Reflections

I'm often asked what it's like coping with my condition and the consequences it has on my life. Obviously words like frustrating, painful and frightening come straight to mind but the emotions involved in having your world turned upside down by sudden, debilitating, incurable illness are far deeper and complex.

 

To be honest I think the best way to describe it is like a silent, unseen bereavement. That may sound rather extreme but when everything that defines who you are is suddenly, unexpectedly taken away, the person you were effectively dies in that moment. Yet nobody notices. Nobody grieves or mourns your passing. There's no acknowledgement of your loss. You're still here, so nobody notices that you feel empty and dead inside, little more than a shell of what used to be and what was yet to come. Nobody sees the light in your eyes go out as you watch one dream after another being yanked from your grasp.

All the familiar things in your life disappear. Even things that you took for granted, like walking up stairs, making a cup of tea, getting dressed or showered yourself or going out alone are suddenly major achievements or, worse still, utterly impossible. You go from being an independent person in your own right, to having your identity absorbed in to someone else's life. No longer in control of how, when or even if you can do things anymore.

Until it happens you can't begin to imagine what it feels like to have every last scrap of your independence and identity taken away. Everything that made you the person you are, gone forever. Leaving you lost in the body and life of a complete stranger, with a new, unexpected and unwanted life to build from scratch.

As a writer I don't normally do poetry but I wrote this a few years ago to express the emotions of living with my condition and it's many consequences on my life. I hope it gives you a little insight into the many life changing aspects of my condition but also my determination to overcome as much as I can & rebuild the best life possible for this 'me'.
 

Reflections

When I look into the mirror, who is it that I see?

So many different faces are looking back at me.

There's the person that I used to be, so full of dreams, so free,

Not knowing what the future held or how different it would be.

 

The me who used to be healthy, the me who used to ride,

The me who lived at full speed, took all things in my stride.

That me now gone forever, the me that's lost for good

The me new friends would never guess, was ever flesh and blood.

 

There's the me that fought to stop my dreams from dying one by one,

Who strove to hold on to the past, who battled hard and strong.

The me who cried myself to sleep, trying to comprehend

How everything that defined me could come to such an end.

 

The me that hoped this would go away, that one day we could treat

The dreadful beast that hit me and knocked me off my feet.

That me who searched for answers from medics of every kind,

The one who fought so hard to prove, it's not 'all in my mind'.

 

The one who firstly was relieved, when diagnosis finally came,

But far from bringing answers, it just gave the beast a name.

The me who then had to come to terms, with disability and pain

Incurable, untreatable, I'd hear once again.

 

The me that baffles doctors now, who keeps them on their toes

With surgeries aplenty, to patch each part that goes.

Ruptures and subluxes, braces, pills and sticks

Are all a part of daily life, for the me they can not fix.

 

There's the me that finds it hard sometimes to face up to my fears,

Who struggles to get through those days without shedding any tears.

That me who simply has to shout, who has to scream and cry

When I don't know what scares me more, to live in pain or die.

 

And the me that people expect to see, the one who says 'I'm fine'

Who never shows quite how she feels, who doesn't whinge or whine

The one who's told 'You are so brave, a courageous inspiration'

Whilst holding all the pain inside, the anger and frustration.

 

There's the person that I'll never be, the one I dreamt of being

So many aspirations I've no longer hope of seeing.

Lastly there's a determined me, who'll always put up a fight

To make the best I can of life, chase dreams still in my sight.

 

So when I look into that mirror, who is it that I see?

Do I even recognise this person that meets me?

I'm all these people and much more, I'm everything they've made me

But most of all, I realise, I am the person I can yet be.

Johanna H x