***Disclaimer*** Lots of sad feelings but it ends happy
This is a very strange thing to see. I've had NDPH for five years. There is this question spoonies ask each other. It goes something like this "If you could go back in time to when your pain had just started, what advice would you give yourself?" Examples are : "I would tell myself not to go to Dr. XYZ or try this medicine." "I would tell myself that my condition was ___ and that if I started to accept that now, my journey will be so much smoother." "Avoid the _____ event that started everything."
My answer was this "what a question. Mine were inevitable. I don't know that past me benefits from knowing that 4 yrs from now it still won't be gone."
I think a lot about past Megan when our anniversary looms. I've been preparing for this post for a couple months. The five year mark loomed before me and I wasn't sure what to do with it. So I started to compile things. I journal a lot, specifically prayer journals. It's how my brain works. I have to get it out, all out. When it's out, it's almost like it wasn't there. Almost. So I went back through my journals and found my thoughts for each past anniversary and made pictures depicting each!
P.S. My headaches started April 5, 2011
5 months entry:
"Nothing but alive in your hands. Today was a bad day. My head hurts + neck + shoulders and it was an easy work day. I am so broken and in the depths. Is there a purpose? Are you trying to cultivate something in me? Trying to teach me something? I love you and I need you. Thank you for your mercies. Thank you that my head hurts less. Help me to stop crying and not get into a self-pity cycle. I love you. You are all I need. Not relief. Not to be retired. You. You are enough."
I don't know nothing about pain. I was just born yesterday
Oh bless five-months me. Little la-la-la lamb had no idea what's coming. This was the mental picture I got instantly. She thinks she is sad. She thinks she is in pain but it gets worse.
1st year entry:
Psalm 13
O Lord, how long will you forget me? Forever?
How long will you look the other way?
2 How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?
How long will you look the other way?
2 How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?
3 Turn and answer me, O Lord my God!
Restore the sparkle to my eyes, or I will die.
4 Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.
Restore the sparkle to my eyes, or I will die.
4 Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.
5 But I trust in your unfailing love.
I will rejoice because you have rescued me.
6 I will sing to the Lord
because he is good to me.
I will rejoice because you have rescued me.
6 I will sing to the Lord
because he is good to me.
Where did these come from?
She is so confused. I remember thinking "Surely it will end any moment. It will end so soon like having a cold or a pulled muscle. Any day now." Hitting the year mark was so bizarre and foreign that I didn't even get it for a while.
2nd year entry:
Two years. I feel that I dare not even call to You. I’ve pretty much ignored You because You chose not to heal me. I’m not angry, just sad. I remember when I hit one year. How much longer does this go one? I wish, I pray to have my life back. Where is my cure? Please let me find it. But until then, help me to be kind. Let my suffering make me kind. Can we do this together? I know I’ve been trying to do it on my own. I’m so defeated. God help me.
Prostrate
Yup.
3rd year entry:
3 years... I am horrified. That thought roils my stomach. It’s like swallowing a balloon of ice cold air. I just live in such denial of the time passing. I’ve been saying it’s been 2 1/2 years way past the time. Up until a couple months ago. How many more? Will I read this next April and cry at my naivety as I have done at my other anniversary entries. The despair is so real I feel it like a cloak or a dementor. But even so there was March. Last month was good. What was that? Hope. We all know what Ben Folds says about that... It’s a poisoned fount. But I’m dying of thirst and I can’t stop myself!! I hate myself for smiling about it!! But the next second I start to cry so I’m not lost. I want to be a mother. I’m ready. Please let’s be done okay?
Matthew 7:7-8
"Keep on asking and you will be given what you ask for. Keep on looking and you will find. Keep on knocking and the door will be opened. For everyone who asks, receives. Everyone who seeks, find. And the door is opened to everyone who knocks.
Cloak of despair
I remember where I was when I was writing this. I was at the airport on my way to FLL for Cruising with a Mission. I was feeling really bad and there were no good restaurants. I had decided to do a check of the past couple months pain logs and was horrified and also surprised. There were a lot of really bad month but March had been surprisingly good. Good enough to give me some hope. But not enough to pull me out of my pit.
4th year entry:
It passed me by. I never thought April 5th would pass me unaware. The sadness is so minimal. It’s not the all consuming despair it has been. I’m so grateful. I’m so glad to be freed from that pain. I really think finishing Elinor, saving her has saved me. Because if I couldn’t save an imaginary character what chance was there for me? In regards to my entry last year... I’m so glad that I don’t curse her as a fool for hope. It’s not better but it is. What will next year be like? Will I be better? Will my acceptance have transformed to pure joy? Will I have a baby? For the first time in forever the future feels like only Hope. Only good things. The pain is unaltered but I am altered.
Turning pain into butterflies
- I can hardly believe I wrote that but I remember writing every word and I remember exactly where I was. I was at Duke hospital for a dental appointment and I was on my phone. Suddenly I realized the date. It was April 11th and April 5th had passed me by. It was like a punch in the chest it was so surprising. I had just recently found peace and it had come into my life like a grenade blowing everything else away. My drawing is of me making origami butterflies out of the old calendar pages. Making something beautiful out of the pain.
5th year entry:
"Yesterday was my five year headache anniversary. It wasn't the saddest but maybe that was because I had been dreading it so long. Let this be the last one. Heal me!!! now. today. I trust you. It's hard to remember before. Last year's anniversary was so pure and hopeful. I almost don't recognize myself in it. I want to be what she hoped I'd be. Not sure I am. But it spurs me on. Next April 5th I will be celebrating healing. Lead me out of this wilderness and into the promised land. Let me see your miracles and wonders."
Joel 2:25
"I will repay you for the years the locust have eaten."
2 Corinthians 12:9
"My grace is sufficient for you. For my strength is made perfect in your weakness."
Waiting at the intersection of faith and hope like Anne Shirley.
"I know God is coming to take me to the promised land but if it's not today I think I'll just sleep in that wild cherry tree and wait again tomorrow."
See it ended happy. Sorry if that was too much honesty but it is what it is.
Happy 5 year headaches.
Too much honesty = it burns when I pee lately. This is magnificent. Never ever ever ever apologize for saying things. The "...I am altered" line has me paralyzed in awe. I can relate to all of this. Thank you! Love you.
ReplyDeleteWoah.
ReplyDeleteI'm speechless (I've tried to type something like 10 times and nothing is right.)
5 years that I've had Mae. Baby Mae seems like an eternity ago.
You are so honest and so good. I'm sorry about so much. I don't understand the Lord. It shakes my world to think too much about his unanswered prayers to you. Makes me kinda selfish I suppose
Love you. Here's to next year
@ Bri haha "it burns when i pee" thanks for reading dear friend.
ReplyDelete@ Britt you don't have to be sorry about anything. My journey has been what it was and I'm really okay with that. They aren't unanswered prayers He just said "wait".
💕💕💕
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