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.

Little Losses, Big Complaints

Can I get a refund on today? I’m sure almost everyone has had one of these days, where negativity and frustration seem to be waiting around every corner. I won’t bore you with my list of “all the things that went wrong out of nowhere” but it is growing by the minute. I’m searching for grace and it seems to be as elusive as ever, although I’m noticing that my body isn’t physically reacting as intensely as it normally would be by this level of ridiculousness.

I feel like complaining to someone and then I find myself swinging internally to a feeling of guilt for not being more grateful for the blessings I do have. The phrase “in the grand scheme of things…” feels like a necessary preface to everything that isn’t 100% positivity during the international crisis we are facing. I find myself judging others as harshly as I judge myself in this regard, having little empathy for those who are complaining about the celebrations they don’t get to have while others are forced to endure the lose of the opportunity to properly mourn their dead. How do we hold our own disappointment and give it the space it deserves without conflating it with trauma and grief? Can something one person might consider a mere disappointment be a real loss to another? (The answer’s yes, I just needed to write it out to see the truth). Is it alright to complain about a bad day when others are suffering more severely? (Yes, but how?).

I’ve found myself biting my tongue when people post “woe is me” style about minor inconveniences, at times wanting to insert a “check your privilege” in response. I don’t know that asking permission before complaining always sets things right, but it feels like one measure that can reduce an “I’m suffering–get over yourself” exchange. I also find tapping into the emotions that a situation is causing to be a way to connect. “I’m sad/angry/anxious because I no longer get to…” is slightly less obnoxious than “Can you believe I don’t even get to..!”

As I sit with my own anxieties and disappointments of the day, what brings things home for me is distilling the situations I’m facing down to the core fear they provoke–being rejected, being impoverished, going hungry (I’m pretty sure you would roll your eyes HARD if I shared the situations that are leading to these base fears). If I get to the heart of why something sets me off, it is easier to feel sympathy for myself for being upset by it, even if the connection to the fear is irrational. Complaints and “complainers” often give away more than intended. Listen hard enough and you might hear the child-level reaction the person is hiding through their blustering.

I think there is a lot to unpack on this topic and I will need to take more time with it to get there. If you’ve felt grumpy and then subsequently guilty for feeling grumpy, know that you aren’t alone and that it doesn’t mean you don’t care about others who are suffering. Unchecked rage at a small slight is one thing, complicated agony at life’s grind is another. In the grand scheme of things, my life is alright today. On a truth level, I’ve had a shit day that’s stirred up a lot of anxiety and feelings of inadequacy, and it’s okay to acknowledge that too.

Accepting My Fate with Dignity

This week I’ve been contemplating the scope of the crisis people across the world and in my neighborhood are enduring, and I keep returning to one idea: the extent of the devastation that has, is and is likely to befall us, at least here in America, is too much to for my brain to digest. I don’t think that this means current events are inherently profoundly traumatizing to everyone who is experiencing them, but rather that the potential shifts and cracks that are forming are too wide and too deep to fully comprehend. Our society may be remade, for better or for worse, and I feel so small in bearing witness to it.

I’m putting some of my energy into staying present and into the practicalities of my own life and I’m also making space to listen to those who are most directly being impacted. These would include those in nursing homes, disabled people and PoC who are being disproportionately affected. I feel intense rage when I hear the “Karens” of the world b*tching about not being able to get their hair cut; being inconvenienced and being oppressed are fundamentally different experiences and I cannot with people who reject any suggestions that humble introspection and community effort might be necessary.

The future feels both bleak and uncertain. This is nothing new to me, but, in this instance, it is a collective outlook rather than an individual one. I’m returning every time my mind reaches a peak of anxiety to the idea that, when I reach the end of myself, acceptance is the only path left to trod. I will not deny my own reality and I will not fight a losing battle. I desire an embracing of grief that I do not know if I have in me, but the idea of remaining proud, dignified and whole no matter what I face or what I lose appeals to the core of who I am. This isn’t an avoidance of emotion but rather a “being with” myself in compassion at any cost.

I always thought autonomy was the most important and highest value I held, but I sense this is part of the shifting that is happening. Some of the events of our lives, our fate if you will, are outside of the scope of what we can predict, make sense of or affect. I do not yet know how to surrender control in situations in which I feel threatened by doing so, but I know acceptance of my fate, whatever it may be, is the most important commodity I can cultivate for these circumstances.

A Ride Down (In the Cards)

I’m feeling quite down today and decided to draw some cards to see what Spirit had to say to me. The messages I received included that this is a time of darkness, which fits both the world at large and the fact that today is a New Moon and that opening to inner power will bring new understanding to my life. I don’t feel powerful because so much of the autonomy I’ve had has been reduced by the pandemic. I (as well as most people in the world today) have to think about safety and protection from harm every time I venture outside my house. I feel helpless in terms of securing my future financially and guilty every time I give into a “want.”

I can’t shake my dream I had last night. I am forever riding elevators in my dreams. Typically, they spin around and get stuck between floors and I can’t exit. In this latest dream, I started out several floors up in an opulent hotel. Eventually, I was able to exit what had turned into a service elevator to a gruesome sight of people dying and suffering. I interpreted this as bearing witness to both the external horror in which we are living as well as my own half-buried fears of a protracted death.

Perhaps that is what I’m holding onto–is it possible to surrender to the forces of nature and retain one’s power? Does physical suffering–walking in the shadows–hide from us the beauty of who we are or can we still see clearly? Is decay only misery and always misery? When it is unjust, meaning preventable, it is hard for me to see it as anything else, but what happens when it is inevitable? These are philosophical queries I would never want to ask anyone other than myself to contemplate, especially in the face of real loss and tragedy. Where meaning-making fails, there is human kindness and solidarity and that is abundance itself. What I will say is that I can see now that I’ve fully conflated autonomy and power as one and the same and I think now that they are both more vast and filled with uneven terrain than I thought possible.

A Future-Oriented Identity

I’m a proactive person. That sentence right there has taken me about four decades to write and it is shattering the negative messages I’ve absorbed from others thus far in my life. Anxious, over-reactive and impatient are words I’ve used for myself after hearing them again and again in response to my proactive behaviors. I anticipate and respond and that’s a good thing! Now that I know who I am, I can make better choices in how I frame my own situation and how I interact with others.

A simple decision I made in the spur of the moment last year to not be proactive has now resulted in me finding myself facing a highly stressful situation this summer. I’m struggling to cope because my behavior was out of character for me; I hesitated where I would normally act and took the (at the time) easy way out. I’m offering myself grace in that there is no way to possibly anticipate every crisis that will come, but, wow, the feeling of relief I feel on a regular basis because I typically deal with the tough stuff first and avoid these types of outcomes is something I am deeply craving. I want to become someone who is capable of grace towards others in these moments; so often, my mind goes to “this could have been avoided if you’d only…”

What I’m visualizing in my mind is a bell-shaped curve of proactivity to procrastination, which the majority of people falling squarely between those two extremes–they act “just in time,” making deadlines but cutting it much closer than what is allowed for by my comfort level. I experience the most extreme stress when I find myself facing an unanticipated situation with time pressure. If I have time and warning, I’m much calmer, so I do everything humanly imaginable to hone those two resources.

Where I’ve made mistake after mistake is trying to move others onto my timeline, when they want to work at a much slower pace and tend to interpret my warnings as nagging or fear-mongering. I know now how to talk to someone when I see them headed 90 miles an hour towards a brick wall “I’m a really proactive person, so things tend to pop up on my radar before they would bother someone else, but, I see an potential issue here and can offer my thoughts if you are interested.” An invitation to consider rather than an a “WTF is wrong with you” when they don’t jump when I say danger is coming.

I’m a highly anxious and impatient person, but those characteristics are only born out when I’m missing the timely warning and feel trapped in needing to make a quick response. I was utterly confused as to my lack of panic when the pandemic was announced, but I had been paying attention and making arrangements for months beforehand, so my anxiety and impatience were not highly triggered. Owning my identity as a prepper and a proactive person helps me feel proud of who I am, rather than ashamed of it. It makes me incredibly curious as to the characteristics myself and others possess that may be equally misunderstood and mislabeled. Are there any you can identify in yourself?

Processing Over Plodding

I’m in a foul mood today after a sleepless night battling abdominal discomfort alongside crashes of lightening from periodic thunderstorms. I awoke to find water damage in my bathroom, the source of which I have not yet pinpointed, and found myself saying “no” to an obligation I later realized I could have met. I’m spiraling into feelings of unworthiness, hopelessness and guilt.

And, yet, I’m slowing down in this space instead of numbing myself through mindless entertainment or food. I’m making room for the small parts of self that are tired, frightened and utterly overwhelmed by what feels like crisis after crisis. I’m reminding myself of the positive steps I’ve taken and what I have accomplished today.

And, when I make space for myself, I find my fears are more vast and deeper than I first realized. My guilt at declining an invitation swirls until I am homeless because I cannot provide for myself–one wrong step and I lose everything. My sense of worthlessness holds my inability to tame my temper when I feel unwell–I become a monster when my body hurts. My hopelessness devolves into–there is nothing I can do; everything is always a mess and goes poorly for me. To sum it up, I’m a monstrous, incompetent fool who screws everything up.

I am none of those things and I do not know where to find the parts of myself that feel that I am that. What stood out to me immediately upon writing the last paragraph’s final sentence is the raging hatred I have towards anyone who emulates those qualities even slightly. I want them gone from my life, never to return. I hate incompetence, cruelty and needless failure. Yet, what grace do I offer myself when I start to embody an iota of any of those attributes? What grace do I offer others who might do the same?

This welcoming of the unpleasantness, this turning towards it rather than away from it, allows me to feel larger and more spacious than I did before. I am grumpy because I am sleep-deprived. I needed to rest and could not show up for my obligation in a way that would allow me to contribute in a positive manner. I have handled the situations the day has given me as best I could, and, in allowing myself time to process instead of plodding along, I will handle a similar day even more successfully. When is the last time you checked in with how you were feeling on an off day? What is your inner dialogue and commentary like? What peace do you make with the parts of self that are hard to welcome?

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?

Witnessing the Cold Waters of Grief and Loss (Today's Daily Remembrance)

I don’t “suffer” from the optimism bias that most non-depressed people enjoy. This means I don’t tend to look the bright side or attend to the positives in tragedy. I spend a good deal of time on this blog making space for my efforts to find that for which I’m grateful; for me, it has to be an intentional and deliberate process or it won’t happen. I firmly believe, though, that finding reasons for joy and laughter need to exist alongside, not in replacement, of the ability to feel sadness as it happens.

My grief at this moment is a witnessed grief more than a personal one; I am not in mourning for the ways in which I’ve been personally impacted by the pandemic, but more for the global losses that have happened and the havoc it is beginning to cause in the lives of people for whom I care. What I lack in “be hopeful” I replace with “be prepared;” I tend to lean too heavily into the idea that, as long as all contingencies are measured and mitigated, true tragedy can be averted.

I’m living in a moment, however, where this can-do attitude is failing as my national leaders prioritize the wealthiest among us over the rest. Horrible, unfathomable and potentially preventable things are starting to happen to good people on a scale I didn’t know could occur, coupled with with no one in leadership providing comfort and guidance. This is both the oldest story of my life and also the one that feels freshly terrifying; I knew this could happen to me (childhood trauma), but I didn’t know it could happen to everyone (save the moneyed).

All I know to do when loss occurs is to make space for it, to honor what is being missed and to mourn with those from whom treasures of love are being pilfered. Grief, in my mind’s eye, is a well of cold water, into which that which we deem precious can sink but from which no reflection gleams. I know that, in due time, some will find renewal there as they reconstruct their lives. Maybe bearing witness to grief is nothing more than keeping a fire going by the depths, allowing for the awareness that rage and fear and all the strong feelings that make us want to flee that place of loss are allowed here and matter here. What are you grieving today? What is fanning the flames of your emotions? What is slipping into the bleakness?