I want to tell you all a story. Trust me, this story leads into my blog subject on memory, and things related to my memory – and that of everyone else with FASD that I know.
Just before Christmas I was working (when I am not taking forever to write my next blog, I work part-time at Winners, a clothing and household store). Anyways, Christmas is a very busy time and I usually work longer hours and more days than I normally do. And if you have FASD, you KNOW that getting off schedule makes everything more difficult. I also take the bus back and forth between home and work – two buses each way, to be precise, and something I still find stressful because of all the sensory overload stuff (like….the smell of wet clothes on people that makes me want to vomit), and also having to deal with time (awful…..I still find it hard and really should write about it). I have to change buses halfway home. As I finally walked up the steps to my house, I realized I did not have my backpack on. I use my backpack as a purse and I ALWAYS have it with me and I was POSITIVE – and I mean 100% POSITIVE – I had it on the second bus, with my wallet, and other stuff in it. I told my Mom right away; she and I hopped in her car and tried to catch up to the bus, with no such luck. We went back down to the bus stop where I changed to the second bus in hopes that the bus would continue its route and come back. It did, but my backpack was NOT on the bus. I had lost my back pack with my wallet, and ID on the bus – someone had taken it. Because it was cold, I wore my winter Jacket and lucky for me, had kept my house keys, bus card and cell phone in the pockets.
Luckily, I had no money or credit cards in my wallet. Unlucky for me was that I had my Identification and medical card in my wallet and people can use that information to steal my identity. So, we went back home and filed a police report and spoke to an officer who was kind and patient with me as I explained my situation. He asked questions like “do you remember the bus route number I took, what time did I take the bus, and what stop I got off”. I answered all those questions. I could because it was routine and they have NEVER changed in six years. I told the officer I was 100% sure I had left my backpack on the second bus. It is what we call a community bus. It is much smaller than a regular bus and goes around more suburban neighbourhoods, instead of the big buses that take the main streets. Then, the police officer asked me for my address. I could NOT answer him. Why? Because I always look at my ID for that! Six years in the same house and I still can’t immediately recall my address! But I know where my house is. I explained to the officer I have FAS and that I can answer most questions , but other times, especially when tired or stressed like I was, recalling things like addresses or what happened first or when something happened, can be tougher (actually, pretty well impossible). The officer I talked with seemed to know about FASD for which I was grateful. He said thank you and was going to look at the cameras on the bus with the information I gave him and see what he could do.
Fast forward two days: I was going to work without my backpack, but happy because I had my bus pass! I got to work, went to the back room, hung up my jacket, turned around, and there sitting on the floor under where my jacket goes was my backpack!!! The one I absolutely knew I had left on the bus. The one with my wallet and all my identification I had reported stolen! It was sitting right there. It had been sitting at work this whole time!!! I nearly cried. I was so embarrassed because, once again, my memory for what happened had failed me. I called the police and let them know I had found my backpack and apologized for being mistaken about where it was (I actually got to talk to the same one again). He was very kind and said I should not worry about it.
And that brings me to the main point of this blog. Memory. That story is just one of many I could tell about how my memory works and doesn’t work. I swore up and down I had that backpack with me; I even remember playing with the straps waiting for the second bus! The truth was it never left work.
While everyone forgets the occasional thing or two, people with FASD forget things all the time. And while you might think it is something of a laughing matter, it’s NOT if you have FASD – because while it does not happen all the time, it happens so often that it can make life difficult in the extreme.
The problem with memory is that it needs to work automatically, on demand, all the time – every time.
But you don’t remember what happened. You don’t remember what it is you are doing – right in the middle of it. You don’t remember that you need to put the laundry in the dryer – or actually turn it on! You don’t remember if you need to eat. You forget to feed your cat. You forget to take medications – or you suddenly remember you “forgot” and actually take something twice. You forget to get your work schedule – or you write down the wrong one or show up at the wrong time – or you forget to even go to work. You don’t remember if you turned off the oven or locked the door. You are positive you paid your rent – but you didn’t. You lose things and have no idea where they are. And then…..sometimes, you remember things in great detail and stuff that is completely inconsequential that happened 5 days ago that everyone else has forgotten about. What do you think happens next? You get accused of making things up or lying because your story does not make sense or “add up”. People think your memory “is so good”. You become a victim of just about anything and you may not even know it. People take advantage of you. And the worst thing is……you KNOW you don’t know, or you forgot, but everyone else is sure that you do know, or could remember if you wanted to bad enough, and are choosing to be “irresponsible”.
I have learned I can sometimes laugh about the things I have forgotten or remembered later (like getting a blog done – in this case, on memory!!!) But only sometimes. Most of the time not remembering accurately can cause big problems and cause others to not believe me. The place I have found real support and understanding is from my family and from others with FASD who totally “get” it. That is essential to my success as an adult with FAS.
The thing about memory in FASD, that people who do not have FASD need to understand, is that the things we remember or don’t remember form our reality. And the “reality of our reality” is that these things will happen. And our reality may be 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 less stressful. And we would “know” what you “know” … we would be where you are and not usually in a different place.
I am self-aware enough to know the consequences of a “part-time memory”. Sometimes (or even often) our memory of an event is not actually what happened, and there can be consequences. Everyone who has FASD knows this and experiences it on a daily basis in some form or other. We spend a HUGE amount of time, energy and effort trying to remember. It is totally exhausting. If I need to do or say something, I usually need to do it “right now” (before I forget) … and unfortunately, that is not how most of life works. This, I think, is a HUGE – if not the biggest – source of anxiety for people with FASD.
The thing is, I know my memory is not reliable; I need someone else – someone I trust who knows me and respects me – to help me remember things, but that is almost always seen as a problem by people who do not know and understand FASD. I think they see it as “enabling”. People think there must be some sort of “fix” to this – that does not involve someone – a person – acting as my memory. Like making lists, setting alarms, using sticky notes, etc. (which I actually do, as does almost everyone with FASD I know … you have NO idea how pro-active we are). I have to remember to use them!! And that simply does not work if I need to do some sort of thing in the future (like in an hour or two) that depends on me remembering to do it – or not “forgetting” – I am not sure which is the bigger problem!! I would need to spend my entire day and night figuring out and then my stress level would get so high that it would make everything even worse. And… I HAVE to ask… what is wrong with someone I trust acting as my memory aid? What is the difference between that and eye glasses, a hearing aid or a wheelchair? Because there IS a sense of shame for “forgetting” and it IS seen as acting irresponsibly – sorry but it is – and that reinforces the “behaviour model” that people with FASD are so aware of. It becomes a vicious cycle of stereotyping and self-shame for not being able to “break” the perceived stereotype that this is “behaviour” and that is NOT accurate!!
I have discussed with my Mom and other people who have FASD about our fear of real-world consequences to a bad memory. It scares the heck out of me. For example if a crime was ever committed against me, would I remember accurately? I would definitely know that it happened, BUT the how and when would almost for sure get muddled, not to mention the details. I also know that if I reported the crime I would get asked questions, and depending on the questions could I give the right answer? Actually: what IS the right answer?? The problem is: who is going to believe me? What if it was a “he said, she said” story and the other person did not have an impaired memory? What if I was accused of a crime? How would I be able to” prove” I did not do it? I know people with FASD – including my brother – who have been in this situation and taken the blame for things because they thought they MUST have done it because someone said they did and they could not remember and even made up stuff because they kept getting asked. In one case, a teenager I know with FAS was accused of stealing at school and asked his Mother “to help me remember”. She asked him if he did it and he said “I must have – they said I did”.
These are not inconsequential worries; these are worries that not only I have, but all my friends with FASD also have.
Our ability to accurately remember things – in every area of our lives – ultimately becomes an obstacle to our success in life. The things we remember or don’t remember form our reality. If everyone would understand this, it would make a big difference to those of us with FASD.
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.
To read NOFASD Australia’s blog click here
i am a hoarder and i keep things for “proof of memory” like train tickets, letters, and now i am sorting through everything these “proofs” are reactivating my memory bank and emotions and reasons come flooding back. i am waiting to be tested for FASD. Thank you for this article.
Kara – this is from CJ
YES, YES, I know what you mean. I used to be and still can be the same way and had a really, really hard time throwing anything out because it was “proof” – and that IS the right word – of my memory – that something happened so I did not/would not forget it. Now – I am 36 – I take photos for “proof” – like of the bouquet of my best friend’s wedding so I could remember that I was there (and actually, the maid-of-honour). I need to have that “thing” that says “yes, that did happen, I was there”. If I don’t have the pictures to remember, then I can sometimes forget – pictures I can look at and remember. It is an “in-case” thing. I take pictures of anything before I get rid of it, like a childhood book. Maybe you can do that to, so you don’t hoard and you still have the memory?
Wow i never thought of this in this way but that is probably why its so hard for me to get rid of my “stuff” and why decluttering backfires on me when i do let go of something(s)
Kara, my daughter aged 12 had ‘hoarder’ noted in her end of year school report. I just couldn’t get my head around why the teacher would say that about a desk and few shelves! But this brilliant blog on memory and your comment is beginning to help me make sense of it. Diagnosed ARND, ASD and ADHD makes my daughters reality uniquely her own reality. Her memory box and simple reminders of past years has now taken on a whole new meaning. I’ve learned a lot as a parent and FASD advocate from this blog. Thank you.
Thank you so much for this blog! My 15 yr old foster son finally got diagnosed today with FASD, and after many many years of trying to explain the severity of his issues to others, your blog has described him perfectly! I could never describe to others his severe memory issues, and it feels so good to finally have others who can totally relate! I’m much more excited over this blog than my son, but I need to say thank you a million times…just wow