Some days I feel as though I just might be abusing "the system." I awaken with a clear head, a few creaks and groans, but what 53 year old doesn't, my mind clear, without the fog that clouds my ability to attain words needed to complete sentences. I begin my list of chores post haste, achieving nearly all listed, by day's end. I'm even able to stay up until 10 p.m. .
The accusations of people abusing the Social Security Disability, fly wildly on social media. Posters of heavy set people using store supplied scooters to complete their shopping, videos of a person flinging their walker about with ease, rather than leaning on it for support. Judgments are bountiful. And usually placed by uneducated, ignorant people.
As educated as I am on the issue, I have been "that" person. As a result of the accusations I am defensive, and find myself pleading my case to people I don't even know. Energy, I need not expend. Energy I can't afford to expend.
And then there are "those" days. Like today. A day that was preceded by restless, choppy sleep, leading to a headache that roared when I sat up in bed. A day where getting to the kitchen for the comfort of coffee seems to take forever, clinging to furniture and onto walls to steady my weak, unsteady body. Can I stand long enough to pour a bowl of cereal? If I do, will I make it to the living room without spilling it. And if I do, can I eat it without dribbling the milk down my chin via the shaking of my hand. A day when that empty bowl will sit on the end table until I need to get up for a trip to the bathroom. Those trips need to be made strategically, with how long it may take to get there, in mind. After I am done I will hobble the bowl to the kitchen, perhaps refill my coffee, and return to my padded, strategically laid out, place on the sofa. My loyal, Gabby will snuggle next to me, but only cozy until I have to switch positions due to pain. This happens frequently, and I apologize to her each time. This paragraph covers the first hour I am up. A bit of pain will lower between 11 a.m. and 5:00, then begin it's rise again. During that time I will need to nap due to overwhelming fatigue, that seems to swallow me up. If you're doing the math, you have found that I may have as much a 6 "good" hours in a day, 2 of which, are spent trying to fall asleep for that nap. That leaves 4 hours of the 24 we are gifted each day, that I feel able to tolerate noise, smells, and the pain. On a grading scale, maybe a D+.
And still, one those good days, numbering around three a month, I feel guilty to be receiving Disability Income. I've always defended it with the argument that what I receive is based on how long I worked and what I paid in to the "system". About a month ago, it was pointed out, in yet another Facebook argument, that he, too, pays into that pool, and I was welcome for his supporting me. "It must be nice." I was shattered. He was right. I don't have my own little Social Security box, that I draw from. It is a pool of money from all workers. So, the ugly truth is, 27 days of the month, this country's workers help support me. Perhaps what sets disability apart from welfare is that I am only receiving as much as I actually paid in, as a 25 year employee.
But, those three days...The C+ days...The ones that allow me to perform tasks on a list, including a shower...I feel like I am abusing "the system."
I suspect, that until I am bedridden, I will continue to feel that way.
Wednesday, November 6, 2013
Monday, October 21, 2013
FEAR OF THE "L"
Love. By the dictionary definition it means, "strong affection", "warm attachment", and "attraction based on sexual desire". That's a pretty broad definition! It would seem it is we, the ones actually feeling any of, or more of, these definitions, that determine the kind of love any given situation is tagged. It gets tossed about as a false greeting, such as "Loves!", as a person leaves another, with which they were chatting. For me, that is the most insincere way to use a word with such a strong reputation. There is, of course, the casual use, as in, "Oh, I just love this jacket!". I think most people are guilty of this careless overuse. After all, if you look at the official definition, you must ask yourself, do I have a strong affection for this jacket? Do I have a warm attachment? And, I must hope, that you do not have a strong sexual desire for the jacket, although I did see show that showcased a man in love with his car. I mean the "attraction based on sexual desire" kind. For real.
The thing about love, I believe, is that their are many kinds. I do not love my son the same way I love my sister. I didn't love my Grandma the way I loved my Mom. I have several male best friends that I love very much. But, not the way a married couple love. I love my sweet Doxie, but not the way I love the gals that have stood by me through my tears, and celebrated my successes. So, it's no wonder the word has seemed to have lost its "oomph."
In fact, it is referred to, mostly by the male population as "the L word". As if it were as horrid a thing as "the F word". If one would look at it as having different levels, perhaps it wouldn't seem such a feared description of one's relationship with another.
If I were to go purely by Mr. Webster, I would have to count myself among the luckiest persons in the world! I certainly have a strong affection for many people, and, without doubt have a warm attachment to a host of folks--some, I've never met, but through social networking have become "as family". The third definition I listed is, for me, saved for a select few in my world. Although, in my twenties I had no clue as to the definition of love at all, and mistook acknowledgement as love. Love, at that time, based on how well I performed my list of tasks for the day. Unconditional love didn't come into my life until I became extremely close to a family of 2nd and 3rd cousins, who almost rejoiced when I walked in the door. For no other reason than I had walked in the door! What a feeling that was!
I have unconditional love for my son, my Gabby, and the friends and family described above.
You have to hurt me terribly to lose my trust. Even worse to lose my love. That may not be healthy, or work out so well on my end, but for the person receiving my love, well, I hope they understand that a piece of me goes with it.
I have raised my son to recognize that there are many kinds of love. I've educated some young people I've met via Facebook, on the many kinds of love, and that saying "I love you" doesn't just mean the "I do" kind of love. As a result, I was privileged to be told by my Asperger's/Autistic, Brandon, (their brother) "I love you." Something any person that deals with those disorders, knows does not come easily, if at all. To me "love" is to be felt without walls, or conditions. If you feel love for someone, in whatever form it is, tell them. Tell. Them.
Someday, that person will not be there, and will, perhaps, pass through this life not knowing that you did feel a "warm attachment"to them. Could you live with that? As for me, if I love you, prepare to hear it, and feel it. No apologies. Ever.
The thing about love, I believe, is that their are many kinds. I do not love my son the same way I love my sister. I didn't love my Grandma the way I loved my Mom. I have several male best friends that I love very much. But, not the way a married couple love. I love my sweet Doxie, but not the way I love the gals that have stood by me through my tears, and celebrated my successes. So, it's no wonder the word has seemed to have lost its "oomph."
In fact, it is referred to, mostly by the male population as "the L word". As if it were as horrid a thing as "the F word". If one would look at it as having different levels, perhaps it wouldn't seem such a feared description of one's relationship with another.
If I were to go purely by Mr. Webster, I would have to count myself among the luckiest persons in the world! I certainly have a strong affection for many people, and, without doubt have a warm attachment to a host of folks--some, I've never met, but through social networking have become "as family". The third definition I listed is, for me, saved for a select few in my world. Although, in my twenties I had no clue as to the definition of love at all, and mistook acknowledgement as love. Love, at that time, based on how well I performed my list of tasks for the day. Unconditional love didn't come into my life until I became extremely close to a family of 2nd and 3rd cousins, who almost rejoiced when I walked in the door. For no other reason than I had walked in the door! What a feeling that was!
I have unconditional love for my son, my Gabby, and the friends and family described above.
You have to hurt me terribly to lose my trust. Even worse to lose my love. That may not be healthy, or work out so well on my end, but for the person receiving my love, well, I hope they understand that a piece of me goes with it.
I have raised my son to recognize that there are many kinds of love. I've educated some young people I've met via Facebook, on the many kinds of love, and that saying "I love you" doesn't just mean the "I do" kind of love. As a result, I was privileged to be told by my Asperger's/Autistic, Brandon, (their brother) "I love you." Something any person that deals with those disorders, knows does not come easily, if at all. To me "love" is to be felt without walls, or conditions. If you feel love for someone, in whatever form it is, tell them. Tell. Them.
Someday, that person will not be there, and will, perhaps, pass through this life not knowing that you did feel a "warm attachment"to them. Could you live with that? As for me, if I love you, prepare to hear it, and feel it. No apologies. Ever.
Sunday, May 26, 2013
STILL PROUD AFTER ALL THE...STUFF
I am an American. I am proud of that. Still.
I am proud of a country that comes together during tragedy. I am proud of a country that
allows me to write this blog, speak my discontent, sing the songs I like.
"Speak my discontent." Discontent? With what, those from other countries may ask. In the "land of opportunity", what could you possibly be discontented about? From their view, this country is light years better than from where they came. Perhaps they escaped starvation, oppression, and torture. Worse than that of the United States. Worse.
For the first time, recently, I posted my disappointment with our Commander In Chief. It was a big step. I'd not done so earlier, simply because I was embarrassed. Embarrassed that I'd voted...again...for "change". I voted, I thought, for the lesser of two evils. Or at least an evil I could live with, as the complete lack of concern for the middle class the opponent represented infuriated me. Of course, all of my discontent is not piled on the President. The "mean kid" fights going on in the legislature is appalling. And yet, I am proud to be an American.
I was raised watching my Mother moved to tears at every parade, as the color guard, or the Veterans passed by. I knew there must be something very special about them at a young age. Unfortunately, during my selfish years, feeling patriotic was near the bottom of my list. Oh, I was still glad to be in America, just not proud of it.
And then The Gulf War became the first "real" war I remember. I had vague memories of Vietnam, but it was mostly the ghostly body counts announced at the end of newscasts. But, now, it was in my face. I remember crying at the announcement, for all the young soldiers being put in harms way. I walked the Memorial Day parade to the courthouse of the county seat to hear uplifting stories, and sing "God Bless The USA with the crowd, through tears. A proud American was born. To this day that song brings me to tears. "Where at least I know I'm free".
Free. Our Constitution assures us that, indeed, we are free. Our government is steadily putting that luxury is question. And it scares me. A lot. As a disabled American, depending on disability, I am terrified of losing my health care; losing some of my income. Because an out of touch President, Congress, and House don't care about the middle class. How ironic.
What keeps me proud, however, are the men and women who volunteer to stand up for this country, warts and all. They put their young lives on the line to ensure that the lack of freedoms of other lands do not land on our shores. They do exactly what they are ordered to do, even if that request is pampering spoiled government.
And now. Now, I prepare myself for my own son to enter into that world. In January of 2014 he will sign up for the U.S. Marine Corps. It has been his dream since he was nine years old. His is the kind of proud of this country that our own government needs to be.
As his mother, my emotions are mixed, of course. It makes my heart ache, and my eyes tear. But, I could not be more proud! Perhaps, I did something right.
So, on this Memorial Day, I salute those who "gave all". Hoping, praying, that my young Marine-to-be won't end up one of them, but proud that he loves this country enough to chance it.
Semper Fi, son.
Tuesday, April 2, 2013
ANYTHING BUT BLUE~~"MY BRANDON"
I could not be more blue!
I'm all decked out in blue--the only blue I own--changed my Facebook color to a special blue, and my profile to one of the symbols that represent the reason for my blue day.
Today is "Go Blue For Autism" day. April is Autism Awareness Month. The numbers are staggering. Today, 1 in 88 children are born with some form of Autism. Earlier in 2012 the odds were 1 in 166. In the eighties the odds were 1 in 10,000, the nineties, 1 in 2500, as time went on, 1 in 1,000. Someone you know, probably has, or knows a child or adult with some form of Autism. Questions swirl in the medical world to explain the increase. So many theories are put forth, many are received by the parents as ludicrous, as they live with the challenges, and can discount ideas of parental actions causing it. So much needs to be discovered!
My interest in Autism goes back to High School, when I chose a book about a little "lost boy" as my English book report. The book was called "Dibs, In Search of Self" by Virginia Axline. The world that Dibs lived in was mysterious, unlocked by no one, until the author, a psychologist, tried some, then unproven, methods to bring Dibs into "our world". Through intensive , exhaustive therapy sessions, Dibs became a functioning member of "our world". I shared the victorious feeling of the author, and the interest in Autism stayed with me.
Last year, I had the pleasure of "meeting" a wonderful young man named Brandon on Facebook. He had Asperger's-very high functioning. I'd like to share our friendship with you.
I had already met his entire family, when his oldest brother let him chat on his Facebook account. He'd heard my name around his home, due to my friendship with his brother, and wanted to meet me. Our first chat was shortly after his brother, Jake, passed away after a 7 year battle with Leukemia. His first conversation consisted of confusion. Why, he wondered, did his mother always call his brother "her baby" when he was neither the youngest, or her birth son? I gave an explanation, and he seemed satisfied. And so began our learning from each other.
Brandon's life became tumultuous after his brother passed. His mother that did not understand, nor care to learn, how he saw life, and abused him as a result. He was torn between hating her and feeling he had to like her because she was his mother. Her time, nearly his entire life, was spent on Brandon's ill brother. Taking her place, was his oldest brother, who at age 14 was struggling with Brandon's episodes, and teaching him to talk. You see, he was mute for the first eight years of his life. And one day, he spoke. In sentences. His brother's love did that, sparking Brandon's dream was to be a doctor.
As we grew closer, our chats became daily, and lengthy. Our conversations would start with his greeting of "hi", so I would say "hi". He would repeat, "hi", and I would too, and then one of us would throw another word in there like "low", and the game would continue until one of us asked how the other was. Brandon was empathic to my medical struggles. Yes, I said empathetic. Not a term associated with Autism. Brandon had a wonderful sense of humor. I had to be mindful of my "sillies" though, because, as Aspies do, he would take exaggerations and sarcasms literally. It could be a challenge explaining the figure of speech to him, but it was part of our learning from each other.
During the summer of last year, he got pneumonia, and long story, short, he suffered injustices and abuse that led to a lung transplant. Sadly, after being in the wrong hands, medically, led to the fail of the lungs. And a second transplant. During this time, our conversations continued, and he relayed the discomfort of his illness to me. It was heart wrenching to see "why am I so sick?" in my message box almost daily. He became weaker and weaker, and I think we had some of our best conversations during those times.
Brandon, while in his hospital bed, explained to me one day, how his world looked, tasted, sounded. It was amazing. How some days seeing too many things overwhelmed him and made him angry with everyone. And of course, that is when he would hit, kick, bite...anything to get his point across. He tasted color. I asked if he meant like purple tasted like grapes, and he replied, "No, grapes taste like grapes." Silly me! He tried very hard to explain that one, but I just settled for the concept. Some days he could hear every single thing, and it would lump all together into an enormous mind engulfing sound. At one point, he shut down for three days. He was within himself. There was the danger that he may not come back. Oh how we rejoiced when he came back to us!
By this time, Brandon's second lung transplant was failing, and to make his life even more difficult, a mass was found at the back of his head. Surgery was unable to get it all, and his health declined. All the while, he was chatting with me. Even during his darkest days, he told me what he saw, and how he felt. At one point, Brandon passed for a short time. He told me the most wonderful accounts of Heaven. We had had chats about religion in the past, and he always said he was afraid to die because God scared him. He was too big. But, after his visit to Heaven he returned comforted that "it wasn't so bad." He saw his brother, Jake, and was happy to see that Jake had hair and could walk. We talked about Heaven and how he, too would feel better some day.
As he became more ill, he would drift in and out of consciousness, and see Jake who was trying to get him to join him, which ticked him off because he didn't want to leave us. One day he relayed to me that Jake had made a new friend in Heaven. How wonderful, I said. There was something coy about the way he said it. You see, my Mom passed away 10-12, after 4 years suffering the results of a stroke. "Your Mom's name is Carol". At first I stared at the screen. When realization hit, I sobbed loud, guttural sobs that Brandon probably would have found too loud! He then told me her first and last name. I had not ever discussed my Mom with him other than to say she was ill. Jake's new friend was my Mom. "She's really pretty", came Brandon's assessment. I agreed through sobs. Jake had found Mom like I told him to, before he passed, and now he was introducing her to Brandon.
From time to time during the following 10 days he would tell me he talked to his brother, and many times Mom was there. My heart soared and I thanked him for sharing that sight with me. His time was running short, and, having spent so much time visiting with Jake, he knew the exact time of his death. He wanted me "there". It would be in the middle of the night, so I set my alarm, and got up to joke with him one last time. I'd prayed for Mom to help with his transition, and when the time grew near, he told me all his angels were there waiting to take him. I asked him if my mother was there and felt so happy to hear she was! The minutes ticked away, and he finally said he had to go now. "Have fun with your puppy"...and he was gone. At the exact moment he foretold.
There was nothing "blue" about Brandon. He didn't even like blue because it tasted bad. But, today I wear blue to support the millions of parents and their very unique children--and adults--that live their lives around some spectrum of Autism. A reason for it's existence needs to be found, but until then, please support them. Read. Watch TV specials, Google, but learn about Autism. With odds going at the rate they are, you WILL have contact with someone with it. Please be kind and educated.
I'm all decked out in blue--the only blue I own--changed my Facebook color to a special blue, and my profile to one of the symbols that represent the reason for my blue day.
Today is "Go Blue For Autism" day. April is Autism Awareness Month. The numbers are staggering. Today, 1 in 88 children are born with some form of Autism. Earlier in 2012 the odds were 1 in 166. In the eighties the odds were 1 in 10,000, the nineties, 1 in 2500, as time went on, 1 in 1,000. Someone you know, probably has, or knows a child or adult with some form of Autism. Questions swirl in the medical world to explain the increase. So many theories are put forth, many are received by the parents as ludicrous, as they live with the challenges, and can discount ideas of parental actions causing it. So much needs to be discovered!
My interest in Autism goes back to High School, when I chose a book about a little "lost boy" as my English book report. The book was called "Dibs, In Search of Self" by Virginia Axline. The world that Dibs lived in was mysterious, unlocked by no one, until the author, a psychologist, tried some, then unproven, methods to bring Dibs into "our world". Through intensive , exhaustive therapy sessions, Dibs became a functioning member of "our world". I shared the victorious feeling of the author, and the interest in Autism stayed with me.
Last year, I had the pleasure of "meeting" a wonderful young man named Brandon on Facebook. He had Asperger's-very high functioning. I'd like to share our friendship with you.
I had already met his entire family, when his oldest brother let him chat on his Facebook account. He'd heard my name around his home, due to my friendship with his brother, and wanted to meet me. Our first chat was shortly after his brother, Jake, passed away after a 7 year battle with Leukemia. His first conversation consisted of confusion. Why, he wondered, did his mother always call his brother "her baby" when he was neither the youngest, or her birth son? I gave an explanation, and he seemed satisfied. And so began our learning from each other.
Brandon's life became tumultuous after his brother passed. His mother that did not understand, nor care to learn, how he saw life, and abused him as a result. He was torn between hating her and feeling he had to like her because she was his mother. Her time, nearly his entire life, was spent on Brandon's ill brother. Taking her place, was his oldest brother, who at age 14 was struggling with Brandon's episodes, and teaching him to talk. You see, he was mute for the first eight years of his life. And one day, he spoke. In sentences. His brother's love did that, sparking Brandon's dream was to be a doctor.
As we grew closer, our chats became daily, and lengthy. Our conversations would start with his greeting of "hi", so I would say "hi". He would repeat, "hi", and I would too, and then one of us would throw another word in there like "low", and the game would continue until one of us asked how the other was. Brandon was empathic to my medical struggles. Yes, I said empathetic. Not a term associated with Autism. Brandon had a wonderful sense of humor. I had to be mindful of my "sillies" though, because, as Aspies do, he would take exaggerations and sarcasms literally. It could be a challenge explaining the figure of speech to him, but it was part of our learning from each other.
During the summer of last year, he got pneumonia, and long story, short, he suffered injustices and abuse that led to a lung transplant. Sadly, after being in the wrong hands, medically, led to the fail of the lungs. And a second transplant. During this time, our conversations continued, and he relayed the discomfort of his illness to me. It was heart wrenching to see "why am I so sick?" in my message box almost daily. He became weaker and weaker, and I think we had some of our best conversations during those times.
Brandon, while in his hospital bed, explained to me one day, how his world looked, tasted, sounded. It was amazing. How some days seeing too many things overwhelmed him and made him angry with everyone. And of course, that is when he would hit, kick, bite...anything to get his point across. He tasted color. I asked if he meant like purple tasted like grapes, and he replied, "No, grapes taste like grapes." Silly me! He tried very hard to explain that one, but I just settled for the concept. Some days he could hear every single thing, and it would lump all together into an enormous mind engulfing sound. At one point, he shut down for three days. He was within himself. There was the danger that he may not come back. Oh how we rejoiced when he came back to us!
By this time, Brandon's second lung transplant was failing, and to make his life even more difficult, a mass was found at the back of his head. Surgery was unable to get it all, and his health declined. All the while, he was chatting with me. Even during his darkest days, he told me what he saw, and how he felt. At one point, Brandon passed for a short time. He told me the most wonderful accounts of Heaven. We had had chats about religion in the past, and he always said he was afraid to die because God scared him. He was too big. But, after his visit to Heaven he returned comforted that "it wasn't so bad." He saw his brother, Jake, and was happy to see that Jake had hair and could walk. We talked about Heaven and how he, too would feel better some day.
As he became more ill, he would drift in and out of consciousness, and see Jake who was trying to get him to join him, which ticked him off because he didn't want to leave us. One day he relayed to me that Jake had made a new friend in Heaven. How wonderful, I said. There was something coy about the way he said it. You see, my Mom passed away 10-12, after 4 years suffering the results of a stroke. "Your Mom's name is Carol". At first I stared at the screen. When realization hit, I sobbed loud, guttural sobs that Brandon probably would have found too loud! He then told me her first and last name. I had not ever discussed my Mom with him other than to say she was ill. Jake's new friend was my Mom. "She's really pretty", came Brandon's assessment. I agreed through sobs. Jake had found Mom like I told him to, before he passed, and now he was introducing her to Brandon.
From time to time during the following 10 days he would tell me he talked to his brother, and many times Mom was there. My heart soared and I thanked him for sharing that sight with me. His time was running short, and, having spent so much time visiting with Jake, he knew the exact time of his death. He wanted me "there". It would be in the middle of the night, so I set my alarm, and got up to joke with him one last time. I'd prayed for Mom to help with his transition, and when the time grew near, he told me all his angels were there waiting to take him. I asked him if my mother was there and felt so happy to hear she was! The minutes ticked away, and he finally said he had to go now. "Have fun with your puppy"...and he was gone. At the exact moment he foretold.
There was nothing "blue" about Brandon. He didn't even like blue because it tasted bad. But, today I wear blue to support the millions of parents and their very unique children--and adults--that live their lives around some spectrum of Autism. A reason for it's existence needs to be found, but until then, please support them. Read. Watch TV specials, Google, but learn about Autism. With odds going at the rate they are, you WILL have contact with someone with it. Please be kind and educated.
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