I have a healthy body but it lets me down in some areas.
I cannot speak and that is a major problem.
Walking has been a problem,
but over the years I have conquered that and now do it like most people.
My eyes have also been a big problem in that I could not see things clearly.
I tripped and letters were blurred.
However they found out that I had keratoconus
and after two corneal transplants I am now able to see perfectly.
It was a miracle to see well for the first time in my life.
One eye is slightly stitched but I see perfectly through it.
Not being able to speak was a major, major handicap.
I could be very brilliant had I known how to speak.
It has been setting me back all my life
but thank God I am now able to communicate
and I think that is the best thing in my whole life apart from picking a good mother.
I miss being able to speak like you.
I miss being independent and living on my own.
I miss the freedom to go wherever I like without restriction, and to walk alone.
Sometimes I would like to just be able to walk by myself
but it is impossible because I would get lost.
I think that not being able to walk alone is hard
I see people walking alone on the beach with their own thoughts
I can’t do that because I would get lost,
someone has always to shadow me and that is restrictive.
Movie stars, the Queen and princes of the realm cannot walk alone,
so if I think of it like that I don’t feel deprived anymore.
The hand holding mine gives me strength and support.
It gives a reference point of fine control and accuracy,
and I am in a maze of confusion without it.
I still know what I want to say in my heart and mind,
but it doesn’t come out very easily when the hand isn’t there holding mine.
Some say that I am using the other hand as a hinge
to point more accurately and precisely.
Others say it’s the hand holding mine that has the actual message,
and that I’m not doing anything but holding on for the ride.
The sticky, sweaty, slippery film between our hands speaks of effort and strength
and tiredness and earnest hard work when we type together.
I am ashamed and elated at the same time
as I watch the feed-back from the eyes that are watching me.
My hand is tight and my muscles so sore
at the end of the conversation with my finger tip.
But I know that if I get lazy and stop pointing I’ll be as silent as the grave
and never get to say I Love You to the hand that’s holding mine.
An Angel in my Room
An Angel watches over me all day and especially at night.
He comes with me when I walk and swim, and when I dance and sing he is there.
He protects me from the darkness that surrounds me
and he tells me that I am safe with him.
He is the guardian and friend for me, but he is not the guide for me.
There is no reason to pray to him, because he doesn’t answer prayers;
He just does what God asks him to do.
Some people say there must not be an angel looking after me
because bad things have happened to me in the past.
But they have not understood what Angels protect us from.
They do not protect us from our lives or ourselves,
but they protect us from death.
Not the death of our body, although sometimes they step in there too.
They protect us from the death of our spirit.
This sort of death crushes us and some people go insane when this happens.
I know that my angel is there because the things that have happened in my life
would have killed my spirit a long time ago if he was not there.
Some people see angels some do not.
Some people do not even know they are there.
It doesn’t matter:
They are there just the same.
They stick to my tongue,
They stick to my teeth,
They stick to my voice,
And it’s hard to speak.
They tangle me up,
And make me choke,
I so want to speak
And that’s no joke.
I try and I try,
I push and I push,
But the words all come out
Jumbled and rushed.
I choke on my tongue
And sometimes I spit,
I’m trying a word,
But that is not it.
They’re cheeky and sticky,
They just won’t come out,
But they seem much easier
To speak when I shout.
I’ll catch them one day
When they all run by,
And then on that day
My speaking will fly.
I want you to know
I think just like you,
But my words are all stuck
In my mouth just like glue.
But where is the way
To unstick all these thoughts?
I hope it’s in the
Speech Therapy I bought.
In the beginning having a disability was a major problem as I could not let people know anything because I was unable to speak. My family had been told I was intellectually impaired and unable to comprehend or make a decision. I could do all of those things, but I could not tell anyone because I could not communicate.
The first time I was able to communicate I cried in joy and relief to know I could communicate by the tapping of my fingers.
I was listening to my heart telling me this was the way to go.
I was listening to my fingers talking on a board.
I was listening to my friend reading my words for the first time.
I was listening to my tears as they flowed in relief down my face.
I was listening to the things I was saying for the first time
I was listening to the relief in my whole being.
The room was small.
The event was huge.
And the people around me were crying too.
But it was not unfortunately with my parents,
but with people who cared nevertheless.
The sun was shining outside
but it was not nearly as bright as the sun in my heart.
Apart from the speaking or lack of it, I had keratoconus which did not allow me to see properly; it was a big fear when Professor Hurst decided to give me corneal transplants in both eyes; I was so frightened that the little that I could see was going to be taken from me, and having just arrived on the coast with so much ahead of me I was terrified that I would lose my sight.
Movement is a problem because I do not have fine motor skills, but I have worked hard to help myself there, and I am getting better with the assistance of a personal trainer who is just so switched on with all this type of stuff. I was never intellectually impaired, I was only unable to speak, and that causes people to treat us as if we have no understanding or comprehension. I was able to solve problems, I was able to make decisions, I was able to remember everything that was said to me, and also to understand it, but I could not let anybody know that it was just torture.
Learning to communicate eventually through FC has been the most wonderful thing that has ever happened to me because it has allowed me to tell people my needs and get help when I most need it. FC is a strategy which may enable some people with complex communication needs to point to communication aids such as keyboards, pictures or objects. I have a motor impairment that stops me from speaking but with a facilitator I can communicate. It has also enabled me to write stories and poems and paint which has been incredible. Being given the opportunity to do all these things has been an incredible journey I never want to stop. You don’t know how good it is to be able to express yourself after being silent for so long.