Digging deep

This is Coral's husband writing this introductory paragraph to a new entry to the blog. Coral had another stroke in January that worsened her Aphasia leaving her with great difficulty with memory of names and being able to spell. She still has lots of ideas, so I thought she should continue with her blog. Therefore, below is her latest entry unaltered by me. I am sure you will be able to understand what she has written and it gives a great insight into the problems she is having with her spelling.

I not writen since my stroke in Janry. Now I want to start again, with help.

I found I can't see words in my hed so not no how to spel, I could here them so I spelt like I here, feneticaly.

I was embaresed to write and would avoid writing anything. I get more confident now and it easier to rite but stil problm with speling. I reed though and hope I lern spel from reding.

A more upseting thing is remembring names, I not know the names of husbnd, daughters, grandchildren, frends. It make me cry to try remembr, it like a fog in brane and I try hard to think. My husbnd made books for me with picures of famly an frends and he put names on picures so I can find who want and see name.

My granddaughter likes nanny Coucou's specle book ! I have one with things from house in it. I can find the thing and point if I want. It make it easy for husbnd to work out and not have to gess !

When I have name person or thing then I try say name. That not easy. I try lots say over, over gain. In famly we have peple with names sound like. That confuse me. Some sounds not easy say and not come out rite.

Some days betr others. I think and talk betr so I get confident then next day I bad gain. I use tablet to rite and that has predicted text, so when use tablet peple say 'oh you are betr. You rite real good gain, glad you back normel !' 'I say not good I use predictive text, ' 'oh that sad.' Yes it sad but I bit betr use text as some spel is betr when use computer.

I stil understnd what peple say me, but when I try lissen long talk I not understnd. Short talk with picures to brake it up I cope with, but just talk that go on long time confuse me. I panic and cry.

My stroke last yeer that mean I have Aphasia upset me but names and riting stil there. This stroke made more bad, it hard acsept.

I have speech therapy with lady and work with husbnd on souns and words. He gets me talk on subgect and let me say what want. Therapist good she help lot.

I found I swere now and not something I do befor stroke Janry. In book I see peple have same problm and I reed :

Swearing

Even if you can't say very much, you may find yourself swearing a lot. This can happen even if you rarely swore before the stroke.

Because of the stroke, the brain may have less control over what is said. Swear words may be easier to get at than words you want to say.

Sometimes people who have Aphasia don't know they're swearing.

What you can do :

Remember that swearing is one of the effects of the stroke.

Help others to understand why you are swearing a lot.

Perhaps show them this section of the Stroke and Aphasia Handbook.

As time passes, you should find yourself swearing less and getting more control.

This reasures me that it not my forlt that this happen. But when say to speech therapist they not no bout this hapen to peple. But speeech therapist on the ARC group say it comon problm and she say keep calm !

I get betr talk spel, predictive text and copi/paste help lot. As do that and reed more it go in and hope , soon I do betr.

The Mask

I hear the comments peple make of me

You are hapy, you look well, bettr than ever

Life is good to you, you have come through so well.

They see the mask I were that hides the truth.

Remove the mask and see what lies beyond

The confushon in my hed, the battle with words

The names I cannot remembr,

The strugle to live day to day.

I wear my mask to protect those around me

To tell them I cope with this pain

To face a criticle world

To convins myself I am not beaten.

My batle for words never ends

My batle to remembr agonises

My batle with the fog envelups me

I batle to live a normle life.

My mask is my protecter

My mask get me thrugh the days

My mask tells peple I can live

My mask says here is a surviver.

From the small voice of Aphasia to the roar of confidence

Since my last stroke in August I have learnt a lot about myself.

I started thinking 'WHY'. Why should it happen and mostly, why should it happen to me?

Well, one look around the ward at other people, some worse some better than me, I thought , 'WHY NOT ME'. Why should I be exceptional? I'm no different to others. Some were critically ill, some couldn't speak at all, some were confused, some seemed fine in many ways, but we had all become Stroke Survivors.

I had problems that irritated me, my right side was most uncooperative, my speech was annoyingly basic at most but I was able to read (not able to remember what I read but read!) I could write basic things, numbers are still a sore point but compared to others I was doing good.

I decided then, with the help of my speech therapist to start writing again. I have written for years, articles, stories, poems, blogs and I enjoy it. In writing I could use a part of my brain that held artistic memories so hopefully it would work so I gave it a shot.

My blog began. I felt that my stroke was meant to be a way I could make a contribution in helping other people and the way I could do that was by writing down my experiences with Aphasia. Then I started writing poetry again and that seemed a way to express my feelings, experiences and the attitudes I find toward it.

Aphasia is a hidden condition, hardly anyone has heard of it let alone understand what it is. Add to that the fact they believe if you have no language you are lacking in intellect Aphasia becomes isolating. Here frustration, anger and depression come into the mix. Aphasia is something Aphasics say they hate and it is easy to see why.

I have tried to see it from another angle. I don't HATE Aphasia, I am saddened by it. I am saddened that so many people are isolated due to Global Aphasia, they have no speech, no reading ability, no writing ability or no understanding of spoken or written language. I feel very lucky that I have my written and reading abilities even if they are affected slightly. I feel saddened that people don't understand why people are affected in such a way, why people are rude, abusive and intolerant of people with speech problems; remembering that non of this is any fault of those affected.

If I didn't have Aphasia I couldn't begin to write about it, begin to educate people, begin to help people come out of isolation and find a place in society. Since joining the Stroke Association Aphasia Group I have met some wonderful people who, like me, have communication problems. There no one is abusive, rude, intolerant. They have patience, they have understanding, they help and support. Because, they KNOW what it is like to have exactly the same condition, we can truly say 'I KNOW how you feel.'

I really feel that my stroke and Aphasia has been a call for me to make people aware of the challenges faced daily by Aphasics. I can tell non Aphasics:

1. Make sure you have the Aphasic's attention before starting to communicate. 
2. During the conversation, minimise or eliminate background noise (such as television, radio, other people) as much as possible.
3. Keep communication simple but adult. Simplify your own sentences and slow your speech. You don't need to speak louder than normal but emphasise key words. Don't talk down to the person with Aphasia.
4. Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
5. Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with Aphasia except when necessary and ask permission before doing so.
6. Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
7. Involved Aphasics in decision making and value their input.
8. Encourage them to be as independent as possible. Avoid being overprotective.
9. Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with Aphasia from family or friends or ignore them in a group conversation.  

•  I would also say to Aphasics, accept help. Don't be stubborn or try and be too independent, swallow your pride and you will find that help makes things easier and more fun!

 My husband cuts up my food for me even when in a restaurant, other people don't care and neither do we. It makes it easier for me to eat and I can relax and enjoy the meal and company. I even take my own cutlery, plate guard and a tabbard to wear to keep my clothes clean! Why make life more difficult, when just accepting that little bit of help makes it easier?  
 

 Pride don’t take a fall

Why make life so difficult

When it could be such fun ?

Why try to do the hardest things

When solutions are at hand ?

Why try to be independent

When help is all around ?

Why climb the steep slope of hardship

When the lift will get there there quicker ?

We all like to be in charge

To be the one who does it all

Times come when life goes wrong

Then is the time to accept some help

Don't be proud just ask around

Many will come to your call

Why struggle and fret when there is no need

When another will help to ease the stress

Pride will come before a fall

A saying well versed

But proven to be true

Don't take that fall

Just because

Your pride

Is too strong to lose.

Now I am not so worried about speaking perfectly just as long as I can communicate. I use words, gestures, facial and body expressions and they seem to get me through; along with the support and love of family and friends. Aphasia has taught me so much. I was impatient, I wanted perfection, I wanted to be independent; you notice I want all the way through?

Now I accept patience (nearly always!), I accept imperfection (doing the best I can), I accept I cannot be independent; you notice I accept? 

 

From the small voice of Aphasia to the roar of confidence

I want independence

I want perfection

I want acceptance

I cannot wait

How often I have said these words

I had my own agenda then

I wanted to be like everyone else

I wanted to be first in everything

I was full of my own self importance

I wasn't caring of my fellow man

Life changed

Abilities stolen

Isolation reigned

Future doubtful

Stroke takes no prisoners it strikes unbidden

It takes away that independence and ability

Pushed into isolation for fear of ridicule

What can be left for me now in this world ?

Life changes but still there is ability

Independence is achievable if help is accepted

Ignorance and intolerance are bigger disabilities

Once the door of isolation is opened, explore the world

The first step is small but leads to great leaps

The hand of friendship is forever open

The small voice of Aphasia turns into a roar of confidence

The hearts of survivors are full of love and tolerance

Life changes, but take that small step and make it a giant leap!

Poetry in motion

I have had a rather busy and painful time recently and writing hasn't been the top of my priority list.

I have, however, had some good and interesting times too. The Aphasia group is first class, I love it there. I had a go at hangman with my husband although I wasn't very good at it I made an attempt.

I have also been on a one day retreat with members of our church. It was a horrid, wet day but we had wonderful fellowship together, meditation and even a walk by the harbour. One thing I did discover during the retreat was that I could still write poetry. It means digging down inside myself to my hidden feelings, once uncovered I found that I still enjoy putting the feelings down on paper, letting them out to make a statement on my behalf.

Writing has always been a passion since I was at school. I love words and find that there are so many to explain our hopes and desires, our loves and hates, our needs and wants. I feel uncomfortable with unnecessary swearing that so many feel is needed to explain what they mean. The English language, whatever form you use, is diverse and eloquent enough without stooping to the profane.

I felt that I needed to put my feelings on Aphasia into words, not spoken as that is difficult, but onto paper (or on my blog) so I started to write and the words came, slowly, but they are there. Not first rate but they are my feelings and still I have blocks where words are refusing to show themselves. The rest is for your opinions.

More than words can say

I don't need words to express my feelings

I say more with my face, my eyes, my hands

My body too tells you all you need to know

Who needs words when there are other ways.

To show my love I open my arms

I hold you close and hear your heart

I smell your scent, I taste your tears

I feel your love, do you feel mine ?

I express my joy with smiles and laughter

I smile with my eyes as well as my mouth

Ecitement flushes my reddened cheeks

My energy flows like red hot lava.

My sadness fills my entire being

Tears fall, compassion shows

Comforting arms hold shaking bodies

A hand mops eyes red and sore.

I am not dumb when other ways,

Can be found to express my feelings

I ask your patience and observations

Actions speak a thousand words.

Words of hope

Tears course from swollen, reddened eyes

Dripping unseen to wet the floor

Frustration builds like a volcano inside

Filling my being bringing pain to the fore.

Feeling helpless and hopeless a daily chore

Searching and probing the depths of the mind

Where once an eloquence spilled forth

Now empty gaps fill a troubled brain.

Words of platitude do not help

They smack of sufferance and pity

A gesture of love quietens my whirling brain

Accepted from a loving hand.

Accepting a state of confused emotion

A world where words mean more than action

A world so different to the one I live

Words fail, hopes dashed, stress reigns.

Acceptance in this world of yours

Means more than wealth galore

To be seen as one with you is all,

I ask from each and everyone.

Don't mock or tease. Don't patronise

Don't fill my space with your own words

Patience, I ask, is all I need

And time to talk at my own leisure.

Not words alone

Words spin wildly in my head

I lurch and grab at every one

They soar away out of my reach

Before I chance myself to speak.

So many things I have to say

Words that tell how I may feel

They each express my hopes my fear

My desires and love of those most dear.

I long to say to each and one

I love you, need you, hold you tight

But words are fragile they come they go

They never stand clearly in a row.

My thoughts stay buried in my mind

Not able to reach my waiting lips

I tell my thoughts not by words alone

Gestures fill the void words fail to hone.

What do you see ?

Look at me, what do you see ?

A person, that is me.

I have feelings, I have hopes,

I have desires by the bucketloads.

If you hit me I will hurt

If you cut me I will bleed

If you call me offensive names

I will cry tears of pain.

Inside, I am just like you

I love, I hate, I worry too

I am no different to all I see

I have a voice deep inside of me.

I didn't ask for what is done

I cannot change it, fate has won

But I will never sorry be

That what has happened, happened to me.

My voice will not carry through the air

It fails to register a note to share

But write, I can and my words are said

In black and white and can be read.

I tell you, I am human too

With blood and bones and feelings true

If you have time to read my words

You will hear my voice as it is shared.

Because I am different to you

It means I see things not clearly viewed

I see them from deep in my heart

Those are what I try to impart.

Together we can make a change

In peoples' perception easily made

The fight is on and with your help

A different generation will surely swell.