I have an uncanny ability to forget things and I have started to think of this as a strength.
It was never glaringly apparent to me before, but more obvious to me now as the mom of a child with a rare disease who has seen my young daughter go through more things medically than anyone else would see in a lifetime.
Don’t get me wrong. I do remember things. I have ‘snapshot’ images from my youth, I remember stories/situation/anecdotes of things past. I have strong memories of my first days of Grade 3 as a new student to the local elementary school, I remember ducking out of the Grade 6 vaccination schedule (I hate needles), only to be taken to the public health nurse by my dad some few days later. I remember details about my wedding, pregnancies (oh the nausea!), and delivery of my children. Many of my memories are so vivid that I feel I could reach out and touch them – that I can sometimes even still feel them (like that very first marathon I ever ran and the last 8 kilometers). And I can function day-to-day and I remember meetings and appointments (thankful for my calendar), and I can function at work and remember important tasks/to do’s (if they are written down). Technology has been a huge help as well and I am a consummate list maker and post it note sticker.
I remember a lot about the journey (so far) with Kate as well. I remember great detail about stressful ED visits, medical discussions about her care and management, treatment/medications/care protocols that we are constantly trialing, setting aside, trying again (but in a different dose this time), visits for second opinions, third opinions, fourth opinions. I remember hospitalizations and particular conversations in the wee hours of the night with nurses, medical students, residents, staff physicians, specialists, technicians, pharmacists etc.
What has become clear to me though is that I categorize and prioritize these memories, and that I don’t remember everything. Some memories are much more present to me and able to be recalled easily and with excellent detail, while others have to be coaxed from me – usually by my husband or someone else who collect memories and seem to forget (or file away) nothing.
I am often amazed by other parents – fellow bloggers – who can tell a particular story about events past with such vivid detail and description. Could I do that? Yes, if I had my notebooks to refer back to, and took a lot of time to reflect on the moment, to really tune in to the memory to truly recall what it was all about, and maybe asks others who were there what they remember. So yes, I can say ‘yes’ but with careful reservation, because I honestly don’t remember everything in great detail. Conversations with my husband will remind me that there are many things I do forget – things I have simply not held onto that he remembers vividly and clearly. (He has a real skill there – often noted by others).
There was a point in the past few years where my short-term memory for usual life events and information shared by others, I was unable to retain. It almost became a bit of a joke, that people who knew me would ensure they followed up with an email as I would forget details of conversations or phone calls. I would also excuse myself in certain situations when would repeat a conversation or forget one that had happened only just recently – having forgotten the topic had already been discussed, but recognizing on the persons face that yes, we had indeed talked about such and such before. I have even come to the point of excusing myself in advance, telling people, “You know I will forget this”.
Interestingly enough, people seemed to understand. I simply explain that my ‘brain is full’. I have so much ‘Kate’ information in my head that there is room for nothing else. Not only is there ‘room’ for nothing else, any attention to creating new space for short-term memories is taken up by the persistent buzz of thinking about Kate all of the time, even when I am not thinking about her consciously.
It’s true, even when I am not thinking about Kate thoughts about her are constantly present. I am forever analyzing her status – how is she feeling – is she well – does she seem pale – was that a tremor or an absent seizure – does she seem more fatigued today than usual. If I am not analyzing her status, then I am thinking about her care management – did I make the order to the pharmacy for her medications – how much of her other medications do I have – have I followed up with occupational therapy, physical therapy, auditory verbal therapy, orthotics – did I cancel the appointment with neurology and reschedule – when was the last time she was seen by developmental pediatrics and should I make an appointment. And on it goes.
Then there is the decision-making – impossible to do with a child who has an extremely rare disease as there is never enough concrete information and the variables you have to consider when making medical decisions are like moving targets. It takes a lot of space in one’s mind to consider – reconsider – decide (somewhat) – backtrack – search for new information – weigh everything again – consider – come up with a new way to consider etc. (you get the picture).
So I have come to the realization and conclusion that NO WONDER I HAVE NO SPACE IN MY HEAD. There is nowhere to store anything in there at the forefront. Anything that is stored that is marked ‘non urgent’, goes to the back of the bus and hopefully I can recall it when prompted. My short-term memory is taken up most of the time. It is FULL.
Some might consider this normal and not a big issue. Of course there are ways around it – write things down (I do) – be very organized (show me a special needs mom who is not!) – double-check everything (check!) – have friends follow-up with email or a phone call (they do). What makes me think about my ‘fine-tuned’ memory is what other memories are getting caught up in my ‘not remembering’. I am prone to forgetting about special and important moments too. Am I holding onto happy moments or am I equally forgetful of those? Is my focus on moving forward and pressing on affecting my memory and ability to reflect on happy past? Am I not living enough in the past?
Is this a bad thing?
I don’t think it is. I’ve come to consider my memory retention as perhaps a bit of blessing. While I am forever change by the incredible events and journey related to caring for Kate, I don’t carry with me memories of every single moment – at least at a conscious level. I am able to prioritize and keep focus on what is relevant and important for her medically in the here and now. This helps me to stay focussed and makes me an even better special needs mom to Kate, a better care coordinator and medical advocate for her. At the same time I wonder if it offers me a certain amount of protection or insulation from the painful memories that I do have – and are sure to cling to me in some way. Maybe not remembering it all is a safer way for me to be able to take it all in – over and over – as happens with a child such as Kate. I know that we have all been through a lot of trauma, and that the soul needs time to heal and distance from the memories, and maybe that is what my mind is doing – prioritizing and protecting. There is often some light joking about ‘post traumatic stress’ among the medically fragile, medically complex parent community. Some of the events we have had to deal with alongside our children have marked us forever. So yes, maybe it is protection – this memory like a sieve that I have. I’ve learned to cope with it and appreciate it – and am starting to wonder and believe if it might be one of my greatest strengths.