No man is an island

No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thy friend's
Or of thine own were:
Any man's death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee

John Donne

I love this poem and understnd what Donne saying, but had he met an Aphasic? 

My Aphasia has ment I have tried to retreet my own island, like hermit, retreeting inside myself  trying make sense of what this condition doing to.

I explained before what Aphasia is and chalenges Aphasics face in evryday life. Comunication is part of evryday life so, when it disapeers, huge part of our lives disapeer with it. Man is ment to be part of society, a society that interacts with each other. So much life revolves round comunication, from the time we wake in morning to the time we retire nite we comunicating. Radio, television, email, text, leters, books, magazines, greetings cards, films, social media, socialising, doctors/dentists/consultants apointments, famly and frends we are always in some form comunication.

If you have truble speeking and you want tell your husbnd, wife, partner, children, parents that you love them but are unable to say those simple words I Love You, can you imagine how hertbraking that is? If you can rite then it is a form of expresing those sentiments but if you cannot rite either, it is another blow. If you received a card with those words but couldn't reed, how distresing you think  is? But that how Aphasia afects  many peple. 

I was trying hard to work on my speech, reeding and riting. I could say somethings, my reeding, like now, at a basic level (nothing to hevy!), riting was a problm because of speling. I also mised small joining words. On  my retreeted  island I very low, I forgoten famly and frends' names, I forever trying to find other ways to say things, explain things, describe things. There it was in hed and I wanted 'set it free'.

My speech therapist came up with video camera and wanted me and my husbnd video ourselves having conversations. We gave it a go. When it was played back I saw I could comunicate much beter than I thort! I was building a bridge to other islands, islands biger and with more peple on them! As we made our videos she praised me for way I comunicate and say we perfect models for Aphasics to follow!

Having lived in France for 10 yeers we had become used to using gestures to emphasise our words, I was using lots of gestures more than I realised. Pointing, pictures, hed, eyes, body I used them all. I could comunicate! 

It was time to walk over the bridge and meet peple from other islands. It didn't meen that I was cured, no way. Feer still lurks and at time I retreet to my island and block the bridge. I rite more but finding words is still hard. I still reed easy books. I cannot follow some things I get confused, agitated, upset. Peple ask if I watched so and so, red so and so and I say no; oh you should it great. But I have not been able to I just can't - yet. 

One thing that has upset me is I haven't been able to go to church. It isn't that I don't want to, but just the fact I scared. True I have had lot of problms with pain over the last couple months and doctors have helped that. I got more tablets take! But I scared number peple there, talk me and then sermon I not sure I able folow. I try get out be with peple, but siting same room them and noing you got talk, I panic.

I try explain this peple but they not understnd. That meen I retreet again and want stay own island. Why you not understnd? It over and over in hed.

I think, what big problm? Talk, reed, rite? I no it talk. OK. So, I no I not talk gud. But I comunicate. So if I able comunicate, what problm? None! Ah, but peple think I stupid not talk gud. Is that MY problm? No. It they problm. If they problm way I talk then tugh! 

Concentration and understnding problm me. Some sermons go long time and I not follow, what do? Try follow and if can't sit and pray! 

I able take these answers other things. Grups are big problm me. I gud small grups but big grups more noise and I not able follow peple say. So I find one/to peple talk to and keep that.

Donne rite, no man (or woman) is island we all need be part of biger continent. We need them suport, sustinense, information, company. We conected by what we give each other. When one us not being part we mised and the interaction brake down. Even hermits mixed with others times. For news, food, company, reasurance.  I venturing further from island, times it nice return and recharge then venture out gain.

I working on meeting biger grups and no I lay down rules that. I hope things improve but if not, I got ways comunicate and if peple not like it they not need talk me!

We all part one whole

Small as we are, we all part one whole

We all got something ofer 

No one more or less important than others

We are no beter or worse than others

But some will try to bring you down

Avoid the rubish tips, where the truble lerks

Life rols by in fast lane and times we need retreet to sanctury

Find that place calm, recharge and stride out again

Peple not have like you or want you, they have choise

You have choise to, go where you wanted, needed

Go where rivers flow, flowers grow and sun shines

Go to the hapy places, places where love blosoms.

Don't let angst and critiques bother you

They drag you down, hurt you, bruise you.

Keep to the side where green grass grows

This you life, you got choises, you got chances

Make rite choises and you chances come

You got something ofer, YOU!

You got something peple want, YOU!

For each rejection there many chances

You small  but part of whole picure.

You as important as evryone else

You no beter, no worse than evryone else:

Go where you wanted and needed

Let nothing bother you, not get draged down.

Live for you and remember you are unique

You are YOU and there not another one like it!

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!

The three Rs

You will possibly only understand Aphasia if you either have it, know someone with it or are a speech and language therapist. Even then, as I have found, having it doesn't mean I can understand exactly what others are struggling with or they me.

I have mentioned before I love to read. I have a Kindle full of books that I haven't yet read and sadly will not for some time.I also have shelves of books that I read over and over again but they are ignored for the time being. I have had to change my reading matter for things that are 'light and fluffy' as I call it. That is family sagas that are fun and easy to read. Well not really easy as I have mentioned I tend to find each page is like a new book and I cannot remember what has happened previously in the story. I spoke to the speech therapist about it and she has suggested that I read a page or two and then write down a little about the story so I can refer back to it. As time progresses I might be able to read more pages until I get to a whole chapter before writing anything down. But not to get too ahead of myself I am on the one or two pages at present.

But today I had a slight breakthrough! I was reading a page and something seemed to niggle at me. I am sure I have read about this character or situation before in another book of the sagas. I have tried to find it but cannot be sure where it was so I have this niggle going on. Hopefully I will be able to match it up but I am sure I am not imagining it.

I also like doing crosswords but they are much too hard at the moment. I am not referring to the Times crossword just one in my womens' magazine. I just can't think of words that will fit and I do them to keep my brain active! I shouldn't get upset but I do. Sometimes I just cannot understand the question even let alone the answer. So I have stopped doing them it is much too upsetting and I will try again in a few months.

I also find that numbers are so difficult at the moment. I recognise numbers on their own but as a sum I can't do it, even if it is easy sums. The same goes for money. I look at the coins and I look at the numbers on them but adding them together is panic stations. I have had to trust people to take the correct money or give the correct change and I hope they are honest. I know that paper money is more than coins so at least I have that advantage but it isn't any help when I don't know what change they will give.

I feel I should be starting school with the nursery class to learn to read, write and add up. That sounds silly but I do feel like a small child again starting out. I have good friends who will help me as well as family but whilst everyone is doing things almost automatically I am struggling on the edge.

When I think of the double As I got in English and the B in French after my second stroke I cannot believe I did it but then I didn't have Aphasia. I would love to study again but how can I? I love English literature and history. Now I have the time to study I haven't the ability. I do take photographs and intended to do a photography course but the communication would be difficult as it is in a group where everyone is talking. I can't cope in those situations. An online course would suit me from that point of view but then there is the reading and writing to be done. I just seem to go round in circles.

Some information on Aphasia I was given talks of the problems people have in returning to work or getting a job if they have Aphasia. I wouldn't know how to start looking for a job if I was of working age. I was in a job where I was communicating by telephone, face to face and in writing. I did a lot of number work, adding pages of figures together; a job I wouldn't be able to do now.

One thing that Aphasia does is make you isolated and I feel that very much. I can't use the telephone unless my husband is here to answer and put it on speaker so I can hear. I can't even buy on line as he has to be here to do the money side. I want to go out but I am scared, of what people will say, how they will react and how they will treat me.

I can't stay home for ever I know that and I must take that first small step to mixing in public.

I use a wheelchair so already people know I have mobility problems but when I open my mouth to speak my Aphasia will stand out. I have been saying to myself I have a problem but if people want to be rude and ignore me then they have a bigger problem than me.

I told the staff in hospital I want to get a T-shirt made that says. I take medication for my conditions but there is nothing you can take for ignorance!

I will continue to read, continue to write and continue to get to grips with numbers. All will take time and it will take as longs as it does to get even a little way. Tips from the professionals help and eventually we find a way of coping ourselves. Sharing with others helps too.

Today I hoped I had made a little breakthrough, perhaps I did perhaps I didn't but something seemed to strike a chord with me. Little breakthroughs lead to bigger ones, I will keep looking and hoping.