Posts Tagged ‘disability and poverty’

In disability and poverty

by Dan Smith, Wikimedia Commons, CC Attribution-Share Alike 2.5 Generic

“I can’t hear myself think,” my mother would say.  “Ya’ll hush up,” or sometimes, “Turn that noise down.”   Whatever, “noise,” it was, we turned it down.  Sometimes it was my sisters and I cutting up or maybe it was music, but when my mother spoke, we listened.

My mother pointed her finger at us when she was mad, which usually put a stop to any misbehaving on our part.   Testing her was not wise, but I guess like all children do, sometimes we abandoned our fear.

She only had to remind us one time to look on top of the refrigerator, at least in the Summer, where we could often see a switch lying on the top.  If there wasn’t one there, then one of us had to go out and pick one.  We had to pick three to make sure we got a good one large enough for switching.

“Don’t come back with a skinny one or I’ll…”  I don’t remember anymore what Mother said she would do.  I think she always said she’d switch us twice.   She grew switch bushes, which I would finally learn are Forsythia, also called Yellow Bells.

Switching us wasn’t the only reason Mother had for growing switch bushes.  It gave her a desperately needed bit of privacy from my father’s mother’s hawk-like watch from her front porch.  Mixed in with the Forsythia were Redbud trees, which eventually did protect my mother from my grandma’s invasive view.

I only got switched once and I didn’t deserve it but then, neither did my sisters.   None of us owned up to the misdeed, since we really were innocent, so one by one, we each went into the bedroom and got the switch.  I was five.  I was not as willing as my older sisters were.  I was much more rebellious.  I made my mother chase me around the house outside about ten times before I finally had to give in and go inside.  She couldn’t catch me so she told me the longer I stayed in the hiding place I’d found, the worse it would be for me.

There was a time later when my mother thought I deserved a spanking but it wasn’t switch season.  She asked my dad to use his belt.  He took me into the back bedroom at which point tears began streaming down his eyes.

“I can’t do it,” and he called me by his nickname for me.  “You are too sweet,” little dogkisses.  You don’t deserve this.  Can you just cry and tell your mother that I spanked you with the belt?  Tell her I gave you two licks.”  I shook my head yes, which is exactly what I did.  He had added, “Just don’t do it again okay,” and I didn’t, whatever it was.  I don’t remember.

Our family was somewhat dysfunctional.

I’m sure there are people who could find ways to say the dilemma I’m in now might stem some from the switch bushes my mother grew.  I dare say though that there were much worse things we had to deal with than switches, which I’m sure gave birth to my having a few emotional challenges in life.  With that said, I try hard not to blame my parents for my life today.  It’s a personal choice I made in my late thirties.

My dad passed on when I was only twenty-five years old and my mother is seventy-five.  My heart tells me to do the best I can with the years left that I have a mother, so that’s what I’m doing.

Perhaps I’ll come back to this writing one day and see how the switch bushes or my recalling this part of my childhood relates to me not knowing what to do about my current problems in life, but as I write, I don’t see a clear connection.   I don’t know why these memories return to my mind on this day when I can hear myself think.

I know how it feels to need to hear myself think, or rather want to hear it.   I don’t know if it does me that much good to hear my thoughts too much of the time.

One thing I hear clearly and often is the thought, I don’t know what to do. Not only do I hear myself thinking it, I hear myself saying it out loud.

Talking to myself, out loud, scared me until one day I heard an NPR show on self-talk.  Apparently, this is quite common and is I guess, one of many normal responses to intense and ongoing stress.  Sigh!  What a relief I thought.  I love it when I hear that my craziness is normal and common.  I remind myself of this if I start talking when I’m home alone.  Plus, every time it happens, I am under a lot of stress.

Some days, like today, I hear the thought until the day is finally over.  Some of those days I get a few things done and some of those days, I don’t get anything done because, I don’t know what to do, or rather, I think that I don’t.

Today I had the thought (and spoke it out loud — to myself) with my first cup of coffee.  Then immediately, I thought well, why the hell don’t I know what to do?  I’m closer to fifty than forty.  When will I know what to do!  Or do I know and am just not doing it?  Like writing in this blog.  Is writing what I’m supposed to do I wonder or am I avoiding doing by writing?

I want to write but I need to do a million other things, like call the hand surgeon.  I keep putting that off.

There are lots of things I could do and some, like calling the surgeon, is something I’ll eventually have to do.

I could write a letter about how my son should have graduated from Community Resource Court.  I’ve put that off a long time.  He didn’t graduate because his psychiatrist wrote the judge a note saying he had not taken the antipsychotic she had prescribed for him.  He had taken it but his family physician told him twice during that time to stop taking it and to never take any kind of antipsychotic again due to poor liver panels while my son was taking the medication(s).

He attended the court for one year and did everything they asked of him, except for one thing, which was to continue taking the antipsychotic.   The psychiatrist who had written the note was gone fishing the day he should have graduated.  It isn’t the first time she’s been fishing during an emergency and the ACT team she works with doesn’t have a back up psychiatrist when she goes on these trips where her cell phone doesn’t work. She had told me to fire that doctor anyway.  They sent my son back to criminal court.  I couldn’t believe it.  I think it’s an injustice and I doubt my writing a letter would do much good.

The judge asked me to stand up.  My son had been charged with possession of,  “half of a marijuana cigarette,” and as a result,  landed in the county jail for 28 days!  He had attended CRC for one year, and so did I.   None of that mattered though.

“Do you think your son is competent to understand this charge?”  the judge asked.

I can’t speak fully to what my son thinks about his charge.  I would be betraying his privacy.

What if I had said no?  That would have meant a judge’s order for a psychiatric evaluation, which would have meant an involuntary commitment at our state hospital, which is unstable and as a result, dangerous.  My saying no could have caused him to lose his rights, get locked up in that place until some really crazy doctor decided my son was rehabilitated.

“Yes,” I answered.  “My son is competent.”

His gavel came down and the day was done.  My son was charged and free to leave, which we did.

I could write about the injustice of…

Sigh…  There are about ten letters I feel like I need to write about injustices regarding my son.

Then of course there is me and my life.

I could write a letter to the teaching hospital where I receive most of my health care.  I could ask them if they would offer their, ‘charity care funds,’ which I qualify for, to pay their acupuncturist.  Four of their specialists have written me prescriptions for acupuncture, due to my sensitivity and adverse reactions to certain medications, along with a family history limiting my choices in the treatment for some serious health issues I have.

I could write a letter to my family doctor asking for Home Health services or be brave enough to finally ask for a handicap sticker for the days when I’m too tired to walk.  There are many days when I’m too tired to actually walk into the grocery store, much less walk around and shop.  I’ve gone to bed hungry a few times because of this, but not for too long.  I manage to keep up, obviously as I’m alive and writing, but sometimes, I’m hanging on by a thread.

“It makes sense,” my doctor said, after I asked him if people with fibromyalgia and/or Chronic Fatigue Syndrome qualified for any home health services.  He said he has never known anyone with these illnesses to ask for these services.  I wasn’t surprised but I’m quite curious.  Chronic Fatigue Syndrome kicks my ass.  It puts me down like a sick dog!   Why haven’t these intelligent well-respected medical doctors considered the notion that CFS and severe fibromyalgia patients might need some home health care services?  I wonder too why we, the patients, haven’t inquired about these services.  Are we ashamed to ask?  I’m ashamed to ask for a handicap sticker, even though I know I deserve to have one as much as anyone else does.

I have dogs and I feel like people will say if I can manage to take care of them then I must be able to do everything else, but this is not the way it is.

I’ve been blessed the past several months with neighbors who are helping me walk my dogs regularly.  After two accidents I don’t know what I would have done without their help.  I can take the younger dog to a nearby dogpark and sit on the bench while she exercises, but sometimes I’m too tired to drive there.  Our older dog is anti-social.  Can’t take him to dogparks!

In between my trying to figure out what to do today, I went online and visited a site about invisible disabilities.  It was wonderfully resourceful focusing on educating and informing people about how they can better understand and support a friend, family member or loved one who lives with an invisible disability.

I could send my family one of their brochures I thought, but then I thought better of it.  Here sis or bro, here is a way you can be more kind to me.   I don’t think so.

I could go through all the bills.  Bills I can’t pay.  Put them in a shoebox labeled unpaid and can’t pay, then store it in the closet.

I could call our MD and tell him my son is not doing so great, but what could he do?  I could call the housing specialist.  I could call the corporation who just bought all the properties around here that used to be owned by non-profits who rented to low-income people with disabilities.  I could tell them I’m still waiting  on getting all the paper work they’ve asked for.

I could call the federal weatherization program who would insulate my apartment, which would lower my power bills.  I could call the Catholic Social Services and ask if they might offer a little towards some of my utility bills — if I could find their phone number.  I could look it up in the phone book, if my brain worked right.

I could call my landlords and ask them to do some things they’ve promised to do but haven’t done.

I could call and cancel the doctor’s appointment I have at the ENT clinic.  I mean why am I trying to get help with my ears, while my disfigured finger hurts, I need new eye glasses and what feels like a million other things that I need to do?

Then, I recall the reason I called the ENT clinic.  Some days I can’t hear myself think because all I hear is ringing in my ears.  Aside from the ringing I can feel noise.  I’m hyper-sensitive to sound and sometimes it hurts.

Oh!  I know what I could do!  I could pay my auto taxes, get the receipt, oh wait!  I’ve got to have my car inspected before I can get my tags renewed.  Great ’cause the check engine light is on again.  It’s been on since my brother-in-law sold me the car four years ago.  I’ve spent hundreds of dollars every year getting it to pass inspection, and the engine light just comes back on.

I could call him and tell him to fix my car!  “It won’t be a problem,” he’d said.

There’s the power, the lights, the phones, this internet connection, two loan payments, a water bill, taxes, inspection, tags, gasoline and blah, blah, blah.  Oh yeah, food.  I forgot about that.

I bought food the other day.  I felt guilty for buying food!  How will I pay the bills I thought?

I did get one bill paid today.  I didn’t cancel the doctor’s appointment, which I don’t want and desperately wish I hadn’t made it.  I’ve canceled many of my medical appointments over the past year or more.  I managed to get my son an appointment with a private doctor who I know and trust.  This gives me a little hope, but I’m used to things blowing up in my face, most things in fact, so I don’t let my hopes get too high.  I did do things that needed doing today.  I was a mother, actively, for a little while.  I washed the dishes.  I did a lot, along with agreeing to more than I wanted, like providing transportation for a job the ACT team promised.

Mostly, what I do is try to manage the anxiety about all that I need to do, while feeling quite confident that I can’t get it all done.  I’m beginning to wonder if I’ll ever get some of these things done.  I managed to sit outside in the shade and organize two baskets of mail.   Now, the bills are neatly stacked, and I guess they’ll stay that way for a while.

Still, there’s anxiety.  There’s so much I feel like I need to do.  Some things I can’t do but I can’t not do them either.  Some things I could do if I could concentrate or feel what I have to feel to get certain things done, such as writing about the psychiatrist’s fishing trip.

I know what I’d like to do.  I’d like to go camping like we did every summer when my son was growing up — when I had lots of energy — and more money.

I’d like to sit high on the mountain, at a nice campground of course, with a really nice mattress to sleep on, which I have, and I’d like to stay there until the heat has gone from this place I call home.  I’d like to wake up to the sun shining through the trees on my tent, drink lots of dark coffee, listen to the sounds of nature, rest, read, rest more, eat, lie on my back and watch the night sky and then, rest more.

I don’t know what to do, I heard myself say right before bed.  Today, I sure could hear myself think, all day, all too clearly!


Photo by Dan Smith


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Maintaining power

quitclaim, by IconDoIt

“You can’t maintain,” the social worker said.

“I thought you helped people who couldn’t maintain,” I responded, knowing my words were futile.

I regret going to the social services yesterday.  I felt good when I woke up.  I had some energy and a smile to go with it.  I took a shower and put on something I enjoyed wearing which I think was a mistake.

I wore a pair of blue jeans.  Maybe it was because they were Capri length and not the faded and lately, baggy, jeans I usually wear.  I can’t recall which blouse I wore but I remember wearing a necklace and earrings.  I need a hair cut so I used hairspray to keep my bangs out of my eyes, which I don’t like using.  Hairspray makes my hair sticky or stiff and I’ve never liked it.

I’ve been so stressed lately that I can’t find things, like my hair clasps I would have worn instead of using spray.  Maybe my hair looked too stylish since it was all puffed up.

I wonder if I looked too nice to be a good candidate for assistance with a large power bill — assistance that she said was available and that I qualify for.

I told her I had been sick but she gave me a weird look.  The kind of look that implies she did not believe me.  I told her I have Chronic Fatigue Syndrome and Fibromyalgia but she didn’t respond.

“I’m filling in because everyone is in court,” the woman told me, which I thought was kind of odd.   Every social worker in the entire county were all at court at the same time.

“I’ll take the application and when the social worker returns I’ll give it to her,” she said.  Her next remark surprised me. “You should be aware though that if someone comes in before she gets back and ask for the same help they may get the funds instead of you.”

“But I’ve just applied,” I asked,  “what do you mean?”

“Because you’ve stated that you don’t have the funds to pay the remainder of what we can’t help you with,” she said as she kept on typing.  “If someone comes in asking and they say they can pay what we can’t pay then we will give them these funds.”

“I will pay the remainder,” I told her, “even if I have to put it on a credit card.”

The social services say that it is okay for a person who lives on a low fixed income to have a credit card.  I’ve only used mine a couple of times.  I’ve used it for a car repair, one $40.00 trip to the dentist, and once at the grocery store.  I told her I had made a $25.00 payment on it this month.

“Using your credit card to pay would only put you in the hole more,” she remarked.

Duh!

“Yes, I realize that,” I said politely.  “I’ll use my credit card to pay before I let them shut off my power service.  Wouldn’t you?” I asked her.

“Yes,” she answered.  We made eye contact.  For a moment I thought that maybe she understood the position I was in.

The department of social services also allows a cell phone and cable vision as an expense, the latter of which I’ve never had, not in my entire life.  My cell phone however has been a lifeline when my son has been in a crisis or a hospital.

Once he got lost and literally ended up in the middle of our country.  He was on that list of people who have a mental illness and are missing.  My mom came here to answer the phone if he called, while I was in the mountains with detectives searching the woods where we thought my son may have camped before getting into a van with a man who took him all the way to Illinois, a long way from North Carolina.

My son called home from a phone booth but he didn’t know where he was.  The driver of the van had abandoned him because he said my son did not cooperate by not panhandling in the parking lots of Walmart, which is apparently a common practice for some people.  They travel the country and not only panhandle in Walmart parking lots but they sleep there too.  Apparently both are legal.

My mom was as stressed as I was and failed to get proper information from my son when he called.  She called me on my cell phone but all she knew was that he said he was at a Kroger grocery store.  She did not know which state he was in.  She was able to dial *69 and get a number.  The detectives I was with helped locate the number.  We called the police there and they found my son.  I wired the officer money to buy my son a bus ticket.  He arrived home two days later.

I wonder how many psychiatrists I’ve spoken to over that cell phone throughout the past eight years while I’ve been an advocate for my son?  I bet if I had one dollar for every one I’ve talked to I’d have enough money to pay my power bill.

I use the cell phone for my own doctors and nurses too.  Anyone who lives with a chronic illness might well know that if you leave messages for doctors and nurses, you really need to be available when they return your calls.  My cell phone has been pretty important.

Without the cell phone I’d be at that phone booth and I can’t recall what state I was in when I took this picture.  Phone booths are hard to come by.

I think if cable vision is counted as an expense, then a person ought to be able to choose between that and an internet connection.  It also seems like an internet connection would be more useful than cable vision to families with children in school who need access to do homework.

I don’t know what our social services thinks about people with disabilities having an internet connection.  They seem to think cable-vision is more important and it cost a lot more, so this doesn’t make sense to me.  I’ve learned through experience that an internet connection for me is a lifeline, which cost me about twenty dollars per month, a lot less than cable.

I don’t have a car payment, thank goodness, but I have repairs.   Social Services will allow for repairs but won’t let me use the expenses I’ve incurred because I put it on my credit card.    Even though they allow a person asking for one-time assistance to have a credit card, they don’t include the monthly payments in expenses.  Go figure.

“I will find the remaining funds if you can help me and I need for you to tell the social worker this when she returns,” I told the woman taking the application.

“We have at least one hundred dollars we can pay towards your bill and possibly two hundred,” she said looking at the computer.

“That would be very helpful,” I said.  “Even if it is one hundred dollars, I’ll pay the remainder.”

I can count on one hand the number of times I’ve asked social services for help during the seven years I’ve lived here.  Each time has been a difficult experience.  It isn’t swallowing my pride that has been the most difficult part but instead is the things some of the social workers say .  I do remember one time when a social worker helped me without preaching at me or putting me down.  I couldn’t believe it.  She said something like, “Wow, how do you make it each month?”

Exactly I thought!  Exactly.  I’m fairly creative when it comes to, “making it each month.”

Usually they ask, like the woman did several times yesterday, “How did you get in this position?”

I should have said something like, “Well, how much time do you have because it all started about ten years ago.”

The social worker finished the application but she once again asked me the same question that I thought I’d answered at least twice already.

“I just don’t understand.  I’m looking at your expenses and they are less than three hundred dollars.”

“You are forgetting the power bill, which is $255.00,” I reminded her, again.

“Oh.  That’s right.”

Why the hell did she think I was there?

“Yes.  That is almost half of your income,” she reminded herself.  “But you say you can pay if we don’t.”

“Yes, but on a credit card,” I reminded her, again.

I signed the application and left.

I came home and immediately lied down on my sofa.    I’d eaten a piece of string cheese on my way there.  I had felt so well when I woke up I was actually looking forward to coming home and eating lunch.  I had lost my appetite though.  I was depressed from the interaction.  Maybe they would help me though, I thought, so I rested.

My cell phone rang and I knew it was her.

“We can’t help you,” she said immediately.

“Why not?” I asked.

“Well, because you told us you have a way to pay.”

“But you said I had to have a way to pay the remainder to qualify for the help.”

“Well, we still have questions about how you got yourself in this position.”

“I’ve had a power bill that has been over half of my monthly income for three consecutive months,” I reminded her, again.

“You can’t maintain,” she said.

“What?” I asked.

“You can’t maintain.  You’ve been in this position before.  I’m sorry.”

“Well, maybe if I lived in a tent I could maintain,” I told her.  She was starting a sentence when I hung up on her.

I didn’t care if I was rude and I still don’t care.

I don’t need someone reminding me that I’ve found myself in these shoes several times in these past eight years — and most certainly — I will not stand and listen to someone who says it like I’ve committed a crime when that person doesn’t have one suggestion as to preventing this situation in the future.    My apartment is not insulated well and as a result, I pay.

I have maintained! I’ve never had any utility shut off. I’ve also camped enough to know I can live in a tent, which I might do before I would ever ask those people for help again.

I believe if I had dressed differently and lied, although I’m not sure which part I was supposed to lie about, that I would have received the assistance that is there for me.

I have a feeling that the people who get help know what to wear or rather, what not to wear, what to say or not say, and how to act.

An acquaintance of mine called me late yesterday.  She asked how I was doing.  I told her about my experience.  She’s been in my shoes, only not sick, just poor.  She said I should have never told them about the credit card.  She said I should have said I could pay out of my checking account and then they would have helped me.

I  didn’t know the right answers, but the right answers are not the truth.

I know what I would have liked to have said, but I won’t say it here.

Sometimes this world seems harsh. Sometimes, it seems like a hard place to be.

“You can’t maintain.”

For some reason that remark has stuck in my brain.

The thing is, is that I can maintain.  I do maintain and will continue to do so.