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.

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.