EDGES MAGAZINE Issue 19

October 1999

MY DOCTOR MADE A BLUNDER
E.J. was given the wrong prognosis from her doctor.
For 15 years it dominated her life.
Dear Doctor X,

Fifteen years ago, you imposed a diagnosis on me which was hard to come to terms with – the disease was rare and degenerative. Over the years I have learnt to accommodate my disabilities. I have accepted my condition, the pain, the frustrations. It was your prognosis which was devastating. It was horrific. I would, according to you, go out like a light bulb on a dimmer switch, slowly but surely being turned off. The full realisation of the implications, added to the estimated time span, produced all-consuming terror which has been with me ever since. Well almost.
Recently I was given news that felt like the lifting of a death sentence; not only from my body but also from my soul; my entire being.

You were wrong Doctor X: you were floundering in unknown territory and you were wrong. Because of that you deprived me for years of some of the best moments of my life. For the past fifteen years I have felt on the edge of life; at the core of my being was always the deadly time limit and the awfulness which was to accompany the final descent into oblivion.

Healthy people would say that none of us knows what’s round the corner – that’s the whole point. When you are fit and well you don’t know – I did know! The healthy have a clear road ahead in their mental visions. They are aware of possibilities, but nevertheless, don’t have a black wall a short way down the road of their expectations; that is the huge difference.

I came to you with trust, you came highly recommended. You seemed friendly and knowledgeable. I placed my life in your hands. I assumed this prognosis, which overshadowed my existence from then on, was based on sound medical science. From then on, everything has been measured in limited terms; time seemed short; there was so much to cram in. Everything was ‘before it’s too late’. There has been so much anguish and heartbreak whose ripples extended to encompass the family and close friends. My wonderful husband would help me plan how we would cope eventually. He has supported me 100% all along. The better our moments the deeper our silent anguish – I learnt to cry silently, inwardly – I learnt to explode inwardly and scream “I want us to grow old together – I want to see my children’s lives develop – I want to see my grandchildren – I want them to see the vibrant person, not a shell teetering on the edge of existence – what would they know of the person I still was somewhere in there?”.

There is festering anger; hopeless sickly fear, the depths for which there are no words to portray adequately. Over the years you have introduced all of these to me.

You took away the joy and hope of a future. Everyone has a basic right to hope for a joyful old age. For fifteen years, the sight of a happy old couple has reduced me to floods of tears.

I distanced myself, somewhat from my children, thinking it would make life easier for them in the end. When grandchildren came it was harder than ever. I felt I must stay on the margins of their lives to make it all less intolerable when things got bad. I have hurt them all by doing that. I have hurt my husband too. My poor old mum used to worry so much; she died last year. Its too late to tell her.

You can never give me back that time so that I can change things, Doctor X. What happened to you? How could you get it so wrong? Were you trying to be too clever? How many of us are in the same boat?

You see things came to a head, after all these years, over the hereditary question. But it soon became apparent that the boys were OK. For the last two years I have believed I might have to tell my daughter she should not have children – I felt suicidal at such a prospect. The torture of this situation felt like being enclosed in barbed wire with no means of exit. Yet, ironically, it is thanks to that very situation that today I am able to write this letter to you. You were so wrong – I am told that I may find that I might not degenerate further – I am content with that. There is no question of the prognosis you gave me coming true. I can now rejoin the ranks of those who don’t know what’s round the next corner. The best news, of course, is that there’s no danger to my daughter’s future children.

Good news of this magnitude produces a state of shock akin to receiving bad news. I have been through a period of disbelief; difficulty in absorbing the facts; terrible anger see – sawing with indescribable elation. I have needed time and space alone in order to understand.

Now I am slowly coming away from the edges of my existence and discovering a new light in the picture of my life. I feel physically lighter. It’s an experience of such magnitude that it must not be forced or hurried.

I hug my husband and dare to hope for a ripe old age. I hug my daughter and my entire inner being weeps with relief. I am thrilled to feel all my children close again – I dare to allow my grandchildren to get to know me. I hug my close friends. I marvel at the fact that God’s precious gifts will be mine for so much longer. All my senses are going through a process of rebirth. It’s not for shouting from the rooftops; it is for relishing gradually and thoroughly – I have a future! We have a future!

I believe in forgiveness. I believe in this meditation I read recently. Because of that I won’t be posting this letter to you.

“Leave the past to the mercy of God;
Leave the future to the providence of God;
And the present to the love of God.”

I had death – now I have life.

Yours sincerely E.

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. Material Copyright © 1999 THOMAS (Those on the Margins of a Society)
THOMAS is an integral part of Catholic Welfare Societies, Registered Charity number 503102