permanently disabled

i haven’t been sleeping well of late. it’s an occupational hazard when you have depression; insomnia likes to pop in for a visit from time to time. i head to bed early enough but stay awake ‘til after midnight and sleep fitfully, waking for the final time between four and five in the morning. those are ugly hours; almost nothing good happens then.

as it turns out, however, my insomnia was good for something this week. i had to speak to my long-term disability case worker. her time zone is three hours earlier than mine and since she starts her day at seven, the four o’clock waking this past friday, while gross, was at least convenient.

i owed her a follow up; she’s been collecting reports from my counsellor and psychiatrist to update the evaluation of my claim. it’s stressful living on disability. i’d get approved for three months at a time, and then the whole process would start again. the instability has been hideously anxiety-provoking. the insurance company overall has been very good to me, nevertheless, seeing her name on the call display would engender panic – would this be the week i was told my benefits would be ending, that i would have to find a full-time job again, irrespective of the fact that some days i still struggle to get anything done, that most days i still nap for several hours, and that being in the world is still difficult, so much so that ideation is still a drain?

this conversation, however, was different. they have approved me for coverage until the age of sixty-five, almost twenty years. i will get a new caseworker and they will touch base every so often, but the spectre of summary cancellation has been lifted. you’d think that’d i’d feel nothing but gratitude and relief, but this is not proving to be the case.

don’t get me wrong, i’m beyond grateful and beyond relieved but there is something about hearing from others that it’s unlikely you’ll be whole enough to pursue full-time employment anywhere in the immediate future that is something of a blow.

it’s not like this is information i don’t know. i didn’t know their decision but the wednesday prior to the call i’d had a meeting with my psychiatrist and i asked about the report he’d submitted. it took a great deal of effort to ask, actually. even when it’s about my own health and own life, i hate to ask questions. i hate to be seen as a bother or imposition, and i always feel like i’m being both if make any kind of request.

regardless, i asked. there were a lot of words in his report, but the upshot is that i’m still not that stable. i still struggle with the idea that living is a requirement. i still flail about in the pits of anxiety most of the time. i still dissociate. my doctor suggested that it would likely be years before i would be ready to work full-time. this was not something i didn’t know; i live with myself after all. yet, there remains deep inside a part that hopes no one else has noticed my issues. that hopes my struggles remain hidden from all, especially from my doctors and therapist, who despite being the people i share a lot of my darkness with, i still expect to see me as either absolutely fine, or an utter failure and malingerer.

with all that, i could have been prepared for my case worker’s conclusion. i was not. the decision, once she told me, did make me feel grateful, for a second or so, until it hit me a bit like a body blow. i am not capable of running a “normal” life, whatever that looks like.

part of my distress is because of the shoulds. not the daily ones, the ones i try to replace with “could” or “might” to avoid the guilt and self-condemnation that comes when i set myself impossible and inflexible targets, but the big ones, the ones i’ve never really addressed, the ones that set up the requirements of what i life is supposed to look like over time and at certain markers.

i’m in my late forties and there are a whole host of beliefs i have about what that is supposed to look like. i have no idea if these are universals or something i’ve dreamed up, but they go something like this.

you should have a life partner. i really can’t seem to work this one. i can barely hold onto me. i don’t want to lose myself in someone else at this point in my life (though someone to occasionally play scrabble with would be nice), but i feel defensive about being alone, wrong somehow.

you should have a house. i live in a very nice middle-class suburban home. i’m very lucky and very grateful that i’m able to do so; it’s only possible because my parents own it and accept a pittance as rent. if i had to live on my disability income and pay market-rate rent, i’d be poverty-stricken. i do feel blessed but i also feel like a failure. i can’t manage to acquire my own home or even support myself well. i’m still, to a degree, dependent and at this point that seems unlikely to change. i struggle with the sense that i’m a disappointment to my parents, that i’ve failed to live up to any promise.

you should have a career. i don’t have one of those, never have. i’ve held a lot of jobs but because i make them my all and everything, because i invest all my time and energy into them in order to be perfect, and in order for them to complete me and make me okay (which hasn’t happened yet), i tend to burn out after a couple or three years. i get ill, leave the job to recover, and start again. the upshot of this is two-fold: i have no professional place, no long-term co-workers, and no tenure, and i have a spotty professional record which, at my age, makes future employment much more challenging.

you should have a retirement plan or at least a savings account. i’m lucky here. i do have a small amount set aside in RRSPs. it’s enough to live on for about five months and nowhere near enough to draw an income from. as for savings, i’ve been on disability for quite some time. i try to build up the pot but most of the time it sits stubbornly in the low threes (and that’s only because i carry a balance on my credit card. realistically i should raid the savings to pay it down but having something set aside makes me feel a little less pathetic).

so, the feeling of having received a body blow on learning i’d been approved for disability until my useful working life is over is a bit more understandable. yes, some of the stress and uncertainty has been lifted, but i now have to address and rework what i have defined as being an acceptable life and appropriate achievements for someone of my age.

things are what they are and a surefire way to increase my misery is to pretend they aren’t or to criticize myself because i don’t fall into line with these arbitrary requirements i’ve placed on myself. as with so many things, it comes back to this. it’s okay to be kind to myself. it’s okay to grieve the changes. and it’s okay to get on with accepting reality.

4 thoughts on “permanently disabled

  1. Although I understand your shock, I am pleased they have approved you for so long. It’s a pressure that’s lifted. Most of our expectations are born from the capitalist culture, the American dream and the Protestant work ethic, and are not a reflection of our needs.

    I hope that you can process the information and be ok with being you.

    Liked by 1 person

    1. This was the private company component of my disability. The government pension portion was approved and that was it, but the private company long-term plan checked in with me and my doctors quite consistently. In Canada, by the way.

      Liked by 1 person

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