It's like a toothache. You can't escape the constant reminder of your loss. You have to be busy with an objective, a goal. This replaces the opportunities to think about your problems and forces you to concentrate on work.

Living a disabled life is like walking across a never ending dessert. You can't stand still, it's a constant battle and there's little sign or hope of relief.

On this journey you meet many. Some will walk with you and keep you going most will be distracted and leave, despite promises. The traveller has to keep walking. The choices are limited and pleasures few. Hope, faith and love are your true friends. Never rob or deny another any of these.

They can't see

They tell me we are all just animals underneath
They tell me that basic needs and desires drive us
They tell me it's normal

They don't tell me how to deal with the empty nights
They don't tell me how to feel a loving touch
They don't tell me

They can't understand the loneliness
They can't comprehend the emptiness
They can't see my body is longer my friend

They can see but they can't see me.

My early letters contained this (November 2003) as part of a letter to friends and colleagues.

FACING REALITY

Facing reality. A phrase we all use at various stages of our lives. We use it to give us resolve. To clarify our options. To justify our choices .

Often we combine this with the sentiment, "at least we don't have it as bad as ..." and make reference to someone we know in a worse state.

We might adopt a more optimistic stance and count our blessings. With words like "at least we still have our health ".

Some of us simply can't deal with reality and prefer to ignore it. Does it exist if I can't see it? We try to "sleep" it off, in the vain hope it will go away.

Blame can also be an effective tool in the short term. We blame others, we blame circumstances or the system. It is easier to be the victim than to deal with your difficulties.

Self-pity is a very common place to end up. We can get many people to sympathise and feed self-pity and often it's easier to choose "friends "who do this at the exclusion of others.

The rebel or fighter might simply apply the hate filled strategy "I won't let the b?????ds get me down ".

My life has changed irreversibly and inexplicably. My days are slow and my nights even slower. Each moment is filled with pain and frustration which subsides at night after a sleeping tablet. I face the prospect of a life devoid of physical contact except when being bathed or dressed. I have not changed, but my ability to walk, move and talk has. I can't shake hands or initiate any contact but I appreciate a reassuring pat or a kiss on the cheek.

How do you face the reality of paralysis and loss of speech?

I focus on getting through each day. I fail often. I do the best I can.In reality I can do no more.

Don't waste time holding on to things that hurt. Don't take pride in your pain. Don't wear your suffering like a cross. Let your spirit soar,set it free from the heavy weight of a a bad memory. Your heart is a dove not a rock, desire freedom, hope, love be not afraid or lethargic.

The cost of freedom is paid once. Fear and lethargy require regular payment and are never satisfied.

Love freely, without concern for compensation.

Help me God.

It's like this, you hang in, you're "brave ", "courageous". You know the truth?It's rubbish. It takes even more courage to admit you want to give up and face the failure. To hate your life and your loneliness to see your children grow up and drift out of touch. To see your family and friends put you into the "duty box".

So you lust after the admiration, the weak praise, the fleeting visit. The "braver" you are the fewer the visits. So weakness is despised, a turn-off,a downer, a good reason to stay away. Strength on the other hand, takes the pressure off. Either way just ignore the problem, he'll go away, he's fine.

The senseless feeling.

Aching for attention, my restless body and mind wage war.
The body bound in paralysis the body urges the mind for some intimacy.
The fruitless hope of thought mocks the mind at the realisation of the same familiar pattern.

Am I just too proud?
Can't I admit my need?
Too weak to show my vulnerability?

I lie awake, tortured.
Desire unfulfilled.
Hope in what?

A piece, a slither, a crack in the doorway of hope.
No hope lies beyond.
Can I find peace?

Echoes

13 September 2004

I cried today.
Big sobs,
as the tears rolled down my cheeks.
I am tired of fighting,
Tired of stumbling,
Tired of the emptiness

It’s a hopeless thing.
To get up each day,
After a restless night
To find courage, purpose and will
To do it all again
Only, what for?

Where the companion to wipe away the tears.?
To soothe the everlasting pain?
To remind me of a better time.
Echoes are the only sound
Only emptiness echoes,
People fill the space where echoes live.

Loneliness and echoes,
The only friends
In emptiness.