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DISABILITY and RELATIONSHIPS

It happened on a lazy Sunday morning.

Suddenly he stared at me blankly, mouth foaming, grimacing lips jumping. Then his body contorted. He fell down and my life as I knew it fell down with him and shattered.

A stroke happens when the blood supply to the brain is cut off, killing brain cells, says the Stroke Association, UK. This happens to about 450,000 people in England each year.

For the rest of his life my John was paralyzed and unable to eat. Worst still, he couldn't speak either. Neither could he read nor write!

'Aphasia,' is what the experts at Speakability UK call it, this insidious disability which twists one's communication cables, leaving one perplexed and unable to understand or to be understood most of the time.

I couln't take it all in. It was the end of my relationship, the end of my world, I thought. I was frightened, bewildered.

The first eleven months of daily hospital visits left no time for grieving, no time to count the escalating losses: loss of my man as I knew him, loss of my job, loss of friends whose concern and support rapidly turned into embarrassed sympathy. And loss of sex.

I agreed with everything the doctors said. Yes, I nodded when they spoke in their circle, the whole educated team of them. The consultant, his senior registrars, the doctors, nurses and therapists in diplomatic order of importance. They knew what needed to be done.

When they said he should have a tube stuck into his stomach for artificial feeds because he couldn't swallow, it was a final judgement, removing our right to the joy of family meals. They said he needed a single bed to sleep on, and I just sat there agreeing with them, afterwards to grieve the loss of the final hope of intimacy between us, our double bed.

After eleven months we left the hospital in a cloud of fear. He in his wheelchair carrying our shattered relationship and a pump with which to flush his liquid feeds straight into his stomach, and me with a head heavy with broken dreams, guilt and anger.

My anger almost killed our relationship completely. I remember storming out one night, ready to abandon my mate to the claustrophobia of his dependancy.

I came back, but my raw insides were slashed anew each day by the sight of his helpless, constant waiting. Waiting to be cleaned, waiting to be fed, waiting to be shifted. Pleading without words and with soft eyes which melted my core, to be supported, to remain part of a life which had lost its meaning.

But something kept us going. Call it love, perhaps. I think it was gratitude. Life didn't stop. That was something to be grateful for.

It was gratitude which was to teach us the biggest lesson of all: the lesson of acceptance.

Our relationship unnoticably but firmly cemented afresh, with little things like stolen catnaps and immense joy when the odd word slipped out. I received deep satisfaction from the privilege of being allowed to look after someone who loved me more than his words could ever have expressed before they deserted him.

Nine years later a big part of me, intertwined with his soul, passed into the fire with him with gratitude for the pleasure of witnessing how truly great we as human beings can be when life breaks us. I strew his ashes mixed with a part of me to the wind with a song of praise for the strength which can be evidenced only through deep suffering.

I sang to the greatness of being shown by those like my John, who are able to turn suffering on its head so as to give support and growth to those who witness it.

Sudden disability is not the end. It can be the beginning of a new relationship. It is worth hanging in. It certainly helped me to grow.

See also by Monica Clarke:
(1) 'Less Words, More Respect-My experience with Aphasia' (1997, www.Speakability.org.uk )
(2) Video: 'More than Words' (1999, sibstru@post.tele.dk)
(3) 'Directions without Words' in Aphasia Inside Out, ed Susie Parr et al (2003, Open University Press www.openup.co.uk/ ).

This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous new media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.

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Comments

Okeny-Lucia's picture

Captivating!

You are a product of the unknown story tellers that am discovering here in Pulse.

Talking of Stroke,as a health provider,you made me move with ease the explanation simply put for any reader to understand the complications regarding the circulatory system.

Congratulations for the strength and resilience all this time you had to nurse a close person to you and for even remaining steadfast.

Currently the World is seeing very dramatic changes un lifestyle diseases.Where communities that previously didnt suffered stroke and all,the trend has reversed and is across all ethnic groups.

I am impressed by this .........Something kept us going,call it love.

Lucia Buyanza
Reproductive Health

Monica Clarke's picture

Thank you Lucia!

A great compliment, indeed, coming from a professional health provider. Thank you. Your words mean more to me than you might ralise, Lucia. There were times, so many times, when I saw the professionals ignoring the wisdom of the carers, when they are such an important part of the team. Thank you.

Thanks so much for reading my piece.

With love and respect from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Stella Paul's picture

Congrats

Dear Monica

First of all, congrats on being the first to submit your Module 3, leaving us all behind! Your words and reflections of a past you so closely lived, are powerful,very touching and full of wisdom. God bless you!

Stella Paul
Twitter: @stellasglobe

Monica Clarke's picture

Thanks!

Hi Stella. Thanks for this message, which I see you sent on 1 Feb! Thank you. I just read your module 3 and wow, what can I say but that your research leaves me gasping. Wish I could be so thorough, although to be told I got wisdom does help! Love and hugs, Monic

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Stella Paul's picture

I admire you!

I have never met you in person dear Monica, but I feel a strong connection to you, which probably comes out of the deep admiration that I have for you. Just to know you fought apartheid is, like 'wow'! I mean, I can't even express it, but you are someone I am proud to have known! Much love to you on this Valentine's day!

Stella Paul
Twitter: @stellasglobe

usha kc's picture

Dear Monica , Thank you for

Dear Monica ,
Thank you for sharing us an inspiring post in captivating way! you always touch me and yes this time too.

hugs.

Monica Clarke's picture

Thanks Usha

Just read your article, Usha. I felt very emotional reading it, remembering the times I had to literally push people out of the way so my husband could have a space for his wheelchair. How right you are. And thanks very much for your continued support of me and my writing dear Usha. Love and hugs from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Ruun Abdi's picture

Dear Monica, This is indeed

Dear Monica,

This is indeed very touching and inspiring post which teaches us patience and acceptance for the difficulties we face in this world and it takes courage to do so. I liked most when you said "It was gratitude which was to teach us the biggest lesson of all- the lesson of acceptance"

Congratulations for a well done work!

Monica Clarke's picture

Thanks Ruun

You are an inspiring young woman and I am pleased to be able to read about the work which you are doing. Your smile sends hope and happiness to everyone you contact. Don't stop smiling!

Love from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Juliette Maughan's picture

Strength

This is a wonderfully written piece on your experience. I felt like I was there with you feeling your confusion, your frustration, your despair.

There is something very powerful about the conclusion of that chapter of your life. The bitter sweetness of it all. And the peace... a peace that resides in gratitude and appreciation. In acceptance.

May you mind be filled with the positive memory of a man that loved you and to have been able to recognise and embrace that love.

Blessings to you my sister.

Juliette

Monica Clarke's picture

Dear Juliette

Thank you so much for your encouragement. Yes, time has a way of healing and also of helping us to use our experiences as we go along afterwards. You are doing just that. I read your Caregivers article sometime ago, and know that young girls in Barbados have a chance of a bright, bright future if one looks at you as an example. Thanks again for your warm response to my article.

Love and hugs from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

amiesissoho's picture

Dear Monica, This is a very

Dear Monica,

This is a very creative way of teaching us to stay by the ones we love even when it seems desperate. The trying moments are the best of times to discover who really care about us. You're a story teller and a teacher of human relations. Support in times of need is rewarding. Thank you for sharing.

Amie

Monica Clarke's picture

Turning suffering on its head

Dear Amie

Thank you for your encouragement. Coming from you, I really do appreciate it, for I know that when you speak your words are from deep within, having experienced and overcome, and now telling others how to do so too. May Allah's sunshine continue to light up your path.

With loving thoughts from Monicai in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Celine's picture

Dear Monica, Thank you for

Dear Monica,
Thank you for sharing this incredible story with us. You are courageous and a faithful partner. It only takes love to withstand all you passed through. I used to think that it is only mothers who can stand such turbulent periods, but now I know that women do not just stop at being mothers, but faithful to the core to partners.

Cheers,
Celine

Monica Clarke's picture

Thank you Celine

Thank you. I made so many, many mistakes which I oft-times send up apologies for, in the middle of the night when my memories come flooding back. Your words offer me forgiveness and make my prayers feel lighter.

Love and hugs from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Jan K Askin's picture

Dear Celine, Your courage is

Dear Celine,

Your courage is on display in this intensely personal narrative. In baring your intimate and honest experience you help countless others to accept and conquer their worst impulses in the face of personal tragedy.

Your sister,
Jan

Jan Askin

Monica Clarke's picture

Thanks Jan

Thanks Jan for reading my piece and for your kind words. I'm sending you a personal message and hope to hear from you when you have a chance to read it?

Love and hugs from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Cali gal Michelle's picture

thoughts....

As a speech language pathologist, I can emphasize with you. With two mentally and physically challenged brothers, I know how beauty comes from brokenness. Or what we PERCEIVE to be as broken.

Now my life is full of perceived brokenness, so I am looking for the hope and beauty I know is there. Thank you for bringing this story. When I have more time, I will read it again more in depth.

Let us Hope together-
Michelle
aka: Cali gal

Listener
Sister-Mentor
@CaliGalMichelle
facebook.com/caligalmichelle

Monica Clarke's picture

Thanks Michelle

Thanks Michelle for taking the time to read my article and to respond to it. Aphasia is just such a frightful, silent disability, and as a pahtologist you must have lots of experience of the confusion it brings.

Yes, I like your comment about perceived breakage! The strength which comes from difference is amazing - for disability is really just that - difference - and if we accept each other as such, how lovely our lives become, for we are able to reflect the beauty of the universe on the faces of everyone, regardless of their differences.

Bless you - and big hugs to your two brothers who are fortunate to have you in their lives!

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

BlueSky's picture

Giving Pause

What a beautiful account Monica. You touch our core essence as you relay many of the experiences and emotional reactions that were part and parcel of the sudden and permanent affect of this assault on John's person. I appreciate so much how you were able to come to communicate and know him and continue to experience life together, having lost so much of what intimate relationships normally consist.

I get the impression that you experienced much more relational significance than is normally experienced. It gives one pause to consider their approach to relational intimacy, and how to cultivate and nurture that which is there, but found in a place deeper than we are naturally disposed to seek.

Best to you,

BlueSky

Monica Clarke's picture

Dear BlueSky

Thanks for your very kind comment, BlueSky.

You know what really frightened me when I became acquainted with the real disability experienced by the disabled?

Professional objectivity. I so many times wanted to scream when the professionals were very, very understanding and empathetic, but without warmth or admission of weakness in their own lives or experiences. I know that this is what their training has to be like, so that they can be the best professionals they can be. Speaking as a now retired health professional, I know that keeping ourselves objective and removed from the suffering we are trying to treat, is a way for us to preserve enough energy to do the job over and over again without burning out. As a professional myself, I appreciate that the training demands this.

Yet, when I witnessed it intimately it burnt me down. So many times, when asked to fill in forms about accessibility, declarations of need, exposing our souls on forms, did I want to scream PLEASE LOOK AT US AS PEOPLE! so many times did I want to say ' I say, have you considered what it must be like to go without sex for the rest of your life,' and mess up their questionnaires by being difficult......

So when I read your well researched articles of the situation in Congo, then I stand amazed by your logic and your strength, your power of forgiveness and your understanding of the sometimes skewered reasoning of the so-called ablebodied others in our world.

Lots of love and with great respect from Monica

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

noreens's picture

touching

Dear Monica,

You have such a nice style of writing. This is so touching and beautifully written - a tribute of your love for your husband. What a lucky man he was!

Much love,
Noreen

Monica Clarke's picture

Thank you Noreen

Thank you Noreen. Your words mean much to me!

Lots of loving and hugging to you too, from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Michelle Coburn's picture

Such a moving piece

Dear Monica, Thank you, once again, for your honesty and for sharing your deeply personal experience in such a touching, beautifully written piece. I admire your resilience through the many challenges you have faced in your life and am honoured to know you via this programme. You are an inspiration!

With love
Michelle

Monica Clarke's picture

Thank you Michelle

Hi Michelle

Thank you. God bless you for giving your time to the development of us as women organisers and activists in World Pulse. It is your encouragement, support and understanding which is truly helping me to bring the words out of myself. A true Midwife you are indeed!

Love and hugs from Monica in France

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Pat's picture

you touched my heart

Thank you Monica for sharing your moving story. Because I am in my late 60's and my husband is almost 70, I think about the limited time we have ahead of us and all that the future may hold. Your story moved me and I am touched by the stand that you took. I can imagine it wasn't an easy one, and we never know what we will do in that same situation so we must never judge.
Blessings,
Patricia

Patricia

Monica Clarke's picture

Thank you Patricia

Thank you Patricia. Yes, it is only when we are in them that we know what situations are like. All we can do in advance is to vow to continue to love and care for as long as it takes. Thanks for reading my piece and for responding.

Monica Clarke, Writer & Storyteller, bringing human rights alive.
I wish you 'Nangamso', that is: May you continue to do the good work which you do so well.
(A blessing from my ancestors, the Khoikhoi, the first people of South Africa).

Greengirl's picture

Your openness is touching

Though I have never met you in person, but your story made me think I have. As I read on, it seemed you were right in front of me telling it as it happened.

You are an embodiment of inner strength. I am just so short of words even though I know have so much I would like to say to you. You are one in a million, and you so much remind me of an aunty of mine, now 76 years old, who woke up one day to receive the news that her beloved husband had a complicated case of Glacoma. Of course he went blind. Just like you, she has been a rare pillar of support to him since the news was broken to her. It's been well over 30 years now. He is now 84, and they are just fun to watch and also be with.

Much as I know that Asphasia is a completely different condition from Glaucoma, I couldn't but relate your story with theirs because of the similar experiences you share.

I am glad you pulled through the initial shock, fear, anxiety and misgivings. It is only natural to express such feelings, when negative things we never could imagine, happen to us.

You are a darling and I love your down to earth style of writing.

Tons of hugs to you and him!

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