Who Am I Now?

When I tell friends that I’ve started blogging, they naturally ask what exactly it is that I write about in this little corner of the internet.  And I find it quite difficult to answer.  Is it disability?  Yes but not purely.  Is it mental health?  Yes but not purely.  Is it emotional gubbins?  Yes but not purely.  Because this is deeply personal to me it’s hard to come up with a pithy one-line answer.  As the blog subtitle says, it’s more complicated than that.

If anything, the closest I can get to it is to ask what started this process in the first place.  The relationship I have with my disability – and the fact that it has changed.  And because disability is such a central factor in my day-to-day life and affected so many areas of my existence, that change has followed in the same way.  It gets everywhere.  I find myself with some really profound identity issues and questions.  I used to feel secure in my disability, it was sorted, it was settled and I knew where I was.  I don’t any more.  And although I’m starting to realise that these are acceptable questions to ask,  I increasingly find myself asking “Who am I now?” 

I’ve never seen myself as an angry person, I’m certainly capable of it but not as a habitual response, but as my previous blog post may have shown, there is a strong element of that surfacing over recent weeks and months.  I used to feel that I ‘just got on with things’, my bloodymindedness and determination were often remarked upon as I was growing up.  And now, while not all of that has dissipated, I see some of those thought processes as empty echoes that ring hollow.  I used to feel that my self-image was stable, not something to worry over, something positive, and now I find that this was often an unintentional front for nearly three decades’ worth of internalised ableism.  I used to feel that my body worked to it’s best ability and was unfazed by my limitations – now I too often sit with a body that feels ready to retire.  And that is an absolutely crushing thought to carry.

These are broad themes, there are many further examples of this shift in thinking.  It is often a thoroughly disorienting place to be.  It is a strange experience to ask oneself, “Who am I now?”

That central question of identity is very much at the heart of all of this.  The fact that there is no apparent road map for someone who suddenly finds himself unhappy with a disability he has always known, what do you do when you recognise that change?  That feeling of change that leads me to say, yes, actually I would take the miracle cure if it came around tomorrow – to even have that thought feels such a betrayal of the positive image of disability I’ve done so much to get behind and push.  It is such an alien feeling.  Who thinks like this?  I have written before about why I don’t see this as depression , but another striking difference between this feeling, and that of the creeping black dog is of endpoint.  Even when I’ve been at my lowest, most depressed, suicidal points both in and out of therapy, I at least could describe a hypothetical recovery – even when I didn’t believe such things were possible.  I at least knew what it might look like.  With this shift, I’ve noticed that even though I trust the therapeutic process enough to feel that I will eventually come through this, I cannot visualise in any way what the endpoint for this new sense of identity around my disability is.

Not only do I have the question of “Who am I now?”, but also that then begs the question “Who am I becoming?”.  Not necessarily unpleasant questions, but at times deeply unsettling ones.  I don’t especially like how I see myself right now, but being aware of the sense of movement doesn’t always bring comfort.  As humans we like to know where we stand, it’s why so many depressives struggle to recover – the depression becomes well-understood and therefore safe, in a world that doesn’t always make sense.

We live in a culture where we are so often defined by roles, by identity, by a sense of who we are.  It is deeply weird to feel untethered as I do right now.  In so many areas I am healthier than I have been in years, more productive, more open, more outgoing.  And yet I have seldom felt more of a sense of being at a loss.

Who Am I Now?  Where Am I Going?  Where Am I Going To?


2 thoughts on “Who Am I Now?

  1. Lots of questions here which cannot have answers, because it’s about you, and only your future will tell- and none of us have a definable “endpoint” for who we might become, so there’s no need to rush it. Other conditions in which people feel “untethered” are loss of a lifetime’s career, loss of a partner through death or divorce, miscarriage, accident etc, so to some extent we all have experience of this feeling. But these are temporary, and you are stuck with your disability. You are trying to come to terms with a challenge that’s always been there for you and will remain. To be happy, or at least content, instead of fighting it, you will have to accept that your disability is going to be tagging along with you. But it is not YOU. It does not define the “you” that your friends and family know and love.

    You’re not being unfaithful to your disability to wish it away with a miracle cure either. You can be as rude to it as you like. You haven’t promised to love it and cherish it as long as you both shall live.

    A thought on “inspiration porn” which occurred to me today: people can be inspiring in many different ways, but that does not mean we have the right to expect inspiration from them, either constantly or even occasionally, as though they were film stars we’d paid to see. Perhaps you are trying out for yourself the idea of “not being inspiring”, so that nobody has any expectations of you? That’s fair enough, if it’s too heavy a burden to carry. Why should you have to work at being inspiring when you’ve got such a lot on your plate? Think of any inspiring person of your choice, and they’ll have a dark side. The pressure on a model to be super-slim, on a priest to be celibate, on a children’s nanny to be always patient- it can be too much, and their Fall (your well-chosen word) is the result of being “fall”-ible humans, subject to stumbling.

    My recipe for the “untethered” periods of my life: cultivate old friends and make one or two new ones who can lead me in unexpected directions. Be kind to myself (that means not beating myself up about what might or might not be my fault), read what I want to read, listen to music I like and not care if nobody else does (I here confess to loving Country music), do lots of whatever makes me feel most like Me (in my case painting), learn to enjoy being alone but also spend plenty of time with people who make me feel good about myself and only minimal time with people who don’t. Allow myself to rock with the rhythm of the waves, leading me to a shore I can’t yet imagine, because the journey is the point of life, not the destination.

    In all cases of doubt and un-tethered-ness, try Kipling’s “If”. And if that doesn’t appeal, reverse the letters of the title to “F*** I*”. Good luck with either, or even both. Both is good fun, when you learn to enjoy riding the waves.

    Liked by 1 person

  2. humanoidkintsugi, I appreciate your honesty and authenticity and maybe because I’ve struggled with some similar challenges over the last several years as my chronic pain has become worse and rendered me vulnerable to certain aspects of our current societal atmosphere. I agree wholeheartedly about the disability inspiration porn. In fact, since I don’t appear disabled – The more vulnerable I’ve become the more insistent people have become with their various forms of patronizing inspiration porn of all kinds.

    Too much pain and related brain fog to say anything witty but wanted you to know you have my vote of confidence.

    Liked by 1 person

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