What is it that makes us who we are?

It’s often argued that the self is socially constructed, developed through the interconnectedness of the various aspects of the society in which we function. More specifically, the self could be seen as a complicated jigsaw puzzle of how we’re parented, our schooling, our social interaction with family and friends, and all our other life experiences.

But what happens if pieces of the puzzle that’s been created start to disappear? Are we still ourselves if we forget some of the bits that make us who we are?

What’s brought this to mind is my dear friend Mil. For a while she’s been getting more and more forgetful. But until fairly recently she just found it an inconvenience, something that could be considered an inevitable consequence of ageing. It was mostly variations on a theme of oh-dear-where-have-I put-xxx and not a cause for undue concern, she thought, considering that we all do that sort of thing sometimes.

Then suddenly great big gaps in her memory started to appear, seemingly overnight. The gaps seem random – her birthday party a couple of months ago, visitors from overseas last year, a tragic death in the family a few years before that, her youngest son and his family coming to stay last Xmas and a number of short-term gaps as well. Most worrying is that, despite visits to the hospital, consulting a neurologist and all manner of tests and scans, there appears to be no specific or discernible reason for it.  So there’s no clear diagnosis, just a great deal of confusion and worry.

Talking to her, I’ve realised that Mil feels as though she could wake up on any given morning and another little chunk of what makes her herself might be gone. Another memory – big or small – could have disappeared and, until told otherwise by family or friends, it will be as though the event never happened.

More frightening than the actual memory loss, she says, is the randomness of it all. For someone accustomed to being in control of her life, to planning events and taking an active interest in the world around her, who values logic very highly, this is a very scary place for Mil to find herself.

No matter how much I think about the situation or read up on memory loss, I find that I end up with more questions than answers. What does one do when events, days and years start to fizzle and disappear?

Standard advice seems to be to plan ahead once a diagnosis is obtained. This includes legal, financial and health planning. But the path to diagnosis, to discovering choices and to possible treatment seems to take so very long.

Starting to keep a journal seems to have helped. Mil’s found that simply making a note of things as they happen or writing down how she’s feeling on any given day provides her with reference points. When she pages back, even if she’s forgotten the events, she feels she can trust the words on the pages. She can see that she’s written them, even if she can’t remember having done so, and that distinction makes a big difference to her.

I find that this puts my years of intermittent journaling into a new perspective for me. Perhaps I’ve always been writing for a future me, providing myself with trustworthy breadcrumbs back to a past I’ll very possibly forget one day.

Perhaps it’s something we could all consider doing. That, and making sure that every year we have is as good a year as we can make it.

The harsh reality of having a pet in one’s life is that they will almost certainly die before you do. I am told that dogs – my preferred household pet – sometimes live up to 19 or 20 years and can be hale and hearty for most of their lifespan. My experience, however, has been that 10 years is the best that one can realistically hope for. This indicates a clear need for acceptance and understanding of this outcome from the start in order to minimise emotional upsets further down the track.

Advice of that sort sounds sensible and is easy enough to give, although implementation can be a tad more problematic. What seems to happen in my case is that pets come into my life, become part of my family and that I give little thought to their possible or probable demise. I/we feed them, walk them, take them with us to the beach and on holidays, make sure they have regular checkups at the vet and that they get their inoculations on time. In short, we simply live our lives and enjoy the companionship they provide.

In due course, however, some or other event catches up with us and brings home the stark reality of their relatively short lifespan. In every case this has left me saddened and – in some cases – quite bereft. Looking back across my life, I remember each of my furry buddies – and the gap they left when they died. Time eases the ache and new furry friends come into our lives, but I’ve found that it’s impossible to simply replace a friend with another friend.
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Most recently Nuschka came to us. She was two years old, seemed fit and healthy and was in need of a secure home. We all thought she’d be with us for a long time to come and incorporated her into the family post haste.  In the yearn that followed we had a lot of fun together, but there was also a good deal of dog stress – low levels at first, but mounting over time to quite significant proportions. After months of her suffering chronic diarrhoea, numerous vet visits and all manner of investigations, we agreed to a procedure called a fecal microbiota transplantation (FMT) for her in mid-December. Essentially this involved surgical intervention to empty her intestine and bowel and to then repopulate them with healthy bacteria. At the same time biopsies of her gut and intestine could be done in order to eliminate cancers as a possible reason for her ill health and to establish whether there were any other issues.

We brought her home after her surgery and, although she was clearly happy to be at home and pleased to see us, after a week she had lost weight, was vomiting and dehydrated. Despite  calming words from the vet, we rushed her back to the surgery at 3am on Christmas Eve. The week that followed was spent waiting. We waited to hear from the vet each day – and each day brought no new plan, no improvement and no clear idea of any resolution. The biopsies had shown that she had both inflammatory bowel disease, as suspected, as well as lymphangiectasia – a chronic and pathologic dilation of the lymph vessels.

We finally ran out of options just before New Year.  The surgery was very busy when I got there to see her and we ended up sitting together in a back room, my Nuschka and I, until our turn came. She was so happy to see me, her great plume of a tail swishing back and forth as she sniffed me and licked my hands and face. We sat there for four hours, cuddled up on the floor, my hand compulsively stroking her as I talked to her. I think I even dozed off with her at one point.

In due course the vet came back to give the lethal injection via Nuschka’s intravenous drip, after which we just sat with her as her life slowly ebbed away – and then for a while longer, chatting quietly about dogs and loss and life. This was the final thing I could do for my girl – to be there and take responsibility for my decision to end her life. Even though the decision was certainly in her best interests, I could not leave the implementation completely in the hands of others. She was my responsibility, not theirs.

It’s hard to sit by and watch a beloved family member fade away – but it is much harder to watch them suffer, particularly when there is an alternative. By the time I got home I thought I was all cried out – but I was wrong, apparently. Dear Nuschk – what a damn shame it ended up this way.

I must admit that I’ve never actually thought ‘there must be a German word for that’ – but that changed when I came across a copy of a highly entertaining book by Ben Schott this weekend. Courtesy of Schottenfreude I suddenly have words for a range of weird and unusual situations – and feel almost sure that there’s a word for being happy about that too. Amongst my favourites in the book is entlistungsfreude (the satisfaction achieved by crossing things off lists). Although this does bring strange little Miss Hawkins in A Five Year Sentence (Bernice Rubens) to mind and make me feel mildly anxious about the times that I write things onto lists just in order cross them off… But we’ve all done that, right?

Last Friday I really needed a word to encapsulate that moment when the world slips out from under you – and now I have leertretung (pronounced lair-treh-toong). Schott’s definition of this is to step down heavily on a step that isn’t there or, even more appropriately, void-stepping – which fits the bill perfectly.

It turned out to be quite a void-stepping sort of day, starting with the moment I clambered down my little kitchen ladder onto a step that wasn’t there. Technically it was actually there, I just managed to navigate right past it and indulge in a quick leertretung to get my heart rate up. Schott probably has a word for the sound I made as I hurtled to the ground – and for the one I made when I landed with a thud loud enough to bring the dog running, but I haven’t found them yet. I do know the Anglo-Saxon equivalents, though, and that’s probably good enough for all practical purposes.

Having fended off the worried dog and rejected her friendly are-you-okay face-licks, I pulled myself together in time to field a call from my mother-in-law. The news was that her lovely daughter was finally about to lose her battle against stage IV melanoma. She told me that Aj was fading fast and it would very probably be her last day with us. I don’t recall putting the phone down or walking to my study or dropping onto my desk chair to gaze vacantly and tearfully out the window, but that’s where I found myself a little while later.

We all provided what support we could throughout the day/evening, but there was really nothing anyone could do and Aj passed away at home on Friday night with her family nearby.

Is there a German word for coping with a sudden unexpected surge of sadness? Would knowing it make me feel any better about the loss of this vibrant, quirky young woman who has fought the melanoma monster so valiantly for the past two years? I think not. But knowing it might distract me for a brief moment. Perhaps void-stepping is descriptive enough, encompassing that feeling of disorientation and unexpected panic when the thing one expects to be there (a step, a family member) simply isn’t.

My heart aches for the loss this family is enduring. Aj was a wife, a mother, a daughter, a sister, a friend. As a mother myself, I can only begin to imagine the complex layers of sadness, pain and regret at the loss of a child. They remain our kids even when they’re all grown up and have families of their own – and it defies logic for them to die before we do. I don’t have the right words – or enough words – to express this kind of sadness.