Alex
Am I just too strange or too different
Posted on: 03/22/2009 22:23
Since my sister has been ill, I have been getting to know more lay people in my congregation, and I am realizing how different I really am. Last year I was officially diagnosed with PDD-NOS a condition in the autism spectrum. Very little is known about Autism. However those who have it are characterised according to certain criteria established in the DSM Diagnostic_and_Statistical_Manual_of_Mental_Disorders, in the book mental disorders include things like mental illnesses, neurological illness, developmental disorders, learning disorders and more.
It is due to be revised this year. To remove some BS and likely add some more.
I also have been infected with HIV since my teens, found out in my twenties, and was on palliative care in my early thirties, (almost daily radiation weekly with occasional, pain medications, a half dozen anti-biotics and other drugs) when I started a drug trial that lowered the amount of HIV anti-bodies to undetectable levels. This allowed my immune system to recover, and fight off my cancer, and other infections. Today I still have some health problems but they are more like those of someone in their 60s rather than their 40s. I am proof HIV does not kill but lack of basic health care does.
I am also a widower, having lost my partner 16 years ago. We were together 8 years. I was lucky to have met him; he saved my life in many ways.
Most of the people I knew in my twenties and thirties are dead.
I have had trouble with meeting people since, because as I have just discovered I have an inability to tell when people like me by their body language. I also have problems with understanding how people use language. I am learning a lot of ways I can accommodate for these differences, but that it takes time. In the past I got to know a lot of people by belonging to groups, churches until 1988, and political organizations fight for change. I suspect I was can at that because the things I was to do, and how to act were clearly laid out. (Mission statements, Rules of orders, Board Member Kits)
I spend a lot of times today with people who have expressed needs to me. All of my friends or people I spend time with (with the only exceptions being church people) are among the most marginalized or suffer from greater impairments than I do. Most are poor in Canadian standards. I am grateful for this because one of my impairments is being able to focus, and when someone has an expressed needs, it keeps me focus, and thus I am able to do things and learn.
I am also an activists speaking to groups about the global pandemic, and working for disability interests at school.
I read the Gay Liberation Manifesto, of 1970 when I was 17 and it stated that if we were all honest and open then homophobia would cease to exists, because it was only allowed to continue to people either stayed silent or lied. This Kantian, Boy Scout “duty” ethic was some I was also taught in church. While the world said that “truth hurts” I was told that the truth shall set you free.
I like to talk about philosophy or theology. Most of the people I help are bored by philosophy and despise theology or anything that hints of religion), and most of the church people I know are bored by philosophy but have an existence so different from mine, I think they have difficulty conceiving who I am.
We recent did a Church survey where the lowest income one could check off was under $40,000, (three times what I make) and few members were in that level. However I am about the average of the churches members, and hold many of the same values.
However, what I believe about having AIDS and other people with AIDS is different then what many of them see and say. They see people who has suffered and lost, while I see people who have endured great ordeals and triumphed and I see strength and character. Church and other people see poor people, and I see people who have great wealth.
I see people who call themselves atheists or agnostics, yet who I see have great faith and righteous lives. I some Christians (particularly those who are the loudest about it) who call themselves believers, but have no God at all, or at least act like it.
I believe in the Christian God, and I know because of my differences I need to be in a community to help me grow as a person and be closer to God (or the truth, or right action)
I don’t accept many common truths, I am not sure if metaphysical reasoning is what counts, but I love to read it.
But what I believe is not something I can proof to you or anyone else, or even myself. But what I believe is the center of my life. I believe is that Jesus is my God (And like most people please don’t confuse a metaphysical God with a different kind). The example of his life and the message of his resurrection is that we all count. That no matter what others say to me (and believe me many have told me to let go and die) I matter. And because I matter, that means that all other people matter and are as deserving of the same basic treatment that I do ( like health care clean food and water).
Where other people see HIV as only a problem, I see it as a reason to do Gods work; I see it as a justification of my faith. I see that millions dies when we follow Gods like fee market ideologies, rigid fundamentalist religious beliefs, and instrumental reasoning.
So how strange or different does this make me? Or is it just all too much at the same time,and not just one thing?
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Alex
Posted on: 03/22/2009 22:51
I just thought I would add a musical score to my writing
RevMatt
Posted on: 03/23/2009 06:20
Alex - it makes you who you are. We're all strange in our own ways, but you are certainly no stranger fundamentally speaking than most people I know. Unique, yes. Interesting, absolutely. But strange?
Thanks for telling us your story in such detail. And for the good music :)
ninjafaery
Posted on: 03/23/2009 08:33
Hi Alex -- I've always read your posts with great interest and consider you anything but strange. You are honest, compassionate and have a good sense of humour. You have experienced depth and grief -- not everyone has, and that shapes you (for the better). Maybe part of your life's purpose is to stand as an inspiration, edify, and arouse the conscience of those impoverished making over $40k.
I miss out on cues that tell me if someone likes me too. Generally they do, but ya can't win 'em all. Some of them are just terribly jealous (blushes modestly) -- even if they make over $40k. One angry quote I heard about me is that "She thinks everything is OK!".
Tyson
Posted on: 03/23/2009 08:48
I have always had a problem with normalcy. I have never really conformed to what others have expected of me and I tend to gravitate to those on the fringe. I find that to be normal. Some people get me and a lot more do not. It has worked out pretty good for me.
I agree with RevMatt. You are who you are and if others don't like it, tough turkeys. I also agree with nf, you are honest, compassionate and have a good sense of humour.
lastpointe
Posted on: 03/23/2009 11:03
Hi Alex, I too think you are a valuable member of our community and add a depth of understanding on many issues that is important for us to hear.
though there are some very gregarious people who are totally comfortable everywhere, i truly think that they are the unusual ones. I think more people feel like you do.
Unsure of how they fit in.
uncomfortable in groups
unable to understand the complex niceties of social interaction
unable to read the situation.
Keep giving your input in any way you can. Keep putting forward your point and keep listening to the points of others.
Kappa
Posted on: 03/23/2009 11:40
Hi Alex,
It's interesting to hear that you were only just diagnosed with PDD_NOS, given that it tends to be diagnosed based on life-long characteristics of a person (i.e., it doesn't come and go, or tend to emerge in early adulthood, like many DSM diagnoses). Did the diagnosis accentuate the difference you feel compared with others, or did it reassure you at all? Sometimes it can be helpful for people to receive a diagnosis because it helps them to understand themselves; others feel they are being reduced to a label.
Regardless, it's nice to hear your story here. I imagine many people who have experienced what you have would not be so open about where they have come from and willing to reflect on it in a public forum like this. I think it's helpful for all of us to learn how different the lives of others outside of our own sphere can be. It is an antidote for rigid thinking, and may make us more open to some of the big questions of philosophy and the art of being human.
SG
Posted on: 03/23/2009 11:42
Alex,
Strange is not a bad word. It is, well not ordinary and not the expected. To me, that is a good thing. For too long too many look at the surface and not deeper, because they can't bear it, because they are too busy, because we don't do such things, because we are above it, we are below it, we just don't..... For too long, we have expected people to talk about the weather and niceties and not the uglier side. Silence and avoidance means society does not improve. We go in cycles sometimes. We talk about something and bring it to light, like incest or child abuse, and then determine light was on it or it is far too ugly for civil folks and we put it back where we found it.... and occassionally even believe it is fixed as it lies broken in the shadows. What is wrong with being strange in this world?
People used to really interact and debate and discuss philosophy and all that far more. Then, you, my friend, would not have been considered strange at all. Today, we isolate in suburban coccoons and we click buttons to interact with people or speak to people without faces (on phones)
Many people do not really learn how to tell whether others like them or not. Many do not know how to meet people or even know how to interact when they do. It is more common than we admit as we prefer to wear masks of self confidence and assurance. It can be strange when people remove their mask or do not wear one.
Many struggle with their place and others because of diagnosed disease or condition, abuse, lack of interaction, fear, shyness, self-esteem issues or any number of things....
Strange is not a bad thing. The world could use more strange people.
Alex
Posted on: 03/23/2009 15:12
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Hi Alex,
It's interesting to hear that you were only just diagnosed with PDD_NOS, given that it tends to be diagnosed based on life-long characteristics of a person (i.e., it doesn't come and go, or tend to emerge in early adulthood, like many DSM diagnoses). Did the diagnosis accentuate the difference you feel compared with others, or did it reassure you at all? Sometimes it can be helpful for people to receive a diagnosis because it helps them to understand themselves; others feel they are being reduced to a label.
Actually PDD-NOS and other high functioning forms of autism were only recognized in North America in 1984. Prior to that we were diagnosed according to symptom. It is only after 1894 that these symptoms were considered related.
As a young child at first they thought I was partially deaf. Then when deafness was eliminated I was diagnosed extentially with something that just means unable to talk. I was kept out of school for a year. while living in PEI. The after we moved to Nova Scotia, I went to a school at the Isaac Walton Killiam Hospital to learn to speak. After six months of so I was able to speak enough to continue only in a main stream school.
My first teacher was Miss Dickie, a person short in stature, the same height as her students. She intuitively knew how to teach students who were different.
After that we moved every year or two to a different provinces and my differences were explained away by the fact we moved so often, also I usually hung out with kids who spoke neither French or English and were new comers to Canada so my differences was understood to them as something Canadian ;-).
I had failing grades except in grades 5,6, 8,9, and 10.. This could be partially explained because in grade 4 I stopped trying to learn from my teachers. I was usually placed in the back of the class because I was hyperactive, and the teachers sounded to me like the adults due in a Charlie Brown cartoon, (blah, blah, blah, ) However in afternoon after we had moved at the end of grade 3 and I had nothing to do, my mother, showed me how dictionaries worked. This opened up the ability to read to me. By the end of the summer I had read all the Hardy Boy Books, and Nancy Drew Books (the only youth books in my house,) and by November I had read all of my mother’s books. I then discovered libraries. And Every in class I would bring a book and read. Luckily the teachers let me do this as it was easier to run the class if I had a book to read. Otherwise I was extremely hyperactive and inattentive .
I went to school in 4 different provinces, so my problems were explained by that.
I sufferer from generalized anxiety. I work as a day labourer for years in Quebec City. Recently I had to stop work due to carpal tunnel, and so I decided to study philosophy at St Paul. I picked Saint Paul solely because it was a much smaller school with small classes. I took two courses a semester to qualify. At the time I was consider disabled due to my carpal tunnel and had heard I could get voice recognition software.(which sucks). I also got tested to see if I had ADD which I strongly believed I had.
What happened surprised me, I was tested and it confirmed I had ADD, but it also said that in many ways I was very intelligent (extremely so, and they showed me test rests comparing me to others and I was shocked) I had always believed I was slow, and that whenever people said I was smart they said so in a condescending way.
So I did some reading and at the HIV Clinic I demanded accommodations that applied to those with autism. In order to get accommodation they said I would have to have proof. That would normally cost at least 2000, dollars. I got the test paid for since I had an existing disability and had a twenty year history of being unable to access services at the Immunology Clinic (HIV) at the General.
After many days of testing for autism, and as well as to eliminate other conditions that could explain my systems, writing and getting my childhood medical records, along with most of my adult ones, (believe me this was hard)
I was giving a diagnoses of PDD-NOS.
I think many people with PDD-NOS are misdiagnosed with other conditions, because no one in the medical system looks at you if you are over 18, as a whole being and as part of a process.
I had to write and get my old medical records myself. I had to find a doctor you knew me in 1969. I had to put research the conditions and they provide the empirical proofs I had in past medical records.
Thanks God I did, because I believed many misdiagnosed people are feed drugs BS treatments that do nothing for people with Autism, but do cause side effects the increase their disabilities. They often spend enormous amounts of time feeling shame or guilt because they do not they are not what other people tell them they are supposed to be ( although some know this intuitively)
crazyheart
Posted on: 03/23/2009 16:13
Hey Alex, if you are different and strange- thank God. You have taught me so much about the disabled and the the things that they encounter ( in just going to church for example). Different and strange is good (imho)
Faerenach
Posted on: 03/23/2009 16:38
The way I see it is that people can focus on their differences, or on what they have in common.
We're all strange - thanks for sharing!
Tyson
Posted on: 03/23/2009 16:46
We're all strange - thanks for sharing!
What a strange thing to say.
Advocatus Diaboli
Posted on: 03/23/2009 19:08
Everybodys is strange, just some are brave enuff to show it, or thay can't not. Which one do you want to be.
Qouted from the exrtemly modest, smartes and best speller in the world. ME!
Tabitha
Posted on: 03/26/2009 23:42
Not strange/weird Alex
Just unique-created in God's image -the same as the rest of us. Thanks for sharing!
myst
Posted on: 03/27/2009 21:59
I just want to add that I really appreciate you sharing Alex. And personally, I appreciate and use the word unique - and unique is a good thing.
realmseer
Posted on: 03/29/2009 23:12
Well I don't find you different at all. I actually find you above the "norm"! You can see beyond the box that you where originally placed into; Not many can do that.
I like you just the way you are
somegirl
Posted on: 03/30/2009 20:57
Alex, the posts that you made on my thread about my mother were so heartfelt and understanding and they helped me a lot. If you are too strange or too different, I really wish that there were more people who were as strange and different as you.
abpenny
Posted on: 03/30/2009 21:24
Hi Alex...truly, if you had not said so, I would not know that you had any kind of learning problems. I taught an autistic boy one on one in Sunday school and he taught me so much.
I am so blown away by the research and intuitive self preservation that it took to do all of the work you had to do to be recognized. How sadly we miss the mark as the caretakers.
I heard on the news this morning a mom that has written a book on how she cured her son's autism. Did you read about that? If so, I'd love to hear, firsthand, how it strikes you.
Again...you blow me away with the hoops you've jumped! Perhaps tenacity is a strength you have gleaned, from your unique wiring...
stardust
Posted on: 04/07/2009 00:25
Oh Alex!
Gosh....where's my dictionary? I can't think of the words I might use to describe my incredibly high opinion of you. I'm reduced to silence.
Alex O Alex...you must get busy and write journals that can one day become a book; your biography or life story. Its very hard to find a publisher in Canada but never mind that! Write...write....write...write your heart out. Do you know you're a really good writer and what marvellous adventures you have had in your life. We can all learn so much from you. For me you've been a truly remarkable inspiration and talk about courage, patience, wisdom,forbearance, faith, hope ,and the light of love that shines like a beacon in the dark when I read your words.
Are you different? Yes, in a glorious way! Your experiences have taught and brought you a degree of maturity that many of us can never hope to achieve. Me? My life seems so very ordinary in comparison.
I can't remember the name of it but I read a book years ago by Jess Lair (I think?) a psychologist or something. He was saying its O.K. if everyone doesn't like us. He went a bit too far in saying only talk to those whose eyes light up when they see you. Yikes, we might not be talking to anyone in that case, huh? When we talk to others we may set of what is called "a trigger" in their minds meaning some past bad experience or current fear thats unresolved in their minds. I mean something they can't deal with and so they choose to run away and hide instead. People are just terribly complicated animals.
O.K. O.K. Why can't I write short posts like everyone else....lol. I simply can't. I'm different too
You say Jesus is your God. Man O Man....I can sure see that! Such beauty, such great love for people and suffering humanity, such strength in weakness you display. Jesus is all over you!
see next post
stardust
Posted on: 04/07/2009 00:32
Alex
I came across this in my email. It sure made me think about you and your life.
I asked God for strength, that I might achieve,
I was made weak, that I might learn humbly to
obey.
I asked for health, that I might do greater things,
I was given infirmity, that I might do better things.
I asked for riches, that I might be happy,
I was given poverty, that I might be wise.
I asked for power, that I might have the praise of
men,
I was given weakness, that I might feel the need
of God.
I asked for all things, that I might enjoy life,
I was given life, that I might enjoy all things
I got nothing that I asked for—but everything
I had hoped for.
Almost despite myself, my unspoken prayers were
answered.
I am, among all [people], most richly blessed.
(American Confederate Soldier)
All Rightie I'll shut up finally and leave you with some songs.
God bless you and send his angels to love and protect you always.