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Metal Angel

~ I remain, though dreams are shattered, forever awaiting the return of light…

Metal Angel

Tag Archives: disability

I never met one of my best friends

06 Wednesday Jan 2016

Posted by Aurora in Heavy Metal, In Hindsight, Metal, Music

≈ 3 Comments

Tags

depression, disability, Friendship, grief, Heavy Metal, loneliness, loss, Metal, Music

It all started with a wrong number…

It’s odd how I remember that, even after all this time. I’d missdialed one digit off my own home phone number trying to call home on an old rotary phone. Instead of hanging up on me, John, the guy on the other end of the line for some strange reason, asked my name and just kept talking to me as if I’d made his day just by calling at all. This was in the days before caller ID, and long before home internet was common, at least in the neck of the woods I was from. Unless I told him my last name, he had little chance of figuring out who I was. It was a lot more innocent a world than it is today. By the end of the phone call he made me promise to call back sometime and talk to him again. He also insisted that I was such a nice girl that he had to ask me to call his friend Billy. Once he told me a little about him, I couldn’t not call, at least to say hi like I’d promised John I would do.

I had no idea when I made that phone call that night, how much my world would be changed, by someone whose face I would never see. That first night when I called him I barely knew what to say, other than I knew John so and so, and he thought we should meet. One phone call turned into talking almost daily, about everything under the sun, and nothing. We loved the same kind of music, and a lot of the same shows. He was always happy to talk to me, he listened to me when I didn’t have a lot of of friends to turn to. It was only slowly over time that I became aware of why, the only time Billy backed away, was when I wanted to meet him in person. I didn’t know why until one night years later when he finally got the courage to explain.

Billy was born with spinabifida and other spinal birth defects that were complicated by his also having hemophilia. While in normal cases his condition would have been treatable enough with surgery to at least let him be mobile with a wheelchair, Billy could not have the surgery or he would have bled to death. He had been bedridden since early childhood due to complications of his condition. Just moving him wrong could cause internal bleeding if his family wasn’t careful. He told me the conditions that he lived with had stunted his growth and left his body deformed, even if his mind was completely unaffected. He’d spent most of his life in his bedroom, paralyzed and unable to feel anything from his chest down, with a radio, tv and a telephone as his only contact with the outside world. I was 16 or 17 when I began talking to him, and by then he was in his 30s.

Looking back I know he was afraid that if I saw him in person that I would stop being his friend, not that I could ever convince him otherwise. He used to laugh and tell me he looked like the hulk, and that he was all green and scaly. To this day I regret never going to see him, even though we lived a mere 3 miles apart in the very same town.

We stayed in touch for several years, even after I was old enough to be out on my own. His folks were both elderly by then but were still his sole caregivers. We lost touch after his father passed away from a heart attack suddenly, and Billy and his mom had to move in with his older sister in another town that was a toll call away. It almost felt as if a piece of my heart was ripped away when he went away, even if I only knew his voice on the other end of the telephone. I found out some time later that he’d passed away in his sleep only a short time after we lost touch.

I don’t know why I am thinking about him tonight after all this time, but I still miss him sometimes just as badly as I did the day he went away. There are still songs I can’t listen to without thinking of him, this one in particular. Billy always swore it was the best song ever written.

Hope you are thinking of me tonight my friend, I still miss you.

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Hope and the pessimist

18 Wednesday Sep 2013

Posted by Aurora in Complaint Department, Daily Drivel, Evil Wizard, Rants

≈ 1 Comment

Tags

anxiety, depression, disability, disabled, family, home, housing, marriage, mental health, poverty, rants, stress

I know I’ve talked a lot here the last couple of years about our housing situation, and why it is driving me crazy. We’ve been stuck here in this apartment for the last two years now, living with my husband’s ex-girlfriend for a roommate no less. Our apartment search this entire time has been one huge disappointment after another. We are being priced right out of even thinking of getting our own apartment, even in a not so great neighborhood.

There isn’t as much of a safety net for the disabled as a lot of people seem to think there is in this country now. Waiting lists for public housing are over a decade long if they are open at all, and most low income housing that exists, is set aside specifically for the elderly. My husband and I will not qualify to live in one of those places for quite some time yet.

The fact remains that the so called “fair market” rate for a two bedroom apartment is over 900 a month in this area. This is more than my entire income, and not much less than what my husband and I make combined. Think about it, that’s just rent, not heating the place, or keeping the lights on. It’s amazing how some people have the impression that the disabled are living so high on the hog, when we can’t even afford even a small apartment of our own to live in.

The worst part about looking for an apartment here are what places like to call “application fees.” Most housing in this area is owned by out of town investment companies, who hire locals to “manage” the properties for them. Most of these companies not only charge high rents, but want upwards of $150 dollars per adult in the household just to apply to live there, this fee is non-refundable if they reject your application. They also want the last 6 months worth of pay stubs, to see your tax returns for the last 3 years, a credit check and a federal background check just to be considered. Even if we don’t have to worry about our credit or income…who can really afford all those fees?

My husband thinks the reason he’s seen so many apartments listed for so long, is because these landlords are making more money not renting the place, and just rejecting people’s applications than they would actually renting the apartment. I mean think about it, if you get 10 applicants a week at $150 a pop,for an apartment that rents for 800, you’ve come out further ahead to let the place sit empty don’t you think?

Someone recently told us getting a mortgage right now is actually easier than getting an apartment because of that, so we have decided to try it. A mortgage does seem to be very much cheaper than rents here, our monthly payments would be only about a third of what it would cost to rent a comparable house in the same kind of neighborhood. The question is, can two disabled people even get a mortgage? Are they going to look at our meager income and not even give us the time of day?

All I know is I really don’t want to spend another year here, walking on eggshells in my own home, dealing with someone who’s not only his ex, but someone who’s mere outlook on everything from politics to family values, happens to be nearly polar opposite to my own. I don’t want to deal with someone who refuses to budge an inch on letting us have the third bedroom, when we pay 2/3 of everything here. My son having his own room will soon be more important than her having her “office” and a place to store all that extra junk she can’t squeeze into her already packed tight bedroom. I can’t stand the fact that she thinks it’s okay to smoke in here, when there’s a baby in the house, and she thinks it’s good enough that she just shuts her bedroom door. The smoke still travels, I can still smell it. We have an outside balcony for that, for pete’s sake, it won’t kill her to use it.

I want to be hopeful here, but it’s hard. Life right now just seems like a lot of jumping through one hoop after another, just to get further behind than when we began. When being here is so hard that I wan’t to pack my son up sometimes and move back where I came from, where things are awful but at least affordable, there is a problem.

All I know is that at least if nothing else, but for my peace of mind, by the end of the year, I want to be far away from here. I don’t care if we are in our own home having bought a place, or we have picked up and moved somewhere entirely new. I can’t take another year of the same old situation, and the same old worries. Something has to change for anything to get better, it has to.

Wound Tight…

14 Saturday Sep 2013

Posted by Aurora in Complaint Department, Evil Wizard, Rants

≈ 1 Comment

Tags

anxiety, deaf, depression, disability, family, marriage, worry

I’m very on edge lately, and especially since yesterday again. I wish PMS were all I had to blame it on. I’m irritable, grumpier than usual, and to top it off I’m still not sleeping well at night. I don’t want to feel this way, but it seems like every time I start to relax a little, something else happens that puts me back on my guard again.

Yesterday, it was finding out that even after having over a month to do so, social security still hasn’t processed a simple change with mine and my husband’s account. Long story short, if they don’t do so in the next couple of weeks, I won’t be getting my check in time to pay our rent. We spent all morning down at the local office wading our way through an almost two hour wait in line, just to be told to be patient and that they would get around to it, they swear in time to make sure the problem gets fixed and my check will arrive on time. I wish I could take them at their word, but if they couldn’t do it in the last 4 or 5 weeks, why should I believe they will bother to get it done in time now?

When it rains it pours lately…

I really wish things would be good for a change here. I’m tired of always being on my guard, waiting for the next thing to go wrong, and then struggling to fix it. It’s so hard to plan for our future or anything else, when I can’t even get simple answers, even after what’s now been months and months of waiting. Why does it take them over a month to finish a simple change on our account that they could probably do with a few keystrokes? Why does it take them until October for my husband’s checks to even start, when he was approved months and months ago? Meanwhile the money for him we haven’t even gotten yet, is already being counted against us on other benefits. Sometimes it makes me want to throw up my hands and give up, but I can’t. I have a family to take care of, one way or another.

I’m not easy to live with when I’m moody like this, but sometimes I don’t know whether I want to get angry, or find a quiet place to sit and cry for awhile. My initial reaction to the news was to panic, and once scared passed, I think I cried for about 10 minutes straight. Par for the course, worrying about this morning, I also didn’t sleep all that well, but I still got up and went downtown to do what we needed to.

I know I do a lot of complaining here, but all of this has to go somewhere, and I can’t bottle it up or take it out more on my husband than I probably already am without meaning to. It’s frustrating trying to have a conversation on a good day when it’s noisy and his hearing isn’t working well, and the baby is being noisy, it’s doubly so when I’m so stressed that I don’t have the patience God gave a box of animal crackers, and repeating myself isn’t working over all the racket. It’s not his fault, I know that. When I have something I think is important to say, and I’m not being heard, it’s hard to fight the urge to yell sometimes to make sure that he hears what I’m saying.

Sometimes I worry about his hearing, and what would happen in an emergency if he couldn’t understand me, it can make me a little overly protective. I’m the one that has to keep her ears peeled for the baby when we are sleeping, and for anything that goes bump in the night around here, not to mention that it’s safe to assume John would likely sleep right through a smoke alarm without me. Him getting a new hearing aid he could actually sleep with would be a great load off my mind, if such a thing actually exists. (we are presently just hoping to be able to get him a new hearing aid soon at all)

Here it is after 3am, and I am still awake again..

I know I should try to sleep now…

Wish me luck…

Lost for optimism

05 Monday Aug 2013

Posted by Aurora in Complaint Department, Evil Wizard, Rants, Taterbug

≈ 4 Comments

Tags

anxiety, depression, disability, disabled, family, kids, marriage, parenting, poverty, social security, worry

Does the universe give you more than you can handle?

I’ve been so scared and stressed out lately I’m not really sure where to turn. I know to really understand why, you all will need a bit of backstory, on me, and my family, or at least those who haven’t been following my blog for quite some time now will.

I have been disabled almost 15 years now. I also suffer from social anxiety disorder and PTSD. Trying to keep myself calm and optimistic isn’t easy even on a good day, but when I’m stressed out like this it’s nearly impossible. Thankfully I have a hubby who is wonderfully understanding when I’m having one of my bad days.

As some of you know my husband is severely hearing impaired, and has been since childhood. He first lost use of one ear, when he was only 12 or 13, but since his late 20s, he has also slowly been losing the use of the second ear also. Now he can only hear a little, and only with the help of a hearing aid, which we presently can’t afford, because the medical insurance we have will not pay for it.

After two years of trying, and waiting a year and a half for an appeal hearing with a disability judge, he was finally approved for SSDI. I wish this were the cause for joy it seemed to be at first, but unfortunately it may actually leave us further behind financially than what we already are.

See…there is thing thing they don’t like to tell people about called the “Marriage Penalty.”

Since he and I chose to get married last August, before our son was born, instead of just continuing to live together, there will be some penalties to our income, separately and collectively.

First of all…

Even though his new income will be lower than the income I was receiving, I will still lose 80% of my disability check, because his income counts against mine dollar for dollar. On top of that insult, we now have to pay $150 a month out of his for medicare as well, which leaves us even further behind than we were before. They also are telling me our benefits will not be high enough for our son to qualify for any dependent benefits of his own. And if that were not enough, we also discovered that any financial help relatives have given us over the last couple of years, to keep us from losing our home, also counts against us as income, which erases most of the back pay we would have received had they not helped us.

Please tell me…how are people supposed to survive all of this?

Basically what all of this means, is unless our circumstances change, my family and I will forever be doomed to a state of complete poverty. I honestly am not sure how to handle all of this, or what to do since I found out all of this. Since the meeting at social security on Friday, it’s all I can do not to cry. It’s hard to sleep because I can’t stop worrying about just what is going to happen to us.

Rent for even a modest one bedroom apartment in a bad part of town is even more than our entire income now. Will we always have to live with roommates? Are we going to be able to give our son all the things he needs now? I’m worrying myself sick here trying to think of what I can do to make it better. We can’t even apply for welfare, because it counts dollar for dollar against what we are already getting.

How is this a hand up? I don’t understand it…

Would it make sense to look into going back to school, when even people with degrees are working at retail jobs? How would it make sense to take out loans for classes I may not be able to get a job good enough to be able to repay? Some people would tell us to just start selling everything, but really we don’t own much. We have a lot of books, and furniture that came from yard sales. I really don’t think we have much anyone would really be interested in buying.

Why am I venting here? Probably because I don’t have anywhere else to vent to.

Every time I read articles about the poor and the disabled, people in the comments section write such cruel things. We are not lazy, we are not faking, we surely aren’t eating gourmet meals, and driving fancy cars. We don’t own a car at all. We don’t use drugs, we don’t drink, we don’t smoke, and we surely don’t waste our money at a casino or strip club. I hate being stereotyped, judged, and made a joke of.

Is it wrong of me to just want to be able to afford a home of my own, and not have to have my husband, son and I sleeping in one room of an over-crowded apartment? Is it wrong of me to want to be able to provide my son what he needs, even if I won’t be able to give him everything he wants? Is it wrong to wish I didn’t have to worry about the future, and what would happen to us if the rent goes up again, or an emergency came up that we have no way of paying for?

Optimism eludes me right now…

Worry just keeps my brain going in the same circles…

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