ORIGIN STORIES AND DESTINATIONS – DO THEY MATTER?

“There’s a story behind everything. How a picture got on a wall. How a scar got on your face. Sometimes the stories are simple, and sometimes they are hard and heartbreaking. But behind all your stories is always your mother’s story, because hers is where yours began.”

— Mitch Albom (from his book For One More Day)

 

Every story, everything and everyone on earth has a beginning. Sometimes our origin explains it best – how it happened, and our role in a bigger world. That story is also a touchstone that connects everyone. “This is where I began”. “This is where I fit, where I belong”. For most people, people who do NOT have FASD, it also means “This is the road others took before me” or “this is the road map I should follow”. It gives direction and meaning that you do not have to go looking for – it is just there. And there are lots of people who can give support because they know the road and they have that map – and it DOES take you where you want to go. But ONLY if you do not have FASD.

If you have FASD, the origin story – the beginning – gives us an idea of the how – but almost never the why our story began the way it did. And we may never know or never really understand the why of our different mothers’ alcohol use because we were not there; we did not live their realities. I have learned that I cannot judge because to do so is also to judge myself. If I regard my birth mother as “less than”, then I am also “less-than”. And I am NOT.

Some of us grow up in birth homes, some of us grow up in adoptive homes. And some of us grow up in foster care. We usually start out in tough places; places that have a huge impact on our lives. We don’t always know where we fit; where we belong. We have questions that no one can answer; that no one has the answers to; questions that there may – or will – never be answers to.  Why questions.  Questions and more questions that are part of the how and part of the why, for those of us as individuals with FASD, for the women who gave birth to us and for the people we grow up with. We need to make peace with that and that is something that can be very, very hard to do. Forgiveness does not come easily or quickly for anyone. If there is one thing I have learned, it is that forgiveness isn’t a “time” thing……you may have to forgive many people – including yourself – many times. Because this is not where your story ends.

Most of us experience things that no person should – and those things will probably keep happening to us – that is just a fact because everyone is on the wrong road.  And I don’t just mean abuse or neglect. I mean things like awful school experiences and teachers who do not know anything about FASD; never getting asked to a birthday party; never having even one real friend in grade school; being bullied; being accused of doing things on purpose (really???); of knowing what we were doing was wrong, when we did not; a complete lack of understanding; having to try to function in places – and that is almost everywhere – where we become overwhelmed which is always seen as “behavior” that we “choose”; being taken advantage of because we cannot “think” fast enough (of course we “think” – just not as quickly or maybe not the same way someone else does); not being able to find or keep a job or always being afraid you will get fired because you have to work twice as hard to be seen as half as good as anyone else where you work.

All this because people don’t understand, or refuse to believe, and stick to the old road because it worked for others who did not have FASD. We then believe it must be us who are wrong. Why keep walking on the road that is so unsuited for our feet?? At this point, that old road is so worn out, so full of pot holes and strewn with boulders that it is impossible for anyone with FASD to walk safely. People with FASD need to question why we are on that road; we walk it only because everyone else has and they tell us that is THE road. But it is not. We must build a new road with new materials with new technology to make a new future.

What does everyone else do when they know they need a new road? They make noise. They bombard their city council or government, they sign petitions, they PROTEST. And they keep protesting until they get their new road. Because this is not where a story ends.

But we need to understand that FASD was just our story’s start – and maybe some (or a lot) of its middle.     Someone, I think it was Chico Xavier, said “‎Though nobody can go back and make a new beginning…..anyone can start over and make a new ending.”

Those of us with FASD do NOT – currently – have the gift of that ‘road others took before me’ or ‘the road map to follow’ that everyone else has. Instead, we are going to have to build our own road that leads to where everyone else gets to go and then draw the new map if we want to get to where we want to be.   Marvel Comics Super Hero Agent Carter (also known as Agent 13 from S.H.I.E.L.D.) said “All we can do is our best, and sometimes the best we can do is start over”   We have to do the “start over” if we want to change our destination, to make that ‘new ending’.  So…..I have become an FASD Change Maker.

Because…….

FASD is an origin story. It is not who we are. It does not have to be – nor should it be – our destination. It is only ONE stop on the road. It is not where our story ends.

With FASD, our origin story began before us. Our origin story began with blame. Blame on the mother; blame on the parent; and finally, blame on us. Our story then gets written by others, the rest of society. They lay down the ground work, and pre-determine where they believe we will end up. Based on what, exactly?

What if all origin stories began that way? With blame? With shame? With guilt? How does that help anyone; how does that help us? Or change anything? How could that ever change a destination?

FASD is only an origin story. It is not who you are or who you can become. Bruce Wayne wasn’t always Batman. It took a turn of events for that to happen. Superman was an alien with no home planet.  Spiderman was a kid who got bit by a radioactive spider.  Nobody in the comic books blamed Batman’s parents for walking down a dark alley they should not have been in and getting shot, leaving Bruce an orphan. Nobody blamed Clark Kent’s parents for blasting their baby into space – after, I might add, they ruined their own planet.  Nobody blamed Spiderman for getting bit by a spider he “should have known” to avoid.  And does the “should have known” sound a lot like living with FASD???

If we want to be as critical, as most people are of parents who “knowingly drink”, we could blame these comic book parents as well. hey too should “have known better”; made “better” or “different” choices; “got help”. But they didn’t. And we don’t know the “why” and never will. What purpose does blaming them serve now? How does that help us? Because that is not where our story ends.

Having being born itself is the origin story. Having FASD is an event in it, one part of that story. It does not have to define us (unless we allow it to), no matter how it motivates us, and shapes how we think, or see the world, just like Superman or Batman. If “tragedy” hadn’t happened to them, what would have been their world view? Would they be like everyone else, seeing the world the same way everyone did, never knowing what they could do? Batman wouldn’t have become an inventor and crime fighter. He would not have seen the point of making something out of the life he was left with. Superman would not have shown us how to live with things you cannot fix; things you just have to deal with every day – like kryptonite and Lex Luthor who hated him. Superman said: “It’s not about where you were born or the powers you have or what you wear on your chest; it’s about what you do.”  Superman also said “How others see you is not important. How you see yourself is everything”.

My favourite examples of characters that are shunned or misunderstood are the X Men. They are outcasts and they look different and lots of their “behaviour” is something the real world would probably have a problem with. A lot like people with FASD. Being different, can make it feel like you are the only one. But they had Professor X who offered them a place for help and support and strengthened their understanding of themselves and their place in the world; telling them that even though circumstances (the “event”) made them different, they did belong in the world and he taught them they had something to offer – and that the world had overlooked what it was.

People with FASD can do what all Super Heroes do, regardless of where or what their origin story was or what “mistakes” their parents made – make something out of the life we have. Lead the way. Change the story.

 The reason comic books speak to us is the fantastical. People who are so-called “normal” most of the time become someone else and while they are, they do extraordinary things. If you think about it, the stories are sort of lessons about life, why people do what they do, and their behaviour. They can actually make you wonder – like what would you do if you had a super power? Would you choose to be a super villain and take the easy way out, or would you choose to be a Super Hero and keep on trying to do what makes a difference – in this case, for yourself and others with FASD and refuse to be defined by an origin story event?

Those of us with FASD are not comic book people and we might not be fighting villains but we ARE fighting prejudice and that pre-determined destination as others see it, all the time. And we WILL win……because we will not give up and we will not give-in to what other people think. We will build the road that leads to success in FASD and we will draw the map for those who come behind us to show the way. We will “make a new ending”, because FASD is only our origin story. It is not our destination. It is not how our story ends.

 As Super Hero Franklin (the son of Mr. Fantastic) said: “The door is more open than it appears. It separates who you are from who you can be. You do not have to walk through it”.

So….just push it open, even a little, and see what happens; see what you can do.

And finally, Superhero Martian Man Hunter said: “The future is worth it. All the pain. All the tears. The future is worth the fight”.

Never forget that.

 

CJ Lutke, who is 36 years old, was diagnosed with FASD when she was a baby. CJ is a well-known speaker on FASD, having presented at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD. Read more of CJ’s blogs here

View the latest NOFASD Australia blogs here.

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