchange that had just taken place. I came inside and snuggled with my dog as I re-calibrated my equilibrium, not quite the same person I was earlier today. Each loss, each moment of grief, however small, registers a note in the symphony of our life that we ignore to our peril. Witnessing nature play the melody for me was truly a gift.

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?

All Together Now (Today’s Daily Remembrance)

Things are shutting down left and right where I live as daily cases of the virus that causes COVID-19 are doubling within a few days. As my coworkers, friends and neighbors and I deal with the situation, a singular experience is rising to the surface for me. This crisis isn’t personal, it’s global.

I cannot tell you how many times in my life I’ve dealt with a personal crisis and felt completely alienated from the happy, calm people around me whose lives seemed to be humming along perfectly while mine fell apart. There is such a lie at the heart of trauma–that. because our experience was unique, we alone have been ruined and bring ruin into our lives. I feel more energized and empowered than I have in months. It is because I can move away from a place of “I suffer alone” to “we’ve got this, how can I help.” I was made for this type of situation, and, because it has not yet involved an overwhelming amount of interpersonal conflict, I am not triggered by it.

The realness of the fact that I have a mental disorder, PTSD, rather than a personality flaw is becoming crystallized in my mind. Sure, I’m not coping perfectly and have had mood swings and trouble sleeping. But, I am not feeling helpless or hopeless. I am attacking the challenges that face me instead of crumbling underneath of them, and it is happening in large part because almost everyone around me is validating that this is a crisis and that we are here to support each other in it. How different would my everyday life be if people responded to my PTSD with support and care and took my triggers as legitimate?

Underneath of all of this is a feeling of being a real human for once, rather than a cobbled-together set of traumatized parts trying to masquerade as a real person. I feel more adult, more helpful, more reassuring and more kind than…I don’t know when. Apparently all it takes is absolute chaos, danger and a global pandemic to realign my interior into an optimally-functioning collaborative. If you are a trauma survivor, especially one who deals with dissociation, how are your parts holding up right now? What reorganization is occurring? What inner truths are rising to the surface?

Tips for Coping with Social Distancing Measures

There is evidence of community spread of the virus that causes COVID-19 near where I live, and daily life is rapidly changing. Events have been cancelled, my job may be moving to e-learning and social distancing is the buzzword on everyone’s lips. I wanted to share a few ideas I have about how to cope.

Action and acceptance

I wrote about this topic yesterday. In terms of steps to take, what I want to share is to encourage you to take steps to deal with the situation at hand that are measured, within your means and accessible to you. I’ve been stocking up on basics since January, so I’m now in the stage where my anxiety is fueling me to want to purchase, for example, a 3K generator. It can be really difficult to discern between what is rational and what is panic-based; if at all possible, for larger purchases, I try to wait 24 hours before making a final decision.

In terms of acceptance, there may come a point for each of us where we reach the end of our capacity to prepare or to respond to the crisis. I won’t provoke your anxiety by laying out examples as, if you are as skilled at freaking out as I am, your mind has no trouble delivering these to you. This is the place where I think practices of spirituality and faith in humanity have to come to bear. My hope is that something greater than myself will guide me and someone kind will meet me if I arrive at the end of my means. The groundwork for this response, for me, has been years of inner work and (much less successfully) attempts to build a social support network. Each of us might have more at our disposal than our scared inner children let on.

Self-Compassion

Give yourself permission to be only as active as you need to be to maintain your health and responsibilities. I’m seeing a lot of posts about learning a new hobby, finishing the book you were writing or completing a home repair project if you are asked to stay home. Although these suggestions are well-meaning and perfect for people who need to stay busy, they can be overwhelming to those of us with workaholic tendencies who may feel that we are not being as productive as we should be.

I do encourage you to develop a daily schedule with as much time as you are able to devote to self-care and reflection. It is healthy, in my opinion, to pause from time to time to check in with yourself and your loved ones and to see how you are coping. Mindfulness and other practices can help get us out of the past or the future into the present moment.

To the extent that you are able to do so, be present with your emotions. It is okay to feel angry, scared or sadness. I’m struggling with an angry “I told you so” after my concerns as to what was coming were dismissed and mocked by several people IRL. Rather than stuff down what feels like smugness, I’m sitting with it and asking myself how I might respond differently in the future when someone ignores my advice. Our feelings are excellent, in most situations, at helping us identify our underlying needs.

Community Connections

As I shared above, social support is key to making it to the other side of the pandemic in a way that tends to our mental health needs. This is the time to get creative and to find ways to connect with loved ones, even if it has to be through virtual settings. A monthly meeting I enjoy attending has been cancelled, so we are considering hosting it virtually if the quarantine continues next month.

Take a mental headcount of the people in your neighborhood or local community with whom you might partner to meet basic needs. I’m learning about so many agencies that exist on a city and county level that I did not know were there to support the community. If it suits you, determine whether there are ways to support healthcare workers who might be highly affected by this crisis.

What are you doing to cope with social distancing if it has been implemented in your area? If it hasn’t been yet, what can you do to prepare?

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?

“Don’t Worry, Everything Will Be Okay”: An Insidious Form of Denial

I wrote yesterday about feeling that my energy was misdirected by trying to warn people who are complacent about the coming (or already arrived, depending where you live) pandemic. It got me thinking more broadly of how people respond to my fears and ways that I have come to discern between people who listen deeply and honestly and those who deflect. I’ve described both stances below (there are of course way-stops between these approaches and times we might use one or the other depending on our energy level) as well as ideas for self-care if you are an anxious person.

“It’ll be fine”

I have a standard retort for people who tell me my worries are unfounded: how do you know? Unless they are a trained expert in the area, at which time I will defer to their judgment, someone telling me I’m “worrying about nothing” gives me far more insight into the nature of their character than it does into the rationality of my anxiety. I definitely believe that some people operate from a default of denial–nothing is real unless it is affecting them personally. They obfuscate and deflect legitimate concerns because these anxieties hint at the fact that the world can be an unjust, unfair and brutal place. If it isn’t happening to them, it can’t be happening.

Yes, those of us with heightened anxiety can easily overestimate the potential likelihood of a danger occurring, but we can also spot trouble before it arrives. I contingency-plan with the best of them and, because of my efforts, I steer clear of certain issues into which others move without pausing. Holding back “I told you so” strains my throat when I notice my unheeded warnings coming true again and again. Attempting to protect one’s self by denying reality has as many consequences, if not more, than wasted worry.

“I have my doubts, but we’ll face it together”

Responding to someone who lapses into extreme anxiety does not mean engaging in panic yourself or denying your read on the situation. Rather, it is perfectly fine to share fact-based evidence that might help to mitigate some of their concerns, especially if you ask permission first. This is where I have would-be comforters lapped; I can quickly absorb a tremendous amount of factual information, so I am ready to go with the latest scientific statistics and projections while they share three-week old data they heard on a podcast. On the other end of the spectrum, anxieties that have little basis in reality might be easier to counter with science, but the people who struggle with them might also be less receptive to scientific reasoning.

To me, the best way to support someone who you might view as “fear-mongering” or overly worried is to establish what your objective take on the situation is, and to then focus most of your energy on the trust you have in both the other person as well as in your relationship. When I share my pandemic prep with people IRL, I wish at least one person would say something along the lines of “well, I know who to ask if I decide to prepare a list of items.” The most I’ve gotten so far was someone declaring they would come to my place if the shit hit the fan, which only angered me at their callousness. If you can connect to the person and let them know that you appreciate their forward-thinking nature, even if you believe it to be too trigger-happy, as well as let them know you will be there to help them cope if or when the situation fully develops, it may help them come down from flight or fight into a more productive, problem-solving state. Scared people make rash decisions; prep for an event such as a pandemic requires a rational response, not a panic-stricken hoarding of toilet paper.

Mental Self-Care for the anxious

If you are reading this as a highly anxious person yourself, here are some practical steps you can take if you are facing a situation that seems to concern only you and in response to which you are being told you are over-reacting.

1. If possible, consult the experts. Nothing is worse in my mind in regards to anxiety than getting riled up by people who have an agenda to push or those who base their ideas on fantasy. Find the scientifically-accurate experts who do not stand to benefit in a substantial way from peoples’ responses, and listen to them. In regards to the pandemic specifically, this is the person to whom I’m listening (as well as reading research as it is published).

2. Share your concerns judiciously. Even if your anxieties are pushing at you, decide whether the person to whom you want to speak is likely, based on past experiences, to listen carefully or to simply dismiss you. If someone acts as though you are completely irrational, consider whether there might be other people in your life that would be more open to hearing what you have to say.

3. Before taking any practical steps, if possible, make a list of items you might acquire or plans you might enact, and then wait at least 24 hours (or a good night of sleep minimum) before you follow through on what you are considering. I have worked myself up in recent days into wanting to buy an oxygen concentrator and a large solar power station. Because I slowed myself down, I realized the oxygen concentrator’s cons outweighed its possible benefits, and that I would face serious security issues with a solar setup as it would have to be placed in front of my house and would therefore be highly tempting for someone to steal if we actually end up in a situation where it would need to be deployed. By slowing myself down, I resisted panic-buying and have been able to better use my resources.

4. At the end of the day, remember that we all die, some of us in unexpected ways. I keep this truth in my mind not to feel depressed but to boost my feelings of acceptance of my life situation. When we run out of practice steps in handling a crisis, coming to terms with the reality of it can, at least for me, open internal space for contemplation and grace, rather than a raging “there has to be a way” as the elements consume.

5. Remember you are likely not as alone as you might feel you are. There is a limit of rational action that I can take at this point, and, as terrifying as it is to me, I find myself coming to a growing knowledge that I might have to *shudder* cooperate with my neighbors if things go really side-ways. In modern Western societies like the one I inhabit, there is a particular sense of individualism where people may literally never speak with or help out their next-door neighbors, not because they hate each other but because they are able to sort their lives in a way that does not necessitate such interactions. I am not so naive to think that my federal government will do anything useful, but I have a bit of trust in my local officials to try to mitigate disaster and in myself to work with others as needed. Scarcity can promote selfishness but it can also promote sharing; I hope that the latter is what rises to the surface in the areas where people are struggling right now.

In conclusion, a person’s level of anxiety is not the best marker of their capacity for acting in a rational way. People can under-react just as much as they over-react and can respond too slowly to a crisis as well as too early or without justification. If you are highly anxious as I am, my advice is to reserve your time and energy for acting with as much objective reason as you can, with the support of people who know what they are talking about because of their education and experience, as well as those in your life who offer a caring, gentle presence when your anxiety gets the best of you. Please share how you care for yourself as an anxious person!

Dulled Senses, Empty Body

CW: Discussion of dissociation, PTSD and effects of trauma

After a long weekend during which my illness and the weather has kept me house-bound, I am finding myself feeling and acting disconnected and detached. As part of my chronic PTSD, I struggle with dissociation, which manifests in varying degrees. At its most extreme, I feel physically numb and unbound by the normal constraints of time and place, unsure of where I am, who I am and what is happening. Today isn’t like that, but is instead a more subtle form in which I feel deflated, apathetic, mentally dulled and aloof. The more I try to find myself in terms of sensing my body, the farther from it I feel.

I’ve been in and out of crisis mode after a series of severe triggers last holiday season. I know that seeking accommodations at my job is likely to lead to a confrontation of some sort, whether it is in needing to advocate further for what I need or dealing with the fallout if I get what I’ve requested. On days like today, where I know a storm is coming but the weather is perfectly calm for now, I shut off to a degree that all of my creativity, spirituality and even my connection to my physical being feels severed. Internally, I’ve gathered all the valuables and am boarding up the windows and doors, even though I feel so calm in my actions that the shift seems invisible.

As I sit with this reality, the relational disasters I’ve endured make more sense. Someone triggers me, but only the parts of me who protect me fully perceive the danger. They scatter inside me and prepare to abandon ship, but I’m still listening to the band play and enjoying my dinner, oblivious to the coming calamity. When everything lists and panic ensues, I’m somehow already at the head of the line for the lifeboats, but can’t understand how the small gesture or unkind word was the tipping point. In other words, I perceive events through multiple filters, and have already pulled the plug without knowing I was about to do so, yet am conscious of my decision to jump overboard after a more minor rattling or shaking–
“the final straw”–occurs.

It’s terrifying to feel that the leavings I take are pre-ordained and mostly out of my control. Yet, I have not regretted very many of them, irrational though they seemed at the time. It is scarier still to feel hollowed-out in the moments between the initial decision and the final withdrawal, abandoned yet waiting to run. I think I’m afraid but I can’t feel fear, because fear could quicken my footsteps too much and I wouldn’t successfully plot my course. So instead I am feeling and knowing nothing but the awareness that an signal is coming and I will need to, with immense speed and focus, react to it when it occurs. I’m living wartime again, the battle of a childhood of indifference and hatred punctuated by sheer terror and violation.

Self-care is only conceptual to me right now. I can try to rest but will drift into flashbacks. I can reach out to a friend but may endanger my relationship by being easily triggered. My main coping skills are to immerse myself in television and stories, so that other people’s stories replace my singular one into which all the threads of my life weave and to gorge myself on unhealthy foods so that the confines of body become known to me again. I intensely and spontaneously craved junk food yesterday for the first time in weeks and couldn’t understand why, but its purpose now seems clear. I shut down to conserve energy for the fight to come, even though my methods likely soften rather than harden my defenses.

I will come back to myself and will come more whole again. I’m in a temporary state of dissociation after repeated triggers that overwhelmed my healthier abilities to cope. Were I hysterically crying or having panic attacks, it would be easier to first detect and to then address my needs. It is substantially more difficult to notice the lack of a normal reaction as opposed to an exaggerated one, but they can both be equally destabilizing. Have you ever dealt with dissociation? How does it tend to affect you? What do you do to cope with apathy and detachment?

A large christmas tree outdoors covered in red balls and large white snowflakes.

Visiting the Zoo on Christmas (Today’s Simple Pleasure)

Christmas (along with my birthday) is one of the most difficult holidays to manage emotionally as someone who is estranged from their family and who struggles to connect in relationships. I’ve been invited at times to friend’s houses for the holidays, but have found being around an intact family stirs up more pain than it soothes. I’ve also tried staying home and telling myself it is just a day like any other day, which tends to lead to binge-eating and/or wasting money on online shopping. This is the first year that I chose to engage in an activity on my own.

I visited a local zoo and was greeted more times than I can count with a “Merry Christmas!” Each time I heard it, I felt a little less like I was missing out on something and a little more like I was present experiencing something. None of the other zoo-goers were particularly festive, although I did see one child gifting another a pale-stripped candy cane. The zoo itself was decorated in holiday themes galore and the cafeteria offered a special holiday menu.

I’d only ever been to low-budget “zoos” growing up, the kind where some crank gathered together animals in questionable housing and in which their distress was palpable. I have mixed feelings about even the highest-quality places as keeping animals locked up feels against their nature. As I visited the zoo near where I live now (which is much better than the ones I had growing up), I felt an internal clash of recognition that the animals were safer than they’d be in the wild and that they were serving as “ambassadors” for their habitats, but also that they weren’t free to live life on their own terms.

A polar bear diving into water.
A polar bear diving into water.

The animal that pulled at my heartstrings the most was the polar bear. I got to the zoo right as it opened and walked fast enough that I was able to see the bear alone. I was very upset when I first saw it as it was pacing back and forth in a small area and looked agitated. It was scratching its sides against the enclosure in a frantic rather than soothing way. As I stood watching it and willing it to calm, it looked at me more and more directly with each pass. Finally, it jumped off the small ledge on which it was standing and swam right up to where I was standing! I felt immensely connected to it and an overwhelming feeling of sadness to which I could not put words overtook me. I’m sure my emotional reaction had little to do with what the bear itself was feeling, but, in that moment, I believed that something more than two beings staring at each other was happening. I could barely bring myself to leave the exhibit.

A small deer-like creature peering through a wire fence.
A small deer-like creature peering through a wire fence.

The animal that delighted me the most was a small deer-like creature (I did not pay much attention to the information on the signs). When I first approached the enclosure, I only saw one deer and it ran away from me. I looked to my right and there was this little one only a few feet from me, gazing at me with amused eyes. It kept regurgitating and chewing cud (or something like that) which was not the most pleasant eating practice to watch, but I felt joy and a sense of adventure in its perkiness.

The zoo is very large and I’ve purchased a year’s membership, so I left several exhibits unexplored, waiting to be visited next year. On the whole, it felt so good to do something aside from spending money on useless trinkets or stuffing my face with junk food on a day on which my sense of alone-ness in the world tends to peak. Holidays are not necessarily a choice, for those of us with difficult family issues, between spending time with people who have harmed us, crashing parties that heighten our distress or curling up alone crying. We can make whatever we want out of it. Merry Christmas (and Happy Holidays!).