In one of my favourite books, The Life of Pi, the author writes about fear.
He says, “Fear is life’s only true opponent. It is a clever, treacherous adversary. It has no decency, respects no law or convention, shows no mercy ....you must fight hard to shine the light of words upon it, because if you don’t, if your fear becomes a wordless darkness that you avoid, you open yourself to further attacks because you never truly fought the opponent who defeated you.”
Here are my words to fear.
I haven’t seen you in a while, but when I do, you usually creep up on me unannounced. It’s often first thing in the morning on waking.
My bleary eyes and mind already focusing on what the day holds, are totally looking the other way when you pounce.
I’ve even gone as far into the morning as having had a shower and got one leg into my tights when you strike and knock me off balance.
You start with an unnerving quelling in my stomach, spreading quickly to my chest and then your icy cold fingers grasp around my neck.
You poke my adrenal glands and release a spike of Cortisol like a double espresso shot. My mind quickly jerks back from thumbing through the mental diary and list of jobs and recoils in horror remembering the last time we were here and how awful it felt.
I battle with you, try to deny your hold and pretend you are not there, but it’s futile, you know I am lying.
I can’t remember inviting you into the room, much less find an explanation for your visit. I am frozen to the spot, under your spell and struggling like a fly on its back.
What have I done, thought or said this morning that summoned you, what triggered your appearance?
I frantically try to remember, to retrace my thought steps to find that exact point, because if I do, I think that I’ll be able to expel you from the room.
The relief will only be temporary however, you’ll be back but please give me a break today, I have things to do. I must be able to do them without you hanging on to me.
There are many things that I fear, most parents do but especially perhaps those of disabled and special needs children.
The biggest one for me is ultimately death.
Death of my child, my own and husband’s death, my Mum’s death.
All of these grim reaper moments trudge around five paces behind me wherever I go, but I can’t do anything about them except care the best I can for my loved ones and take good care of myself too.
These are inevitable fears, as eventually it will happen to us all, but I bargain with Fear about the when and the how as if it or I have any say in the matter.
I fear the future too, what will we do if Lucy never walks? How will my husband and I cope when we are seventy and handling a disabled woman instead of a child?
Will my precious daughter be safe, at all times and will others caring for her do so as carefully as we do?
My throat swells up with the mere thought of it, but sometimes I voice those concerns. If I don’t then they just add to Fear’s power. They become all consuming and part of everyday life, even when everything is going well. They threaten to spoil the beauty of the here and now by pretending to be predictions of the future.
I am naming and shaming you Fear, publicly.
You visit others and probably have similar tactics and effects. I’m fairly sure you turn up as the uninvited guest at other people’s kids’ birthday parties, and at anniversaries or milestones.
Like the year we became seizure free, instead of a celebration you made it a ticking time bomb.
You walk hand in hand with negativity, but sadly you justify yourself with experience, of your own and others.
You pretend to be the voice of reason, the polar opposite to hope, but you are just a kill joy.
However, you don’t own me, or others. If I talk about what scares me you are out there in the open and revealed.
If I share my worries with friends in similar situations to myself, you have no hiding place for any of us.
You may still creep up behind me sometimes and catch me off my guard, but you will not conquer me.
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