“When you plant lettuce, if it does not grow well, you don’t blame the lettuce.” Thich Nhat Hanh
I wrote this blog originally as the opening remarks for a pre-conference day on memory for the international FASD research conference in Vancouver that was to have occurred in 2020. That was before COVID messed up the world. It came about because the Adult Leadership Committee of FASD Changemakers feel very strongly that people who work with those with FASD – professionals of all types – just do NOT grasp the significance of the memory problems people with FASD experience; so, we had requested of the Expert Planning Committee that this issue be addressed – for professionals and front-line service workers – in the full day “Let’s Talk” pre-conference session, with the emphasis on assessment of memory and the application of those assessments in the real world that people – especially adults – with FASD inhabit – housing, employment, schools/education, legal systems, social services, health, relationships and so forth.
So, rather than let the opening remarks I had written for the professionals go to waste, I thought why not turn them into a blog? So, with some modifications, here goes!
Memory is the single biggest issue people with FASD all struggle with. Some of us have a little problem; most of us (like myself) have a big problem. Regardless, it affects every area of our lives, from the time we get up in the morning to the time we go to bed at night. All day. Every day. But it does not look that way; it looks like behaviour and it is reacted to as behaviour.
The biggest problem – by far – is that we do not think most people who do not live with FASD or interact daily, understand what a dysfunctional memory really means. Even families often do not understand. So, I am going to give my best shot at trying to help you understand what the problems are from our perspective. And if you DO think you know what that means…..well…..I hope you will begin to question more deeply what you think you “know” about it.
Malcolm Gladwell in his latest book “Talking to Strangers” (yes, I read his books), talks about something called TRANSPARENCY – which was not about memory, BUT actually, it explains a lot, and is so very applicable to the problem that I am going to apply the idea and expand it throughout from my point of view, and ask you to keep it in mind as you read this.
TRANSPARENCY, as he discusses it, is about how people read your facial expressions and your reactions to things and what they expect to find in your expressions and in your actions BASED ON THEIR OWN EXPERIENCES in a similar situation. Read this over a couple of times and think about it.
Because it is NOT about what occurs when you interact with people with FASD. When the expected facial expressions and/or actions of the person with FASD DON’T MATCH with the reader’s expectations, things go wrong – often very badly.
The world is working – and therefore reading the expression or behaviour – from a different set of experiences and actions than those of us with FASD are.
We are strangers in a strange place.
With memory, your experiences of memory failure do NOT match with ours – because they CANNOT. So there can be no TRANSPARENCY.
Things go wrong. Badly. Frequently. Think about that for a minute.
Three problems (among many) come to my mind right away.
First, memory assessments for people with FASD do not – and simply cannot – capture what this is in a real, everyday functional life that is constantly changing. What may “work” during an assessment today will likely NOT work tomorrow.
Assessments are just not valid across time and space – even very limited time and space. What you “find” and “score” does not “match” with our real life; we “test much better than we can do”.
So, we start with FAILED OR MISTAKEN TRANSPARENCY.
Your experiences are not our experiences, but you work from the position that they are because that is your only experiential frame.
Secondly, assessments determine everyone’s expectations of us and those expectations are based on what is FALSE TRANSPARENCY that is taken as accurate.
Thirdly, with our memory problems, we really cannot – now or in the future – provide the MISSING MUTUAL AND EQUAL TRANSPARENCY service providers and systems are expecting and need to understand us, as we perform in the real world, so it looks like we are faking something, or making excuses for ourselves, simply lacking in adult responsibility.
We – the ALC and all the adults with FASD that I know – start from – and remain in – a place of constant and chronic frustration because the unique and multi-factorial memory challenges of people with FASD are dismissed, minimized, ignored, overlooked, misunderstood, and so very often treated as wilful or deliberate behaviour arising out of a lack of responsibility. And with the very best of intentions, intervened with in ways that simply do not work for us and can feel like punishment and even retaliation.
Samuel Johnson, one of the greatest 18th century writers, said “The two offices of memory are collection and distribution”. Well, when you have FASD, BOTH offices are closed much of the time.
If wishes were horses…..then beggars would ride.
You know the little cursor on your computer screen? The one your battery powered mouse clicks on so you can get to what you want or need? Well that battery just dies and the cursor simply disappears from the mental computer screen that is our memory. The computer screen freezes or goes completely blank and cannot be rebooted. It is powerless when you need it the most, it saved nothing and the application of what was lost is EVERYTHING. We are – and we do – ONLY what we remember. Period. End of story.
FAILED TRANSPARENCY: right off the top, I want to say to all of you who want to find a “fix”, some memory type “trick” to help us remember because those tricks work for you: Those of us who are MOST in need of memory supports are the LEAST likely to be ABLE to use them in any consistent manner!! Because their use requires MEMORY!!
Kilroy Oldster, in The Dead Toad Scrolls said “Without the aid of memory, human cognition would be nil. Without memory, there can be no thinking, no learning, no accumulation of shared knowledge. Thinking requires the ability to recall. Thinking is what enables human beings the ability to understand cause and effect, recognize patterns of significance, comprehend the unique context of experience, measure personal activities and respond to the world in a meaningful way. Knowledge is memory based. Learning demands the acquisition of observations and learned information, the ability to recall a slew of previously held facts on command, and logically and intuitively to extrapolate from such objective facts.”
I want you to pay particular attention to his words “measure personal activities and respond to the world in a meaningful way; to logically and intuitively extrapolate from previous facts” – to figure out, and know what, how and when to do because THIS is the heart of the problem and this is what memory gives to people who do not have FASD.
Because THAT, in a nutshell, is what you expect us to do….because that is what YOU do…and it is precisely what we CANNOT do – so NO TRANSPARENCY.
We are working from a different set of experiences and actions than the world is. We are strangers in a strange place. And no amount of effort on anyone’s part can or will change that and the problems this currently presents.
The thing about memory in FASD, that you need to understand, is that the things we remember or don’t remember form our reality. And our reality may be – and is often – very different from yours. And that reality is what we work from. It is not “deliberate”. It is not “behaviour”. It is not a “choice”. If we could change it, believe me, we would. Life would be SO MUCH simpler, easier and far less stressful. And we would “know” what you “know” … there would be TRANSPARENCY…..we would be where you are and where we are supposed to be and where others want us to be, and not usually in a different place.
Memory has been called the human guidepost for actions – it is about what we WANT to do; it is about what we NEED to do; and it is about what we MUST do; now in the present and especially in the future.
What about the relationship between what people think of as memory in a biological or chemical process sense with another process like sensory issues or anxiety in FASD? How does one change the other? Or does it? And if so, how, and what does it do to our use of our already impaired memory? And under what circumstances, especially given that we cannot control our environments no matter how much we want to?
Dave Eggers in his book You Shall Know Our Velocity said “My mind, I know, I can prove, hovers on hummingbird wings. It hovers and churns. And when it is operating at full thrust, the churning does not stop. The machines do not rest, the systems rarely cool.” What happens when we also have the entire additional list of difficulties with sensory, attention, organization, slow processing, no operational sense of time, language comprehension issues, anxiety and so forth? When everything CHURNS? When the “systems rarely cool?”
Because that is FASD – we are like the hummingbird trying to stay in the sky, always aware that when we stop our churning, we do not hover; rather we fall out of the air.
MISSING MUTUAL TRANSPARENCY
Everyone has had the experience of using a toaster or kettle. You plug it in and it works. Then you plug it in again he next day and it does NOT work….and no matter how many times you try it, plug it in again and again, it simply does NOT work, no matter HOW hard you wiggle the cord. So…you go out and buy a new one to replace the defective one. Then, by accident, you plug in the OLD one again…and guess what? It works!!! Why? Because the wires WERE connected when it was used – and they STAYED connected while they needed to be for the duration of the task that one time. But that is not to be depended upon because it cannot be. That is why you buy a new toaster. But people with FASD are not toasters.
“Measuring personal activities and responding to the world in a meaningful way” and doing so in a logical manner is ALL about connected wires; about having MUTUAL TRANSPARENCY all of the time.
And future actions we want to take, need to take, must take collapse under the weight of those lost, missing, short-circuiting, or inaccurate connections in memory.
And what about the need to have what I am calling a “tidy blanket that fits the bed” memory; one that is the right size and tucks in properly, works in a logical order, that makes sense and stores ONLY what is important?
Memory in FASD is more like an old patchwork picture quilt of things that need to happen, might have happened or did happen, bits and some pieces roughly put together with holes and missing stitches and ragged edges, too long on one side and too short on the other; with absolutely NO regard for whether or not something is important to include or keep for later use or to discard altogether. And then we may even patch a hole with something we think sounds logical to use at the time but turns out to have been wrong.
Things come and go without our permission; this is NOT a choice.
Some things we can remember in great detail, but other pieces are gone completely – what does that mean to how others misperceive our issues with memory? Why is it that we cannot remember what we need to, but we can have trouble forgetting things we do not need at all; things that are NOT important; that have nothing to do with anything? Things we can tell you in great detail, but for what purpose? And how is it that we sometimes remember things that did not happen at all? And patch that hole in the blanket with them!
It’s like our memory is a bowl of cereal with milk that we are eating: when first poured in, the cereal looks like individual pieces (the information is there for a split second, separate pieces); when you wait for a few seconds, it becomes a little less firm (the information is no longer clear and begins to shift around and get disorganized, beginning to disappear); and when it sits a few seconds longer, it becomes just a big glob of mush. Why? Because memory didn’t say to the person eating: “THIS PIECE – put it on the spoon and eat it NOW”, or “THIS PIECE – put it onto the side of the bowl to think about.” Or “THIS PIECE – take it OUT of the milk to save because you will want/need it later” or “THIS PIECE – just throw it in the garbage because you won’t need it.” And THIS PIECE – well…..it isn’t actually cereal at all; not sure HOW it got into the bowl, or why…..but it is definitely there.”
HOW is the memory eater supposed to KNOW which action to take? Keep? For how long? Use now? Use in the future? Save? Discard? Ignore altogether? Under what circumstances? And we would need to remember the circumstances – which we often do not. MISSING, FAILED, MISTAKEN TRANSPARENCY.
HOW CAN THERE BE EQUAL OR MUTUAL TRANSPARENCY?
How do we THINK, how do we LOOK, how do we ACT – or REACT – to you in a vacuum of meaningful information – information that was never stored at all, or at best, incorrectly; never acted upon?
How do we THINK, how do we LOOK, how do we ACT – or REACT – to you, when we have only a dial up modem and you have high speed cable internet?
How do we FUNCTION when our working memory is an old 1970’s beater car, totally not fuel efficient, no energy savings parts, where everything works manually by hand and slowly – when it works at all – and the old garage in which we store the car has a door that only works by hand and will not open without difficulty and when it actually finally does, the garage is empty?
How do we FUNCTION when what we really need is a fully loaded 2021 Ferrari with every imaginable computer program already installed and running smoothly for high speed access to a memory garage; with a door that opens automatically, on demand and immediately as soon as you push the one button door opener; and a garage full of the stored information manuals we need to run the car, because THAT is what YOU have.
We are strangers in a strange place.
W.S. Merwin said “What you remember saves you.”
Can you imagine what it is like (and NO, you actually cannot) to live in a world where you are SO perpetually disconnected and mis-connecting? But not all the time, just most of the time – every day – and often enough – every day – to be seen – MISTAKENLY TRANSPARENTLY – as in control of your behaviour and actions and therefore seen as lazy, irresponsible, indifferent, inept, unmotivated and uncaring and perfectly able to remember if you want to – or even worse, seen to be deliberately lying.
Imagine living a version of this FALSE TRANSPARENCY that never ends.
And there is no area of our lives this does not affect. All day. Every day.
Nobel Prize winning neuroscientist Eric Kandel says that we are who we are because of what we learn and what we remember.
So, I ask you……TRANSPARENTLY- who then, are we, those of us with FASD, if we cannot remember? Who are we seen as? How are we thought about? What is expected of us? Who do you really think we are? What do you really think we are?
Without consistently held memories of our thoughts, actions and reactions, how do we know ourselves? How do we understand ourselves? How do we understand the world; or the reality that the rest of you inhabit?
We have to remember the whys of things, and when we don’t, our behaviour will not reflect what others want to see; need to see; MUST see, to read us accurately; to use their EXPERIENTIAL TRANSPARENCY.
Because memory forms your identity, how you think and how you act, and identity and self worth comes from the remembered accumulation of all your experiences, no matter who you are. Where then, do those of us with FASD fit within the bigger world; in our families, our relationships, in our communities, in our cultures?
Memory is what we need to understand what it is to be human; to belong; to survive; to live, to thrive. How can you truly belong if you don’t remember or express or act on the values of the group you are with, in the ways that MUTUAL AND EQUAL TRANSPARENCY demands? Memory is what REMINDS us of what to do; where to do it; when to do it; how to do it; and why to do it. You must have all of this. You cannot have just some of it some of the time. It particularly breaks down in the “when” category because nearly everything you have to do or that is value based is sometime in the future.
And when you think about it, everything is value based in some manner and expresses someone’s opinion of you as a person.
FREQUENT MISTAKEN TRANSPARENCY
Memory (and forgetting) must work automatically, on demand, as needed, EVERY SINGLE TIME it is needed or it is NOT useful functional memory, no matter WHAT any assessment says. It cannot be a part-time thing because part-time is not useful to, or usable by the person who has FASD in the full-time world in which we live.
And we need you to understand this and to consider that memory assessment simply does NOT identify meaningfully the problems; the manner and type of the problems; the extent of those problems; or reflect the life domains in which they occur.
It simply allows people who interact with those of us with FASD or who use assessment results to provide services, to continue the FALSE TRANSPARENCY based status quo of misunderstanding and unrealistic expectations; to continue to see us as the problem, rather than seeing what different systems need to do differently. This is true for every system, every service and every industry that interacts with adults with FASD and is a huge issue in all social services, justice and employment.
I work part-time in a retail environment where I have had the same job for 17 years. I do the same things 90% of the time. But I STILL cannot remember to do one of the most basic parts of it with any reliability. My employer finally agreed to allow me to keep a post-it note with this one thing on it to help me remember. But then…..I was told I could not keep the note where I could see it because “it was not professional” and I needed to keep it in a drawer!! No TRANSPARENCY at all.
Memory – for us – is like having an ice cube in your palm on a very hot summer’s day, while trying to stand on pavement that is 130 degrees in bare feet. It melts away very quickly and changes to water dripping out between our fingers; evaporating into the air before it even has a chance to hit the ground. We do not have a way to collect the water and turn it back into ice. And we CERTAINLY do not have a way to keep the ice cold because we are always living in that heat and hopping from foot to foot on that pavement. That is the way out memories work.
Paul Auster said “Memory is the space in which a thing happens for a second time”.
People with FASD do not have the TRANSPARENT luxury of that “space” because it is like nothing ever happened – or was remembered – for the first time….so everything happens for the first time, every time. Imagine living a version of that that never ends…….the hummingbird always falling from the sky because its “hover” memory does not work.
Think about that and all it means….because you have to understand this or you will NEVER understand us and how profound and all-encompassing the problems with memory are.
Soren Kierkegaard said “Life can only be understood backwards, but it MUST be LIVED FORWARD”.
The missing touchstone is TRANSPARENCY.
As you consider assessments and supports, and how we live in the real world, please remember 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.