Poetry: Unspeakable Childhood

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‘Twas horrible to think
that she suffered
an unspeakable childhood.

Every day they reopened
the contentions –
old ones
that she could not
tear away.

Mischief and dread
became more likely
than right and wrong –
causing heads to hit
hard against circumstances
almost as good
as she once was.

(Blackout poetry created from a page of “Great Expectations” by Charles Dickens)

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Afraid of Living

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I am not afraid to die –
but I am not yet
unafraid of living.

I’m not sure I have ever written truer words than the 3-line poem above. This little gem came to me while taking a bath last night, so I repeated it to myself like a mantra until I got out of the tub and could write it down.

It is true that I am not afraid of death. I am a bit afraid of the actual feeling of dying, mostly because of the instinctual anxiety I fear it would bring. However, I am not afraid of being dead. In fact, I rather look forward to it. If there is something after death, it will be awesome to explore and find out what else is out there. If there is nothing after death, it will just be like the times I have passed out or been put out for surgery…simply a loss of consciousness which often sounds like a relief in itself. No more worrying. No more pain. No more anxiety or depression.

However, living is scary. Knowing I may have years and years of dealing with anxiety and depression ahead of me. Knowing that I will likely suffer from chronic pain and chronic illness until I die. Knowing that my degenerative conditions will likely worsen with time. Fearing that my husband may get sick or die and I will be alone. Fearing financial ruin. Fearing homelessness. Fearing potentially abusive situations. Fearing the entire planet going to shit (a justifiable fear from my point of view). Fearing that I may end up committing suicide if life becomes unbearable (not the ending I would desire for my life).

SSDI Hearing Update

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Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.

Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).

I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.

Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).

I Hate Disappointing People

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You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.

Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.

This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.

I kind of wish I had mentioned some of those things now. Maybe next time.

Even My Dream Self is Depressed

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I’m still struggling quite a bit. Feeling lethargic, numb, and exhausted all the time. Still not wanting to get out of bed, even though I’m not finding much refuge in sleep either, since my dreams the last couple nights have been overrun by nightmares. Quite an assortment of bad dreams too: A dream about my husband not loving me anymore, a dream about giant ants, a dream about trying to get kicked out of high school. Even in my dreams I’m miserable. During the high school dream the reason I wanted to get kicked out was because I was so depressed I just couldn’t function and wanted to go home and crash.

I’m hoping this depressive episode passes soon. I’m not sure if it is maybe exacerbated by seasonal affective disorder since I haven’t seen the sun in a while, or if this is just a shitty coincidence, but I wish I felt better.