Chic womankind (and mankind)

Mirror, mirror on the wall, who is the fairest of them all?

We all are! Everyone has the potential to be attractive and well dressed. I don't mean expensively dressed just well dressed.

Being disabled and using a wheelchair means I prefer to wear trousers, jeans, slacks, cropped trousers, as long as they are comfortable. I wear tunics, tops, t-shirts and sometimes a blouse.One requirement is that they have sleeves these days. I do have skirts and a dress but frankly I prefer trousers when I am in the chair as they are much more practical. I have seen some very unfortunate sights of women wearing skirts or dresses sitting in a wheelchair and it was not a pretty sight either! Skirts too short and showing, what my grandmother called 'next week's washing'! Oh dear!!

Being disabled doesn't mean you have to look scruffy, badly dressed and not care about your appearance. That is what non disabled people think we are like. A little while ago two friends spoke of their encounters with people who had definite ideas on what we should wear. One met an acquaintance who said, 'Oh, you look nice!' In a surprised voice. To which my friend replied, 'don't I usually then?' Exactly. This is a person who takes pride in her appearance, visits the hairdresser regularly and dresses well; not expensively but well (there is a difference). The other friend was affronted when a 'well meaning acquaintance said my friend should wear tracksuits rather than what she was wearing, 'as it would be better for people helping you dress!' The last thing my friend would wear is a tracksuit! How dare people say such things, but they do.

It is the season of parties and celebrating and as much as anyone I will dress to impress! Sparkles, spangles, shiny stuff, silver earrings, silver bangles, sparkly rings - you name it I will do it. And all cheap too! I am not going to break the bank with diamonds and other expensive gems but will sparkle, ta dah!

As I will be encountering my fashion conscious two and a half year old granddaughter over Christmas I will HAVE to wear sparkles or get told off, yes I am nagged by a mini fashion designer. But I am happy to wear sparkles, even sparkly nail varnish.

So, why do people have the idea that disabled people can't wear anything à la mode? Perhaps they think we would get too much above ourselves if we dared look like everyone else, or dressing down kept us in our place, perhaps they think we can't 'carry it off' like a non disabled person? Perhaps all these reasons.

At the Christmas party for the Stroke Association Aphasia Group I looked around and everyone was beautifully turned out, especially the ladies. Sparkles, Christmas earrings, party hats, smart trousers mostly but a few dresses, makeup, hair coiffed, everyone was determined to look their best. And why not? Perhaps we are disabled and our speech is dubious but we like to have fun. Eating, drinking, pulling crackers, playing pass the parcel, doing a quiz and singing Carols; wonderful. A scene no different to that at any club, group or office party. I always dressed up for my office party so I am not going to stop now!

I am not offended when someone says to me, 'I do like your scarf, where did you get it?' Because they appreciate my taste. It is those who say with an air of amazement, 'that is a lovely scarf YOU are wearing.' I  just say, 'yes I chose it because I like it.'

I wore an unusual poppy leading up to  Remembrance Sunday, it was knitted by a member of the Trefoil Guild. Everyone who saw it commented on it and asked where I got it, I swear I could have sold nearly a hundred of them! It was a talking point and got me conversing as well as I could with people.I have had various conversations over the years with people about clothes and accessories and, whilst many have been favourable to my tastes, some have looked at me aghast when I say what I think of an item. Sometimes even the comment of 'YOU would wear THAT' has been heard, adding, 'you are in a wheelchair.' Umm, yes, this is a wheelchair, ten out of ten for observation!

 I have noticed that the men at the group also looked well turned out, whether that is them or their wives/partners doing I am not sure but it is encouraging to see them taking pride in themselves. Being disabled doesn't mean loosing your tastes, ability to chose for yourself or mean you should look like a scarecrow. I visit the hairdresser regularly and she will tell you I have the ability to tell her what I want done. I have my eyebrows, lip and chin waxed as those wispy hairs get on my nerves. I shave my legs - yes OK so I wear trousers, but I know that my legs are hairy! I don't wear makeup as it aggravates my eczema and I have Sjogrens Syndrome which causes very dry eyes. But I am clean and I make sure my hair is washed and tidy so I am not worried over that.

Becoming disabled does seem to be accompanied by depression and one of the signs of that is when a person stops taking a pride in their appearance, I know this from experience. It is so easy to not bother washing your hair, changing your clothes, washing clothes and pressing them. It becomes a downward spiral. So when a disabled person does take pride in themselves it shouldn't go unnoticed but done in a sensitive way. Instead of telling them what they should wear, compliment them on the colour chosen, the style, the cut, the fabric. I was told how lovely a tunic I bought looked because the collar draped beautifully. I was told the colour complimented my colouring, how nice the fabric looked. That is what I like to hear, not the amazement that I would choose such a thing!

Yes, like a lot of people I have made big errors of judgement in certain purchases but on the whole I chose what I like for me, not anyone else. After all I am not asking them to wear it!

The late, great Joyce Grenfell in one of her monologues said of clothes, 'They look quite promising in the shop, and not entirely without hope when I get them back into my wardrobe. But then, when I put them on they tend to deteriorate with a very strange rapidity and one feels sorry for them'. I daresay many of us can empathise with that feeling.

So, this season, or any season dress to impress - not anyone else but yourself. Disabled or not, “Clothes make the man. Naked people have little or no influence on society.” said Mark Twain.


And Karl Lagerfeld said, “Never use the word “cheap”. Today everybody can look chic in inexpensive clothes (the rich buy them too). There is good clothing design on every level today. You can be the chicest thing in the world in a T-shirt and jeans — it’s up to you.”

 

Chic womankind

Minis, maxis, on the knee

Cropped pants, shorts, slacks, jeans

T-shirts, vests, blouses, tunics

Jumpers, cardies, shrugs, hoodies

Shoes, boots, sandals, crocks

Bare legs, stockings, tights, socks

Raincoats, overcoats, duffles, parkas,

Fleeces, shawls, capes, cagoules

Hats, caps, berets, snoods

Earrings, necklaces, brooches, pins

Rings, bracelets, cuffs, bangles

Handbags, satchels, rucksacks, purses

Holdalls, shoppers, clutches, carriers

Wheelchairs, crutches, sticks, scooters

Looking good, looking smart

Proud of the reflection in the mirror

Brush your hair, put on the lippy

Slick on the mascara, paint your nails

Spray on the perfume, face the world.

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.

Poetry in motion

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

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

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

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

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

More than words can say

I don't need words to express my feelings

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

My body too tells you all you need to know

Who needs words when there are other ways.

To show my love I open my arms

I hold you close and hear your heart

I smell your scent, I taste your tears

I feel your love, do you feel mine ?

I express my joy with smiles and laughter

I smile with my eyes as well as my mouth

Ecitement flushes my reddened cheeks

My energy flows like red hot lava.

My sadness fills my entire being

Tears fall, compassion shows

Comforting arms hold shaking bodies

A hand mops eyes red and sore.

I am not dumb when other ways,

Can be found to express my feelings

I ask your patience and observations

Actions speak a thousand words.

Words of hope

Tears course from swollen, reddened eyes

Dripping unseen to wet the floor

Frustration builds like a volcano inside

Filling my being bringing pain to the fore.

Feeling helpless and hopeless a daily chore

Searching and probing the depths of the mind

Where once an eloquence spilled forth

Now empty gaps fill a troubled brain.

Words of platitude do not help

They smack of sufferance and pity

A gesture of love quietens my whirling brain

Accepted from a loving hand.

Accepting a state of confused emotion

A world where words mean more than action

A world so different to the one I live

Words fail, hopes dashed, stress reigns.

Acceptance in this world of yours

Means more than wealth galore

To be seen as one with you is all,

I ask from each and everyone.

Don't mock or tease. Don't patronise

Don't fill my space with your own words

Patience, I ask, is all I need

And time to talk at my own leisure.

Not words alone

Words spin wildly in my head

I lurch and grab at every one

They soar away out of my reach

Before I chance myself to speak.

So many things I have to say

Words that tell how I may feel

They each express my hopes my fear

My desires and love of those most dear.

I long to say to each and one

I love you, need you, hold you tight

But words are fragile they come they go

They never stand clearly in a row.

My thoughts stay buried in my mind

Not able to reach my waiting lips

I tell my thoughts not by words alone

Gestures fill the void words fail to hone.

What do you see ?

Look at me, what do you see ?

A person, that is me.

I have feelings, I have hopes,

I have desires by the bucketloads.

If you hit me I will hurt

If you cut me I will bleed

If you call me offensive names

I will cry tears of pain.

Inside, I am just like you

I love, I hate, I worry too

I am no different to all I see

I have a voice deep inside of me.

I didn't ask for what is done

I cannot change it, fate has won

But I will never sorry be

That what has happened, happened to me.

My voice will not carry through the air

It fails to register a note to share

But write, I can and my words are said

In black and white and can be read.

I tell you, I am human too

With blood and bones and feelings true

If you have time to read my words

You will hear my voice as it is shared.

Because I am different to you

It means I see things not clearly viewed

I see them from deep in my heart

Those are what I try to impart.

Together we can make a change

In peoples' perception easily made

The fight is on and with your help

A different generation will surely swell.

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. 

Accepting help, it isn't giving in

I have always been independent and to be in control. I have found it hard asking for help but I know I have to and it isn't easy.

Since my stroke I have had to accept I have need of special aids, so when the occupational therapist suggested things like a profile bed which,with the use of an electric controller, helps me sit up, lie down etc I agreed. I have a raised seat on the toilet, a bath board to help me get into the bath to use it as a shower and a perching stool in the kitchen so I can help prepare meals.

These are practical aids but due to the Aphasia I also need emotional aid. I for that I had to turn to the internet.

I found a group on Facebook call Aphasia Recovery Connection. They are based in America and the people on there, not all American, are amazing. They have been such a help to me, befriending me, giving advice, making me feel better when I am low and laughing with me when I am happy. Friends, one and all. It is a relief to know there are other people like you out there as Aphasia is very isolating.

Every now and again a question is put up and the members of the group say what they feel. I wrote about how people should treat Aphasics. I said: Talk to ME I hear, understand and can talk if you give me TIME. Don't tell me what I mean, don't finish my sentences, have patience. If you hurry me, harass me, get impatient with me I panic, get frustrated and then cannot say anything.

People agreed we need others to treat us just as everyone else. Yes we might take a little longer to answer but it won't help if other people try to rush us, harass us, try and second guess us or finish our sentences for us. For me that means I go into panic mode, get frustrated then I cannot say a word. As I said the other day I am fluent in gibberish, but nothing else!

They also have a games forum where fairly simple questions can be answered generally to do with the small words people 'lose' when trying to talk. The, and, on, in, under etc. I am so happy to have found the group and have become friends with some of them already.

I know my concentration is bad so I do games on Facebook, not many but ones that mean I have to match cards, put three of the same thing in a row, fairly simple you might think but when you forget something as soon as you take your eyes off of it well then you have to work harder! Some games I cannot get into even though people invite me to play, but if I am going to panic when I can't cope with it what is the point. It is a thank you but no thank you scenario.

I had a visit from a lady representing the Stroke Association last week. She was very helpful and when I explained I have this connection with people on the Internet she was pleased I was getting involved. I told her I also go to Church and church meetings and except for the services the meetings are small groups. I am going back to Trefoil Guild; the older ladies of the Guiding Association, and I have told them about Aphasia already. But what I don't have is access to people with my problem. So she told me about an Aphasia group her mother belongs to. It isn't too far away and it is run by the Stroke Association but for Aphasics. There is a Stroke club near us but it isn't specifically for Aphasia. Meeting others with a speech problem will help the feeling of isolation.

I will admit that most people I have encountered out and about have been brilliant they accept that I need time and are willing to help me however they can. I relax better in that sort of environment but will admit that even my husband doesn't always understand me!

With all this help available I hoped that there would be something for the background noise problem I have. But no, there is nothing. All the Speech Therapist could say was try and block it out: but I can't. I mean, I wouldn't be bothered by it if I could would I? Even sitting talking to her the noise from outside made hearing her and understanding very difficult. She says I use a lot of facial and hand gestures which is good communication, which I am happy about. I have flashcards too for when I have a very bad day. 

So the speech therapist thinks I have a problem with heightened sense of hearing. This isn't good news as the sound of talking, traffic, cutlery, crockery and music is much more heightened to me than others. My husband and other people say they can block it out unless it is very noisy, what is ordinary to them is extremely loud to me. I have searched the Internet for articles about the problem but apart from a passing reference, there is nothing. My neuro-physiotherapist was going to talk to the stroke consultant to find out if I can be referred to an audiologist and see if they can help.

In the meantime I invested in some foam ear plugs. They were useless, they don't block the noise and they just come out even if it does say on the packet they are for travelling, snoring and sleeping. So today my husband went out and came back with some silicone ear plugs. I put those in and they work. He does insist of speaking to me although I say I can't hear him! Only problem is I don't think I can wear them all the time as there is no way for air circulation. I have seen some on Amazon I think I will invest in, they look a bit like mushrooms and have space to have air get around. I will see, it depends on the use these will get. It does mean people will have to look AT me to speak to me and not mumble. It will be interesting going to the Aphasia club to see if there are any others with this problem and find out their way of dealing with it.

Apart from the Stroke Association UK Connect - The Communication Disability Netword and Speakability also give help to people with Aphasia in the UK. 

Once I accepted I needed help, not with everyday processes of getting up, washing, dressing, but with speech and hearing I found so much out there for me and so many people willing to give time and effort in befriending me and sharing experiences. 

Coming home from hospital isn't the end of the journey it is the start. Being in touch with other people who have the same problems and concerns isn't immersing yourself in despair it is sharing the good and the bad with those who really understand. That is so much better than sitting at home isolated and miserable.