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!

Rose tinted glases

I not ritten in long time. We went France to see famly and visit our house which is now up for sale. I miss it much but we no it now time move on. We can still visit our dauter and her famly, if she agree! I miss the grandchildren and we have great time with them. They got so big, it was 16 months sinse we last saw them and the change was enormus.

I was asked if I miss the house and the area we lived, I say yes we hapy. We like the peace and quiet of the countryside. We drive hour and not see another car. Then I think, was I remembring rite?

Yes it lovely, fields of cows, lakes, forest, quiet roads, speedy apointments at doctor or consultant. Smell fresh bred from bakery, helpful butcher, greengrocer, pharmacy. Siting outside café watching world go by. The BBQs in the garden, growing own vegetables and herbs, siting in the garden listening to the drone of bees, watching lizards sunbathing, evenings watching the bats flying. The sound of the stags in ruting season. Those rose tinted glases were well employed.

I think of the heavy snow and painful cold. The freezing pipes, the sporadic electricity in thunderstorms. The treacherous roads to get to doctor (rite by huge lake with no fencing and ice on road), the amount work do on house, the batles with beaurocracy; in another language. The treatment of disabled peple being horendous. No droped kerbs, groveling for caddies to fit the wheelchair in supermarkets. When I got Aphasia first time in 2012 the isolation as I was the French speeker for me and my husbnd. He tried and he did shoping but couldn't explane anything. I had rite lot leters, luckily I could still rite OK.

Now we in UK and able manage beter. Still missing France a lot but it beter get treetment in own country with own language. I still not good talk lot and leeve most to him, unless with peple no very well. I got card say I had stroke and got Aphasia. I kept in in my handbag/purse in my purse/wallet. But as use wheelchair it fidly to get out so I got lanyard with ID card wallet and put in there. It hang round neck and it easy show.

I try find ways round stuff and glad I can. I not use those rose tinted glases as they just cause havoc! I want see what rite and what rong. I like try and find anser to problms and I can't do that when I not got clear picure.

ROSE TINTED GLASES

Of rose tinted glases I have no need

I just take of my own and I suceed

No trace of dirt, dust or grime

I look in the miror and I am in my prime!

I see my husbnd, so young and virile

My hert makes a leap, a bound and a jigle.

 

I don't see grafiti on the wals

The crime, abuse and braking of laws.

The anger, the poverty and homeles neer

The tears, the hopelesnes and downrite feer.

The spiraling down into an abys

The peple so many say they wouldn't mis.

Love is a state that is felt in the hert

It flies into me percing just like a dart.

It opens the way for a sweling of pride

That I should be loved, I'll not let it hide!

A hug or a kiss is all that I need

ThenI no that at anything I will suceed.

If only this feeling so warm kept inside

I could share with those shut outside.

To brake down those horors we chose to ignore

That are the curse of the hungry and poor.

A pair of glases tinted in rose

Wil not protect you from any of those.

I am hapy, I'm glad, I'm fulfiled in a way

That many won't feel till the end of their days.

I have famly, I have frends to many to count

Showing feelings I never have cause to doubt.

Those rose tinted glases I chose to discard

And trust in a future mitily stared.

 

 

Growing out of Stres and Confusion - When?

Coral's husband here again introducing her latest article for the blog together with another poem. Coral is still having problems with spelling etc. but I trust you will be able to follow the article because I think leaving it unaltered will slowly help Coral with the written word.

It has woried me that things I thort would get betr have not done so.

After my stroke last August I found I would cry for no reeson. Sudenly I would just start to sob. I found that other peple did same so I not wory to much. Then I have stroke Janry and I still cry for no reeson. Sometimes I think it cause I tired but I found I do when I confused or stresed.

I like go shoping and help decide what eat. But that not easy. I find hard chose. I want bread, beans, tea, cheese etc but so much choise ! I want bread and there thick, medium, thin, wholemeel, flavors, small loaf, big loaf etc. But I want just a loaf bread. Beans have so many brands and cheese – it remind me De Gaulle who say 'How can anyone govern a nation that has two hundred and forty-six different kinds of cheese ?' Exactly ! To much choise. Making choise for me is very stresful, I not able to do it and need lot help and pacience. My husbnd will try help, he explane what there and the diference. When I decided I reck ! I cry cause the stres make me cry. 

I been quit lucky at shops peple help but had some peple serve not so nice. They not lissen me proply and when I got chose they sigh and tut. I have husbnd there lot time but always try have someone. I ware bracelet say 'Awareness of Aphasia' I show them and say I problem talk. Sometimes these peple look at husbnd to decide but he no it me must chose.

When need buy food I need find things I able eat. Since 4^th stroke nerely 10 yeers go I had swalow problms. It got worse last August and more in Janry. I not good with letuce, dry rice, noodles, runer beans, celery, aple peel, potato skin, big tomatos not good but OK chery tomatos. I need lot sauce on food, it need be soft and cut small. Breads with 'bits on' no good but rost veggies are excellent. We use slow cooker lot that help and corse we can make meal and let cook long it need. I lern hard way from choking so we changed what eat and how cook. When take tablets I take with yogurt, porrige, custard as it easier swalow that way. I do have before meal tablets that must take no food so make sure mouth not dry and swalow with lot water.

I cry when not understnd things. It hard if peple try explane things complicated way. I need someone tell what say. Yes, I can understnd but why some peple make big thing out something small ? I mean they turn it to a drama. I ask pleese rite down what you say so I reed latr and try understnd, my husbnd listen to and he tell me what say, tho at times he say 'they go on a bit !'

I try plan what I were and if I no I go somewhere latr and want cetane clothes were I get washed early. I hate look in cubord and get stresed what to were. I not lots clothes but some things I like more othrs. If I thort before I betr and carmer.

To cope betr I like plan food, clothes, what I do day to day, enouf medcines, flat cleen. If these not done I stres and get confused. To some peple that sily but I find that what brain injry do you.

Losing words stres and confuse too. For me losing word frustrates me as I no I no it and it like it teese me just out reech. I lost names of famly and frends, I no who they are but not names. The name iches at me and I no it there, sometimes I think name come in hed, I so hapy but it go qwik. It like things in flat I can't get they just things (we have lots things!) it wich thing I meen husbnd must gess !

He make me book with picures of famly and frends and put names them. I can look at picure and reed name. He make book with picures of things in diferent rooms, diferent foods, times yeer, clothes, it all help. I wood like spel good gain but that take long time. I rite, sometimes good sometimes not. I reed lite story as understnd betr. I need betr consentrate but that short time and I stop when feel stresed.

Things not helped by medcine which make tired. I have Morphine and Codeine and some othrs that make tired. I not able do much when tired, get stresed, confused, angry I just need sleep. I thort I be OK by now but peple say they stil need nap time lot yeers aftr stroke. It anoy me that you not told things like this, but when say to doctor bout it they say oh yes that normal ! Why not say you and not let you be stresed ?

There lot things lern by self and from others had stroke. It good help othrs, but we remembr that stroke afect peple difrent ways. It never easy but if you got good doctor, good therapists, good carer, good famly, good frends you cope betr. I got lot peple who help me but husbnd is carer. He lern that it betr to not joke bout when cry, not joke when I stresed or frustrated, he not joke when confused cause that make it worse. I not cope with joke then. He lern he must bos me bout and say what I can/cannot do, when I must rest, when I done nough. I not like it but he tell me if not behave I not do what I want ! Of course he rite, I find need rest but I not give in ! He rite that when I tired, stresed, frustrated talk get worse, I get confused and get worse and cry and then I not able do anything. He use that horid word, PACING, that I hate. I betr than was but not as good as shuld be.

I think I shuld be betr at some things I not but when say therapist she say it take long time and sometimes you never betr. I see peple my age or older and they do things I want do. But as I told they not got what rong you and not been thru what you been thru. I supose that is the all I can acept from how things are.

I got think not expect too much, slow down, breeth, acept help, keep carm, prepare, not expect too much.

Can't you hury up deer

Can't you hury up deer, I haven't got all day

Can't you hury up deer, I want to get away.

I got things to do deer, they realy cannot wate

I got things to do deer, I don't want to be late.

Can't he chose it for you, he seems a decent chap

Can't you let him help you, stop geting in a flap.

If you cannot chose deer, let him tell which one

Would suit you best deerie, and let us all be done.

Can't you speek more cleerly, I can't make out what you say

There's lot of pointing and arm waves, a strange way to behave.

Are you deff then deerie, or mentaly deranged

It must be hard for you deer with her so badly damaged.

No, I never herd of that, a new fangeled disease

It seems they are always finding a new name for lunacy.

Well, it isn't normal to act the way she does

Grunting, crying, stuttering, and many a cuss.

Sorry I'm sure deerie, if I've got you upset

But I can't understnd you, and I've tried my best.

Think how my other customers feel to here your muddled speech

If fair gives them the shivers to here you call that cardigan a peech !

I think it best my deeries she stays at home now on

We wouldn't want to distress the others in the town

They want to live quite peceful like with nothing to distress

And seeing you in this state would surely not impress.

I need to get educated, is that what you are saying ?

I need to understnd your problms, and how you are coping ?

I need to lern how to comunicate with others like you ?

You meen there are more out there, what am I to do ?

So, you are inteligent, just language has gone astray

You understnd what I mean and heer all I say.

Tis a funy busness this thing you have aquired

What's that is called ? A funy word that APHASIA .

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.

New year, new challenges the hardest resolutions

I appreciate I have been absent from the blog for a while, this due to nasty little winter bugs that chose to attack me.

Leading up to Christmas sinusitis, chest infection, colds, minor mouth surgery and a stomach problem have been wearing me down. Luckily I had two days reprieve, Christmas Eve and Christmas Day, when I could enjoy myself. Christmas Eve spent with friends that we have known for many years and Christmas Day with our daughter, son in law and grandchildren.

With the New Year approaching I am asked, what resolutions will you make? I always answer honestly - I don't make them. I have seen people start the New Year by planning to take up exercise, start a diet or give up smoking, invariably they never succeed and two weeks later they have failed.

My idea of change is not stopping something but starting something. My logic is that cutting or throwing out the 'bad' and bringing in the 'good' can never work when done suddenly. You have to run the two together, for instance if you never exercise and suddenly start exercising every day is doomed to failure but introducing exercise slowly as part of you daily routine will be better for your body and for success.

I have never undertaken a faddy diet, instead I have gently changed what I eat by introducing items into my regular diet or substituting one type of product for another. That way I avoid stomach upsets and other problems connected to a new way of eating. People who resolve to stop smoking usually find themselves buying cigarettes again two weeks after throwing away the last packet. Like those who resolve to stop drinking, the reason they fail is they go cold turkey. Cutting down and having a 'buddy' is more likely to succeed as the failure is the body reacting to the sudden stop of nicotine or alcohol. It is like weaning a baby away from milk and onto solids; it has to be done slowly and carefully.

When I want or need to make changes I do them when the need arises. Then I have no pressure to succeed unlike if I were to wait until the new year, nothing would ever happen and would doom to failure. Besides there is no time like the present to make changes if they are needed.

Therefore, I have no resolutions but I do have challenges which are on going from the work I have been doing since my stroke.

I have been working on my speech and using many aids to help. I have downloaded some apps onto my phone and tablet which I hope will help and inspire me. Many of these apps come via the ARC group on facebook. ARC, Aphasia Recovery Connection, is an American website to help Aphasics, not just in America but other places too. Members of the group post things they find useful and helpful to their recovery. I have a game I play which is a word game called 4 pics 1 word. You see four pictures with one word in common and that is the answer. Some are quite difficult. I have the whiteboard application which I haven't used except to show people. I you cannot make yourself understood verbally then the whiteboard means you can write the word, if you know it, or draw what you want, easily erased it is simple and effective. I have also downloaded onto my Kindle a workbook that my husband helps me with. He reads phrases or sayings and I have to fill in the relevant word. I know the words mainly but the pronunciation is the bigger problem there.

What I cannot improve on is my emotional state. If I cannot think of a word or make myself understood I burst into tears, if I lose something I know I had I cry it is like going into panic mode and nothing I do can stop it. If I want to tell my husband something he has to hold my hand to calm me. On occasions he does interrupt of finish my sentences when I am looking for a word and that upsets me. This week at the Aphasia group I go to we had a lady come to talk about homeopathy and how it helps with stroke. My husband had gone to the carers' meeting so I sat alone. I found the talk confusing and difficult to follow and he wasn't there to explain what was going on. The talk was long for me, I cope with short conversations with simple words but a talk like this isn't short or easy to follow. I panicked and started to cry and a volunteer came over to talk to me and calm me. I stopped crying but I was at a loss as to what the talk was about. I knew why I was crying then but sometimes I have no idea why I am doing it.

My husband tells me to calm down and breathe which helps. Other people say there is no problem with your speech we understand you, the problem there is they do not seem to appreciate the stress communicating puts you under. Yes, they may understand what I want to say but to get there is traumatic as searching for the RIGHT word is uppermost in my mind. At home I have lots of 'things' these are words that I cannot remember or find. My husband's job is to guess the 'thing' I mean and he is getting good at it. I can only describe it as the word accessible, there but just out of reach. I do not know the word of the thing I am writing this on for instance, there are many more and some people think it is funny that I don't know what they are. It isn't funny and when they laugh I cry.


This is my challenge to find these words and work on them and the pronunciation. This is not a resolution this is work in it's hardest form.