"If you hear a voice within you say 'you cannot paint,' by all means paint, and that voice will be silenced." - Vincent Van Gogh

Thursday, July 26, 2012

Hope for the Sick Soul...

"Years ago, a student with a chronic illness told me, “I am afraid that if I stop, if I slow down and rest I’ll never amount to anything.”
I smiled. “What if I told you that everything you are ever going to 'amount to,' you are right now?”
I knew what she feared. I have done it a thousand times- confused work with accomplishment, frenetic activity with movement, growth and learning. We are afraid that we will not be enough. All of our deepest desires are our soul’s way of calling us back to simply being all of who we are."~ Oriah Mountain Dreamer from The Invitation

What seems to be a lifetime ago and yet only yesterday, I was "taken down" in my youth. While I was living a vibrant life, traveling around the US and Canada, speaking to large groups of people and dating my husband, I caught mononucleosis. One week in bed, turned into two and soon turned into five years of imposed rest! From the age of 27 to the age of 32 I barely left my house or my sofa. Being an extravert this was a prison that I wouldn't wish on anyone. During this time I had to surrender a great job as Director of Admissions to a college, and lost most of my friends. I can't really even recount this pain without going back there emotionally 24 years later.

Despite all I just said, I managed to retain my spirits. I spent my days going to alternative doctors, getting IV's, taking vitamins, learning new healthy ways to eat, etc. I put in a good deal of time reading and trying to figure out what God might be trying to teach me in all of this. I joined prayer groups with strong women of faith who prayed for me endless hours and I learned to pray for others. I waited... I believed.... I hoped. I felt that all that I was going through would make me a better person and be used for God's glory. I cherished deep conversations with other patients so that I could bless them. I prayed for people to be set free from their physical prisons and saw it happen often. With all evidence to the contrary, I still believed everything would work out for my good. Quite often when I went up for prayer in church, people would be filled with so much "joy" when they were done praying they would laugh! At times I felt hopeful that this meant that the illness would be used to his glory and that I would be healed but at other times I felt angry and that my pain was disregarded by the God who had the power to make it go away. 

To this day, 23 years later I still live with the effects of this illness! If I rise too early in the morning, I pay with the worst kind of pain (fortunately Starbucks gets me through my commitments.) I live with debilitating headaches, muscle pains and abdominal issues. Somedays my energy is extremely low and my glands swell. And yes, I struggle because I really don't know yet what is wrong with me (besides the catch all CFS/Fibromyalgia diagnosis). After years of doctors, specialists and $60,000 worth of uncovered medical bills I am no closer to an answer than I was then. I worry every day that I get a new symptom that this is the one that's going to take me out! My family thinks I'm a hypochondriac, but to live with unexplained pain your whole life brings that on. No one wants to be a puzzle to the doctors for 24 years!

Now God didn't look down from Heaven and say, "This poor girl has as much as she can take. I will make her life more bearable in other ways." No.... For all of our years we have struggled financially finally ending in bankruptcy as we tried to pay increasing medical bills. My husband was in and out of ministry, serving some impossible situations that caused unemployment multiple times as I lie there in bed helplessly looking on. I was unable to work due to my physical condition but lost my unemployment benefits regardless when the government cut back on aid in 2001. Our income went down $10,000 a year for a few years there and it didn't start very high up to begin with! After all this we ended up in a really "shady" ministry that I would say was more like a "cult" than anything else with it's authoritarian methods of discipline. They, with their false prophecies did a job on our family and our ability to trust. Had it not been for three other very bad church experiences I could have let it roll off my back, but because pain at the hands of "godly" people happened with such frequency, it only made it more damaging to us and our children. During all this we struggled with our youngest child and found out that she had high functioning autism and some other serious issues that will affect her and thus me, for the rest of her life. The pain and heartache of this alone is more than I can bear sometimes. On top of this, we've relocated 11 times in the past 23 years trying to better our living conditions with hopes for pay increases and new starts.

I probably don't have to spell out that this life had severe effects on my marriage. I'll leave that one alone as we continue to try to make sense of our past 24 years together. Added to this were the regular struggles and blows of life mixed in with a few major heartbreaks and betrayals and it's a wonder I'm still alive writing to you today!

Now, you can probably hear the responses from well meaning people through out my years trying to help me "make sense" of things. I balk when someone suggests that there is something wrong with my underlying view of life or character because I suffer. I rise in anger when someone dares say that I could learn more patience when they haven't even begun to understand the depth of this situation. For some reason, having needs in your life makes others who do not experience what you do, feel that they have a right to offer solutions or judge you for your obvious mismanagement of your life else you wouldn't have these problems. Some of us still think that life is actually IN our control... that if we do things right, life will go well. Oh those blessed people with their simplistic notions. And PLEASE don't give me a lecture on gratitude on those few days when I melt under the pressure of life!

Yes, God has given me a great deal of grace. I am gifted with strong creative talents with which to work out my frustrations. I have an insatiable desire to learn and grow and then pass on my insights from the school of hard knocks to others. Despite poverty, I have never begged for bread (thanks to the food bank). I am resourceful and have been given deep inner strength to keep me going. A few dear people, have stuck by me for the long haul wanting to help me, praying for us fervently every day and sometimes putting action behind their prayers. One dear friend in particular stands out to me... an angel of the truest form. These are all evidences that God is good, but it doesn't mean that I don't wish I could trade it all in for a villa in Greece.

And yet, were you to meet me on the street you would never know any of my story. To see my bright smile radiating on my face, you would not know the pain that I endure. You would not know my doubts and fears. You would only know my love and interest in you as a person. You would know that I care about you and your hopes and dreams. I will NOT let illness define me. I will NOT let my limitations bar me from being all I can be in my one, glorious life. I will NOT give in. I refuse to complain, moan, mope or live in sorrow. My life will NOT be one marked by pain but by the beauty of all that is good in the world. Someday I will be free from my limitations and I want to hear that I made the most of all that was given me in this life... that I did a good job!

This is the mark of a warrior. I'm not tooting my own horn here - what choice do I have? Truthfully, I would rather not be in this situation despite it's spiritual rewards! This is the FIRST time I have shared my story so fully. When I write blog posts, it's not because I think I have the answers, it's because I live the questions. I know that life is hard! I know that each of us have pains that we would like to go away! Every time I hear of a vibrant person being struck down by tragedy or illness, my heart dies a million deaths for them. I am so saddened by the shooting in Aurora; the unnecessary deaths of all those young people. This world can be so hard to live in!

So I hang on to the beauty of a sunset; the scent of the ocean for dear life! I hold true to those I love for all that is good and right. I focus on the pleasant, every moment of every day! I do not get caught up in the poor behavior of others or offended by their words, because in the end, it just doesn't matter! I don't get tangled in political rants, I can't even manage my family, let alone the country! I don't have the answers! I try to be love and beauty for all those around me because we all need that! I try to live every moment to it's fullest because none of us knows when our final breath will be taken. People, it's all about radiating the beauty that is inside us to the outside world to give them a smile.... to give them a God wink. We need to touch each other deeply, in the soul realm!

This is why I write with such passion. I want you all to know that life matters! I want you all to hear that even in the midst of the deepest dark night of the soul, you can be assured that you are in the strong and capable hands of your Master, the creator of the universe who loves you more than you will ever know. In this truth, you can just REST... because you ARE. You do not need to strive and fill your life with meaningless activity. Quiet your soul knowing that you are loved just the way you are and pass that love on to others.

This morning this passage from Lamentations 3 was called to mind.... Read it out loud, it helps.

[a]I am the woman who has seen affliction 
    by the rod of the Lord’s wrath. 
He has driven me away and made me walk
    in darkness rather than light;
indeed, he has turned his hand against me 
    again and again, all day long.
He has made my skin and my flesh grow old 
    and has broken my bones. 
He has besieged me and surrounded me
    with bitterness and hardship. 
He has made me dwell in darkness
    like those long dead.
He has walled me in so I cannot escape; 
    he has weighed me down with chains. 
Even when I call out or cry for help, 
    he shuts out my prayer. 
He has barred my way with blocks of stone;
    he has made my paths crooked.
10 Like a bear lying in wait,
    like a lion in hiding, 
11 he dragged me from the path and mangled me
    and left me without help.
12 He drew his bow 
    and made me the target for his arrows.
13 He pierced my heart
    with arrows from his quiver. 
14 I became the laughingstock of all my people; 
    they mock me in song all day long.
15 He has filled me with bitter herbs
    and given me gall to drink.
16 He has broken my teeth with gravel; 
    he has trampled me in the dust. 
17 I have been deprived of peace;
    I have forgotten what prosperity is.
18 So I say, “My splendor is gone
    and all that I had hoped from the Lord.”
19 I remember my affliction and my wandering,
    the bitterness and the gall. 
20 I well remember them,
    and my soul is downcast within me. 
21 Yet this I call to mind
    and therefore I have hope:
22 Because of the Lord’s great love we are not consumed, 
    for his compassions never fail. 
23 They are new every morning;
    great is your faithfulness. 
24 I say to myself, “The Lord is my portion; 
    therefore I will wait for him.”
25 The Lord is good to those whose hope is in him,
    to the one who seeks him; 
26 it is good to wait quietly 
    for the salvation of the Lord
27 It is good for a man to bear the yoke
    while he is young.
28 Let him sit alone in silence, 
    for the Lord has laid it on him.
29 Let him bury his face in the dust 
    there may yet be hope. 
30 Let him offer his cheek to one who would strike him, 
    and let him be filled with disgrace.
31 For no one is cast off
    by the Lord forever. 
32 Though he brings grief, he will show compassion,
    so great is his unfailing love. 
33 For he does not willingly bring affliction
    or grief to anyone.

So there you go... I will keep my hope. Life's problems weigh us down and they heap themselves upon us causing us to do deeper and deeper into despair. But we can't live there.... we must be prisoners of hope. We must forge our pain into swords to free others from their prisons. We can be the sunshine for others sitting in darkness. We can be light in the caves. 

I've got no answers.... only hope. Hope that one day it will all be different. Hope that one day all pain will be eradicated and joy will be the order of the day! One day there will be no more sorrow, tears, illness and all injustice will be stomped out. It's coming... but for now, we can do our part to brighten our world with a smile, a loving gesture.... It's good for the soul!


  1. Anne,
    I came across your post through a photographer friend. So much of what you have written, I have either thought, or could say now. I've struggled with the mystery diagnosis for over 7 years now. We believe it is MS, but can't confirm it (or treat it). Just wanted to say, you are not alone. You know this...even when we are alone, we truly are not, because God is with us. But sometimes it helps to know another human being truly understands (as much as any individual can understand what we go through). Keep up the good faith. You are in my thoughts and prayers.

  2. Thank you so much for your comments. I'm so sorry about your illness! I will keep you in my prayers as well. There are so many people that struggle. It helps to know we are in good company! Blessings to you and thanks for reading my blog!