Every week a new headline catches the attention of a nation ready to attack and judge the subject. Recently, a gorilla, a toddler, and a Mom were in the firing range. Everyone became a perfect parent, and an expert zookeeper. But, the most recent headline sparking debate, is tearing a hole through me, and I've discovered some troubling things.
I had no idea there was a "rape culture." I had to look it up. Such a thing, even after reading the definitions, seems implausible to me. A generation that doesn't recognize the definition of rape, or believe that it should be punished severely...that is one warped, hardened generation.
Nineteen-seventy-nine gave my rapist his 20+ minutes of action. With me, at least. I was naive, a virgin, and very, very drunk. Bad decisions are made while drunk...anyone that had been drunk has probably made at least one in their lives, thus far. My second bad decision (the first was getting that drunk) was taking a ride from an acquaintance who I saw frequently at the bars, and who seemed to be everyone's buddy. I thought, how bad can he be? I never made it to the party he was giving me the ride to. Instead, he pulled into an alley, and kissed me. Then, began pushing me against the bucket seat. As I tried to free myself, I somehow ended up pinned against the console, where he raked me across it, into the back seat. I vaguely remember him telling me to stop crying, but, I don't remember much until the end. This action had nothing to do with sex, but, with opportunity and conquering.
I wish I'd have known that. I lived with guilt and shame for years. I never reported it. I told only one person right after it happened, although my sister knew because she walked in on me getting dressed, and the bruises rendered her speechless. A year later, I told my Mom. She cried so much. She worked in the bank, and wondered how she would ever wait on him again. My already fractured self esteem crumbled to dust. I must mean nothing, if someone could take away something so personal, and toss me about like a rag doll. I made more bad decisions. And more.
After around six years, my doctor demanded I see a counselor. At that time, it was the hardest thing I'd ever done. But, I learned a lot about what makes a rape, and what doesn't mean you "deserve it." That, I think has been the most troubling thing about the headlines...the lack of enlightenment men have regarding rape.
One hopelessly unenlightened man commented specific surroundings that made a rape a rape. Apparently, being assaulted behind garbage dumpsters didn't make the cut. Nor did 'in a car, in an alley'. The men joked about rape being "a forceful way to get your rocks off." I was getting...let's call it riled. I commented on rape being about power, not sex, and more mocking ensued. As my last response, I posted "Rape Myths", and was chastised for my site selection. It was wvu.edu. That's right, a university. What I found most interesting was that my comments were being "liked" by women. Lots of them. Men mocked. How did this happen? When did fathers stop teaching their sons that raising a hand to a woman is wrong?
Just for the record: Myth: Rape is caused by the perpetrator's uncontrollable sexual urge. Fact: Rape is an act of power and control, not sex. In addition, one of the biggest myths about rape is that it happens out of sexual desire..I will add, however, in the case of date rape, perhaps, it may start as sexual urge, but, should stop, no matter how excited a man is, if "no", or fighting back, or trying to escape the situation occurs.I know it's not easy, guys...even hurts, but, if you a real man, you know it's the right thing to do. If you are a man reading this, I beg you not to dismiss it. As someone that has lived through the he experience, been taught about the act, and supported others with the same story, I stand by this. One episode of CSI:SVU would tell you this!
I've not shared my story with many. Perhaps I should have, I suppose. One thing the media has gotten right is that the victim gets blamed before the perpetrator. It has to stop..
Tuesday, June 7, 2016
Thursday, May 12, 2016
LIVING WITH THE "F" WORD--IN HONOR OF FIBROMYALGIA AWARENESS MONTH
I used to be like anyone without a chronic illness.
Since 1994, I kissed Hub goodbye at 4:30am, got up at 6:00, showered and got ready for work. Got Daughter up, and ready for school. Fed the dogs, let them out to be "good puppy". I went to work. Worked all day. After work, I, sometimes, went to get groceries, picked up Daughter from sitter, then rushed home to get my part of dinner ready. We'd have dinner, helped with homework, and I would check her spelling words, with my crotchety teacher look...glasses at the tip of my nose, with a old person voice, either asking her to respell a word, or drawing a star, a smiley face, or my own creation, "Hairy" onto the top of her correct paper. She would take a supervised bath, then we would watch TV until her bedtime, when I would read her a book, turn on her Raffi tape, and head downstairs to watch TV, then run back upstairs to turn the Raffi tape over, run back downstairs to finish watching TV until bedtime. In the morning, I started all over again, just like everyone else.
And, then, Baby Boy was born. The routine had to be tweaked, but, I was in love with that Baby Boy, so "it was all good", as they say. Only, it wasn't.
The day started with that kiss at 4:30, the Baby Boy Alarm at 5 (with him requesting me at midnight, and two), feeding him, while watching IMUS, dressed him, showered for 5 minutes, while he played on a blanket, got Daughter up, helped her dress, fed her, let them play a bit, while I fed the dogs, and let them out, took Baby Boy to sitter, Daughter to school, and myself to work. Pick up kids, rush home, begin my part of dinner. That's when the colic took place. Every single night, at dinner. We'd argue about the fact that it wasn't Baby Boy's fault that he had colic, try to eat dinner, help with homework, check spelling words, with my crotchety old teacher fading, but, still hand drawn stars and smileys. Baby Boy would calm down, and play on his blanket, with Daughter, sometimes, playing with him. We'd watch TV, put kids to bed, with Daughter changing her own tape, and, me reading book to Baby Boy. Turn on his Elton John mix tape, run downstairs to watch TV, back up to turn the tape over, run back down to watch TV, with me heading for bed at 9, Hub maybe 10:30. Up around midnight and two, then all over again at 4:30.
Something didn't feel right. One day, I came home and told Hub that I was exhausted, but not sleepy. More like bone tired. Like walking with cement blocks on my feet, through mud, and 5 feet of snow. And, so sore. I had healed from my Ligation...scars good, bruises gone, but, I hurt everywhere. Eventually, I was fired for missing too much work, due to being put on bed rest at 5 months, and every kind of depression, exhaustion, and so, so much pain. Needless to say, the news was not greeted with joyfulness. But, with some Unemployment, and a tweak of the budget, we did just fine.
My Mother was concerned and told me about a company that would represent me if I wanted to apply for Social Security Disability Insurance. I thought that it couldn't hurt. Now, let me, quickly, say that SSDI is not a government handout, as many people think. It is an account that all of those working, make a deposit into, with every paycheck. It is sort of an assurance that, in time of need, you will be okay, financially. Except, you aren't. But, that's what it is.
I filled out paperwork for a couple of days, mailed it off. I was filing based on an article I'd read in TIME, regarding a mysterious illness reported by, primarily, women, that involved body-wide pain, and overwhelming fatigue. It was called Fibromyalgia. There also a close cousin, Chronic Fatigue Syndrome, now named, Systemic Exertion Intolerance Disease. I have both. After being diagnosed with it, I thought, I finally had an answer. Surely, if I had a name for it, it must be known everywhere, right? The agent that called a few weeks later said "no", I'd never get SSDI based on Fibromyalgia. At the last minute, before my hearing, the company dropped my case, and I was left to represent myself.
I sat in a room with, I think, 15 doctors and lawyers, and answered question after question about my daily routine, how I handled various situations, even my sex-life. The longer I was there, the more anxious I got, eventually shaking, crying, sweating, and having massive panic heartbeats. I was fidgety, and had to be allowed to use the restroom because I thought I would be sick. When it was all over, I was congratulated on my bravery, and they let me read what the doctors had to say about all medical conditions. I could not believe what my Rheumatologist had to say about the Fibromyalgia. He reported that I could sit, stand, or walk for 6 hours a day! I was furious. As horrible as I felt, and this was what he "assessed". Then I got to the assessment of my psychiatric medications doctor. His assessment was written with respect to me, and my struggles with his diagnoses, at the time. And a year later, I was awarded SSDI. But, not for Fibromyalgia. That still got no recognition in the guidelines for SSDI. In fact, it was only last year that it was added to those guidelines. Millions of people, worldwide, have been in pain for decades, and it took until 2015 for it to be recognized as "real", because there is no lab test. Nothing a doctor can show to someone. Nothing as palpable proof.
Eventually, I found a Rheumatologist that listened, and kept up to date on the latest chronic illnesses. He'd just been to a pain seminar a year ago, and he shared the finding of a study that involved pain stimuli and the brain. We all know that the brain is halved by a pathway, and that the left brain is responsible for the movement and sensation of the right side of the body, and vice versa. The study introduced pain stimuli to a person's left leg, and the right side of the brain lit up, as it should. But, when stimuli was introduced for longer, and made more intense, the pain signals eventually crossed over to the other side of the brain, causing pain all over the body, rather than just the applicable side. Continued pain actually rewires the brain!
I suppose this is more information that most of you thought you needed, but, as an advocate for invisible, chronic illnesses, I'm always reminding people to read a bit about Fibromyalgia, if they know someone with it. Of course, you can not understand it, unless you live it, but, just being educated and aware will mean so much to the person that suffers with it! Perhaps, many of you remember an episode of "Happy Days" that had Fonzie frustrated with his Grandma Nusbaum. To make him understand how her age affected her, she had him walk around in shoes with rocks in them, see out of her glasses, and walk a bit hunched, and, with a cane. When Fonzie was asked how he felt, he responded, "I can't see so good. I can't walk so good. My back is killing me!" Grandma Nusbaum was a wise woman!
So, in honor of Fibromyalgia Awareness Month, the month of May, perhaps Google it. When you see that person ask how today has been, rather than "how are you?", because every day with Fibro is different. And, different for each person.
Thank you for your time. I hope everyone has a low pain, high energy day!
Since 1994, I kissed Hub goodbye at 4:30am, got up at 6:00, showered and got ready for work. Got Daughter up, and ready for school. Fed the dogs, let them out to be "good puppy". I went to work. Worked all day. After work, I, sometimes, went to get groceries, picked up Daughter from sitter, then rushed home to get my part of dinner ready. We'd have dinner, helped with homework, and I would check her spelling words, with my crotchety teacher look...glasses at the tip of my nose, with a old person voice, either asking her to respell a word, or drawing a star, a smiley face, or my own creation, "Hairy" onto the top of her correct paper. She would take a supervised bath, then we would watch TV until her bedtime, when I would read her a book, turn on her Raffi tape, and head downstairs to watch TV, then run back upstairs to turn the Raffi tape over, run back downstairs to finish watching TV until bedtime. In the morning, I started all over again, just like everyone else.
And, then, Baby Boy was born. The routine had to be tweaked, but, I was in love with that Baby Boy, so "it was all good", as they say. Only, it wasn't.
The day started with that kiss at 4:30, the Baby Boy Alarm at 5 (with him requesting me at midnight, and two), feeding him, while watching IMUS, dressed him, showered for 5 minutes, while he played on a blanket, got Daughter up, helped her dress, fed her, let them play a bit, while I fed the dogs, and let them out, took Baby Boy to sitter, Daughter to school, and myself to work. Pick up kids, rush home, begin my part of dinner. That's when the colic took place. Every single night, at dinner. We'd argue about the fact that it wasn't Baby Boy's fault that he had colic, try to eat dinner, help with homework, check spelling words, with my crotchety old teacher fading, but, still hand drawn stars and smileys. Baby Boy would calm down, and play on his blanket, with Daughter, sometimes, playing with him. We'd watch TV, put kids to bed, with Daughter changing her own tape, and, me reading book to Baby Boy. Turn on his Elton John mix tape, run downstairs to watch TV, back up to turn the tape over, run back down to watch TV, with me heading for bed at 9, Hub maybe 10:30. Up around midnight and two, then all over again at 4:30.
Something didn't feel right. One day, I came home and told Hub that I was exhausted, but not sleepy. More like bone tired. Like walking with cement blocks on my feet, through mud, and 5 feet of snow. And, so sore. I had healed from my Ligation...scars good, bruises gone, but, I hurt everywhere. Eventually, I was fired for missing too much work, due to being put on bed rest at 5 months, and every kind of depression, exhaustion, and so, so much pain. Needless to say, the news was not greeted with joyfulness. But, with some Unemployment, and a tweak of the budget, we did just fine.
My Mother was concerned and told me about a company that would represent me if I wanted to apply for Social Security Disability Insurance. I thought that it couldn't hurt. Now, let me, quickly, say that SSDI is not a government handout, as many people think. It is an account that all of those working, make a deposit into, with every paycheck. It is sort of an assurance that, in time of need, you will be okay, financially. Except, you aren't. But, that's what it is.
I filled out paperwork for a couple of days, mailed it off. I was filing based on an article I'd read in TIME, regarding a mysterious illness reported by, primarily, women, that involved body-wide pain, and overwhelming fatigue. It was called Fibromyalgia. There also a close cousin, Chronic Fatigue Syndrome, now named, Systemic Exertion Intolerance Disease. I have both. After being diagnosed with it, I thought, I finally had an answer. Surely, if I had a name for it, it must be known everywhere, right? The agent that called a few weeks later said "no", I'd never get SSDI based on Fibromyalgia. At the last minute, before my hearing, the company dropped my case, and I was left to represent myself.
I sat in a room with, I think, 15 doctors and lawyers, and answered question after question about my daily routine, how I handled various situations, even my sex-life. The longer I was there, the more anxious I got, eventually shaking, crying, sweating, and having massive panic heartbeats. I was fidgety, and had to be allowed to use the restroom because I thought I would be sick. When it was all over, I was congratulated on my bravery, and they let me read what the doctors had to say about all medical conditions. I could not believe what my Rheumatologist had to say about the Fibromyalgia. He reported that I could sit, stand, or walk for 6 hours a day! I was furious. As horrible as I felt, and this was what he "assessed". Then I got to the assessment of my psychiatric medications doctor. His assessment was written with respect to me, and my struggles with his diagnoses, at the time. And a year later, I was awarded SSDI. But, not for Fibromyalgia. That still got no recognition in the guidelines for SSDI. In fact, it was only last year that it was added to those guidelines. Millions of people, worldwide, have been in pain for decades, and it took until 2015 for it to be recognized as "real", because there is no lab test. Nothing a doctor can show to someone. Nothing as palpable proof.
Eventually, I found a Rheumatologist that listened, and kept up to date on the latest chronic illnesses. He'd just been to a pain seminar a year ago, and he shared the finding of a study that involved pain stimuli and the brain. We all know that the brain is halved by a pathway, and that the left brain is responsible for the movement and sensation of the right side of the body, and vice versa. The study introduced pain stimuli to a person's left leg, and the right side of the brain lit up, as it should. But, when stimuli was introduced for longer, and made more intense, the pain signals eventually crossed over to the other side of the brain, causing pain all over the body, rather than just the applicable side. Continued pain actually rewires the brain!
I suppose this is more information that most of you thought you needed, but, as an advocate for invisible, chronic illnesses, I'm always reminding people to read a bit about Fibromyalgia, if they know someone with it. Of course, you can not understand it, unless you live it, but, just being educated and aware will mean so much to the person that suffers with it! Perhaps, many of you remember an episode of "Happy Days" that had Fonzie frustrated with his Grandma Nusbaum. To make him understand how her age affected her, she had him walk around in shoes with rocks in them, see out of her glasses, and walk a bit hunched, and, with a cane. When Fonzie was asked how he felt, he responded, "I can't see so good. I can't walk so good. My back is killing me!" Grandma Nusbaum was a wise woman!
So, in honor of Fibromyalgia Awareness Month, the month of May, perhaps Google it. When you see that person ask how today has been, rather than "how are you?", because every day with Fibro is different. And, different for each person.
Thank you for your time. I hope everyone has a low pain, high energy day!
Sunday, February 22, 2015
AVERTING EXPLOSION
I'm writing today, so I don't explode. I've been pushed around, lied about, and belittled for my entire life, by every kind of person, and I've had it. I'm 54 years old, and still tip-toeing around some people, so their feelings aren't hurt, or their feathers ruffled. All the while, knowing that lies that hurt me, ruffle my feathers, have been told to anyone that will listen.
I am not lazy. I'm a great mother. I do have multiple chronic illnesses. I struggle with my budget, because disability doesn't pay for much. Just because I "sit on Facebook all day", doesn't mean I do nothing else. I have to rest after I take a shower. And vacuum. And change the litter. I have tried to work. I even took a course. Because of the cognitive aspects of my illnesses/diseases, I could not put what I learned with the information in front of me. I worked for 20 years in "the trenches". The money I receive is based on the money I made when I was able to work.
I am intelligent. I may not pick up when I'm being lied to, or about, right away, but the pieces fall into place. I know intelligent people, who love me, and tell me the truth. Even if it infuriates, or hurts me. Those people are not necessarily family. In fact, many of the lies, and betrayals have come from family. In general, true friends have been more like family to me than anyone.
I make mistakes. Lots and lots of them. I barely remember a whole decade of them. The result of "Daddy issues", I'm lucky to be alive. As a mother, I'm sure other mothers would condemn my methods of child-rearing, and that's okay. What I have to show for it, is an intelligent, hard working, witty, empathetic son, and for about 13 years, a beautiful, intelligent, funny, step-daughter. I made enough mistakes with her that she shunned me until she left for college. I am not a girly girl, never have been, really didn't even know how to be one. But, that's what she needed. That and her real Mom. I couldn't give her either.
I settled. I'd resolved myself to spinsterhood, when I met a nice man. I was scared no other man would want me...just like Dad told me...so I married that man. And he was a nice man for awhile. He turned out to be a man's man, a buddy to all guys, not an awful person, by any means, but not husband material--for me. I guess this one should have gone in the 'mistake' category. If I could tell my sixteen year old me anything, I suppose it would be to value yourself enough to wait for someone that would walk hot coals for you, rather than leave you because you're sick.
I registered as a Democrat years ago, because my best friend did, and because I once overheard my Dad telling my Mom that Democrats care about the people, and Republicans were only about money. I voted for our current President...twice. The first time because he seemed genuinely concerned about the people, he was young, and yes, because he was black. I loved the historical footprint it would leave. The second time it was picking the lesser of two evils. I hated/hate people of means that have no clue what it's like to struggle. Hate is not a word I use loosely. I now regret my decision. Haters lay the blame of the state of our country on those that voted for the current President, shouting that it's our fault. That's quite a load to bear. The collapse of a once great nation is on no one person. The unrest, the severely divided government, the heightened race war...these are not the fault of one person. After all, if it takes a community to raise a child, it surely takes a whole lot of people to raise, or lower, a country.
I've become a bit of a recluse. I leave the apartment for Dr. appointments, and grocery shopping. I can say I enjoy my own company, and I do, but the more I keep to myself, the more I want to. I wonder if there is a form of Agoraphobia that allows some time out, but not a lot. It has taken me decades to like who I am, and maybe I'm not ready to share that with too many people. At any rate, if I decline an invitation to "get some pizza", please don't take it personally. Many, many times it just takes too much energy.
I care. If I say I will be there for you, day or night, I mean it. I've been in the zone of wide open spaces, with nobody to reach out to. I am so fortunate, now, to have so many friends...from across the globe....that empathize, sympathize, and give virtual hugs, on days that hurt enormously, or leave me with barely enough energy to shower. I had to decline a visitation for a friend's Mother, because I was in raging "flare" mode, and it saddened me more than he can know. I cry at lots of things. Music, movies, how sweet my dog is, the thought of my son moving out, and sometimes I have no clue why. Just time, I suppose.
I like to drink beer. On Friday nights. I drink about 6, maybe 7 in a 4 hour time period.
I got a DUI 29 years ago. The classes I had to take actually taught me how to drink, rather than scare me away from it. Two beers in an hour with the old BAC kept me under the law. I still hold to that, simply because I do not leave the house. And on the DUI subject, I have spent 24 hours in a jail cell, in an orange uniform, made out of the sturdiest denim I've ever felt. It was a 100 degree day in June. Inside the jail it was 115 degrees of dead air.. As I had walked past a large cell with about five naked hookers, I figured taking the top off would keep me cooler. By late afternoon, I'd lost all dignity, and took off the pants. Through the vent to the adjoining room came catcalls from the male inmates that were lude, and sickening. At one point, one of the hookers yelled for then to shut up, "Because I wasn't like them". To that point, it was the biggest compliment I'd ever gotten.
I am addicted to Facebook, and TV. I don't go out to eat, or to see movies, or to meet friends "to have a few", so I believe I am justified. Facebook has given me new friends, plus re-connection with old ones. It also provides strategy games to try to de-jumble my brain. I'm losing pieces of my memory. As a writer that is very frustrating...and scary. I know, or hope I know, that the "Fibro Fog", the medications I take, and sheer exhaustion are the reason. In the back of my mind I fear Alzheimer's, as it is in the family. I'm sure I'm fine, just a bit ditsy.
I believe and trust GOD. It was a long time coming. I've always believed there was a God, but didn't feel Him. The greater my faith, though, the greater my rewards have been. I have two verses, in particular, that I fall back on in difficult times, and I repeat them over and over, until I feel calmer. By the time Mom passed I could take comfort, knowing she was healed and happy, in God's kingdom. It eased the pain of losing her immensely. The day after she passed, I had a serious car accident, rolling my little truck three times, into a culvert. I was calm. I distinctly remember being so calm. Just watching the weeds roll by. When I came to a rest, I had a feeling...very hard to describe...thankful, praising God, realizing I was saved for a reason. I think I know, so I'm acting on it. If I'm wrong, I know God will turn me in the right direction.
I am done. I'm not sure I actually covered all of the thoughts plaguing my brain, but I touched on many. Love me or hate me, I am...and happily so...me. And, Me is pretty cool.
Wednesday, May 21, 2014
THAT SECOND THOUGHT
Few people, in the course of their lives, know exactly what they want to do when they "grow up". Oh, we want to be firefighters, doctors, scientists, mountain climbers...the list goes on...when we are young. Around Middle School, some of those dreams begin to seem silly, or we outgrow them. By High School, the pressure is on. What college will you go to? What will you study to guarantee you the perfect job when you graduate college?
The first thing you learn is that none of the jobs you dreamed of pay worth a darn. The second thing is that every job requires even just a little college. Computers have even taken over the mechanic's garage. The third thing you learn is...college is expensive, and you notice your parents with a clenched jaw, until you choose your college, and, least they know where they stand, financially. The fourth thing, you hopefully learn, is that you have to work from that point, until nearly the end of your life. Second thoughts on attending college? Of course. Until you realize, college means being on your own! But, then you're told, you'd better get a job to pay for the junk food, and beer. Hmm, maybe that's not so awesome. So many paths to choose; so much confusion!
But, what if....just what if...you'd known since the age of nine, exactly what you wanted to do? And stuck with that plan. Oh, a detail may change, but the overall plan stays in tact your entire school career. Your parents don't have a clenched jaw, so much as a twinkle, or a tear in their eyes. After all, wanting to be in the military since 9 years old is something to be proud of! And the only thing that changed was the branch. What kind of pride would you have knowing you were going to be a representative of the USA. Set aside the childish doings of a greedy, outdated government...YOU would represent you country! And second thoughts? Not a damn one.
The day comes, junior year, and you meet the local Marine recruiter in your school counselor's office. You leave with an appointment for you and your parents to meet the recruiter the next week. Because you have support from your parents, the paperwork begins. The next day soo many papers get signed, and an appointment to go to the Military Examination is set for next week. You find out you will spend your first night in a hotel--alone. Second thoughts? Not really.
Then a glitch in the medical exam makes it necessary to make another trip to have a consultation. By this time, several weeks have passed. Still no word from Sargent on the dates for that. In that time, Junior Prom happens. With a pretty girl on your arm, the thought occurs to you that this is your last prom. Second thoughts? Umm...
In the meantime, friends are wishing you luck, because in 7 or 8 months you will be in Boot Camp. They're afraid for you. Their words, "I don't want you to die" ring loudly in your ears. This isn't just a future endeavor, anymore. It is now. Second thoughts? You're damn right! You want, no, need to spend more time being a kid! You don't want to die.
The time has come to go for that final consult before signing the contract with the US Marines, and Sergeant stops at a gas station. In the bathroom, you call your Dad. Second thoughts pouring out, and you are assured that no matter what you decide, you will be supported. Now for the hard part. "What is your reason for stopping now?" you are asked, and your response is exactly what you told your Dad. "I don't want to die." Sergeant drones on with statistics and taunts. You've made your decision. It's all just happened so fast...much faster than you thought, and you can't wrap your head around not being here.
But here's the kicker. You have NOT given up the mission. After graduation you will start over again with alll those papers, and exams, so that you can finally achieve that esteemed title of United States Marine. And your parents will shine with pride, and shed a tear or two. You will have stuck with it for nine years. Twice the time most of your friends will spend in college.
OooRah, Son.
The first thing you learn is that none of the jobs you dreamed of pay worth a darn. The second thing is that every job requires even just a little college. Computers have even taken over the mechanic's garage. The third thing you learn is...college is expensive, and you notice your parents with a clenched jaw, until you choose your college, and, least they know where they stand, financially. The fourth thing, you hopefully learn, is that you have to work from that point, until nearly the end of your life. Second thoughts on attending college? Of course. Until you realize, college means being on your own! But, then you're told, you'd better get a job to pay for the junk food, and beer. Hmm, maybe that's not so awesome. So many paths to choose; so much confusion!
But, what if....just what if...you'd known since the age of nine, exactly what you wanted to do? And stuck with that plan. Oh, a detail may change, but the overall plan stays in tact your entire school career. Your parents don't have a clenched jaw, so much as a twinkle, or a tear in their eyes. After all, wanting to be in the military since 9 years old is something to be proud of! And the only thing that changed was the branch. What kind of pride would you have knowing you were going to be a representative of the USA. Set aside the childish doings of a greedy, outdated government...YOU would represent you country! And second thoughts? Not a damn one.
The day comes, junior year, and you meet the local Marine recruiter in your school counselor's office. You leave with an appointment for you and your parents to meet the recruiter the next week. Because you have support from your parents, the paperwork begins. The next day soo many papers get signed, and an appointment to go to the Military Examination is set for next week. You find out you will spend your first night in a hotel--alone. Second thoughts? Not really.
Then a glitch in the medical exam makes it necessary to make another trip to have a consultation. By this time, several weeks have passed. Still no word from Sargent on the dates for that. In that time, Junior Prom happens. With a pretty girl on your arm, the thought occurs to you that this is your last prom. Second thoughts? Umm...
In the meantime, friends are wishing you luck, because in 7 or 8 months you will be in Boot Camp. They're afraid for you. Their words, "I don't want you to die" ring loudly in your ears. This isn't just a future endeavor, anymore. It is now. Second thoughts? You're damn right! You want, no, need to spend more time being a kid! You don't want to die.
The time has come to go for that final consult before signing the contract with the US Marines, and Sergeant stops at a gas station. In the bathroom, you call your Dad. Second thoughts pouring out, and you are assured that no matter what you decide, you will be supported. Now for the hard part. "What is your reason for stopping now?" you are asked, and your response is exactly what you told your Dad. "I don't want to die." Sergeant drones on with statistics and taunts. You've made your decision. It's all just happened so fast...much faster than you thought, and you can't wrap your head around not being here.
But here's the kicker. You have NOT given up the mission. After graduation you will start over again with alll those papers, and exams, so that you can finally achieve that esteemed title of United States Marine. And your parents will shine with pride, and shed a tear or two. You will have stuck with it for nine years. Twice the time most of your friends will spend in college.
OooRah, Son.
Sunday, February 2, 2014
SHOULDA KNOWN BETTER
Every now and then, I do really half-wit things. Okay, maybe more than every now and then. The past two months I've done two standout "shoulda known better" things. One as recent as two days ago.
Firstly, I trusted someone I'd never met. Actually, 5 of them. Or maybe it was one performing 5. I'm sure I'll never know. Scammers run amok on social media, dating sites, banking sites...you name it. Most, however, request some sort of money to help them, or join them. The scam I became entangled in, played with my good heart. They call the love scams "catfishing" scams. I suppose the one I was caught up in for two years is, perhaps, a cousin of that...maybe crappie-fishing.,
In previous posts, I have mentioned a family in California, that I became so close to, that when Karie got pregnant, they wanted me to be the grandparent on Josh's side, because his mother, Whisper, was unstable, and abusive. This was an overwhelming honor! The two years with them included soap opera like drama...constantly. My gut would whisper, "who has that much drama in their life?" My heart would say, "They need me". The gut suspicions started at the get-go, but, I always seemed to be able to justify the situation. And, then the hammer came down.
As Karie progressed with her pregnancy...twins...she would send me pictures of the ultrasounds. It was always an exciting day when she posted her ultrasound. And, being the proud, Grandma-to-be, I would repost. What I didn't know was, I had my own personal NSA doing background checks on everything I posted regarding them, on Facebook. The most recent post, the one of her 3-D ultrasound, was the one that proved to the world that I was a fool.
Almost as soon as I posted the ultrasound, a schoolmate posted information about a website that let you pick your own ultrasound. How many weeks along are you? Twins or single? We've got a fake for that. And, as much as I wanted him to be wrong, or at least have contacted me privately about it, there it was. The exact ultrasound Karie had just sent me. I remember actually blushing. At my gullibility, my trust...my being used for someone's good laugh.
I confronted Josh. He said he did it so Karie wouldn't know she'd lost one of the twins. I confronted Karie. She didn't seem anywhere near as upset as she should have. It occurred to me, that she never did. I asked Josh for answers. My friend found no trace of Josh, Karie, Whisper, or the two young boys that had supposedly died. Nothing. No names, no death certificates, no doctor licenses for Josh and Karie, and no Whisper. Why me? Was it for shits and giggles? Josh emphasized no, it was not for entertainment. The last message was his/her reason for two years of deception. "My home life really sucks, and I thought that maybe, just maybe, I could make my own to escape into." Alrighty, then. Unfriend, and block all five liars. If there are five. It's very easy to create a profile on Facebook. I even made one for my dog! Strangely, I didn't feel grief, other than how much it hurt to supposedly lose the boys. I hardly felt anger. I just wanted nothing to do with whoever it was immediately. I've not dwelled on it at all. It was a learning experience. Trust is not free.
The second "shoulda known" was forgetting that, on Facebook, the whole internet for that matter, there are eyes everywhere. A simple post of what I know to be true, was challenged by a friend of someone I referred to in the post. It was frustrating, as I am a writer, and hate being censored, but, I understood where he was coming from, AND, I'd gotten in trouble for doing this before. I rarely use names in my posts, but the nature of this thread had made it easy to know who I was referring to. I was sick to my stomach upon reading the confrontation. I believe they believed what they were saying. The thing is...well, it's that judging thing again. Until you have both sides of a story, just don't. And he did not.
He challenged why I haven't had a job in 17 years. His view makes sense. "You sit and Facebook all day, there should be some kind of work you can do." That truly is a good question. I felt he needed a little info on "why". I tried to explain Fibromyalgia, which is about as productive as stapling a board to snow. If a person has it in their head that it is not real, you can't change it. Believe me, I've tried.
The side he didn't know was that I was battling, not just Fibro, which is taxing enough, but Chronic Fatigue Syndrome (we're working on getting that title changed because it trivializes the illness), Osteoarthritis, Chronic Depression, BiPolar, ADHD, and anxiety. And as far as sitting on Facebook all day, I change positions dozens of times throughout the day due to the pain and numbness. I get up more than a dozen times a day (and night) to use the bathroom. I am dizzy, and fall every now and then. At times I sit and stare at the screen, wondering what I was thinking of getting up to do. I did have a job, short-lived, due to the "Fibro Fog" that makes completing a task, or "putting 2 & 2 together" a real struggle. Those things didn't get talked about much back in "the day", because my being on Social Security Disability was an embarrassment. As was my handicapped placard.
Through it all, I was raising two kids. Although, I have learned that it has been said that I did not. I'm still raising one, and I am proud of how we have grown in recent years. I am proud of him in a way that makes my heart want to explode. I fear, sometimes, that his view of women will be based on my bad days. The days that I am in such pain my teeth or my hair hurts. He once said something similar to my being strong, and my heart soared. He has been taught well by the adults in his life, and in the past months I have seen it in the way he treats his girlfriend. But, I digress.
There are things I should have learned years ago about what to, and what state I am in when I post. Posting on a trying day, sometimes bitter day, will only bring hard feelings and confrontation. And now it comes back to the trust issue. Is there anyone in cyberspace that can really be trusted? As I've gotten older, I tell it like I see or feel it. Because, trust it or not, cyberspace is always there for me.
Wednesday, November 6, 2013
BATTLING MYSELF
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.
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.
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.
Thursday, November 15, 2012
Seven Months
Well, nearly seven months blog-free is unacceptable in the World Wide Blogging Community. Most are blogging daily plans, recipes, or miles run. Some blog on fashion, some on pets, some on music. My life is very simple, and although for the most part I like that, it does get humdrum, and downright lonely.
I still Facebook, and the young man I wrote of previously, lost his battle with Leukemia, June 2nd. How fortunate was I, to be asked by him if it was alright "to go". He didn't want to disappoint all of those cheer-leading "You can beat this, buddy!" and "You can do it!". I tearfully told him, that only he and God knew if it was time, and that the people cheering him on are doing it more for themselves, so they don't lose him, than for him. He would not be disappointing anyone.
My connection to him led to connections with the whole family, and their lives have been one massive trial after another. I've seen a mother lose her grip with reality, an Autistic brother be abandoned, abused, and die...three times. An older brother, a doctor, lose hope, then regain it time and again, and a bouncy, cheerful girlfriend turn into a bouncier fiancee' I chat with them every day, several times a day...even through the night in times of deep trouble. I've learned so much about Asperger's by chatting with the youngest, I wish it for everyone. It is a complex world, but so worth knowing. Perhaps because he doesn't have to actually see me, he has shared how things look, taste, smell, sound, and feel to him. For instance, he tastes colors. Of course he can't explain that to me, but knowing it is amazing for me to hear. How some days he can feel every hair on his head, and hear every minute sound around him and want to run away from it, but he can't so he yells. But, when he said "I love you." to me, I was overcome. These words do not come casually from an Autistic. In most cases, not at all.
Last month, my mother took a turn for the worse, and passed October 12th. The very next day, my little SUV slid off an oily slick road and rolled three times into a deep culvert. When word got to my "CA family", they were prepared to do anything for me, even offering to fly here to comfort me. The youngest, although compassion isn't exactly felt by him, told me over and over how sorry he was, and how much he loved me. This young man, just 12 years old has touched me very deeply in just seven months.
The past few days I have become especially emotional. I try very hard not to cry when my son is around, because it makes him angry. But, not angry like 'how dare you'. Frustrated, angry. Because he feels powerless. What does he do? Hug me? God forbid! He is nearly 16! So, in frustration, he retreats to his room, quite possibly hoping that all will be dry when he steps out. However, it seems that events of the past months have hit me like an old lady slugs a mugger. Tears come out of nowhere over things that don't deserve them. And, anger. I am not about anger. I am about peace and kind words, and taking a deep breath, and praying. But, a mis-delivered package, a letter from the school...sent me into a rage, followed by tears, then back to anger. My stomach is sick, my head hurts, I can't sleep (worse than usual). And I don't want to talk to anyone. Even my CA family. For the first time in four years, I turned off my phone last night. Is this normal? I am told, yes. But, it feels all wrong. Not me. Not any "me" I want to know, anyway.
How has my son handled losing eight loved ones in the past nearly-five years? Barely, that's how. And I give him huge props for every day that he doesn't punch, yet another, hole in the wall. Because that is where I am. Too much of a wuss to actually punch, but enough anger to want to.
I prayed for strength--for myself-- this afternoon, while I tried to grab a hold of some sleep. I haven't prayed for myself in so long, it felt selfish. But, I need God's touch, His soothing whispers, and His Love.
And I need "real time" hugs. Human interaction that doesn't include "{{ }}" signs around it. I am blessed to know I am loved. But, I am starving for the physical confirmation.
In closing:
I love you Mom. I wish I'd told you that so many, many years ago. I hope I told you enough while you were ill. I know you are still with me, in some way...even though saving my life in the accident was an awfully fast call of duty. Help to soothe me. Like you did when I was young, please rub my tummy to chase away the bad things. Thank you for shaping me into someone that is about peace and kinds words. Even though being so has landed me as the butt of jokes. I would rather be the butt of the joke, than the butt telling the joke. ;)
I still Facebook, and the young man I wrote of previously, lost his battle with Leukemia, June 2nd. How fortunate was I, to be asked by him if it was alright "to go". He didn't want to disappoint all of those cheer-leading "You can beat this, buddy!" and "You can do it!". I tearfully told him, that only he and God knew if it was time, and that the people cheering him on are doing it more for themselves, so they don't lose him, than for him. He would not be disappointing anyone.
My connection to him led to connections with the whole family, and their lives have been one massive trial after another. I've seen a mother lose her grip with reality, an Autistic brother be abandoned, abused, and die...three times. An older brother, a doctor, lose hope, then regain it time and again, and a bouncy, cheerful girlfriend turn into a bouncier fiancee' I chat with them every day, several times a day...even through the night in times of deep trouble. I've learned so much about Asperger's by chatting with the youngest, I wish it for everyone. It is a complex world, but so worth knowing. Perhaps because he doesn't have to actually see me, he has shared how things look, taste, smell, sound, and feel to him. For instance, he tastes colors. Of course he can't explain that to me, but knowing it is amazing for me to hear. How some days he can feel every hair on his head, and hear every minute sound around him and want to run away from it, but he can't so he yells. But, when he said "I love you." to me, I was overcome. These words do not come casually from an Autistic. In most cases, not at all.
Last month, my mother took a turn for the worse, and passed October 12th. The very next day, my little SUV slid off an oily slick road and rolled three times into a deep culvert. When word got to my "CA family", they were prepared to do anything for me, even offering to fly here to comfort me. The youngest, although compassion isn't exactly felt by him, told me over and over how sorry he was, and how much he loved me. This young man, just 12 years old has touched me very deeply in just seven months.
The past few days I have become especially emotional. I try very hard not to cry when my son is around, because it makes him angry. But, not angry like 'how dare you'. Frustrated, angry. Because he feels powerless. What does he do? Hug me? God forbid! He is nearly 16! So, in frustration, he retreats to his room, quite possibly hoping that all will be dry when he steps out. However, it seems that events of the past months have hit me like an old lady slugs a mugger. Tears come out of nowhere over things that don't deserve them. And, anger. I am not about anger. I am about peace and kind words, and taking a deep breath, and praying. But, a mis-delivered package, a letter from the school...sent me into a rage, followed by tears, then back to anger. My stomach is sick, my head hurts, I can't sleep (worse than usual). And I don't want to talk to anyone. Even my CA family. For the first time in four years, I turned off my phone last night. Is this normal? I am told, yes. But, it feels all wrong. Not me. Not any "me" I want to know, anyway.
How has my son handled losing eight loved ones in the past nearly-five years? Barely, that's how. And I give him huge props for every day that he doesn't punch, yet another, hole in the wall. Because that is where I am. Too much of a wuss to actually punch, but enough anger to want to.
I prayed for strength--for myself-- this afternoon, while I tried to grab a hold of some sleep. I haven't prayed for myself in so long, it felt selfish. But, I need God's touch, His soothing whispers, and His Love.
And I need "real time" hugs. Human interaction that doesn't include "{{ }}" signs around it. I am blessed to know I am loved. But, I am starving for the physical confirmation.
In closing:
I love you Mom. I wish I'd told you that so many, many years ago. I hope I told you enough while you were ill. I know you are still with me, in some way...even though saving my life in the accident was an awfully fast call of duty. Help to soothe me. Like you did when I was young, please rub my tummy to chase away the bad things. Thank you for shaping me into someone that is about peace and kinds words. Even though being so has landed me as the butt of jokes. I would rather be the butt of the joke, than the butt telling the joke. ;)
Monday, April 30, 2012
WHEN IT GETS REAL
Facebook has been many thing to me. A way to reconnect with old classmates, co-workers, and family. A place to escape to tiny farms, zoos and mystery crime scenes. Along with that came "friendships" with people from all over the world to help me complete the latest mission. After nearly four years, many, many of those people have become real live friends...just not readily available "live". But, that is the case with most classmates, and many family.
I joke about my "addiction" to Facebook, and that may be accurate....okay, that is accurate. But, with limited capabilities due to physical and mental issues, it makes the time go by, and I've come to depend on the fellowship, as my budget does not allow for actual socializing. And some of the most caring people are inside this little box, because they, too, are unable to work outside the home due to illness of their own or a loved one.
I've been able to keep up on breaking news, sad, mad and glad. The one that stands out the most is seeing the breaking story of bin Laden's demise. I was the first in my list of friends to see, and posted: "Ding dong, the bastard's dead! bin Laden has been killed!" And it was like fire to gasoline across Facebook! Of course I was sobbing like an idiot, but as I watched post after post declare victory over this dark, monstrous figure, I was in awe of the capabilities of today's communication.
And the causes from A - Z that people fight for are amazing. I've always considered myself pretty open minded, but thanks to some pages, some videos am right there in the fight. That is how my own page, Climb, came about.
The concept came from hundreds of other "feel good" pages offering inspiring quotes and pictures for those needing a pick-up on any given day. And some of those pages were funny, to boot! But, the "cause" that I adopted, was one I was seeing cross my page by local kids, struggling with self-image, and being bullied and called names by teachers. It had to stop. It HAS to stop! The number of kids committing suicide each day is staggering. And Climb was born.
It was a slow climb, though. I searched the web for great, positive words that would give a child in turmoil some peace. Slowly, the numbers grew, and then I started creating my own. My writing gift finally had a home. And it was appreciated. I now stand at nearly 700 "likes", and thousands of followers. And that's how I met Jakob.
I got a friend request a few weeks ago from a 13 year old boy, named Jakob. It threw me for a loop, because I'd been scammed online before on a dating site. How do I know this kid is really 13 and not some lonely 48 year old creep? I went to his page, which was--lucky for me--fully accessible. And there I saw his story. Still slightly skeptical, I confirmed the request, and within 1/2 hour he popped up to chat. I asked him how he found me, and he said my picture popped up and I looked like an "awesome person to talk to." Aaahh, we had a friend in common....so I asked him if he was friends with that friend, and he "haha'd", and said "yeah".
Jakob was adopted somewhere around ten years ago. Forgive me, I can't remember every detail. Shortly after the adoption of him, and his brothers, his father was killed, leaving his Mom with three young boys. Not long after, when Jake was 7-ish, he was diagnosed with leukemia. Since then life has been in and out of hospitals. And through all that his body was fighting, the kids were fighting him. They made fun of him for being bald (due to chemo), smaller, and behind in his studies due to the amount of time away from school. They pushed him, punched him, you name it they did it. And they knew that doing so could break one of his worn out bones...or kill him. There was no reasoning with the school. Jakob never fought back. Because he's been taught that to do so could hurt him.
I talk to Jake everyday. At his suggestion, I friended his mother. He said she needed someone to talk to, too. He was right. Jake is not doing very well. After all, his body has been fighting this disease for seven years. He told me a couple days ago, that on "bad days" he is unable to sit up, let alone get out of bed. He is even unable to roll over in his sleep. I could not imagine. Even on my worst days, I can make my way to sitting up. He is struggling with malnutrition because he is often sick, with fevers of 103 degrees, and can't keep anything down. But, in order to get his pain medication down, he must eat something. He is in so much pain, that some nights he does not sleep. He just keeps squirming to get comfortable. And by his side, trying to coax a cracker and some juice into him, is his mother.
Saturday night, his mother told me what he had told me in less eloquent words..."We all know he doesn't have much time." How, I asked her, does she get through each day knowing this? After seven years, she's had time to prepare, in a way. And, as she watches him get worse this past year, would rather he out of pain.
He's gotten worse just in the few weeks I've "known" him. Much weaker. Can't keep anything down. Last night, while talking to his Mom, he had awakened and gotten sick. Again. Another trip to the hospital may be in order. There has not been recent talk of doing the surgery on his brain for tumors found. He can't stay well (no virus/fever) long enough.
Facebook got real the day Jakob friended me. I'm honored to be someone he can talk to, in a world that has left him without buddies, other than his brothers. His spirit is amazing, and I thank him for sharing that with me. After telling me that "this thing is gonna kill me" (followed by a :( ), he proceeded with how glad he is to have been adopted my his Mom, and shared his life with her, and what a great momma she is. That she is.
Jakob turned 14 a couple of weeks ago. I wasn't sure if I should have wished him a blessed coming year, or to tell him to do the best he can, and look forward to the pain-free glory that will be his, sooner than seems fair.
I joke about my "addiction" to Facebook, and that may be accurate....okay, that is accurate. But, with limited capabilities due to physical and mental issues, it makes the time go by, and I've come to depend on the fellowship, as my budget does not allow for actual socializing. And some of the most caring people are inside this little box, because they, too, are unable to work outside the home due to illness of their own or a loved one.
I've been able to keep up on breaking news, sad, mad and glad. The one that stands out the most is seeing the breaking story of bin Laden's demise. I was the first in my list of friends to see, and posted: "Ding dong, the bastard's dead! bin Laden has been killed!" And it was like fire to gasoline across Facebook! Of course I was sobbing like an idiot, but as I watched post after post declare victory over this dark, monstrous figure, I was in awe of the capabilities of today's communication.
And the causes from A - Z that people fight for are amazing. I've always considered myself pretty open minded, but thanks to some pages, some videos am right there in the fight. That is how my own page, Climb, came about.
The concept came from hundreds of other "feel good" pages offering inspiring quotes and pictures for those needing a pick-up on any given day. And some of those pages were funny, to boot! But, the "cause" that I adopted, was one I was seeing cross my page by local kids, struggling with self-image, and being bullied and called names by teachers. It had to stop. It HAS to stop! The number of kids committing suicide each day is staggering. And Climb was born.
It was a slow climb, though. I searched the web for great, positive words that would give a child in turmoil some peace. Slowly, the numbers grew, and then I started creating my own. My writing gift finally had a home. And it was appreciated. I now stand at nearly 700 "likes", and thousands of followers. And that's how I met Jakob.
I got a friend request a few weeks ago from a 13 year old boy, named Jakob. It threw me for a loop, because I'd been scammed online before on a dating site. How do I know this kid is really 13 and not some lonely 48 year old creep? I went to his page, which was--lucky for me--fully accessible. And there I saw his story. Still slightly skeptical, I confirmed the request, and within 1/2 hour he popped up to chat. I asked him how he found me, and he said my picture popped up and I looked like an "awesome person to talk to." Aaahh, we had a friend in common....so I asked him if he was friends with that friend, and he "haha'd", and said "yeah".
Jakob was adopted somewhere around ten years ago. Forgive me, I can't remember every detail. Shortly after the adoption of him, and his brothers, his father was killed, leaving his Mom with three young boys. Not long after, when Jake was 7-ish, he was diagnosed with leukemia. Since then life has been in and out of hospitals. And through all that his body was fighting, the kids were fighting him. They made fun of him for being bald (due to chemo), smaller, and behind in his studies due to the amount of time away from school. They pushed him, punched him, you name it they did it. And they knew that doing so could break one of his worn out bones...or kill him. There was no reasoning with the school. Jakob never fought back. Because he's been taught that to do so could hurt him.
I talk to Jake everyday. At his suggestion, I friended his mother. He said she needed someone to talk to, too. He was right. Jake is not doing very well. After all, his body has been fighting this disease for seven years. He told me a couple days ago, that on "bad days" he is unable to sit up, let alone get out of bed. He is even unable to roll over in his sleep. I could not imagine. Even on my worst days, I can make my way to sitting up. He is struggling with malnutrition because he is often sick, with fevers of 103 degrees, and can't keep anything down. But, in order to get his pain medication down, he must eat something. He is in so much pain, that some nights he does not sleep. He just keeps squirming to get comfortable. And by his side, trying to coax a cracker and some juice into him, is his mother.
Saturday night, his mother told me what he had told me in less eloquent words..."We all know he doesn't have much time." How, I asked her, does she get through each day knowing this? After seven years, she's had time to prepare, in a way. And, as she watches him get worse this past year, would rather he out of pain.
He's gotten worse just in the few weeks I've "known" him. Much weaker. Can't keep anything down. Last night, while talking to his Mom, he had awakened and gotten sick. Again. Another trip to the hospital may be in order. There has not been recent talk of doing the surgery on his brain for tumors found. He can't stay well (no virus/fever) long enough.
Facebook got real the day Jakob friended me. I'm honored to be someone he can talk to, in a world that has left him without buddies, other than his brothers. His spirit is amazing, and I thank him for sharing that with me. After telling me that "this thing is gonna kill me" (followed by a :( ), he proceeded with how glad he is to have been adopted my his Mom, and shared his life with her, and what a great momma she is. That she is.
Jakob turned 14 a couple of weeks ago. I wasn't sure if I should have wished him a blessed coming year, or to tell him to do the best he can, and look forward to the pain-free glory that will be his, sooner than seems fair.
Tuesday, April 17, 2012
IT'S LIKE THAT
When I started this blog, it was going to be about what it was like to live with numerous ailments and raise a son as a single mom, among other things. I'm not sure I've done that. Today, I need someone to talk to. A real person. The kind of person that makes your skin feel warm because they hugged you. As much as I love my Facebook world, I can't feel the virtual hugs....though they are greatly, immensely appreciated!
Today I am grateful that it is not so windy and the sky is blue, but I observe it alone. This pains me and satisfies me at the same time. I am in a strange flux in my life. Glad to be my own person, but not so keen of the lack of companionship. I've vowed time and time again that I will never answer to anyone but myself again. But it would nice if someone smiled because I was here waiting for them. I'm alone, but not always lonely. But, today, it's like that. Very lonely. Very teary. And not able to let the tears out because my son hates it when I cry.
He doesn't know what to do with tears, how to help, so he gets angry. My Dad was the same way. So, I float. Treading months of built up tears. Mom always said I had nothing to be depressed about; others have it much worse. To this day I refuse to say that to anyone. Although, it's true so many people are worse off than I, my pain is MY pain to endure. So, it's like that. Tears to cry, not in public, because I don't deserve to be depressed. But today, I am sad.
Sad that I can't be telling this to someone while they hold me and even pretend to care. Sad that this past four years have been so hard on my son, and I can't make things all better for him. Being a teenager is hard enough without the things he's been forced to experience. And I'm sad that I can't scrape for enough money to buy him the things he wants. And that sometimes I do, at the expense of the gas or water bill. Then fret about how to pay them...yep, it's like that.
I've become too comfortable in my little apartment. After several years of not socializing due to money shortages, I now find myself dreading having to go anywhere. I'm not at agoraphobic yet, but it is serious enough that my son encourages me to get out. No, not so he can be home alone with the guys--some weekends he is with his Dad--but even at 15 he knows that no one should be so isolated. So...it's like that, too.
And, it's fearing that with my long laundry list of ailments, and depending on disability for income, no man on Earth will be interested enough--if I ever do leave the apartment---to get past that garbage and accept me for what I know I am. Funny, intelligent, kind and creative, with a bit of kooky thrown in. Cause it's not what they want to put up with, or even believe I suffer...cause it's been like that, too.
So, now it's like this. I dry my eyes, and smile when my son comes in the door with tales of fish caught in our local creek, while goofing off with his buddies. He has so many great friends. Good guys. And I'm proud of his decisions on who to hang out with. He's not perfect, and at times we don't talk for the entire day....but, he's a teenager...and.... they're like that.
Wednesday, March 14, 2012
I HAVE NO RIGHT TO FEEL SO AWFUL!
It's a beautiful day in Northwest Illinois today. It is March 14, and the temperature is to be 80 degrees! Sunshine, birds chirping, children outside playing. I have thanked God for such a fabulous day!
I feel miserable. Numb, or sad--I'm not sure. And I feel guilty as hell. How dare I feel this miserable on a record-breaking temperature day. Do I appreciate nothing?!?
The thing is, I do appreciated it all! How amazing is the world!? I just don't feel it. At all. I want to sleep. Not unusual because of the Fibro and the Chronic Fatigue, but this is different. There are things that need to get done. I look at them, hate them, then don't do them. Two floors need scrubbing, entertainment center needs dusting, legs need shaving. Not getting done. I do the laundry. Simply because my son's school has a dress code. And more guilt.
When my son is home I am attentive, joking, always making sure the depression mask is covered by the LOL mask. And at some point, that wears me down, and the very thing I was trying to hide from him spills out all over. He hates when I cry. I think he feels helpless, or that it's his fault. Of course, most of the time it is not.
I've been taking anti-depressants of various types for 26 years. In 2002, or so, I happened upon a psychopharmacologist, and together we tried various combinations to try to conquer my various ailments. It took about 8 years to find a winner for my depression/anxiety. And, as it turns out, it also helps with the Fibromyalgia pain. But night time was a bigger challenge. I have Bi-Polar II, and my main mania symptom is mega racing thoughts at nights. We found one med that worked beautifully, but as the dose increased, so did my weight. We decided to try different combinations that mimicked what the previous had done. After months and months, we ended up back at square one, but a lower dose, coupled with something else. So far, so good.
So what is going on?? I am alone, couple-wise. But, generally I enjoy my own company. I had surgery six weeks ago on my shoulder, and am finally at the "toss the sling" stage, and moving well. There is always pain in the healing, but why should that bother me? I live with pain every day. My budget is slowly becoming manageable, with a couple of exceptions. We're coming up on a dry stretch financially simply due to the space between pays, but I've been down that road before. Nothing is different that at any other time when I am feeling like a stoned hippie, wishing peace and goodness to all. Except, I'm not feeling the peace or the goodness. And to make me feel even more guilty, I am administrator of two support Facebook pages that encourage positive thinking. How hypocritical of me to post puppies and butterflies when I feel like dung and maggots? AAAaaaarrrgghh!!
The answer is, I guess, remember this is a phase. God is always with me. He has brought me through some horrible times, and I am the stronger for it. I will put the wet laundry into the dryer. I will create more support posts and give other struggling people a lift or a giggle. I may even vacuum.
After I take another nap.................. or a giggle. I may even vacuum.
After I take another nap........
I feel miserable. Numb, or sad--I'm not sure. And I feel guilty as hell. How dare I feel this miserable on a record-breaking temperature day. Do I appreciate nothing?!?
The thing is, I do appreciated it all! How amazing is the world!? I just don't feel it. At all. I want to sleep. Not unusual because of the Fibro and the Chronic Fatigue, but this is different. There are things that need to get done. I look at them, hate them, then don't do them. Two floors need scrubbing, entertainment center needs dusting, legs need shaving. Not getting done. I do the laundry. Simply because my son's school has a dress code. And more guilt.
When my son is home I am attentive, joking, always making sure the depression mask is covered by the LOL mask. And at some point, that wears me down, and the very thing I was trying to hide from him spills out all over. He hates when I cry. I think he feels helpless, or that it's his fault. Of course, most of the time it is not.
I've been taking anti-depressants of various types for 26 years. In 2002, or so, I happened upon a psychopharmacologist, and together we tried various combinations to try to conquer my various ailments. It took about 8 years to find a winner for my depression/anxiety. And, as it turns out, it also helps with the Fibromyalgia pain. But night time was a bigger challenge. I have Bi-Polar II, and my main mania symptom is mega racing thoughts at nights. We found one med that worked beautifully, but as the dose increased, so did my weight. We decided to try different combinations that mimicked what the previous had done. After months and months, we ended up back at square one, but a lower dose, coupled with something else. So far, so good.
So what is going on?? I am alone, couple-wise. But, generally I enjoy my own company. I had surgery six weeks ago on my shoulder, and am finally at the "toss the sling" stage, and moving well. There is always pain in the healing, but why should that bother me? I live with pain every day. My budget is slowly becoming manageable, with a couple of exceptions. We're coming up on a dry stretch financially simply due to the space between pays, but I've been down that road before. Nothing is different that at any other time when I am feeling like a stoned hippie, wishing peace and goodness to all. Except, I'm not feeling the peace or the goodness. And to make me feel even more guilty, I am administrator of two support Facebook pages that encourage positive thinking. How hypocritical of me to post puppies and butterflies when I feel like dung and maggots? AAAaaaarrrgghh!!
The answer is, I guess, remember this is a phase. God is always with me. He has brought me through some horrible times, and I am the stronger for it. I will put the wet laundry into the dryer. I will create more support posts and give other struggling people a lift or a giggle. I may even vacuum.
After I take another nap.................. or a giggle. I may even vacuum.
After I take another nap........
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