The Shade
Thursday, August 22, 2013 at 6:15AM I have had so many good days since my surgeries took much of my pain away. Today there is a change where fear has crept in. To say anything else would be disingenuous.
Blogging is therapy. But it is so because only if it is honest. You have been there through my strongest and times. Today my roots are bending. My limbs bouncing in a rain.
My diagnosis is almost certain. But there is a window cracked just enough for a guest to open with its glove. Lately, symptoms with initials have left stains on my cheeks. My face buried in Don's chest. Because of what they might mean.
Disease can bring fellows to bed. Leaving you wondering if it is alone.
MS has pretty much been ruled out. ALS has not been completely dismissed (also known as Lou Gherig's Disease). I have an appointment with a neurologist on Monday. Yesterday, my physical therapist came to work on my limbs and I put on quite a show for my dogs. Every effort crunched my face into a distorted mess. But I made it through the exercises with the help of his hands around my legs. But I noticed something had changed. My right leg that I thought had paused its decline, did not. And my good arm's hand felt weaker than before. My resting fingers curled into my palm instead of resting with air beneath their tips.
CRPS sometimes operates with illness of another kind. Others also brought on by trauma like mine. A hit on the head can echo for years to come. A sound deafening to the spirit on days like this. When you must listen for the whisper of an angel's voice telling you you're wrong. That all is as you knew. And the treatment course is enough.
But what if it is not? What if a passenger rides within, unannounced and silently lurking until its time has come to be revealed?
Others would not like for me to say these words, because it may be seen as thinking of the worst. But no matter what it is - if this is just the CRPS spreading - my life can never be the worst. It is magnificent and pure. So whatever form it takes, is merely a definition of its state. Not a sentence to be ignored.
Thinking of what life could be, is important to me. It prepares me for possibilities that could very well be true. But it doesn't mean I'm not scared. Or the loss of life as I knew it isn't missed. So this reflection has to be.
I wonder too about my feelings if I do have ALS. How others would react to the enormity of what could be. Yet I know what I would think. I would not want to fill my days with pity. Or anger. Or regret. I would not want friends to feel sorry for me, or treat me as though life was bending in the wind. I would hope only that they would continue to water my roots and pause at branches still budding with leaves. To be grateful for our shade. And nourish our moments with tears of joy, that are reminded life is more precious than we know.
I wonder about my children and Don. But I will stop there, as those thoughts will bury me.
This is what I think. Today. A day when limbs are weak. Until more answers are found. Under a tree. In a shade. Where for now my heart will wait.
Reader Comments (6)
So much said in such a small space. It is so very difficult to be hopeful and brave in the face of worrisome signs but courage is not the absence of fear--it's being honestly, terribly afraid and still refusing to give in to hopelessness. Thank you for channeling the truth. You are perfect and pure.
Thank you Mim. I wondered whether to post these thoughts. But they cut me to my core. To not express them would be dishonest. And in doing so it's lifted me to move forward today. And that is all I hope for, to continue moving forward. To never stand still. Except to hold onto each moment that teaches me why we're here. X
you see things clearly and therefore are blessed, but the price is enormous. i wonder is this the price we must pay? couldn't we get this for less-an on sale version of what is true?the first of many conditions that will probably shorten my life, left me not in fear, but in rage. had i not tried to be a good person, worked hard at it? then the fear came. and then for me the oddest part was that i became grateful- not for the loss of the life i had imagined, but for the new life i could create. i still get angry and tired- i wish pain could be replaced by a fortune cookie. do this small thing and everything will be alright. that won't happen but i believe in your friends, family and most importantly the quality of life you built before. these things will carry you through and if you find an opportunity to rest in the shade, take it, you deserve it. i'll leave you with a quote , not my own 'you must pay an ultimate cost for things of perfect value'. my heart is with yours under that tree. love, diane
Mic,
I feel like I have your wings and can't reach you to put them back on. I hang in the dark with you, with fear of the unknown.
I don't want to see you, I NEED to see you. Please know that and allow me a visit to hold your hand and massage your sweet face.
You are my sister and I miss your smile.
Your words which I just read to Vicki, put us in tears, we are with you in spirit and love you so, she asked me to tell you that.
You are not alone, we are all here, so many lives of love surround you.
I will call you and I only pray you can talk to me and tell me I can see you.
However you feel it, I am there.
Jo
Sweetheart, my spirit is so protected. My wings attached and aching to soar because I have not forgotten how - in my mind. This weekend will be one of reflection for us. Dr today is concerned. So we are prepared for whatever the answers may be. In the meantime life is only more blessed than ever before. And that is God's gift to me. I love you my friend!
dearest mic, i have read and reread your posts.i am not good with my computer and i am a poet and writer whose words have failed her. please forgive my struggle to say what is in my heart. please never worry about what you post- these are your feelings and your words and you have a right to express them anyway you wish. i am amazed how you find love and gratitude in every situation- i think part of it must be that your family and friends are so wonderful. i had the faith beat out of me when i was a child and it has been a long road back. so when it is so important to me to say what i want to say i must borrow some one else's words. this is a variation of a prayer called, 'st. patrick's rune.' 'in this fateful hour, i call on heaven with all it's power. and the sun with all it's brightness and the snow with all it's whiteness. and the fire with the strength it hath and the lightning with it's rapid wrath and the winds with their swiftness along it's path. and the sea with it's deepness and the rocks with their steepness. all these i place with God's almighty help and grace between you and the power of darkness" love, diane