D-Day

5.50am    “Sorry to wake you…” a doctor’s voice abruptly cuts through what had finally become a reasonable sleep on one of those operating tables that pass for beds in hospital.  The doctor had arrived well before dawn in search of blood from an artery (ouch); blood that evidently had to be asleep for some special reason.

So begins D-Day. A day much like any other for the thousands of commuters already streaming through the arteries of the city below my seventh floor window. It must be a special day for some; like the few I see afar off, drifting in a pair of hot air balloons blinking in the pre-dawn sky as their flames briefly ignite.

But for me this is Diagnosis-Day, certainly the most challenging day in my calendar.  I have faced this day numerous times in the last 18 months in hospital wards and specialist suites.  I wonder if it’s like the experience a convict endures, having to present himself before the magistrate to be sentenced?  Sometimes I feel just such intimidation in the presence of the generous and dedicated people that make up this vast system.  I am much better at this than I used to be. I even slept much of last night – something I could rarely manage on the eve of D-Days past.

11.05am    The hours of the hospital day draw on. Most days are made lively by consultants who poke and probe with the confidence of years, and medical students too timid to touch. But not this one. On D-Day each hour seems to pass a little more slowly and last considerably longer than its parent.

1.50pm    I am fixated on three letters: PLS – the acronym for an extremely rare form of motor neurone disease, slower and less fearsome than others but apparently impossible to detect. Yesterday the Neurologist mentioned this again as an “emergent possibility”. It’s the fourth time I have heard it discussed, and it’s the only possibility that has been named in six months.  I’ve done some more reading today: with a statistical incidence of as few as one case in ten million people, what are the chances that any of the doctors have ever actually seen this strange condition?  And why, oh why, would I prefer a grim diagnosis to none at all?

“I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death” (Philippians 1).  

3.10pm    Quite suddenly the Registrar is here; and almost as quickly it seems she is gone, leaving me to rephrase questions in my head and concoct alternate outcomes for the nauseatingly familiar conversation we have just concluded.

There is no result. The Neurology team can find “no clinical symptoms for your complaint, except perhaps your reflexes which are somewhat brisk”. What?!  The minor issues of being unable to walk or push my own wheelchair somehow never make it onto this list called “clinical symptoms”.  While in the last two days speech therapists have come and raised such gruesome spectres as assisted communication technologies and tube feeding, the specialists merely say “come back in six months and let’s see if it gets any worse.”

But the king-hit was still coming. The young registrar had one more blow to land. The bit that really screws with my head. “Because there appear to be no organic causes of disease, the doctors are still considering inorganic causes”.  Hence yesterday’s pair of psychiatrists probing for signs of depression or stress that might just be behind it all. The thought crossed my mind that they were travelling together to give each other moral support on such an improbable quest. It felt like a posse.

4.45pm    If there wasn’t stress before, there sure is now!  Yesterday I asked the psychiatrists: is there anything at all about me that strikes you as depressive?  Tell me please, I want to know.  Because I feel further removed from depression than I have been in my entire life. I still can’t comprehend the contradictory observation of one doctor that I am not, in his opinion, sufficiently depressed at losing my mobility. Come on people, make up your minds!

3.40am    D-Day seems now to be rolling over into a new dawn.  The mental pressure of the “inorganic causes” theory feels like it might just push me over the edge into the very mental health issue they are looking for!  “Told you so!” says the posse.

But a new dawn is coming; and with the new dawn will come renewed vision and hope, and the prospect of heading back to my home in the company of a good and kind friend. Thank God for that!

Rejoice!

11 thoughts on “D-Day

  1. anne iuliano

    Hi Rod,
    Oh my goodness, what a day for you! I am shaking my head as to how your day unfolded and the conclusions being drawn.

    I am increasing my prayer that either you are totally healed without even a diagnosis, or that the problem may be identified and that it is one that can be easily ‘cured’. Is that the best way to pray for now??

    And of course, for the peace of God, which goes beyond our understanding, to guard your heart and mind (and your family’s too) through Christ Jesus.

    Thank you for your honesty.

    Anne

  2. Beant Deacock

    Hi Rod,
    You are a man of strong mind and can clearly suss out the system and what’s going on. In man we may not but in God we trust – I know you do rely on this most potent medicine. I do hope that these ‘specialists’ can find an answer to your medical condition. My best wishes and prayers are with you and your family. God bless. Beant

  3. Thanks Beant for your thoughts, so much appreciated, and so nice to hear from you. Please give my best to Nick. I’m just starting a book about climbing Everest which makes me think of the humble attempt Nick and I made on an Australian mountain so many years ago.

    In God we trust indeed!
    R.

  4. Brad

    Rod,

    What to say?

    Perhaps more so than ever before, I feel like I’m straying onto sacred ground as I read your blog. If you weren’t inviting me into that space I’d feel like violating something very private. You take me on a journey as I read about your day. I don’t pretend that I can feel what you’re feeling, but still I do get a very real sense of the frustration and helplessness you’re experiencing.

    Throughout this journey you’re sharing with us, I’m encouraged by your deep, unfaltering faith our God, who loves us and ordains every day of our lives.

    I’m praying earnestly for you. For something… a diagnosis… healing… peace of mind.

    But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance. (2 Peter 3:8-9)

  5. Hey Brad,
    Writing about life is an amazingly rich resource for living it! And it does much to demolish the barriers of isolation and seperation that for so many people lead to loneliness. Responses such yours remind me just how connected we all are, how much we have in common with one another despite the difference in our paths.

    Great thoughts from 2Peter. Strangely I rarely lack peace of mind – other than on D-Day when it comes around.

    Blessings friend!

  6. Judy Josling

    Dear Rod,

    It was wonderful to read your latest blog, which it always is! You express yourself so beautifully in writing. I myself, while struggling to write assignments, can’t hold a candle to you! I find myself so honoured to read each one that I’ve now become a subscriber. Keep it up.

    Love and good wishes to you and the family.

  7. Thank you Judy! I hope I will keep going; writing this small weekly essay has become a sort of life-line, and it’s such a joy to be connected to people.

  8. Kevin

    Dear Brother Rod
    My eyes well with tears as I imagine the absolute frustration you must be feeling at the whirling merry-go-round that is the medical system. I often suspect refering to medicine as a science is generous as there always appears to be an overwhelming amount of luck and or guessing involved in making a diagnosis. Trial and error seems to be the flavour of the day. If in doubt, do another test. If that does not work, do something else.

    What does it matter, a diagnosis? Treatment is for the symptoms anyway. Karen and I have you all in our prayers and regardless of any outcomes God is glorified. Be good.

    Kevin Karen Kathryn and Keaton

  9. Your’e right Kevin – what does it matter? In a way not at all, in other ways it would be easier to not be forever wondering; and it is becoming more and more problematic to access services without a diagnosis.

    Absolute frustration only lasts about 2 days beyond “D-Day” I find. I wrote this blog with the frustrated tone; but most of the time I’m not all that anxious about it all; just getting on with it. Im grateful for that.

  10. Pingback: Life was simpler with MND « Rejoice!

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