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.