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!