"But if you have been sick or injured, then you know, there is always something surprising and mysterious and even scandalous about it. You have been betrayed by your body, when you had gone around all this time thinking you and your body were one thing, inseparable, a winning team. And although the doctor’s approach you with their sterile, shining instruments and unfailing clinical cool, still you panic, and inside you feel hurt.
Because you are hurt.
And although doctors now have treatments for most maladies, what comes after that — the healing — is something one must do alone." Amy Musselman
Tonight I am in bed. Dan is in the living room watching TV. Danica is in her room playing and Delaney is in her room doing art. It's Friday night. I feel alone. I hear my parents in their room above me. The dog barks when she hears someone get ice from the refrigerator door upstairs. A constant creaking and moving above me irritates me and makes my heart race. I have been overstimulated today. From the moment I woke up I felt very fuzzy like I am on the outside looking in a window pane full of condensation. I can't pinpoint it, but I'm not right even by my low standards.
I had a dear friend bring me lunch and visit. I have had very few visitors since this last surgery. It meant so much to just be with someone and not really talk about my health but about her life and work and other things. She shared today how hard it is to know when to reach out to someone healing. I know this. I know you don't want to call because I might be sleeping. I know you are thinking of me and praying for me. I know it's weird to come around to the back door of a house that's not really mine. I know you probably don't want to meet the entire extended menagerie of people who live here if you come to the front door. It is a crazy busy time of year for most people too. I once again watch the lives of others moving on. I lift one weighty foot in front of the other to move from room to room. The longer I am shut in the more I isolate myself. I pull back from people. Even talking to my childhood friend on the phone this week I just couldn't open my heart. I want to say the right things to make this healing stick. Part of this I still tell myself is acting like I'm okay. "Mind over matter" is really a stupid saying. Sometimes it really is what it is and no pie in the sky attitude changes the reality of the situation.
I did something really brave on Tuesday night. I planned a surprise "date" with my friend, Sharon. She is very artistic, and I am not, but we are both creative in our own ways and enjoy sharing this. I bought tickets for us to go to a ladies night out at the Canton Museum of Art and take a watercolor class. I prayed hard about the environment and being able to make it through an evening event. The room was well ventilated with high ceilings and there was no one near us with perfume. The paints didn't stink, and I really had such a nice time. Sharon's painting was gorgeous and inspired me. As we drove back to her car where we met we talked about how unlikely our friendship really is. I met her four years ago at an Arabica. She is ten years younger than me. She was in a completely different stage of her life. She was wounded by many things. Although the sharp edges that cut us were different our hearts were very much the same. I began meeting with her when I could. It was always hard. I was working from home and had a young baby and little girl and stress that grew into big health, financial, head and heart problems. She was a touchstone in many ways that kept my perspective. I often looked at her and tried to remember what it was like to have the entire world at your fingertips and still feel hopeless some days. As the mentoring faded, and I watched her scars healing and her heart grow to embrace life again the differences between our personal circumstances couldn't keep us from sharing the things that mattered. She was the one who came and stayed nights with me at the lake house. She knows what alone feels like. She really gets how I have so few spoons to share with others, including her somedays, and she stays. She doesn't need to be pursued to know I love her. This is something most people don't get about sick people. We can't make plans. We will cancel and feel even more guilty. We may go through all the painstaking effort to go and then get there and need to leave. Our spouses and children are let down. You are let down. We retreat.
We are alone.
Tonight I had every hope of a fun family Friday night. I was feeling tired and strange but not really in pain. I ate turkey and cheese on flatbread for dinner. Yes, some gluten, but I had been so "good" all day. Something made me very sick. I felt my blood pressure drop. My face went white as a ghost. My tummy began to swell and cramp, and I knew this was a real attack. My family makes jokes sometimes. They don't know how to cope with this either. Dan doesn't know if I will pass out or need him to call 911 or if I need to be left alone. They are all laughing and planning the weekend and being boisterous, and I say firmly, "I can't be spoken to right now." This is funny to all of them. I feel alone. I run to the bathroom and get sick. I have several episodes before falling into bed. Happy weekend.
I jump on facebook to connect with someone . . . anyone. I see two events in downtown Canton I would so love to attend tomorrow including the launch of a friend's food tour business. I won't. I wouldn't dare try. The Monica who loves all things God has richly given us to enjoy must not. I can not. This is ironic.
I once in awhile check the stats for this blog. Hundreds of you are still reading. Most of you are hurting too in some way or another. My friend Kristin told me of two friends our age diagnosed with different brain cancers. My mom sends an email to pray about a dear family we know with their little girl in hospice. My brother-in-law will head from Maryland to California in the next weeks for surgery. So many of you have children with Chiari and related disorders or suffer from EDS and all that comes along with it. Daily pain and suffering and lives forever changed by the search for healing and the lonely days and nights in the alternate universe we share.
We are not alone. Even though there are many things we must do by ourselves. We must remember the community of prayer and kindness that has carried us. We must remember He has never forsaken us for one moment in this journey.
Mercy Me has a beautiful song titled The Hurt and The Healer. (Link to listen)
These lyrics are my heart tonight. I will find my way back to His arms. Jehovah Rapha, "The Lord that healeth thee." His arms are wide enough for us all. Won't you meet me there?
Why?
The question that is never far away
The healing doesn’t come from the explained
Jesus please don’t let this go in vain
You’re all I have
All that remains
So here I am
What’s left of me
Where glory meets my suffering
I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into Your arms open wide
When the hurt and the healer collide
Breathe
Sometimes I feel it’s all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through
So here I am
What’s left of me
Where glory meets my suffering
I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When the hurt and the healer collide
It’s the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood
When mercy takes its rightful place
And all these questions fade away
When out of the weakness we must bow
And hear You say “It’s over now”
I’m alive
Even though a part of me has died
You take my heart and breathe it back to life
I’ve fallen into your arms open wide
When The hurt and the healer collide
Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide
Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
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