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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14 responses to this post.

  1. Posted by MyFoggyBrain on July 18, 2010 at 4:04 AM

    I think you should just print this blog post out and send it to all those folks you were supposed to write letters to… tell them to find the spot in this blog that is about them, that will tell them what they need to know! 🙂

    You do what you can, with what you have… whether it’s energy… love… money… you name it, you inspire us to keep going!!

    You should never feel guilty for the life you choose and for taking care of YOU, which includes taking care of your family, which includes your dogs. You have been given a life of chronic pain for now… noone but you can determine how to manage that and we all know the 4-leggeds make for the best medicine!! Stand proud if anyone has anything to say about it, they certainly are not around when we are in our worst moments of pain 24/7… that’s when our faithful friends are there to keep us company. You should never EVER feel anything but warm and fuzzy about that. 🙂

    Hugs to you and thank you, as always, for writing such beautiful stuff… can’t wait for the book! 🙂
    Tamiko

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    • Tamiko,
      Hi! Nice to see a comment from you, as always. You inspire me! Especially about the dogs. Personally, I think dogs ought to be part of disability benefits or at least their food could be counted as an expense. I was thinking yesterday how little their food costs compared to how much they give to me in life.
      It is kind of tough buying the flea meds but so what right? At least here that is only for the summer.
      Thanks for reading my post. I haven’t been able to write anything new lately. That was one long hard week and it has taken me until now to mentally recover. I have managed to make it through another month of paying the bills. At least I paid the utilities and got my car legalized 🙂

      Hugs to you too. Thank you for your very sweet words!

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  2. Thanks for signing up to be a Follower, Miss Dogkisses. What a warm and fuzzy feeling you gave me on a not so warm and fuzzy day.

    Hugs and fondness,
    CJ

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    • Hey, I am glad it worked. Just got my google account back up, hope it doesn’t confuse people sending them to the wrong place but it makes it easier to comment I think if I have google. I’m sorry you’re having a not so warm and fuzzy day. Neither am I if that helps any. Very tired and trying to figure out how to make it financially. Whew. Stress. I just want to lie down and not be bothered.

      I hope tomorrow is a better day for you. Hugs to you!
      Miss Dogkisses 🙂

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  3. Today I feel grateful about reading your post because I can understand your anguish and being overwhelmed. I am thankful that because you have taken the time to write these matters down, that you have taken such an important step in your healing. Make shortened lists and do one important thing per day. Going camping will be a relief, but make certain you have plenty of good drinking water (don’t drink out of the streams), and do a meditation and begin seeing the light at the end of the tunnel. You don’t need to stay put. “Moving is living”, is something I heard just recently. Makes perfectly good sense. SO … Move, get up, do something, smile, rejoice in what you do have. Bless someone less fortunate by doing something kind or sharing a part of your apple, some form of giving. Pray The Our Father and meditate on the words. Make sure to forgive everything and everybody and yourself. Shrug off the bad feelings, hurt, misunderstandings, resentments and fears. Walk with The Lord. Whenever the poor thinking taps you on the shoulder, give it to God. Release everything so you do not carry it around with you and have faith that if you have the courage to ask Him for what you do want, He will find a way for it to come to you. Turn everything over to Him and Walk in Faith.

    I will keep you in my prayers and light candles for you too.

    Try http://www.gratefulness.org (Light A Candle) You can do it on-line, free, and they stay lit for two days. It’s a peaceful site. Also, on my sidebar, is a link to Saint Therese. She is the Little Saint who does great deeds. You can write in a prayer petition and this Little Saint will help you. Even if you do not understand why … for me, just do it and see things improve. She has always helped me. The Lord always helps me. Why? Because I ask and I thank Him everyday.

    <> Now, remember what I have asked you to do because Walking in Faith takes courage and tenacity but it takes doing. Pray believing and you shall receive what you pray for. Just don’t pray in a negative way or ask for something you don’t really want. Then lastly believe. Believe Only Good Cam Come From This”, and you’ll see first some upheaval and then things turn around quickly and in peace. And finally … push doubt and any negative thought away. Refuse them and do not permit them around you or yours anymore.

    Take care!

    “Sleeping Kitten – Dancing Dog!”

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    • Sleeping Kitten – Dancing Dog — Hello!
      Thank you for this comment. If I do get my camping trip, I’ll make sure to do two things, print this very positive comment, and definitely won’t drink the water. I washed my dishes in a river once and nearly died! No no no “crik-water” for me.
      I’ll check out the link suggestions you gave me too. I can use, or rather, need a little help along my way.
      Thanks for reading my post. I appreciate your compassion and encouragement you have kindly given me. I really do. I hear what you have said 🙂

      In gratitude,
      dogkisses.

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  4. Posted by Anonymous on July 8, 2010 at 3:36 AM

    I think that the best thing you could probably do is pack a few peanut butter & jelly “sammiches”, some ice cold water and some Red Bull, and your mattress and then get yourself up on that mountain anyway you can (maybe the anthropologist will drive you ?). IMHO, this would not be irresponsible or running away but rather a much needed head-cleaning vacation if only for a day or two. Go rejoice in the sunshine, fresh air and solitude of the mountains. Everything will still be there when you get back home but I guarantee it will look less daunting.

    As to talking to yourself, why not try singing your thoughts? Couldn’t harm anything. Just try it once. Sing about the damn Court or Shrink to the tune of “Octopus’ Garden” or “Grandma Got Run Over By a Reindeer” and tell me that it didn’t make you smile or help your mind to get more creative about how to handle those concerns.

    As me Hubby tells me every single day, “Better Days Are Coming”. So today, just breathe.

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    • Anonymous– Well, I sure wish you had a name ’cause you read my mind. I’m going camping. You can bet on that. Camping, especially if you know where to go, is cheap, healing and good medicine. Nature has a way of fine tuning your senses, which I think helps to deal with problems.

      As to singing my thoughts, well, I do that! But I can’t wait to try it to “Grandma Got Run Over by a Reindeer!”

      Thanks so much for this comment. PS I don’t know about the Red Bull though. I get kind of shaky. Think I’ll stick to the black coffee 😉

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  5. Posted by licoriceroot on July 7, 2010 at 1:53 AM

    One step at a time, my dear, and all will be OK. Hard to believe now, but it will be. Those of us with chronic illnesses (and kids with chronic illnesses) always have that stack…The stack of medical bills taht goes far beyond what most people can fathom. I just keep praying some magic gnome will come and take mine away.
    You’re not alone in this, if that’s any consolation.
    Just keep putting one foot in front of the other.
    🙂

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    • licoriceroot– hi! I just saw your username somewhere today and thought what a cool name. And here you are! I don’t think I’ve visited your blog but I will.
      Thanks for the comment. I’m going to bed now and maybe I’ll think about magic gnomes, kind of like the tooth fairy. They should come and take the old bills away and leave a dollar behind. That would be nice wouldn’t it?
      Yes, it most certainly helps to know I’m not alone. That is one thing I do love about having a blog. Thank you for the encouragement.
      — dogkisses.

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  6. How sad to think that those beautiful forsythia bushes scared you so much when you were little.

    I talk to myself, to my computer, to my dog and cat also. We are not crazy! Now when I answer myself that’s a little weird.

    I have put off many doctor appointments because I don’t want to deal with the bills. Maybe it’s stupid, but often it’s necessary.

    I’ve been shoving bills and such in a basket (overflowing) in my nightstand. Soon I will have the urge to throw the whole thing in the garbage.

    Love this post….

    xomo

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    • Hello Mo!
      Oh… it’s okay about the forsythia. The switches on the fridge didn’t have any blooms on them, so they didn’t really look like the bushes anyway. I think they are pretty. My mom was scarier than those bushes. She’s not as scary now 😉
      I haven’t talked to my computer yet. I’ve never thought of it.
      I’ve thought about throwing away some old bills but haven’t yet. I have baskets, shoe boxes, and a full file cabinet. My life is like running a corporation!
      I took my son and a couple of his friends out this evening and forgot my problems for a while. It was nice.
      I’m sorry you have to cancel appointments because of the bills. I hope you are doing okay. I need to visit your blog and see how you are doing!
      Thanks for reading my post. I enjoy your comments.
      hugs,
      dogkisses.

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  7. Oh, Miss Dogkisses. I love to read your posts, you write so beautifully. I can hear the sounds you describe so clearly. I can see what you see. I can smell and hear what you smell and hear. And, I can feel the emotion that is always in your writings, so poignant yet, always so tender and so meaningful and memorable.

    But, this is not fiction. This is your life. A life so full of anguish and sorrow, full of insurmountable problems, full of obstacles and anxiety. And yet, always, always in between the lines there is a glimmer of hope, a strength of perseverance. I don’t know if you are always feeling it, but something in you knows that you will not give up and that you will make it through. There is a stubborn defiance.

    You know how to handle some of the “To Do”. Just like you did the bills, one small task. But one you can cross off the list. One phone call today, maybe two if the first one goes well. Tomorrow another call. This one to your brother, and nail down a specific day that he will fix your car!.

    I wish there was something I could do to knock some of those things off of your list. I can offer my prayers and a virtual hug, a long tender hug. I can offer my words of encouragement, for what they are worth. I can remind you that you are a strong, more than capable woman. I can say I am so sorry, that on top of the pain and fatigue you have to deal with such heavy burdens. And, I am so very, very sorry.

    You are on my heart and in my prayers.
    Fondly,
    me,
    CJ

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    • Dear CJ,
      Thank you for your comment. Your words made me cry. I felt a world of emotions reading them. I guess, what I was feeling while I was writing, just all came out when I read your words. I feel better now but again, as I was reading your comment, it took me back to that same place and time, as a kid, in the summer, growing up with the switch bushes and my grandma next door, who I didn’t mind seeing us because I loved her. I still wonder what it is about that time that is there in my feelings today. Maybe it is that “stubborn defiance,” you spoke to. I do have that.
      Your kind words, your recognition of the challenges I face, and your prayers are absolutely priceless to me.
      Thank you.

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