I have been quiet here. I continue to write elsewhere like I breathe. The fire of suffering the past months has been wild. Just when I think it might be under control there is a flick of a cigarette. The wind blows the sparks over my dry bones, and once again I am choking in the smoke of loss. Deep pain, my own and that of those I love, fans the flames. My pride keeps me from putting my whole heart here. I fear if you truly saw my charred fleshy wounds you would want to turn away. I’m finaly beginning the hard work of sifting through ashes. I’ve been through too many fires to doubt there is beauty here somewhere. I’ll find it. I will. Until then my God and my friends sit in my lament and let me cry.
I am continually amazed at the reflections of my life through blogging. The following post is from a year ago to the day, August 10th, 2014.
Today was the last Saturday of our summer. From the second I woke up I held on to moments like golden strands of fine thread needing to be tied off carefully so the tapestry won’t unravel. I am not sure if I ever fully believed God might give me a day like this . . . or a week . . . or a month . . . or three months, but I fought like He might, and He did.
I have been in recovery. I am a person who lost part of my brain and my soul. I have been relearning the simple things in life most people take for granted. I am in many ways like a child. If you spend time with me I will probably exclaim out loud about a hundred things you think are ordinary. I may have seen them or heard them, smelled them, tasted them or felt them before, but it has been years since anything did not pass through the brutal filter of chronic pain.
Dan and my girls are getting to know me again.
Delaney told me today I was funny. She only ever saw this mom in old home movies. I was the crazy one drinking a bloody mary for breakfast while dancing around the living room doing Elaine Benes impressions and belly laughing. I still believed life was good. She will tell me “Thank you” in an “I can’t believe you were able to do this for me way” for normal mom stuff like making her a peanut butter and jelly sandwich. It takes me off guard until I remember she has been making her own lunch and Danica’s lunch for too long. She turned around from the yard and said to me tonight, “I’m so proud of you mom. You’ve been through so much and still you provide.” I asked her, “What do I provide?” Her answer, “Kindness and love.” A tear falls, and I think . . . maybe she is going to be okay after all. Maybe I haven’t hurt her too much. Maybe she sees the big picture at almost twelve years old. Only the gift of the summer we’ve had could give this kind of clarity.
I see flashes of pure joy on my husband’s face when his old Monki shows up. I’ll do something simple for him like a wife might do for her husband. Maybe it’s just asking him if he needs a drink or a bowl of cereal, but I know symbolically it takes the tiniest bit of the incredible load he has carried for so long off him. It starts to tip the balance back to give and take instead of him always giving and me always taking,
For Danica it is different because our relationship was built on pain, mine or hers, and she doesn’t remember me any other way. She is thrilled to have a mommy planning playdates or going shopping with her, but she is not tenuous like Dan and Laney are. For Danica the fact her mom is out of bed is just her life today, not something she’s terrified we might lose. Still, her bedtime prayers have changed. Every night for as long as I can remember she would end with her little plea to a big God, “Please make mommy better.” I would cringe wondering how messed up a child’s faith could get if the answer never came. Slowly this summer she has moved on to pray about other things and for other people, letting me slip off the list. I love knowing her tender heart is getting a break from worrying about her mama.
During my plasmapheresis and IVIG treatments I made a list of things I really wanted to do this summer if I was well. Some of them were simple like taking the girls putt putting yesterday. Others were bigger like attending an outdoor concert, a major league baseball game and a trip to the beach, all activities that brought me true enjoyment before I became so ill. We never got to the bigger things because of money, but in some ways I think it was for the best because we learned how to live and love in this sacred space of home and everyday life again.
I also set out to lose steroid weight and become thinner over these summer months. This hasn’t happened, because I’m hungry for the first time in years, and I want to eat. I’ve realized the part of my brain that forgot how to enjoy anything is loving food again and drink and the community it invites too. I’m letting myself remember these right now. I’m showing myself grace. This body has been through hell. It’s okay to look in the mirror and respect the wonder of flesh and blood surviving all I have no matter what the scale says.
This evening our family was hanging out on our deck. We had just finished my “famous” corn dip. The sun was setting behind the trees. Over the Rhine was crooning “Favorite Time of Night” from our playlist. The girls and Twixie were playing badminton and soccer. I got that thick feeling in my throat as the cicadas sang. I felt my anxiety about all we are facing financially begin to sprout in my mind and try to rob me of the perfect night. I felt my fear about the evil in the world and the sadness for the suffering and brokenhearted. Why are we allowed to be here like this when so much of humanity is wailing tonight? Why does my heart ache over my own medical debt when people are starving and dying? How do I balance the goodness of God with all these things?
I have always been too serious. Life has always been a struggle between the highs and lows. I feel everything too deeply. I think about you and you and you, and I pray for you too. I wonder how you are today. I’ll write you a note to let you know. I’ll buy you a gift when I see something that makes me think of you even when I can’t afford it. If I just met you I want to cut through anything casual and hear your story. I want to know what you read and the music you listen to. I want to know what makes you laugh and what makes you cry. I know for sure God is real, and I’ll give the reason for the Hope in me. I know for sure life is hard and love is real, and we have to keep believing no matter what. All this is exhausting. Most don’t have the stomach for it and need to numb themselves or dumb it down as a coping mechanism. I get this. I do. I’ve tried to change. I’ve tried to medicate away the very thing I am learning is most likely a gift not a curse.
In this age of trying to capture our feeling in a facebook post or a tweet, I try to imagine telling some kind of narrative in just a few words. It’s not natural for me. Most of the time I just can’t do it, and I run to write for real in places no one reads. Instagram is a little easier. After all a picture is worth a thousand words, right? Sometimes I run to grab my camera and capture the way the light is falling or the girls are playing. I’m grasping to simplify what has always been so complicated for as long as I can remember. I don’t often succeed. On the rare occasion it happens it is usually just a few words strung together, hanging out there like a mantra for my soul. My OCD brain holds onto them, and I chant in my head like a child rocking to sooth away the day and finally sleep.
Today it came in a pillow that showed up in the mail.
SWEET TEA AND JESUS.
This I know.
I feel my symptoms returning slowly. I have quietly let the people who need to know begin to monitor how far we let this go before I get help again. I’m terrified, because I was released from a kind of prison, and I need to be free like this no matter what. No matter what the cost. No matter what the toll is on the people around me. No matter how many more scars. I can’t go back where I was. I knew another round might be needed. I remember asking, “How long will this last?” The answer was, “We don’t know. Maybe three months, maybe six . . .” I scribbled this in my little notebook I kept in the hospital those worst twelve days.
SWEET TEA AND JESUS. SWEET TEA AND JESUS. SWEET TEA AND JESUS.
This I know.
. . . It’s Sunday morning now. No church for us. Dan and the girls have taken a month off, and I am not sure when I can go back. I’m not sure why, but it has been good. We slept in until almost nine. All of us. We had coffee and breakfast and played Scrabble. I am so tired from my twitching body and racing mind. Symptoms. Our family will work on thank yous today. Gratitude for a family who gave us Christmas in July. It was amazing. Gratitude for a used laptop that showed up on our back deck when mine died. Someone who knows my world is still small and the keyboard and screen are the place I sort things out and reach out and am touched by you too. Gratitude for a friend who tells me this. “I don’t believe God brought you this far and provided all you need to walk away from the help you might still need to fight for your life.” She’s right. I ask, “Do we have everything we need today?” Once step in front of the other. Be faithful. Do the next thing. Love harder. Celebrate the gifts. Give the rest to Him.
SWEET TEA AND JESUS.
This I know.