The Yucky Part.

A terrifying thought creeped up to my consciousness today – a truth that I try mightily to keep buried deep down – but it is a realization that I need to come to terms with sooner or later. It pains me to even type this, and is even more frightening to share this in such a public forum as I am typically a very private person that would prefer to laugh about this absurdity than engage in an emotional exchange about this incredibly serious situation. 

This is it. This is as well as I am ever going to hear for the rest of my life, in this very moment, because tomorrow I could wake up and more of the already fragile nerves deep inside my ears may have deteriorated further with no chance of recovery. 

 I am not going to get better.

This is the ugly side of having a physical disability – the anguish, intense pain, fear, anxiety and sorrow.  This is not the side that I show to the public, and have spared many people close to me – because it is uncomfortable.  It leaves me open, broken and vulnerable which is not in alignment with my headstrong “alpha female” personality – but I have decided that the time has come to unveil the “yucky parts” of my experience as a disabled person.

As you read this, you may feel uncomfortable by the unveiling of such intense actualizations because you are “typical” or “intact” and cannot relate to my experience or the experiences of others with physical disabilities.  Instead of confronting and acknowledging the fear and emotional toll that this physical disability takes on me, you may prefer to remain in your position of holding me at an arm’s length and admiring from a distance as though I am a museum piece to be marveled at as opposed to be understood.  You want to avoid the deep dive into the discomfort, the emotions, the internal battle – you would prefer that I remain an inspiration, a disabled person to be praised and held in high esteem in all I have achieved with this disability.

I hide my fear and sadness behind a million “tricks” that you may not even realize I am doing with such accomplished sleight of hand.  For example, I may beg off and leave a neighborhood party claiming that I have school work I need to finish – when, in reality, I am noticing that voices are becoming harder to hear and with the sun setting, the light is dimming, and my lip reading accuracy is going to diminish quickly as the sky turns dark – so best to leave before I become frustrated.  Or, I may decline a social invitation to an event I would have liked to have attended but the anxiety of meeting new people and having to explain how best to communicate with me just feels too enormous. I may busy myself with a book or become overly interested in reading an article on my phone in a crowded train or restaurant to avoid interactions with others in a public space because the noise is too loud and the environment too chaotic for me to manage.  The list goes on and on – with new routines being added to my repertoire as my hearing declines.

I dread taking my hearing aids out at night now – I have minimal residual hearing left without my hearing aids inserted and turned to the “on” position.  The world is quiet for me now – too quiet. My mind, which should be quieting down and preparing for rest – suddenly starts humming and buzzing at a faster clip than you ever realized possible because the reality has hit once again – you have lost more noises.  You can no longer hear a door slam, or the floor creak, or the faint buzzing of an alarm clock. As the buzzing and humming in your brain begins to crank with increasing rapidity, your heart rate begins to climb and your anxiety about what is happening biologically inside your ears comes to the surface – you fight it all back, once again, desperate to not confront this monster hiding under your bed – not tonight.  The bees swarming around in your mind continue their steady hum long after you have distracted yourself by putting a load of wash in the washing machine, paying bills, or rearranging the toiletries on your dresser. There are just some nights when nothing helps stop the forward march towards your very uncertain future.

No one talks about what happens next – I don’t even want to talk about this, because it is an admission of fragility – but the tears start to fall.  The ugly cry. That heaving, wracking, sobbing, red faced messy crying because you are beyond overwhelmed and terrified and there is simply no other release to allow even a momentary freedom from the terror of losing your hearing completely.  In a matter of moments, my eyes are dry and caked with salt from my tears, my face is blotchy, red and hot to the touch – (and, admittedly, on a particularly dramatic day I may throw my arm across my forehead and feign a fainting spell). It is just awful, heart wrenching, and unpleasant – but surprisingly cathartic at the same time.  

It’s awful.  I have tried to keep these meltdowns when the inevitability of my world becoming silent feels too much to bear private, but it is time for it to come forward and be made public because the truth of the matter is that I am scared to death.  I am petrified. I feel isolated and alone – and I can no longer keep up the facade that I have maintained for the last 45 years that “all is well” and my hearing loss is “no big deal”.

I am not going to get better – but I am going to be fabulous.

(And so help me if any of you interpret this blog post as an invitation to my “pity party”)