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.

 

 

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.

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!

Volunteers make life good and worthwhile

I was very fortunate that I was referred to the Stroke Association Group in Petersfield, Hampshire by my Stroke Association representative Carly.

She had actually started the group just over two years ago and her mother, Jan, is a member. Not only did Carly understand about Aphasia from her work but also on a more personal level which gave me great confidence to attend.

From the moment I arrived I felt at home. I felt and still feel included in what happens. The volunteers do fantastic work in making the group a success. The activities make sure that everyone is included on their own level so no one is left on the sidelines. The volunteers are people with Aphasia themselves or they are carers of Aphasia or stroke survivors. This makes communication much easier as people talk to ME and they have the time and patience to allow me to respond. Other members who are Aphasics also include me in conversations and they will make ME answer them not my husband as it is so easy for me to pass things over to him for a response.

The volunteers work tirelessly to make each meeting a success for everyone and they will do their utmost to get people involved in some way or another. Whether it be word searches, dominoes, chair exercises or gardening everyone has a role they can play in the group. Even tea or coffee and biscuits is seen as an important part of the sessions. Actually doing things is good to work hands, feet, brains and bodies but the time to relax and interact with others is also seen as important. This is true, getting parts of the body, including the brain, moving and working is very important as therapy but the time taken to get to know others is just as vital. We learn such a lot from each other in how we perceive things, how we tackle them or deal with them. Just the task of speaking is extremely important as Aphasics need to practice sounds, words and phrases in order to reclaim their speech.

Our group are not all Aphasic but the majority are and that, for me, is the reason I go. We are all at different levels and stages and it is wonderful to see people who have progressed from where I am to where they are and I can know that there is the possibility of progress for me. One or two have very little speech and it has been that way for a long while but I have met people who are doing so well and they are proud of themselves and rightly so.

It is also important to realise that others have similar problems as I do. I find I cry for no reason at all really and one or two others say that they are like that too. I know I have changed in personality and character some others have gone through changes as well. We can share little tips on things, things we would never have come up with ourselves and you think, wow that is brilliant! I have road tested a pen that the chairperson brought in. It works wonderfully for me and it could work for others too. She didn't know where to get them as someone had given it to her, so I Googled it and found some on Amazon. I gave her the details so if someone else is interested we know where to get them.

Not only are we a group of people who have Stroke in common but work as a team. For me that means we do things to help each other. The carers have a monthly meeting too where they go off separately and discuss any issues they may have. I have no illusions that the carers are not affected by the Stroke as much as the survivor because they are. I rely on my husband a lot and other carers are in the same position. Some of the survivors need a great deal of care and help which is hard on carers. These meetings are held with the Stroke Association representative in that area Mandy and she has been very helpful to me as well.

It is true that the majority of Strokes are incurred by older people whereby the carer is usually of a similar age but that is not always the case. Younger people, from babies in the womb, children, adolescents and upward are not immune as Stroke is prejudiced it will strike anyone at any time. I know, I was in my 30s when I had my first Stroke.

What we feel is that education is the key in the understanding of Stroke and of Aphasia in particular. People know of Stroke usually because a family member has had one. But Aphasia is different, people just don't know what it is or how to handle the situation in meeting someone with it.

Outside of the group I am still nervous of meeting people and having even a short conversation with them but in the group it is so relaxed, easygoing and natural. At the group I feel normal, one of the gang as my husband puts it and it is important to be one of the group and not sit on the outside looking in.

I have such a lot to thank the volunteers for they are brilliant and have made such a difference to me. I can go along and be ME! Volunteers are sometimes treated with disdain which is most unfair. Without the hard work and great deal of time given up by them people in the group's situation would lose out and become very isolated as I did before joining them. They make life good and worthwhile once again.

My Mr motivator

I certainly need motivation at times and the person that does that is my husband.

We have been married 42 years and for the last 12 years he has been my carer despite having health problems himself. Last year when I had two strokes in two weeks he helped me relearn to speak and when I had almost regained my speech then this stroke occurred. I am having speech therapy this time but he helps me too and he does try to think of ways of getting me involved in everyday things. But he also tells me when to stop doing things and when to rest, he is the one who insists on my pacing myself and it is sinking in to me slowly that perhaps that is a good idea!

This week at the Aphasia group I go to there was Vitalyze, Chair exercising for disabled people and non disabled too. We were a big group this week and with carers and volunteers we took up quite a bit of the hall. Sally the 'instructor' played music from the 50s by Guy Mitchell and my husband was singing along, doing the exercises and moving my leg for me he was having a ball! We moved arms, legs, hips, neck and back, which for some people was very difficult as their arms or legs won't move and they had to be manipulated either by themselves or someone else. Then Sally handed out soft balls and streamers such as those used by gymnasts. For those with hands/arms that won't move the ball was to help them grip by placing the ball in the hand and using the other hand try and get a grip on the ball. The streamers had handles and those with hands/arms that won't move the handle was pushed into the immobile hand and then with the other hand/arm move the immobile one to make the streamer move. Due to other physical problems I have with the rheumatoid and osteo arthritis, fibromyalgia and Sjogren's Syndrome I started to hurt and my hands swelled up but I managed it. My neck hurt a bit from the exercise as I have a herniated disc and my hips from the osteo-arthritis where I moved them but it was amazing. Once again my husband made me stop when I started to hurt. We plan to do some exercises like this every couple of days just as we have speech therapy homework to do where he helps me pronounce sounds.

I am aware, just as I have found others who have suffered strokes do, that I get tearful at times for no reason and angry for no reason as well. I don't get angry at my husband I get angry with myself and the situation of things I can't do or do as well as I would like. The problem is when I vent he is the one who takes the flak!

I have been told I have no reason to be angry with myself or with the situation but I want to do more and I can't. I am tired of pushing myself and getting nowhere. Sometimes I just want to run away but I can't walk let alone run. I couldn't cope alone, so  it is a silly idea really.

Sometimes I wonder why he stays with me, except he says he loves me. He doesn't need someone who needs so much care to wear him out but he does everything for me. I know at times I don't seem grateful or pleased about the things he does but deep down I do.

I can't understand why I don't understand things sometimes, why some words are elusive to me or I can't say words that are so simple when others say them. He just says, 'don't worry. It doesn't matter.'

That is why I have written these two poems for My Mr Motivator, to show him and you how much I appreciate him.

Even if I can't

Could you still love me, even if I can't say 'I love you '?

Could you still hold me, even if I can't hold you back ?

Could you still take me out, even if I can't walk ?

Could you stay with me, even if I need caring for ?

Could you still desire me, even if I have a useless body ?

Could you still caress me, even if I can't feel it ?

Could you still talk with me, even if I can't express my thoughts ?

I can't say 'I love you' but look into my eyes.

I can't hold you but I can sit beside you.

I can't walk but I still like to see outside.

I need caring for but I can't let you go.

My body is useless but I can still lie beside you.

I can't feel you caress me but I can see you touch me.

I can't express MY thoughts but I can listen to yours.

A lovesong for my beloved

Long ago we made a vow

Something I remember, even now

To love and honour each other we said

I do not regret saying it as we wed

I love you now as much as ever

And honour you here with every letter

As we became one till the end of time.

Deep in my heart my love is strong

And spills out in joy as a love song

Passion, desire, caress and urge

Wrapped up in every single word

This outpouring of thoughts of you

Are words I promise are forever true

And will be the same till the end of time.

Inspiration from special people

If you were to ask me what I get out of going to the Aphasia group I would tell you, inspiration.

All the people there are amazing. The stroke survivors, who have been through so much and continue to work at improving albeit a struggle. The carers who walk each step with the survivors, help them, teach them, laugh and cry with them. The volunteers, some of whom have Aphasia themselves, tirelessly work to make each session a joy, interesting, manageable. They are all wonderful and they make my afternoon as just being with them I feel the inspiration flood into me and encourage me to strive to improve. The lady from the Stroke Association who comes along and has words of encouragement for each and everyone is prepared to listen and advise. My own Stroke Association lady, I live in a different area from the one where the group is held, told me it was great there when she recommended it! She was right.

I take away the inspiration, encouragement, joy and companionship to use in my poems. Essentially they are about me and how I am coping with the stroke and its aftermath. Just as this blog does but in the poems I express myself differently and more deeply.

I enjoy writing and always have and it is a medium that I can use to express my emotions much more easily than in speech. They start with an idea and then they grow, they are like a picture with words and sometimes I wonder if only I can see that picture because they are so much a part of me.

I wanted to express my feelings about how I felt before, during and after the stroke and my vision of a future. So I wrote the first one, somewhat complicated words, but I felt very complex at the time. The others also come from deep within me but hopefully not as complex!

After the storm clouds

Afternoon sun disappears behind the gathering clouds

White, scattered turn a silver grey

Gradually attaining a charcoal hue

Before cultivating a deepening brume

Obliterating the golden orb

Shielding it from human eye

Rain nebula gather to douse the earth

Rain falls pattering softly

Increasing in density

Beating a tattoo on solid ground

Drenching, impregnating, saturating, submerging

Until, exhausted, the torrent abates

The golden orb peeks through the depleted clouds

Luminous streaks radiate the sky

Glimmering on the waterlogged terrain

Conduits glisten as luminosity shimmers in sparkling dartles

The storm clouds dissipate

Opening to the brilliant arc emblazoning the skies

Red, orange, yellow, green, blue, indigo, violet

In scintillating perceptibility

Virtually tangible in proximity

The curlicue is a covenant of ameliorated future.

Would I change who I am ?

One day I asked myself, 'Would I change how I am ? '

Would I have a perfect life, riches and fame, glory and decorations ?

No ! I accept my life,as it is, imperfect, unrestrained, problematic.

I see others with perfect lives, unhappy, unfulfilled, unloved.

Their lives bear no comparison to mine

I see love in my husband's eyes as he holds me

I see joy on the faces of my grandchildren as they see me

Caring in my children as they help me

I don't need wealth of money, I have wealth of love

I don't need fame, I am known by those who count me among them

I don't need glory, I have tasted glory in achievements

I don't need decorations, I have been decorated with being called -

Mother, grandmother, wife, daughter, sister, friend.

My imperfect life is full of medical imperfections

I am unrestrained by my conditions as I strive to live each day

It is problematic, as I turn a problem into a positive.

They are not happy as I am happy to be who I am

They are not fulfilled as I am fulfilled
 What my conditions have taught me

I am loved, by those whom I love.

Turn a negative into a positive

Turn a low into a high

Turn sadness to joy

Turn hate to love

Turn cries to laughter
Turn discord into peace 
Turn bitterness into pleasure

Turn misfortune into a blessing

Make your medical problems work FOR you not against

Turn them into advantages not disadvantages

If you saw other disabilities as well as your own

You would surely chose the devil you know.

Life behind the veil

I seem to live behind a veil, seeing but not seeing the world outside

It is close, if only I could reach out I could touch it

I shout out the words, but no one hears my impassioned plea

I shout a wordless cry of help, falling soundless on deafened ears

I see them moving, talking, laughing as though nothing else matters in the world

I cannot join their revalries, I am shut out from the crowd

I hear them and reply to them but yet await for them to know me

I am shut, trapped, resigned to live in a shadow

Neither here alone or with them outside

I have nothing for them, no voice, no thoughts

If they would only notice this veil and pull it away

If they would come and save me from this isolation

I could be somebody, prove my worth, see the world and laugh and talk once again

One roll of the dice

Life is a lottery you buy your ticket and see what comes up.

Some win a jackpot and squander the lot

Others bank it for a rainy day

Others receive a minor win

Yet most win the booby prize.

You make what you will of your lucky dip

Squandering a fortune sends them crashing down

Banking it does no good for anyone

A minor win can accumulate riches if put to good use

A booby prize can be turn into a pot of gold, by using it well.

Your life is in your hands

Use it well or you lose the prize.

One roll of the dice equals one chance to get it right.

A little bit normal

I have named the way I now speak as Aphasiaspeak, of course it has no real meaning but to me it is a name I gave it to differentiate it from my own voice.

I have found I feel a little bit more normal at the Stroke Association group I attend as there are several people just like me with Aphasiaspeak. When I mix with people outside I am aware they are not sure how to communicate with me and today we had a visitor and I asked that she looked at me when she spoke, 'oh OK,' she said. It sounded a little like she was surprised at the request but to be honest it is just what you would do to anyone really.

I had to go to hospital yesterday to see the stroke doctor. She didn't keep eye contact with me and sometimes it was a bit hard to catch what she said and she didn't really listen to me. I know some people look to my husband for translation at times but even he, on occasions, can't understand. It is so frustrating when I cannot get the words out or find the word I want, I know they are there and many times I feel I could say the words but they just won't come. I have a picture in my head of what I want to talk about all I need is someone with telepathy! 

Communication is more than words, facial expression, hand gestures, body movement and your eyes all mount up to communication. If words fail you then if you can try with a few words and gestures it is possible to convey some meaning. I have often been told in the past if you couldn't you your hands you wouldn't be able to speak! Thankfully I can use my hands and it has made it possible to communicate what I want or need. 

I have been interested in what an American Aphasic has said about working with the law enforcement in his area. Some Aphasics have had problems with police officers who have taken them for being drunk as they couldn't speak properly. In a situation where a person is being interviewed by police officers they can become stressed and get confused as they are asked questions. If you start from the position of being unable to communicate and the pressure becomes increased then words do literally fail you. Police who are not acquainted with Aphasia do not understand the problems it can have, mostly that it is not just a difficulty in speech; that is just the obvious part of the condition. Reading and writing are part of it too and an Aphasic would most likely not be able to read any document given to them or even write their name and address. One thing that police should also realise it that understanding is very much lacking with many Aphasics. They cannot understand even simple instructions or follow a train of thought. It can look very much as though they are being awkward or belligerent when it is the process that doesn't work. 

It pleases me that law enforcers are willing to learn about conditions such as Aphasia. It is a long time coming as it isn't as though it is a new condition it has been around as long as strokes have affected people. If they don't have anyone in their family or friend circle with the condition they believe that there is nothing wrong as Aphasics look like anyone else it is just their speech that is apparent when they talk. But the fact they are willing to learn is a step in the right direction.

Aphasics are not abnormal, subnormal they are normal in their own way. Because I cannot talk well doesn't mean that I don't understand, sometimes I am confused and misunderstand what is said but that doesn't mean I don't understand everything. Reading is hard and a work in progress, writing takes time and I have to spend time finding words and meanings so I find the right word. I can go a couple of days without writing my blog while I search for a word I want. 

Patience is the key for people communicating with Aphasics, patience to have eye contact, speak slowly, if a question is not understood find another way to word it or write it down, draw a picture if possible and not use long complicated sentences. For me keep it short. Don't try and hold long conversations, keep to about 15 minutes and take a break before resuming.  I do tend to run away when it all gets too much but if I try and stick it out then my speech will become more and more incomprehensible. 

As I tick off the list of the effect Aphasia has on people I can see I am a little bit normal. My speech is affected, as is my reading to a degree and my writing is not too bad but takes time/ I do understand, mostly, what is said although I can get confused and panic.

A little bit normal? Yes I can take that, but what I would like is more understanding of the debilitating condition Aphasia is and that can only come about through educating people and the police are a good place to start.

Effort, time, practice and training

After three months I had hoped to see significant improvement in my Aphasia, I have but not in quite the way I had hoped.

In hospital the surroundings and the daily living was different and I coped really with just speaking. I understood and heard all that was said, sometimes I needed to clarify certain things but really it was fine. Looking back I felt comfortable there as people understood the problems we faced on a stroke ward. They could understand how we felt and reacted as they had seen it before and took time to sit and talk to us, encourage us and let us cry if we wanted to. I often had the curtains round my bed closed as frustration took over!

Then I came home and my husband has been excellent at figuring out what I want and what I need. We get by and he regularly treats me to a surprise not huge but to cheer me up. He does sit and talk with me, he holds me and lets me get the frustration out. He has always said that he doesn't know how it feels but does see what it does to me. That is all I ask.

After two weeks of respite care I came home again to start living and that is when I really noticed the problems mount. I had found the background noise a big problem in respite care, the dining room and television rooms the worst. At home the noise from the road is terrible and shops are so bad I have to wear ear plugs there as well.

Now things are adding up, I cannot watch the television or listen to the radio if there is a lot of talking on the programme. I love detective programmes but it gets to me after a while and I have to switch off. I listen to a classical music station which plays music with very little talking. I love to read but that is becoming more and more difficult. Partly the Aphasia I think there but also I have Sjogren's Syndrome and have very dry eyes. I find myself doing nothing a lot of the time and have taken to resting or playing games to get my brain working.

Maybe it is because I don't talk as much as I used to but my voice gets crackly after a while, I noticed this twice this week. Monday I went to the Trefoil Guild and enjoyed the evening of a talk by a young lady from Canine Partners who brought her lovely dog Whiskey along. I spoke to people and we discussed guild matters after the people from Canine Partners left but I had a very sore throat next day.

Wednesday I went to a club run by the Stroke Association which was set up for Stroke survivors to meet up but mainly the people there are Aphasic. I met people with different types of Aphasia and this made me feel much more at home and normal. I was told I am normal but up till then I was feeling isolated. One man cannot talk at all, one says very short sentences. I was happy that I can communicate as much as I can but for me it is when I try and explain things talking gets harder and harder. The thoughts are so fast the words are so hard to grip. Sadly some people don't understand this when I explain and say well slow down then. If only I could. I am thinking so quick I am not fast enough to catch each word and the words go along so fast I lose more and more of them. My speech gets worse and worse too and that is when people want me to slow down. A yes or no question is OK or a choice like tea or coffee, I manage that no problem but when I need to explain something then everything falls apart.

Something else happened today that I cannot explain. I said something to my husband and in my head it sounded 'normal' and I was excited. I said something else and it was back to Aphasicspeak as I call it. I asked my husband about it and he hadn't noticed any difference in my speech at all, so it looks like wishful thinking on my part.

I invested in some new earplugs and a pair of ear muffs yesterday when we went shopping. I like the new ear plugs better and with the ear muffs over I am a separate entity from the world. My husband has to tap me to get my attention when I am in them as I am on planet me.!

The noise in the shops was manic and if I hadn't been desperate to get some Christmas shopping in then I wouldn't have bothered.

So, you are wondering, if reading and talking is so hard how am I writing this?

I make things up in my head over a period of time and write bits down. I go away and come back to do more. I can spend ages looking for one word that I want to use and being a perfectionist I will search and search until I am happy and I will admit I am not always happy because sometimes I can't find a word I want. Effort and time are the answers to how I do it. I look on my writing as a form of sport where people practice and train until they put in their performance and hope the time spent in preparation has been worthwhile.

Is that the answer to my speaking problem? Not enough practice? Not enough training? Not enough effort? Not giving it enough time?  I still talk but need my husband to talk for me more which, he says, is a  novelty!

What happens then if things that I enjoy are being taken from me? I adore reading, I devour books. films, plays and television programmes. I dread to think I won't have anything left that I can lose myself in.

Aphasia is very isolating in many ways and it does cause so much distress. I feel that each thing I cannot do is a loss to me. I mourn for me before this and I am mourning with each loss of enjoyment. If people think that Aphasia isn't life changing then they have never had to give up anything that means a lot to them.

The architect, the builder and the saboteur

I try very  hard to explain to people how Aphasia affects me. They think it is just a speech impediment I have or they have met me before and say, 'what's happened to your speech? Why are you talking like that?' It is if I am putting on a silly voice.

I wish it hadn't happened but what has happened could have been so much worse, so I am grateful that a silly voice is all I have to show for my stroke. Well not all. My never ending struggle with background noise doesn't improve and I wear ear plugs now to try and block it out. I can't wear them all the time so something else has to be found but for the moment I am managing, just.

In trying to help myself come to terms with all this, and to support others like me, I started this blog. But out there are people who don't know what Aphasia is, or what it does to people and most of all the affect it has on them.

These are people who probably know someone with Aphasia or even care for someone with it, but the actual problems faced by an Aphasic is lost on them.

I have written this next bit to try and explain what background noise is like to me. I can't say it has the same affect on everyone with the problem as we are all different but I know how I feel and this is how I see it.

All communication comes from ideas gleaned from what goes on around us. We glean these from what we see, what we hear, what we feel and what we taste. The ideas are taken by our architect in the brain who draws up the plan for the builder to assemble into the different modes of communication; words, facial expression, gestures and sign language.


Think then what happens if a saboteur in the form of excessive back ground noise disrupts the work of the architect. As he draws up his plans he is bombarded with overwhelming noise that interrupts the other information that he needs to draw up the plans, so these plans become increasingly flawed.


As the saboteur keeps up his work the builder receives more and more defective plans to work with and increasingly the work starts to fall apart. The architect downs tools and refuses to work under the stressful conditions leaving the builder nothing to work with so, he too, goes on strike.

Only the saboteur is the winner in the power struggle.

 

Please insert she for he as appropriate!

Now if you think I have gone mad, I am sorry but essentially this is what is happening. We learn from a young age that what we see, what we hear, what we touch and what we taste will be the information that we work from and with for ever. We learn that sugar is sweet, so every time we see or taste sugar we know it is sugar. The taste is familiar and the look is familiar so it must be - sugar. Lemons are bitter, they are yellow and they look like a small  rugby ball. So when we taste or see one we know that it is a lemon.

Words are like that. We see them written down, hear them spoken, taste them as we pronounce them and feel them as we visualise them. If I close my eyes and hear the word rain to me it get a picture of wetness on my face and the smells of hot pavements and wet grass. 

If there is a lot of background noise I can't hear the word and I have nothing to imagine. So my architect is slaving away in very unsatisfactory conditions against the saboteur and sending defective words down to the builder who cannot make anything fit together. When the architect goes on strike the poor builder has less and less to construct with until, he too, can go no further and stops. 

That is when I can't talk any more because I have no words to say as they have been sabotaged and as I say I am very fluent in gibberish!

I went to the Trefoil Guild meeting this evening and met some wonderful ladies. They were wonderful in accepting me and helping me. Once only did I get upset because I couldn't make myself understood, but we got there in the end.

Tonight we had a speaker from the charity Canine Partners. These are assistance dogs for the disabled. We met a gorgeous black labrador called Whiskey who helps his owner Karenza at home.

She too uses an  electric wheelchair and has encountered people who do the 'does she take sugar" syndrome. I agreed with her as sometimes I feel I get the virtual pat on the head of there there. Her talk was interesting and an eye opener for us in the amount of time it takes to train the puppies and the length of time a disabled person has to wait for one. The guild are planning a visit to the training centre at Midhurst in Sussex and there is, she says, no opportunity to sneak a puppy home! Damn!

Karenza's situation is different to mine as my Aphasia is different from other Aphasics. But deep down we are basically the same. We all struggle daily, we all have highs and lows, we all want to be accepted in society. She said she has days when very tired that her speech is not as good as other days. My starts from a different starting point and goes down. But we both have architects and builders who are sabotaged by the saboteur. And when we are at our lowest, there is only one winner - the saboteur.