In my mind, I am a fully-functioning, normal, independent and oh-so-sexy, confident woman.
The sad truth is that: I’m not. I’m not. I’m not.
The agonizing reality is that I have a beautiful, free, soaring, independent spirit which is cruelly trapped and confined inside of a pathetically, needy, dependent body. *Scream*
A vicious punch-in-the-face moment this week, confirmed it, once again.
I woke up to the quiet murmurings of my care assistants in the room next door. It was still pitch dark. But, it’s midwinter and even my usual 6 AM get-up-time is still dark, and cold. Somehow I just sensed that it was still too early.
The radio was on.
Sometime during the long night I had asked my care assistant to put it on because I couldn’t sleep. The enforced silence of the dark night, for hours on end, is not only physically uncomfortable when you cannot move a muscle but, psychologically, sometimes it is close to intolerable. Often, I just need a distraction from my ridiculously overactive mind. Believe me, the pleasures of mental agility are much over-stated by those not exclusively dependent upon them. The radio can act as a perfect diversion from my soul-destroying-negative thoughts in the dead of the night.
I must have fallen asleep again, thankfully.
I craned my neck and my digital-alarm-clock-radio confirmed that there was still an hour to go before my care assistants were expected to get me up.
I was immediately annoyed and irritated that they had woken me up because now I would have to lie there and wait for them. That sixty minutes can be excruciating. It’s not like you lose the desire to stretch, yawn, throw your legs over the side of the bed, sit, stretch some more, rub your eyes and then get up. It’s just that when the urge comes over you there is nothing – nothing – that you can do.
So, I lay focusing on the radio, listening to my care assistants getting themselves ready, fighting my frustration of not being able to get up into my wheelchair and waited. Waited. Waited.
At last, the door opened. I breathed a deep sigh of relief as I heard my care assistants coming into my room.
If the prospect of being transferred into a wheelchair lifts one’s spirit, it has to say something about the loneliness and gloom of the night’s journey.
I turned my head to greet my care assistants. I immediately noticed that one of the ladies was not in uniform but rather in the same smart clothes she had arrived in the day before. Oh no!
What’s wrong? I asked her anxiously.
She knelt down next to my bed to explain.
Her nanny, who was allegedly taking care of her nine-month-old baby, had called earlier to say that she must meet her at the police station at 7 AM and take her baby. She needed to leave immediately.
I begged: Oh my God, please don’t do this to me. Please. Please. Please.
I desperately pleaded some more: How am I going to get up? I need to get onto the commode for my bowel routine and shower. Then, I need to get onto my wheelchair. There is no way only one lady will manage to do all that, on her own, especially with the severe spasms my body is experiencing at present.
She said: I know. And I’m sorry. I really am. But, I have to go.
And she left.
Feeling mortified, I broke down, crying hysterically.
I was angry. Not at her. Okay, yes, I was mad at her – dammit!
Although, deep down, I understood.
If it had been my baby, I would have done exactly the same thing. No doubt.
I was still enraged but, more so, by my entire dismal situation.
I don’t know when last I felt such despair – so vulnerable, weak and helpless. I cannot put down on this page my exact thoughts, for fear of hurting the ones I care about most.
I had this overwhelming need to tell someone, to share my pain, my dilemma. I asked my remaining care assistant to help me call Roy. I cried as I related the story to him. I could hear his concern as he tried to comfort me. I knew that there was nothing he could really do but, I was just grateful to have had his ear at that ridiculously early hour.
Immediately after the call I was overcome with guilt. Why had I burdened him with this, knowing that he was so far away and that he would be worried about me?
I ran through my long list of friends in my mind. Who could I call to come and help?
Everybody has a family, a husband or partner, children, work, responsibilities. I know that any of them would drop everything and come at a moment’s notice but, I just couldn’t call. Something – pride, dignity, guilt, self-doubt – I don’t know – prevented me from reaching out in my time of need.
Helplessness is humiliating. Even, in a passing crisis. Imagine or recall some occasion when you have fallen down or required assistance from strangers or even family or friends. How embarrassing! Right?
So, I just lay there and sobbed. And sobbed. And sobbed.
The tears, stinging my cheeks and flooding my ears seemed to have no end, causing me to wonder if my brain had perhaps melted and the fluids were escaping through my eyes.
I felt so abandoned. Just imagine not being able to get up in the morning, go to the loo or take a shower.
Like Tony Judt once said: Being paralysed from the neck down is like being confined to a cold, unforgiving iron suit. I’m motionless like a modern-day mummy, alone in my corporeal prison feeling like nobody really understands.
Eventually, I pulled myself together, knowing that I have faced this challenge before, and far worse, and I coped. You can do it again, Tracy.
Living alone and basically being at the mercy of care assistants whose first priority cannot really be me, is often daunting but I wouldn’t have it any other way, unless, of course, a drop-dead-gorgeous man with sexy legs came to my rescue.
Anyway, I put my mind, what was left of it after the melting episode, into proactive mode and made one phone call to my Dad. Speak of humiliating!
He was here within 45 minutes to just help my care assistant to lift me. I was got up, dressed, hair and makeup done. The bits in-between are incommunicable.
I put on my brave face and started making some phone calls. By lunchtime I had a new care assistant. I’m not sure if she’s the right person as she is a little overwhelmed at present but, at least, I have two pairs of hands today. If she runs away, that’s another day’s problem.
One day at a time. That’s the only way I know how to deal with this.