What Is the Big Deal About An Autism Diagnosis?

On January 3rd of this current year, I underwent what is called a neurophychological workup, which started out with an interview with a lady. I brought along several materials from an autism center, questionnaires that included questions asking me about past and present "symptoms" of an Autism Spectrum Disorder (ASD). One questionnaire included a checklist where Mom, my husband, and I circled the answers to the same questions in different colors of ink. I provided a copy for the neuropsychologist, who was filling in for another neuropsychologist I was expecting to see. That person popped his head in the room where I was being interviewed for just a few minutes and I mentioned my concerns. He said, "I see that you have been told many things and given many labels about yourself, like OCD, Asperger's Syndrome, and other psychiatric labels. We here are specialists in epilepsy and you have shared that you have a history of that. I don't think you are aware that epilepsy and side effects of medications to manage it can cause many problems that may make you seem to be OCD or have mental health issues. We are glad you are here and glad to help you find your answers." This person was nice enough and well-meaning, as well as friendly with my husband. However, I could tell from the start that he was biased in favor of epilepsy, his specialty and the field that he was best equipped to form professional opinions on. And he made these above statements BEFORE I began a full day of a battery of tests.

Just yesterday, after almost a month of waiting for my promised summary letter of the "results" of my January 3 appointment, the letter finally arrived in the mail. I opened it up later yesterday afternoon, and I was profoundly disappointed and angered at the "results" but because of the biases of the examiner, I was not surprised in the least of what his summary letter, just a page long, said. It reads. "It is noted that many of your previous psychiatric, behavioral, ans social difficulties may have in fact been related to your epilepsy, rather than to psychiatric disorders." Then came the blow that hurt most of all! "Of note, it is NOT (emphasis mine) believed that you suffer from an Autism Spectrum Disorder." Thus I went to a four hour round trip to undergo a workup, in large part not relevant to screening a person for different brain wiring and which was a bad referral. No diagnosis. No answers. No relief. No validation.

I'm not denying that epilepsy has a major impact on people's daily lives, like any other neurological condition, especially ones of its kind which carry stigma and are widely misunderstood. A number of the items I was tested on in my January 3 appointment were relevant to the side effects of long-term use of prescription medications that I had to take to control seizures (thank God, my current Depakote has fully controlled my seizures for about 16 years but at the cost of major side effects). Testing involved memory tests and other forms of cognitive function, which have been affected by my long-term medication treatment. My main problem with my "results," which include no diagnosis of any kind, is that I know that epilepsy cannot explain my lifetime of social, emotional, and behavioral challenges. Take my lifetime of OCD-like thinking, my repetitive behaviors and obsessive interests, and my insistence on routines. Can those be explained by epilepsy? I think not, especially as they were present early in my life! Take my lifetime of profound social disabilities, my dislike of socializing and making small talk, my inability to initiate or carry conversations, my inability to establish close friendships; these were present from early in my life! Can epilepsy explain those? I think not. I do not doubt that the effects of anti-epileptic meds, the trauma of seizures and stigma can cause emotional and social reactions which mimick some of what I listed above.

I got the that January 3, 2013 appointment by default, I believe and it ended up as an inappropiate ferral for what I was looking for last year. I was looking for an autism specialist who had training in autism and who would screem me for an ASD. Last year 2012,  I had been making many calls requesting a person to screen me for an ASD as an adult. I was given the name of a person, and it was only later that I realized that this person was a neuropsychologist and these professionals usually do not have autism training or expertise; their expertise lies in general brain and cognitive functions and dysfunctions. That does not include any psychiatric or mental health conditions and as ASDs are now placed in the mental health category, neuropsychologists do not specialize in ASDs. Even when I realized that and knew I got a bad referral, I chose to keep the January 3, 2013 appointment, just to rule out things and to go down every avenue. But last year, I did make an appointment with an autism specialist in that same city, who I should have been referred to from the start. I have an appointment with him later this year on October, 29. But due to personal circumstances which must be kept confidential, I may not be able to keep that appointment. But whatever happens, I will stop at nothing until I can access an appointment with a qualified, affordable autism specialist who diagnoses ASDs in adults.

I have, from the beginning, encountered family opposition to my pursuing an ASD diagnosis. When I shared that I was serious about this with family, I have been told things like, "Autism is just a word," "Autism is a label and you cannot tell anyone because people fear those with labels," "If you get a new label people will treat you even worse," "I believe you have autism; why do you need to see a doctor?", "Getting a new label will not do anything for you," and "It will not change your life, so what's the use?" I have faced resistance also from a couple of my doctors, who have told me, "You cannot have an ASD; you relate to people," or, "I do not believe in Asperger's Syndrome; it is a fad and overdiagnosed." I guess I can understand why so many people think those of us who seek "labels" for validation and to empower ourselves to self-advocate, are making "much ado about nothing" or are "sseking excuses for bad behavior" or "crutches" to limp through life. For I am sure some people have done just this, but I have read story after story by adults who testify that getting an official diagnosis of an ASD has provided them with tremendous relief from years, even decades of feelings of shame, failure, not fitting in, and not knowing who they are or "what is wrong with them." They come to see that they are not bad, slow, lazy, crazy, weird but have brains that are wired differently. They feel more confidence to self-advocate when people "don't get them." A new diagnosis does not magically change lives or undo the past, but it gives meaning to everything and closure so one can focus on the future.

This need for much better access to qualified, affordable autism specialists is only one reason that I have created an autism petition on Change.org. Autism services would not benefit only autistic people and their families. These services would create many new jobs, including entry-level jobs, for those outside the autism community. Most in the autism community, especially parents of autistic children, have been lamenting the need for quality, affordable, universal autism services. Many outside the autism community need job. Services also would help autistic people better themselves, which would make it easier for society to understand them and welcome them. So everyone who cares about these things would be wise to support efforts to gain affordable, quality and universal autism services. It is for that eason that I have created my Change.org petition, which can be found at my shortened link for the Change.org site: http://tiny.cc/mrsahw. I encourage all who read this to visit that link. If you have not signed, please visit here. If you've signed, thank you! Please visit and keep sharing. Or keep sharing this BlogSpot.

November Is Epilepsy Awareness Month

Lupus. Cancer. Multiple Sclerosis. Heart disease. Hyperglycemia. Hypoglycemia. Diabetes. Migraine Headaches. We talk openly about these conditions (and many others) and their symptoms and we should. And yet when it comes to epilepsy, this is different. How easy is it to use the words "epilepsy" and seizures"? But this condition affects millions of people and many families. And yet there is a definite stigma attached to it, so that many people with epilepsy will not disclose their condition when applying for higher education or jobs or when entering relationships especially with the opposite sex. The stigma actually goes back to the days of the Bible when the concept of neurological conditions like epilepsy did not exist; seizures were considered demon possession (yes, I do believe in actual demon possession with signs that mimic seizures but that is a separate topic). Though we know better now, the stigma still exists; institututionalized and social stigma continue. This is because when people experience seizures, especially the grand mal kind, their bodies are out of control, their minds in states of altered consciousness.

Yes, many seizures are not due to epilepsy. Take febrile seizures, for example, where children especially, experience these because their immature systems can't handle the infections that their bodies use fevers to fight. My daughter experienced these until the age of six which is said to be the normal age for outgrowing these sort of seizures.

Epilepsy exists on a spectrum, from those whose seizures occur daily to those whose seizures occur a few times a month or a year to those with full control. And seizures also are on a spectrum, from minor seizures to complex-partial or temporal lobe seizure to grand mal seizures. Epilepsy can be acquired at any age and can happen to anyone, especially if experiencing traumatic brain injury or an automobile accident or another such misfortune. There are a number of treatments to manage epilepsy especially medications. And epilepsy is more likely to occur in those with other neurological conditions, like autism or cerebral palsy, for example. There are many different types of seizures, from fleeting episodes of unconsciousness that last for seconds ("blackouts) to episodes of total, full-body unconsciousness as in grand mal seizues.

As a child, I was diagnosed with epilepsy. The seizures I experienced, over the years, have been sporadic for the most part. They are the grand mal kind. Thank God, I have been seizure-free for about 15 or 16 years. However, I have paid a high price to remain seizure-free. And I know many others with seizues have testified to suffering side effects. In my case, it was my long-term use of anti-convulsants that, in my opinion, caused me to deal with losses of both long term and especially short-term memory. I also have experienced slowed mental processing and reaction time. Because of these things I was strongly discouraged from getting a Driver's License. These kind of side effects have been more disabling to me than the seizure themselves, traumatic as they have been at the time. In the case of others, many also testify to experiencing side effects from cognitive losses to hair falling out to swollen gums. There are other side effects which I won't go into for the sake of space and length.
As for social stigma, this like the side effects of medication, has affected me more than than seizures themselves. Once, I applied for a volunteer position for a local pregnancy resource center for those dealing with crisis pregnancies. Sometime after my interview with the Director, I disclosed to her "And there is another thing; I have epilepsy." "I'm glad you told me that," she said. What? All I know was that a month or so later, I was dismissed as a volunteer. I noticed that when I was told about this, a small tape recorder was used without my consent. "We do not feel you are a good fit for working here and because of your living circumstances," was all I was told. Yet I wonder if my self-disclosure of epilepsy had anything to do with it.

Another example of stigma is when I returned to college as an adult; in the course of time I took a class in German. One day, in that class, I experienced a seizure, one of three I experienced that day. Afterward, I was encourages to drop this class. And, for the remainder of the class, I noticed that the manner of my classmates changes toward me (I never felt liked by that class instructor in the first place but this is beside the point) changes and they would ignore me forever thereafter. My neurologist, whom I like very much, has told me once, "I tell all my patients who have seizures not to have children." Yes, I know that most members of the epilepsy would look on me with envy because I have full seizure control, as of 16 years, with medication. I have never felt that I really "belonged" there either. Yet, I too have, and continue, to deal with the stigma and the side effects of long-term use of anti-epilepsy medications, which have interfered with my memory and moods and reaction time to my fertility. I'm thankful that my medication works for seizure control but I dislike its side effects which interfere somwhat with functioning and this is common in those who use these medications because of the way they work to stop seizures.

Many studies show that more people, in the US alone, die from epilepsy than from breast cancer. And yet there is far more breast cancer awareness and far more breast cancer resources. And when people reveal themselves to be breast cancer survivors, they tend to be treated with honor, deserved as this is! Years ago, I was in a setting where a person revealed, "I am a breast cancer survivor." Upon saying this, the speaker overwhelmed this person with words of support, tenderness and honor, saying something like, "we are so blessed and inspired that you are among us and that you have survived this killer! You are a walking miracle! We are all in this room honored that you are here sitting among us!" However, if this person had said that she had survived seizures cause by epilepsy, I daresay that she would have gotten this sort of response. I fear that the speaker, if this person is like many people, would have not known what to do with such a self-disclosure. It is because of this stigma of epilepsy that people do not, as a rule, disclose epilepsy in themselves or in loved ones. This stigma is lessening but it is still there. One HUGE reason this stigma must end is because research is still needed for those whose seizures cannot be controlled with medication, and money is needed to do this research.
Stigma undermines awareness and fundraising.

Chances are, if you don't know anyone with epilepsy, it may be that, because of its stigma, they have not disclosed it to you. This month, therefore, has been designated National Epilepsy Awareness Month with the focus to undo its stigma through education and awareness. There are some excellent links below where you can learn much more, because epilepsy, like cancer or heart disease, can happen to any of us or a loved one.

Thank God that a nonprofit has been set up and have a social networking site that exists just to undo the stigma of epilepsy through encouraging people with epilepsy and those with loved ones with this neurological condition, through talking about it. Thus, it is called the Talk About It! Foundation. The only way to get rid of stigma is to talk about it!

http://epilepsyfoundation.org/ This is the National Epilepsy Foundation website.

http://talkaboutit.org.ning.com/ This is the blogspot for The Talk About It Foundation, for epilepsy awareness.

https://www.facebook.com/#!/pages/talkaboutitfoundation/ This is the Facebook page for the Talk About It Foundation, for epilepsy awareness.

Survivors

Survivors. A title so many of us use to give meaning and validation to our lives.

Survivor. A person who has experienced adversity, loss, and/or obstacles and is overcoming them.

Survivor. A person who has suffered and has eternal scars, things that we can see and observe.

Survivor. A person who has internal scars that we cannot see or observe but which are very real.

Survivor. What have you been a survivor of?

You have/are suffering the fear, anxiety and trauma of a missing loved one, not knowing where that loved one is, what has happened to that loved one, or even if your loved one is alive or dead.

You have experienced being diagnosed with cancer and are dealing with the fear of what will happen and an uncertain future and with pain and even financial worries of health care.

You have suffered the devastation and loss of a loved one at the hands of a murderer and you have a new mission in life, finding justice for that loved one and keeping your loved one's memory alive.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation, even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had not made me as He has; I may still feel regret, shame, guilt, fear, anger, and loss.

But I am a survivor, and God is using my life experiences to make me what I am becoming today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving  and forgiving.

You have known the indignity and cruelty of being sold for someone else's greed into a trade where you have have had to do things that no one should ever be asked or made to do; we call it human trafficking.

You have, as a child, been violated and told to keep it a secret and not ruin reputations; even today, you may never have told anyone because you fear not being believed or when you did tell, you have not been helped; you are one of the estimate 65 million US survivors of child sexual abuse.

You became pregnant as a teen and since no one wanted you in that condition, you were forced to abort your baby and were not even allowed to grieve; even today you are haunted with shame and guilt which you dare not share because you know you will be condemned by most people who don't understand God's grace.

Whatever we were survivors of, we have known pain, loss, grief, maybe shame, devastation, even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and  become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had not made made me as He has; I may still feel regret, shame, guilt, fear, anger, and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can see or imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving  and forgiving.

You have suffered the terrifying experience of being abducted, heing held against your will, wondering when you will see those you know and love, being violated, being brainwashed and maybe even resigning yourself to your fate, believing you will never be rescued.

You married a person with anger issues who had learned to resolve conflicts with fists; your partner or spouse uses you as a whipping post, controlling your money, isolating you, even hitting you and threatening your life.

You have suffered the unspeakable grief of losing a loved one to suicide; everyone, including you, are suffering not only agonizing grief but also guilt at wondering if somehow you could have prevented it.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation, even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had not made me as He has.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can see or imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving and forgiving.

You grew up in a very dark place with illnesses of the mind where you thought and acted in ways that were a total mystery to yourself and those around you; you lived and still may remain your closet, in fear, guilt and shame and in terror that you will be found out and be stigmatized by all.

You grew up experiencing a condition called epilepsy and seizures; you have spent your life covering up your condition, even calling it and your seizures by other names and going to great lengths to hide it, including your medications and covering up the side effects.

You grew up being called stupid, spoiled, lazy, clumsy, and were placed in schools that stigmatized you for life; you grew up with shame and feelings of guilt and worthlessness, hopelessness and wondering if there would ever be a place for you; all this was because your autism spectrum disorder (ASD) was never properly diagnosed.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation and even helplessness and the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive, and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had made me different from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving and forgiving.

You grew up in a home where you were neglected, too much was expected of you, or you may even have been hit, beaten, threatened, and where you felt the helplessness and hopelessness of an abused child; even today you may still be haunted by your trauma and wonder if you can trust anyone.

You grew up with a parent (s) who loved you but whose substance abuse addiction overpowered their love; you were neglected and may have even seen or been abused; you felt anger, fear, shame, loss, and hatred for your parents.

You grew up in a home with a parent who used you for his or her sexual pleasure; you feel shame at what has happened to you, helplessness at preventing further abuse, and anger at your other parent for not coming to your rescue; even today, you stay in your closet because you fear that you would be judged or not be believed.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation and even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently and that God had made me different from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God has made me to be, whole, strong, caring, loving and forgiving.

You were in a terrible car crash and were left with permanent disabilities where your loss is as real and as painful to you as the loss of a loved one would be; you have lost a carrer you loved, so-called friends, a way of life, even your old identity.

You lived through a terrible disaster, man-made or narural and you suffered the shock, devastation and loss of a way of life, a loved one, even permanent physical injury; whatever you have lost, you can never forget.

You are a veteran, serving your country and you have done and seen things that no one but your fellow vererans can understand; you may be home but the war still may be going on here for you as you can never be the same person, emotionally or physically, that you were before you left.

Whatever we are survivors of, we have known pain, loss, grief, even shame, devastation and even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, presevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently and that God had made me differently from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and above and beyond what I can imagine.

I am a survivor and I'm free to become what God wants me to be, whole, strong, caring, loving and forgiving.

You grew up in poverty and want, with a good but uneducated mom who had to use government assistance and you and your family were among the "less fortunate" and seen as charity; often your only source of nutrition was the free lunch school program at your public school; you had to struggle to get an education and then a job but you did it.

You grew up with disabilities, visible or invisible, where what is easy and taken for granted by everyone else has always been a struggle for you; you may wonder why you have been put on this Earth, why God has made you as He has; you want nothing more than to be accepted for who you are and to be allowed to be independent, productive and valued.

You grew up as the target of peers who plugged into your vulnerabilities and who bullied you extensively; the adults in your life did not handle your situation well and you felt that you were not heard, that you did not have a voice and that you did not count; even today, you may have a tough time trusting people and their motives.

Whatever we are survivors of, we have known pain, loss, grief, maybe shame, devastation and even helplessness and the loss of the will to hope or live.

But we are not victims. We are survivors. By God's grace we can heal, persevere, forgive and become better, stronger people, using our experiences for the help of others.

I may wish that my life experiences had been different, that I had done things differently or that God had made me differently from what He has; I may still feel regret, shame, guilt, fear, anger and loss.

But I am a survivor and God is using my life experiences to make me what I am today; He has a purpose for my life beyond what I may see and beyond what I can imagine.

Survivor. What if our lives had been easy, pleasant and fun and only good, wonderful, exciting things happened to us with nothing to survive?

Survivor. If I had unscarred by life, I would never be able to develop the virtues of compassion, wisdom, patience, courage, forgiveness and perseverence.

Survivor. I may have been led to believe that I am doomed to lasting failure, and to repeat the mistakes of the past.

But I am not a victim. I am a survivor and I'm free to break the cycle of abuse, addiction, failure and other realities that may have been my life.

I am a survivor; God's grace has brought me through, caused me to over come and to continue to overcome until healing is complete.

Depression

         "Have faith in God and seek Him and you won't fall into depression."         "Get over it."
         "Just look at the glass being half-full instead of half-empty."
         "Think positive not negative thoughts."
         "Stop feeling sorry for yourself; others have problems."
         "What do you have to be depressed about: look at the GOOD THINGS you enjoy...."
         "It's not a big deal; blow it off."
         "Cheer up; relax and keep a cheerful attitude."
         "Be thankful for what you have and you'll feel better."
         "Shame on you for being depressed; God will give you something to be REALLY depressed about if you carry on like you are."
          "Look at....; this person is facing worse problems than you and this person is not depressed."
          "Mind over matter. Tell yourself you're not depressed and good feelings will follow."
          "Count all your blessings and you'll see that you have no reason to feel depressed."
          "You are not the only person in the world with problems; things are tough all around for most people. Someone is always worse off than you."
           "Think about the starving, the terminally ill, the disabled, the homeless, and anyone else facing worse problems than you; get your eyes off yourself and focus on others' needs."
           "Depressed? Get off your duff and help others."
           "Chin up. Others don't want to hear about your problems because they have their own."
           "Life sucks. Chalk it up and move on."
           "He is a scumbag anyway; he is not worth your tears."
           "Snap out of it."
           "It isn't that bad; stop thinking about it and let it it go."
           "Have faith in God and pray; it is not God's will for His people to live in depression."
           "Depression is an attack of the devil; rebuke this depression demon and it will leave you."
           "Christians should always be happy because God has blessed us. What is wrong with you?"
           These are just examples of the many things people typically say to those who are dealing with depression. I have heard them said over and over to depressed people in my life. Though I try not to say things like this that minimize people's depression, I'm sure I have. Many of thse things are said to depressed people because few people want to deal with depressed people and their feelings and want to see the depression stop. Many, even most, of these things, are said to depressed people in order to relieve the speaker's discomfort with seeing that another is depressed. And often, those who say these things simply don't want to hear how bad someone else is feeling. Yes, there is some truth in many of these sayings. We should help and serve others. We should thank God for blessing us with what He has. We sould trust Him with our problems and pray. We should have empathy for others both near and far and care for the less fortunate to the best of our ability. Yes, we should do these things.
          When I write about depression I'm not talking about the common "blues" that all of us experience when our moods go awry or we are having a bad day. Nor am I talking about grief, the "normal" reaction to loss and which lessens with time. I'm talking about depression experienced on a level that interferes with the depressed person's daily and basic functioning, such as relating to one's family and friends, the ability to focus on what one needs to do, the will to attend to one's responsibilities and even the will to live. I'm writing about the depression where a person loses interest in things formerly and normally loved and enjoyed, including family and friends, eating, hobbies, grooming,  and other normal pursuits. This kind of depression can't be wished away, ignored and people can't be admonished to behave their way out of this.
          I know this by experience. Depression isn't just caused by stressful outside circumstances but by things like chemical inbalances, medicine side effects, hormones, one's personality type and more. And as a person of faith, I do believe in a personal devil and that he can attack people by bringing spells of depression on them. Since early childhood, since being diagnosed with epilepsy, I have taken anti-convulsants. These anticonvulsants that are meant to control seizures carry major side effects altering one's mental faculties, including memory, focus, processing speed, sex drive, reflexes, moods and more. Most thankful that Depakote that I take has kept me seizure-free for over 12 years, I continue to experience all the side effects mentioned, more or less. This med has solved one medical problem while creating others, including depression spells. Yes, I know (and am reminded by family) that my side effects, miserable as they are, are the lesser of two evils, which is uncontrolled seizures. Yet long-term use of anti-convulsants have given me, in effect, a chemical lobotomy (as opposed to the surgical ones that used to be done to people). Especially since I'm a mom, I have been told, when I reveal or express depression, "You can't be depressed. Remember, you have a daughter and you're supposed to put her first," "If being depressed is causing you to neglect your daughter, get over it," and "At least you're not homeless, etc., etc.." I guess this is the natural response to depression because
we want to feel good and we want others to feel good; this way life will be easier for us all, yes?
          Stressful circumstances commonly serve as triggers even if depression has biological causes. This is know very well. Most of my depression spells are triggered by stressful events, immediately following such events. Also, depression is often caused by issues in life that one needs to address, especially if one feels powerless to do so because of finances or other people. Currently, I'm experiencing a spell of depression which has been triggered by a major falling-out I have had with a person online, and by my distress over my lack of access to getting an autism spectrum evaluation which could provide definitive answers as to why my life has taken the twists and turns it has.
          Yesterday, when I was scrolling through my homepage to see what was going on, I saw a post by a Facebook user who was despondent and revealed that he felt worthless, hurting and a loser, because a girlfriend had rejected him. A user posted in the comment section underneath his status, "Chin up." Another Facebook user said, "Stop feeling sorry for yourself; other people have problems also." I posted a more empathic response. These kinds of responses to people (mostly women) who share their depressed feelings on Facebook, is empathy, caring, compassion and "cyber-hugs." In most of these cases, the sharers have been women and their supporters have also usually been women. Yes, I think that some of the depressed posts have been overdone and come off as attention-getting rather than genuine. A number of  people on my page seem to use social networking solely to vent their bad feelings, whether stemming from bad circumstances or mental health conditions, and to seek support from others.
          My research and experience tell me that people on the autism spectrum, especially teens and adults, get depressed often. And no wonder. For autism spectrum disorders, by their very nature, make people vulnerable to misunderstanding and being misunderstood. When you constantly suffer from difficult human relationships because people don't "get" you and you don't "get" them and they don't accept you as a differently-wired person but equally valuable, depression is almost unavoidable. Depression is probably experienced by many others who have other invisible disabilities for many of the same reasons.
          The stigma of depression has lessened, thanks to brave, high-profile people who have "gone public" with their depression experiences. But the stigma remains and it is worst religious circles where the expectation is that faith will make and keep us always happy, or should. In the Christian Church, it has traditionally been seen as as moral weakness, a sign of weak faith, or even a sin. Depression may not be a sin or a moral weakness but how we react to it and handle it can lead to doing bad things. And depressed people who would benefit from medicine or other treatments should, if possible, do what they can to seek medical treatment (yes I know that anti-depressants can have very bad side effects and are not for many people).
          "Jesus wept," the Bible tells us. "He was a man of sorrows and acquainted with grief." Do I need to add anything to that?
         
                 

About Valentine's Day and Love

          The color red. Chocolate candy. Flowers. Hearts. Greeting cards. High expectations. Lots of big-time profits for many businesses selling these products. Dentists anticipating tooth damage from the effects of consumption of Valentine's Day sweets. I know that many people celebrate this day with gusto. Others do not. "This is the day for lovers." Today, I have been seeing one post after another of red images and sayings. And how do we so often show our love on this particular day? Buying sweets! We are in a mode where our traditions for one day mean additional business for dentists everywhere as well as florists and retail outlets.
          But do we know the historical person who is behind this holiday? Do we know what this person was really all about? You may have heard about the historical missionary, St. Valentine, who served under severe religious persecution and was killed for his Christian faith. He served people in need. Indeed, he loved and showed it by the things he did. But what kind of love do we typically focus on during Valentine's Day?
          The love that we focus on during this particular day is romantic love or "eros." Love between two people who are sexually attracted to each other and especially if they are married. Many of us celebrate our friends on this day. Friendship love is called "Phileos." In many households, parents see this day as being "for the children" and buy our candy and tokens for our children. But the love that St. Valentine lived as he served as a missionary is not any of these kinds of love. It is an unselfish, sacrificial, unconditional love known as "agape" love. This is the kind of love that moved God to send His Son to Earth to give His life for us humans, to reconcile us to Him. It is the love that moved Jesus to enter Earth, become the perfect God-Man, live a sinless life and die a horrific death in our place, and to rise again. God, therefore, is the Source of this love and also the Source of all other loves. Therefore, Valentine's Day is ultimately about God. St. Valentine, who was the historical figure behind this day, was only able to live and give this kind of unselfish, sacrificial love because he had a relationship with God through Christ and he drew his strength from God to love this way. Now I'm very sure that St. Valentine knew the other loves, for without these other loves we cannot advance to being able to trust God and love in this Godly way.
          There is nothing wrong with these other, human loves. Parent/child love or "storge" love, is essential to any child's development and well-being and preferably if the love comes from both mom and dad. Sudies show that abuse and neglect, if bad enough and sustained enough, affect and alter the actual structure of a person's brain. And without the comfort, support and love of friends, real friends, loneliness often has devastating effects. I can tell you that from experience! So many suicides are motivated by loneliness, the awful feeling that one is really alone and not among friends, real friends. Romantic love? This is one love that is not essential to life for all people, but without it, we would not be motivated to mate, marry and bear children! We would have been extinct long ago! And this was, after all, God's idea and His way to reproduce and keep the human race going.
          But there is a difference between these love and agape love, God's love. These other loves can fail or end. And they often do. This is the root of so many of our social ills. the failure to love well. Friendships, even real, deep friendships, can and do fail, sour or for some reason don't last. Years ago, I saw on a TV court case a lawsuit between two "ex-friends" who had been very close friends for decades, until one of the friends borrowed money and did not pay it back. Money and gossip often ruin even the best of friendships and other close or family relationships. I have seen this firsthand and it is sad. Monetary inheritances and squabbles over them often ruin family relationships. As we all know, romantic love fails over and over, even ending in betrayal and outright emnity, even murder. I don't think I need to go into the many high-profile marriages that have ended in murder. So many of our popular songs lament the sad fact that romantic love so often fails. An estimated 50 percent of all marriages are said to end in divorce. Parent/child love may be the most enduring love and oftten lasts through great odds. But it, too, often fails when lacks the resources or the maturity for the role or breaks down when the parent or the child does things that are detestable or even criminal.
          But God's love is the love that never ends and never fails. It is first a commitment to do good for another person whatever the person's merit, response, or one's feelings. This love is a choice. It is not often sung about in popular music, which focuses, mostly, on romantic love. If you listen to so many of the words, you get the message that lovemaking is the ultimate form of love and that we can't live without it. There is nothing wrong with romantic love and the Bible even has a small Book in the Old Testament that is devoted to it, the Song of Solomon. This book celebrates the love between a bride and a groom. In the rest of the Bible, however, the the love the Bible talks about is agape love, God's love for us and the love that He wants us to practice.
          There is another historical fact about St. Valentine. Experts on his life tell us that he was the "patron saint" of epilepsy, among other things. He is said to have served the sick and those with medical conditions. During ancient times, the diagnosis of epilepsy didn't exist and there was no concept of neurological conditions but there was much awareness and fear about demon possession. Therefore, it was easy to confuse seizures with the demonic activity. (And yes, I do believe in a personal Devil and in demons). It is unclear why St. Valentine took such an interest in epilepsy and it has been speculated on that he had epilepsy himself. Yes, other missionaries also served people with epilepsy but St. Valentine seemed to have outdone them in that area. Today, we have far more scientific knowledge and resources to deal with epilepsy and a host of other medical conditions and diseases. Therefore, like St. Valentine, we need to all do our part to add our voices to the effort to increase awareness about misunderstood and stigmatized medical conditions like epilepsy.
          When I was growing up, I remember that Valentine's Day was a day when my popular peers got many Valentine's Day cards and other tokens and others of us didn't get nearly as many. I recall one instance where, in a middle school setting, some popular girls got many Valentine Day cars and tokens and made no secret of this. I glanced at it all and sighed, "I wonder how many Valentines I will get." A girl said, "Lisa! You ARE greedy!" Should Valentine's Day, or any other time which celebrates relationships, be about competition and who gets the most of things? I'm glad that, at least in the case of my daughter's school setting more recently, celebrating Valentine's Day has been handled differently in her elementary school setting. Things have been set up so that each child receives about the same amount of Valentine's Day cars and tokens; no one is left out or excluded. And isn't this what love is all about, including everyone?
          There is nothing wrong with celebrating Valentine's Day (or any other holiday or special day) in the traditional, expected way for that particular day. There is also nothing wrong with choosing not to celebrate this day  (or other special days) in the conventional and traditional way. And I wish each and every one of you a Happy Valentine's Day. But do not forget that the real Source of love is God, not Cupid.

http://www.stvalentines.net
This is a fun website with basic information about St. Valentine and fun acts about how this day is celebrated in many other countries. After you access this site, you need to click "St. Valentines. Net" to get into this website.
         
      

Why We Need To Talk About Epilepsy

          Yes I am seeing that too often we are concerned with only those issues that we see as directly or immediately impacting our lives or the lives of our loved ones. I'm thinking now of my being part of the Cause on Facebook that is called "Turn Facebook Purple For Epilepsy Awareness." Of course, turning a site a certain color is not going to provide any practical help for the problem of any social ill or need, epilepsy included. This issue here is awareness that is meant to spur people into action toward a cure for the forms of epilepsy that are severe and to get us to talk about a medical condition that, for anyone with this diagnosis, this medical condition carries an ongoing social stigma. This stigma is reality also for those whose seizures are totally controlled with medication. And no one wants to talk about it. Epilepsy is one of those things, like autism, mental illness, child sexual abuse, rape and other issues with codes of silence, that we "just don't speak about" or speak about only in hushed tones. This day, I have sent out 350 invitations to people in my network, hoping that many of them will join this epilepsy awareness cause and show their support. I have posted on my page about this cause over and over; I have also shared the Causes bulletin which is a brief note about why we need Facebook to be turned purple. So far, as I write this post, only two or three people have joined this cause out of literally hundreds of people, many whom I know have been online. The Causes note has not had one view, despite my shares of it. This is sad but it only illustrates the social stigma of epilepsy and that those of us who are concerned about it still have work to do.
          Epilepsy affects about 3 million people in the US alone, which experts tells us is about the same incidence as breast cancer. And epilepsy can be as life-threatening, especially if it is undiagnosed and untreated. Breast cancer awareness, however, is far greater and with far more funding and resources, than epilepsy awareness. Breast cancer causes are always popular, breast cancer gets good media coverage, is the subject of high-profile fund-raising events and it seems that it is "cool" to support breast cancer. No one is self-conscious or ashamed to talk about it, either. This kind of awareness and resources are solid for many other diseases and conditions and few of them carry epilepsy's social stigma. But of the 3 million in the US who are diagnosed with epilepsy, according to health experts, many of these are children and teenagers. Epilepsy affects more people than many other medical conditions combined, health experts say. Epilepsy is often caused by head trauma, which is caused by accidents, concussions and therefore any one of us can find ourselves in a situation where we will end up diagnosed with this condition. What do I hope to see more of? I would like to see more advocates and good-hearted people, people who affirm that they care about issues that affect all of us, realize that epilepsy is also one of these important and relatable issues. If you hear much more from survivors of breast cancer, multiple sclerosis, lupus, and even heart disease, among other condition, guess what? It is because these other conditions do not have a code of silence that hush up their victims/survivors. It is NOT because they affect more people than epilepsy.
          Just as stereotypes of many conditions abound that have some truth but not much, so the same holds true about epilepsy. I fear the stereotype of the typical epilepsy survivor that is floating around is that of a person who suffers seizures on a regular basis and that these seizure are the grand mal, full-bodied type. Not so. Epilepsy, like everything else, happens along a spectrum, from those whose seizures are fully controlled with medication and/or other therapy, to those whose seizures remain uncontrolled despite medication and/or other therapy. And seizures also happen along a spectrum, from "black outs" which mean lapses of consciousness that lasts for seconds, to grand mal, full-bodied seizures. Epilepsy and experiencing seizures only take up small parts of most people's lives, unless the person has severe, uncontrolled epilepsy. But there are enough of these cases that much more research needs to be done for better ways to contol such forms of epilepsy.
          I have already shared my own epilepsy story in my first post about epilepsy last year but I will review it for those who have missed it. I know that many in the epilepsy may not embrace me as "one of their own" because, through I was diagnosed with epilepsy as a child, I have been seizure-free for the past 16 or so years. This is because of my long-term use of anti-convulsants; like many with epilepsy, seizure control comes at the price of often nasty side effects, everything from hair loss, swollen gums, cognitive losses to increased risks of osteoporosis and even liver failure. Side-effects of anti-convulsants often seem almost worse than seizures themselves! Yes, I'm aware of the ever-present possibility of a breakthrough seizure, which is possible for any one with epilepsy. When I was growing up and did experience seizues, they were the grand mal, full-bodied type without auras. When I experienced my last seizures, they were public. I experienced one of them on the school campus where I was attending college as an adults, have returned to school. On that particular day, I experienced another seizure when I was with my family and dining out at a local restaurant. The third seizure occurred when I was in my neurologist's office. Because the stigma of epilepsy was even worse in those days, no one talked about it. Therefore, I thought I was the only one with this medical condition. And because I was also diagnosed with Marfan's Syndrome, a condition that affects the connective tissues, eyes and heart, I have had, to this day, restrict my daily physical activities. This is not unique for those with potentially life-threatening medical conditions.
          The social stigma of epilepsy may not be quite as bad as it was when I was growing up and certainly before that, but it remains. To illustrate this stigma, when I did return to the class where I had one of my last seizures, I was encouraged to drop the class. I found that I was ignored and not treated the same. I know why, that people no longer felt comfortable with me and what used to be an invisible condition had become very visible. As signs of this same stigma, each time I have volunteered to disclose my epilepsy to nonprofits, including in applications when asked about disabilities, my self-disclosure has backfired. Each time, I have been denied the opportunity to serve as a volunteer. Apparently, though I have accompanied my epilepsy self-disclosure with the assurance that my seizures were fully controlled, the nonprofits seemed to fear the condition and me and would have nothing to do with me again. These nonprofits would always provide other, nebulous reasons as to why my applications were refused, but these reasons came across to me as excuses for the real reason: prejudice of diability and difference, especially invisible ones. In my past, when a young man with uncontrolled seizures was talking with a friend, this friend, wanting to know how things were going with this young man, leaned forward and said, in a hushed tone, "your condition, your------------------,"
as though epilepsy were unspeakable and deeply shameful. And also, I recall a segment about a woman years ago, which was aired on the "Mystery Diagnosis" series. This woman experienced seizures that were uncontrolled but accompanied with auras so she could plan somewhat. She discussed the lengths she would go to to hide her seizures, including heading to bathroon stalls to cover them up, so her friends and associates would not know. Even today, people with epilepsy are generally discouraged from disclosing their epilepsy, especially on application unless directly asked about diabilities. And the very facts that I fear filling out another application where honsty will dictate an epilepsy self-disclosure and are finding it challenging to get strong, solid support for this "Turn Facebook Purple For Epilepsy Awareness" cause illustrate the continuing stigma of this medical condition. Yet in the Bible, when God visited the Earth in the Person of His Son Jesus, people with epilepsy would come to Him and be cured of their medical condition; he did not shrink from them.
          Yes, there is no way to get past it or around it. I have epilepsy. I am also a daughter, a mother, a sister, a niece, a friend and a Christian, meaning that I have a relationship with God through Christ. Epilepsy is not my identity. It is just a tiny part of my life of which I am reminded each time I take my anti-convulsant and experience its side effects. Anyone else with epilepsy can say the same about themselves and their lives. They are first people and then they have epilepsy.
          Why add your voice to this effort to spread epilepsy awareness or in other ways show your support? It is because you may know someone, even someone among your friends or associates or others in your life, who may have epilepsy but who may "stay in the closet" because of their fear of social stigma.

http://epilepsyfoundation.org/
This is the website for the trusted nonprofit that advocates for people with epilepsy in a variety of ways; you can educate yourself more there and see about how you can help.

http://www.talkaboutit.org/
This is a website for a nonprofit that is dedicated to eliminating the social stigma of epilepsy through awareness in many different forms and which has been founded by an actor.

http://talkaboutitorg.ning.com/
This is a social networking site for people with epilepsy and for anyone who wants to support them.

http://www.patientslikeme.com/
This is a social networking site and forum for people with medical conditions, including epilepsy.
         

Will You Accept Me?

          Acceptance. This is a gift where one person extends to another unconditional favor of the other who he or she is, not for what he or she is. It means valuing another, first and foremost, because he is a human being and not because of what he can do for you. It means that another person can safely disclose his or her personal or private thoughts and emotions and will not be judged or rejected. Acceptance is not to be confused with condoning the inappropriate, wrong or even criminal things another has done in the past or may be doing now, but does mean that even if you have to show "tough love" to another, that you will not reject him. This sounds like it is simple enough, so why have a blog about this? Well, if we accepted each other as people created equal, why is there racism, prejudice, discrimination, and stigma? Why are there so many suicides, divorces, job-hopping, church-hopping, friend-hopping, and why is self-disclosure of many devalued personal qualities still so risky? So maybe this blog on acceptance remains relevant.
          We all assume every child's right to be accepted by both his or her parents. This is why society has set up so many projects, organizations, resources for the purpose of preventing and ending child abuse. When children grow up without being accepted by one or both parents, it will affect him for life. Unless he or she is fortunate enough to possess unusual gifts or talents and opportunities to develop them, along with finding caring adults who take an interest in them, he or she will grow up with lots of baggage, including major trust issues, fears and anxiety and/or anger, self-hatred, even rage and bitterness. When children are not accepted by the adults in their life, we all pay for it later, when we find ourselves at risk because of bullies (of all ages), predators, pedophiles and other kind of criminals.
           It is rejection that motivates a number of shootings in schools, workplaces, the home and other settings. Don't get me wrong: I'm certainly not condoning the experience of rejections as any excuse to use killing self or others to "solve" one's problems. Rejection only provides an explanation for many crimes, violent and nonviolent. It explains lots of bullying that is done, especially in schools, workplaces and the home. It is commonly said that when people feel accepted and valued ffor who they are, they do not need to bully. The point here is that feeling rejected is a potent and demoralizing experience that fuels depression, anger, even bitterness and rage, anxiety, fear, trust issues, and more.
Feelings like these can and do motivate desperate acts that one otherwise would not do, unless one is able to find the resources and support to work through rejection and his baggage.
          I'll always recall that, when I was much younger, I saw a program about the heinous criminal, Charles Manson, that at the end of this program, his reaction to receiving his life sentence was "This is my home." Manson grew up rejected by his parents and was known as "No Name Maddox."
          Acceptance is growing toward the growing number of immigrants in our free societies, thanks in part to churches and nonprofits and other projects which have, and continue to, work hard and dedicate their efforts to re-settle these immigrants and help them assimilate into our culture. These immigrants often are able to use their educational backgrounds to set up their own businesses and achieve success. In face, the very fact of their not only acceptance but often even greater success than any "natives" causes a frequent undercurrent of resentment toward "foreigners" who are often seen as taking resources away from "our own" who are need similar help. I have seen instances where churches have funded placement for the children of immigrants into their church-based schools, a thing that they don't normally do for other children.With the economy being as it is, immigrant reform is a subject of debate. But it is possible to accept and value immigrants and anyone who is foreign-born while supporting measures that crack down on immigration for economic reasons.
After all, our God has created each and every one of us. But we need to continue to help resettle immigrants and help them fit into society.
          What often is overlooked, even in churches who claim to represent a God Who welcomes ALL people in Christ, is that there are many people "among our own" who often struggle with feelings of being strangers in a strange land because they face prejudice, stigmas, ignorance, and lack of accommodations because they have qualities not valued by society. Traditionally, people of racial minority groups, even "our own," have faced much prejudice and discrimination, but thanks to lots of political activism, legislation, courageous advocacy, and awareness, much of this has decreased. Racism is so commonly discussed that I do not feel the need to address it here, only to assure you that it remains alive and well, with an undercurrent of it apparent in how many of us treat the current US President. For he has been the object of many facial slurs, many not fit to be printed. Why have people been so quick to proceed with witch-hunts even about his birth certificate, among other things? Could part of all this be an unconscious racism and jealousy that a man of color hold the highest office in the free world? In fact, it is so bad that on Facebook there is a cause devoted to end the dishonor shown to the President.
          People with various forms of mental illnesses find that acceptance is not a thing to be taken for granted and so it is acceptance that they long for, before anything. There has been a long-time stigma surrounding mental illnesses, though the stigma of certain mental illnesses, like depression (the clinical variety and bipolar disorder) is lessening because of much advocacy and awareness about them. But because of the true crime cases where the suspects and/or the victimizers are often people with suspected or officially diagnosed mental illnesses, the stigma continues and is aggravated every time such a case makes the media headlines. There is a widepread misconception that mental illnesses make a person a threat to society, but most often, the person is a danger to himself because of suicide rather than to others. A diagnosis of most mental illnesses or a history of mental health issues, including receiving psychiatric services or pychiattric residential care, remain risky things to disclose, especially when applying for goods or services like insurance or employment or in romantic relationships. So people will go to great lengths to "remain in the closet" about their mental health issues.
          People with epilepsy and a number of other neurological or medical conditions that remain stigmas, can't take accetance for granted. Many will go to great lengths to cover up their conditions, knowing that self-disclosure of them is risky and exposes them to rejection, prejudice and discrimination. For those with epilepsy, self-disclosure is as risky as disclosing most mental illnesses and often it slams the door shut on many opportunities, including driving, employment and insurance.
When accetance is found, it is so rare that it is treasured. There is a nonprofit, The Talk About It! Foundation, that exists just to undo the stigma of this medical condition.
          People with autism spectrum disorders (ASD's) and other learning or behavioral disorders remain so stigmatized that many go to great lengths to "pass as normal" and over up their differences and challengers, since self-disclosure is risky. Yes, there are a few fortunate peope with ASD's and other, related, differences, who have achieved success, even celebrity status. But for every intance of this, there remain many, many more of these, especially with ASD's, who are unemployed or work in jobs that don't use their abilities or languish in jail or prison, because ignorance of their disabilities has led to injustice. Yes, there are now many more resources and organizations that through advocacy, bring awareness to autism and to other, related learning and behavioral issues. But much more needs to be done. So, for many of these people accetance remains a treasured gift never to be taken for granted.
          Acceptance is essential not only for emotional health but even physical survival, as without it one will have a much harder time finding employment, getting a Driver's License, housing, among other things. If the stigmatized person is fortunate enough to be able to depend on family or friends, his or her quality of life will still be much diminished. The surefire way of working toward acceptance for all is to reduce stigma and this can only be done through breaking codes of silence, as has and is being done concerning sexual crimes, addictions and other things that used to be among the "unmentionable." We need to "talk about it"!
          As for my own experience with this, I have found self-disclosure, especially recently, to be unsuccessful. Growing up with with a history of learning and behavioral issues, epilepsy, and a history of placement in stigmatizing special school and a few residential settings, I have found that disclosing these as well as my present challenges is risky and has slammed the door on opportunities to give and receive support. The words autism, epilepsy, emotional problems, and brain injury, are words that scare people and fuel their prejudices or stereotypes. But non-disclosure and "staying in the closet" will only ensure that these things will remain stigmas for future generations.
          The Bible is clear, that God is the One Who has created each and every one of us and this alone is reason enought to accept each other.

Stigma

          There are some things we just don't talk about, sometimes not even with our own families. When these things are mentioned, we tend to get uncomfortable, cringe, sidestep these issues by calling them other names or changing the subject or skirting these issues altogether. It is called stigma and is defined as as possessing a personal trait that society doesn't value, discredits or even despises. Stigma results in  codes of silence that allow secrets to fester and that allow many of out social problems to continue. It results in the stigmatized individuals often keeping silent out of shame and fear and believing lies.
          In the past, cancer used to be stigmatized and was not talked about, but thanks to courageous celebrities and others who began talking about their own battles with various cancers, we talk about it openly and this has opened the door to reaching out to cancer victims/survivors and fundraising and other efforts to prevent/end cancer. Today, we feel free to say the word cancer and to talk about our own experiences with it. Teen pregnany used to carry a horrible stigma, and teen mothers were forced to go into hiding and secretly make adoption plans for their unborn children. Or if they chose to parent their children, as my mother did (she was 16 when she gave birth to me), they faced many hardships and their children often grew up fighting differences in learning, behavior, and other differences and often were tracked into lives of lasting disadvantage. But thanks to efforts to set up pregnancy services to those facing unplanned pregnancies and through laws making adoption more attractive to such people as well as to prospective adoptive parents, such a stigma has much decreased. And the outcomes of people with unplanned pregnancies and their children today are much better than they were for my mom and for me in the 1960s!
          The stigma remains against HIV AIDS, though through awareness and advocacy, society has come to realize the origins of this condition and that it can happen to anyone. But much more needs to be done in this area and with reduced stigma and contined advocacy and awareness, we have much more of a chance to prevent/end HIV AIDS. And much more needs to be done for HIV AIDS prevention worldwide and for many children who have so tragically lost their parents to AIDS. And the stigma contines for epilepsy, even though it has lessoned a little. However, because of the continued stigma and the code of silence in talking about it, advocacy and fundraising efforts are being hindered as well as the attitudes of the public. Efforts continue and advances and scientific discoveries continue to be made. In an earlier blog post, I discussed my experience with epilepsy and stigma; I know many others can tell similar stories. If you want to include obesity (being over 20 perecent overweight) as a medical condition under this discussion, we all know there is definitely a stigma against anyone who is obese in many different ways and in society's attitudes toward the obese person. (No, I do advocate that if people have it in their power to prevent/end obesity, they need to do so, for the sake of their own health, as obesity carries many health risks.)  Often people do "eat themselves" into this condition, but many others are obese for complex reasons, including medication side effects, glandular conditions, especially of the thyroid, certain medical conditions and more. As people come to see that the causes of obesity are often complex, the stigma of obesity should keep decreasing.
          Mental illness definiely carries stigma; its stigma may not be quite as bad as in the past, thanks to the fundraising efforts and advocacy of brave individuals who have come forward to talk about their experiences with different forms of mental illness. But the stigma remains. The "insanity defense" and the high-profile true crime cases which have involved criminals with suspected (or actual) mental illness, have worsened this stigma. Though I realize the need to expose such crime cases and others to society to keep us safe, the media need to present these cases in such a way so as not to prepetuate the myth that most people with mental illnesses are dangers to society. Actually, most people with mental illness are more dangerous to themselves than they are to society; most of them are harmless. It's true that when people with certain mental illnesses don't take their medications or are not diagnosed properly, they as individuals may become dangers to others. But in most cases, most need to be protected from themselves rather than need society protected from them. In my first blog post, I mention my experience with misdiagnosis and being ""treated" with psychiatric medications which actually resulted in my becoming psychotic. I entered the world of those with mental illness for months; it was awful and traumatic!
          Abuse or crime, especially domestic violence in any form and sexual abuse, carry stigma even though many brave survivors and advocates have come out with their stories and this has lessoned the stigma somewhat. Witness how difficult it is for us to bring up the topic of sexual abuse with our children, while we know that we must do this to empower them to protect themselves. There is a wealth of resources for victims/survivors of various forms of abuse or crime; however, more needs to be done and I predict it will keep being done as we see victims/survivors of abuse or crime keep sharing their stories, and advocating. The same holds true for various addictions from substance abuse to eating disorders to harding to other addictions; as people keep coming forward to share their stories, we can talk about these things and people will be empowered to, over time, overcome their addictions.
          There is a stigma attached to neurological conditions like autism, Asperger's Syndrome (and to a lesser degree, to general learning disorders, ADD, ADHD, Tourette's Syndrome, among others). In one of my first blog posts, called "What is Autism?" I have told about my own lifetime experience with this and with being wrongly diagnosed, given treatments I did not need and often being sent to schools that added to my stigma. And I discuss much of the anguish I have suffered, how it has affected my quality of life and its effects on me to this day. I'm thankful that special education and education, in general, as well as scientific discoveries, have much improved since my childhood, teen years and young adulthood. But there remains a hidden, "lost generation" of people with undiagnosed conditions who today languish in jails or prisons, remain unemployed, or exists on the fringes of society, including among the homeless. Some fortunate individuals have been able to get diagnosed properly as adults and have carved out niches for themselves (ex., Liane Willey-Holliday and Stephen Shores) but most are not so blessed. Much more needs to be done to bring healing and hope this this "lost generation" through advocacy and research.
          The stigma of suicide is well-known. Sadly, I have known of pastors who have stated that they would not conduct funerals of families of loved ones who have ended their lives or who will not grant families assurance abut the eternal fates of their loved ones. My position is that God, while He is indeed infinitely holy, is also infinitely loving and merciful and that He does not see things the way that humans do. And the stigma affects families of troops or veterans in the US who have ended their lives, as for many years, they have not even received letters of condolence from the US government.
(Thankfully, the government is addressing this). Thanks survivors telling their own stories and to the advocacy of groups and organizations, the stigma of suicide is decreasing. But it is still there and more needs to be done. 
          The stigma of being lesbian, gay, bisexual, or transsexual is well-known. Whatever our own fellings about sexual orientation and what religious convictions we have that affect how we see homosexuality, those with different sexual orientations from the norms are human beings with the same rights as any of the rest of us. Even those with religious convictions about God's plan for our sexuality must see that He, in His infinite holiness, sees sins of jugmentalism, self-righteousness, hate, prejudice, bigotry, and other "respectable" sins with the same sadness and displeasue as He does sexual sins, which are well-known and do not need mentioning here. Sin is sin and when we see that God treats us all the same, stigmatizing because of sexual orientation is just as evil as stigmatizing for any other reason. Another reason we must end this stigma is because of the many people who silently struggle with same-sex thoughts even in churches, even against their convictions. The last things such people need is to be lectured or judged! They need safety and support and this will never happen as long as this stigma remains. This issue needs to keep being talked about.
          I can go on and on about stigma, but it is the reason so many of our social problems which we deplore, continue. It is because people "don't talk about these things" in the hope that by ignoring these issues, they soomehow will go away on their own. But there are many wounds that no amount of time will heal. We must talk about them and we must deal with them.
         

November is National Epilepsy Awareness Month

          Lupus. Cancer. Multiple Sclerosis. Heart disease. Hyperglycemia. Hypoglycemia. Diabetes. Migraine Headaches. We talk openly about these conditions (and many others) and their symptoms and we should. And yet when it comes to epilepsy, this is different. How easy is it to use the words "epilepsy" and seizures"? But this condition affects millions of people and many families. And yet there is a definite stigma attached to it, so that many people with epilepsy will not disclose their condition when applying for higher education or jobs or when entering relationships especially with the opposite sex. The stigma actually goes back to the days of the Bible when the concept of neurological conditions like epilepsy did not exist; seizures were considered demon possession (yes, I do believe in actual demon possession with signs that mimick seizures but that is a separate topic). Though we know better now, the stigma still exists; institututionalized and social stigma continue. This is because when people experience seizures, especially the grand mal kind, their bodies are out of control, their minds in states of altered consciousness.
          Yes, many seizures are not due to epilepsy. Take febrile seizures, for example, where children especially, experience these because their immature systems can't handle the infections that their bodies use fevers to fight. My daughter experienced these until the age of six which is said to be the normal age for outgrowing these sort of seizures.
           Epilepsy exists on a spectrum, from those whose seizures occur daily to those whose seizures occur a few times a month or a year to those with full control. And seizures also are on a spectrum, from minor seizures to complex-partial or temporal lobe seizure to grand mal seizures. Epilepsy can be acquired at any age and can happen to anyone, especially if experiencing traumatic brain injury or an automobile accident or another such misfortune. There are a number of treatments to manage epilepsy especially medications.
           As a child, I was diagnosed with epilepsy. The seizures I experienced, over the years, have been sporadic for the most part. They are the grand mal kind. Thank God, I have been seizure-free for about 15 or 16 years. However, I have paid a high price to remain seizure-free. And I know many others with seizues have testified to suffering side effects. In my case, it was my long-term use of anti-convulsants that, in my opinion, caused me to deal with losses of both long term and especially short-term memory. I also have experienced slowed mental processing and reaction time. Because of these things I was strongly discouraged from getting a Driver's License. These kind of side effects have been more disabling to me than the seizure themselves, traumatic as they have been at the time. In the case of others, many also testify to experiencing side effects from cognitive losses to hair falling out to swollen gums. There are other side effects which I won't go into for the sake of space and length.
          As for social stigma, this like the side effects of medication, has affected me more than than seizures themselves. Once, I applied for a volunteer position for a local pregnancy resource center for those dealing with crisis pregnancies. Sometime after my interview with the Director, I disclosed to her "And there is another thing; I have epilepsy." "I'm glad you told me that," she said. What? All I know was that a month or so later, I was dismissed as a volunteer. I noticed that when I was told about this, a small tape recorder was used without my consent. "We do not feel you are a good fit for working here and because of your living circumstances," was all I was told. Yet I wonder if my self-disclosure of epilepsy had anything to do with it.
           Another example of stigma is when I returned to college as an adult; in the course of time I took a class in German. One day, in that class, I experienced a seizure, one of three I experienced that day. Afterward, I was encourages to drop this class. And, for the remainder of the class, I noticed that the manner of my classmates changes toward me (I never felt liked by that class instructor in the first place but this is beside the point) changes and they would ignore me forever thereafter. My neurologist, whom I like very much, has told me once, "I tell all my patients who have seizures not to have children."
          Chances are, if you don't know anyone with epilepsy, it may be that, because of its stigma, they have not disclosed it to you.  This month, therefore, has been designated National Epilepsy Awareness Month with the focus to undo its stigma through education and awareness. There are some excellent links below where you can learn much more, because epilepsy, like cancer or heart disease, can happen to any of us or a loved one.

http://epilepsyfoundation.org/ This is the National Epilepsy Foundation website.

http://talkaboutit.org.ning.com/ This is the blogspot for The Talk About It Foundation, for epilepsy awareness.

https://www.facebook.com/#!/pages/talkaboutitfoundation/  This is the Facebook page for the Talk About It Foundation, for epilepsy awareness.