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arkallen

Distinguished member
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Mar 8, 2009
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Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
And so the doctor said ………

"It's too soon to know".


After two years it's an incongruous turn of phrase. My reaction is an all too familiar paralysis, giving way over a day or two to a turbulent mix of fear and hope. Fear that Diagnosis-Day is still to come at some point in the future, and hope … well there is always hope, whatever may lie ahead.

But I wish, I just wish and wish that a doctor would tell me what's actually going on, where things are at, and what to expect next. "Surely", I say to myself, "surely the words probably or possibly can't be that hard to get your tongue around?" Couldn’t one of these experts venture an opinion that might be useful in framing the future? A few thoughtful words could go a long way! I've heard the same hesitation from enough professional mouths to realize, finally, that their corporate lack of opinion must be quite reasonable, even though it feels to me so utterly contrary. Anything instead of this endless silence!

This weekend we held our annual church conference, "Kingdom 2010", a glorious day of praise, inspirational speaking and great friendship. There's a challenge, though, in meeting with friends and colleagues in a power wheelchair, wired up with a voice amplifier to boot. These accessories, invaluable as they have come to be, are more than merely embarrassing. They are a deep and unwelcome incursion on the image of myself that I still cherish. During conference it was strange to see my old unencumbered self on the screen in footage from previous conference years: fit and strong and completely free of medical add-ons. But more intimidating than all the external paraphernalia is the internal burden of 'unknowing'; a sense akin to foolishness that sends me groping for an explanation when people ask, "How are you?" or worse still, "Any answers yet?" Christians above all people should be good at mystery; we should be well versed in dealing with the unknown. We believe, after all, in the resurrection of Christ, the Trinity, the heavenly host of Angels and a host of other mysteries besides. But when we proclaim, "faith is the substance of things hoped for", our natural inclination is towards substance over hope. We want to touch, hear, taste and see. I suspect many of us regard faith merely as the catalyst that transforms hope into substance. I, for one, crave the solid reassurance of knowledge. The dark silence of unknowing is unnatural.

Most days of the week I exchange an email with a good friend whose circumstances are somewhat more challenging than mine. A few years back Grant suffered a cerebral aneurism, an unexpected and severe blow, and I had the privilege of visiting him as an able-bodied hospital chaplain. Just a few months ago we met again, this time sitting in opposing wheelchairs across his dining room table. How things change! Grant's condition has often teetered on the precipice of steepest decline; more than anyone I know he lives on the brink of eternity. He is well qualified to remind me of "the rich dependence of unknowing" as he did in our correspondence yesterday. There is such wisdom in those words, and in my friend I see something I deeply admire.

Well, I’ve had my rant; I’ve once again vented my anxiety and to some extent dealt with the grief that presses behind my eyes. Unknowing is my lot for now; and it is my gift, a gift from above. Indeed, “The secret things belong to the Lord our God” (Deuteronomy 29:29). Who of us, after all, knows much about our future?

Perhaps the silence of unknowing is an invitation to true spiritual life. Perhaps faith is the essence of hope.

The need to know is so finite, so human, and of course that is what we are. What I do not know provokes my dependence on the Alknowing.

Rejoice!
 
Roderick,

This is written after your visit to the new hospital, the new testing, etc.? Still no solid diagnosis? Forgive me, I just read how you hate that question, yet I ask it anyway. Your "need to know" is common to us all, I would suppose. In the States, it makes a difference about whether or not you're eligible for help with the equipment that is or will be needed, at the very least.

Your statement, "I suspect many of us regard faith merely as the catalyst that transforms hope into substance. I, for one, crave the solid reassurance of knowledge." is one that I understand well, having (as have you) been told to just believe, and the healing would come. It doesn't line up with what I believe the entire Word teaches. The knowledge we have, the assurance itself, is entirely different. Bless your dear friend with the cerebral aneurism and his wisdom.

I am sorry that the waves are so rough. The unknown, for me, is how long I will have any given ability. I realize that it's a common question, probably to all or nearly all of us. I'm sure it's also one of your own. I pray for your peace.

God bless you,
Ann
 
I read all of your posts, and just don't know how to respond. Your words impact me so profoundily, that I am unable to articulate my feelings. If you knew me, you would understand the true meaning of that statement! I so wish my husband could find peace. He is consumed with figuring out the unknown. That being said, we too believe that hope is not possible without faith.

Today, our goal is to find joy in the day, no more but no less.
 
Roderick,

Thank you for sharing your frustration, hope and strength with us. I do hope and pray that God gives you peace and understanding for today and each day. We are truly in his hands and he will guide us on our way. The joy of the Lord is our strength.
 
I read all of your posts, and just don't know how to respond. Your words impact me so profoundily, that I am unable to articulate my feelings. If you knew me, you would understand the true meaning of that statement! I so wish my husband could find peace. He is consumed with figuring out the unknown. That being said, we too believe that hope is not possible without faith.

Today, our goal is to find joy in the day, no more but no less.

Thank you Missy,
I think that finding Peace can be one of the most difficult searches in life. Peace, when you think of it, is really the greatest thing we can have.
Blessings!
R.
 
Roderick,

Thank you for sharing your frustration, hope and strength with us. I do hope and pray that God gives you peace and understanding for today and each day. We are truly in his hands and he will guide us on our way. The joy of the Lord is our strength.


Im actually feeling a little dissapointed in the way I wrote this post! But I guess the sun needs to go behind the odd cloud in all our lives doesn't it? Thanks for your thoughtfulness.
 
roderick.
i am sorry this is an unsettling time for you and hope you do get some answers soon.
as a fellow christian i'd like to point to a scripture.

2corinthians 1v8,9..................."we are under extreme pressure beyond our strength,so that we were very uncertain even for our lives.
in fact we felt within ourselves that we had recieved the sentence of death.
this was that we might have our trust,not in ourselves but in god who raises up the dead"

nothing is ever certain in this life ,all we can do is trust in god.
i like the previous scripture in v7 and find it very fitting for our forum family.

"and so our hope for you is unwavering knowing as we do,that just as you are sharers of the sufferings,in the same way you will also share the comfort".
 
I finally got my diagnosis after a year of trying to get someones attention.
I am still in shock mode.
But'''''''';;;;;;;;;.............. My answer to my heart was to enjoy each day as a blessing as anyone else would.

Guess I could be run over a bus any day.

God is good
You are a treasure Roderick
 
Roderick, thank you.
You may regret your post, but it has made a profound difference to my day! Even way down here in NZ. You articulated so beautifully what I cannot. I have a provisional diagnosis of PLS or ?umn dominant ALS. I was lucky that after a slow but steady decline over 3 years that I found a doctor that just gave me a clue. It seems silly but it helped so much. Gave me the ability to try and get on with living and not spend fruitless hours trying to find impossible answers.
My husband is a neurologist and he has been as frustrated as me. I do not fit into a "box". Neurologists love boxes and few will step away from them and just look at the obvious. My husband has always been a Doctor that says what he thinks even before the patient has neatly fitted into the box. Yes he is sometimes wrong , but not often. If he is wrong then the patient usually is fine with it. They have lived travelled and got on with their bucket list. To find that their condition strangely improved is a blessing. More often than not he is correct and the patient has got on and done all they can while they are still able. It takes great courage as a Doctor to give a patient a label when all the boxes are not ticked. If only they realised how helpful it is to the person sitting in front of them.
My husband wants to take 6 months off work to hang out with me while I am able. I progress very very slowly and have declined his offer at present. (who really wants there hubby at home for 6 months Urghh!
Wish you had my hubby as your doctor.

Thank you for making my day
Aly
 
I’ve once again vented my anxiety and to some extent dealt with the grief that presses behind my eyes. Unknowing is my lot for now; and it is my gift, a gift from above. Indeed, “The secret things belong to the Lord our God” (Deuteronomy 29:29). Who of us, after all, knows much about our future?

Perhaps the silence of unknowing is an invitation to true spiritual life. Perhaps faith is the essence of hope.

The need to know is so finite, so human, and of course that is what we are. What I do not know provokes my dependence on the Alknowing.

Roderick,
Thank you for your candor. We all face fear when uncertainty hits us square in the eyes. In reading your post, I thought of this reading from Oswald Chamber’s devotional. I would like to share it with you.

Judy

THE GRACIOUSNESS OF UNCERTAINTY

"It doth not yet appear what we shall be." 1 John 3:2

Naturally, we are inclined to be so mathematical and calculating that we look upon uncertainty as a bad thing. We imagine that we have to reach some end, but that is not the nature of spiritual life. The nature of spiritual life is that we are certain in our uncertainty, consequently we do not make our nests anywhere. Common sense says - "Well, supposing I were in that condition . . ." We cannot suppose ourselves in any condition we have never been in. Certainty is the mark of the common-sense life: gracious uncertainty is the mark of the spiritual life. To be certain of God means that we are uncertain in all our ways, we do not know what a day may bring forth. This is generally said with a sigh of sadness, it should be rather an expression of breathless expectation. We are uncertain of the next step, but we are certain of God. Immediately we abandon to God, and do the duty that lies nearest, He packs our life with surprises all the time. When we become advocates of a creed, something dies; we do not believe God, we only believe our belief about Him. Jesus said, "Except ye become as little children." Spiritual life is the life of a child. We are not uncertain of God, but uncertain of what He is going to do next. If we are only certain in our beliefs, we get dignified and severe and have the ban of finality about our views; but when we are rightly related to God, life is full of spontaneous, joyful uncertainty and expectancy.
"Believe also in Me," said Jesus, not - "Believe certain things about Me." Leave the whole thing to Him, it is gloriously uncertain how He will come in, but He will come. Remain loyal to Him.
 
Wow thanks again Judith. That makes me feel very humble indeed. I just need to let go, and give it all to GOD. I know this thread is for Roderick, but I need to thank you both for provoking me to think beyond self and keep my eyes focused where they should be.
Aly
 
Aly, we will all make it as long as we keep looking up:-D

Judy
 
I finally got my diagnosis after a year of trying to get someones attention.
I am still in shock mode.
But'''''''';;;;;;;;;.............. My answer to my heart was to enjoy each day as a blessing as anyone else would.

Guess I could be run over a bus any day.

God is good
You are a treasure Roderick



Hi!
I see you are new to these pages, as I was untill just a few months back. I am sorry that you are in the place of inevitable shock after a diagnosis - tough times indeed. Each day is truly a gift; I believe that too. Hope you're travelling OK!
 
Thanks Judy,

Lovely thoughts from that fine author.

Aly; that's so true about keeping our eyes where they belong. Most times when I find my mood to be wanting I discover a little while later that my gaze was down instead of up, in instead of out.
 
This is such a wonderful thread. I love reading each response, and the encouragement which just grows and grows again, to look up and to trust God with the unknown... His footsteps are above the clouds, but we see only the cloud. I trust Judy will tell me which Psalm that's from if I don't find it soon. Grin. Roderick, it seems that your "disappointment" turned into a great blessing. God is working all the time.
 
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