Monday, January 16, 2012

Loneliness and healing

"Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation." Wendell Berry

Nine weeks ago this morning I headed to Doctor's Community Hospital in Lanham, MD for brain decompression and fusion. November 21st, 2011 will forever be a turning point in my life and the life of those who know and love me.  In many ways I will move forward celebrating that day as a "birthday" of sorts.  A chance to learn to live again is an amazing gift. 

This morning I was reading in Luke and drawn again to the passage in chapter eight about the woman who had a flow of blood for twelve years. She spent every penny she had on physicians and could not be healed. While in a throng of people she reached out and touched the hem of Jesus robe, and she immediately felt the flow of blood stop. Can you imagine? Jesus stopped and asked the crowd who had touched Him. This woman came forward and fell trembling before Jesus and the crowd and TOLD HER STORY. Jesus said this to her, "Daughter, be of good cheer, your faith has made you well. Go in peace." Several chapters later Luke tell us about a woman who had a "spirit of infirmity" eighteen years and was bent over and could in no way raise herself up. When Jesus saw her He said, "Woman, you are loosed from your infirmity." He laid His hands on her and immediately she was made straight, and she glorified God.  Here's the thing.  Healing is rarely this sudden or miraculous.  This makes me wonder what piece I am missing to finally "go in peace." 

My story is a combination of these two women. If you trace my health history over the past two decades or so I carried the two infirmities mentioned above continually. I was bleeding heavily all the time. I was in the emergency room too many times to count. I missed out on many social functions and just normal life because I simply could not control the flow of blood and all the pain and weakness that came with it. When I was sixteen I went on a trip with my boyfriend's family to Leesburg, Virginia for a party at his aunt and uncle's home. I remember borrowing my sister's new jeans to wear. I was sitting on an off-white setee' when I felt it surge. I jumped up, but it was already soaked through my pants. That night I slept in a beautiful guest room with pristine sheets. I woke in the morning with blood stains on them. I was so embarassed and ashamed. I missed classes at college and days at work.  There was a seven to ten day stretch every single month I could not be part of life.  The first Christmas Dan and I spent together we had to miss an important family party, because I could not stand up from the pain or control my flow.  Dan tells the stories too. Even our flight back from Aruba on our honeymoon ended with landing in Atlanta and being rushed from the tarmac to the hospital because of a cyst that burst from the pressure of flying. Blood was everywhere. So many Sundays I would miss church because I could not sit through a service without blood leaking. The last time Dan found me on our bathroom floor blacked out in a pool of blood was the final straw for us both.  My hysterectomy in August, 2010 ended the bleeding but not the blinding pain from the endometriosis left on my bowels. Finally, a year ago, a special surgeon at Cleveland Clinic went in and hand picked the insidious disease off my remaining organs. It was not quite as instantaneous as touching Christ's robe, but it was a huge step towards healing in this area of my body. I remain on medication to keep the endometriosis from growing back. I will never take a day of this healing for granted.  It controlled every aspect of my life since I was a teenager and for awhile at least God has removed this particular thorn. 

I had never really noticed the woman's story told later in Luke until this morning. The passage is focused on Christ's decision to heal on the Sabbath, and I always read it with that emphasis. I love how the very words used here describe perfectly my Chiari and Ehlers Danlos Syndrome. I was in every way "bent over" and could not make myself straight. Since childhood my mother had asked me to put my shoulders back, quit humping over and hold my head up. I really couldn't. My sisters would joke I looked so flat chested because I was "concave."  I always laughed along with them, but their words stung.  I had a huge bone sticking out of the back of my neck and a hump on my left shoulder.  I always walked with my right arm across my body pushing down on that hump trying to keep myself aligned.  I truly was always in some kind of pain.  Last night Dan came to spend the night, and I had my collar off. He commented on how he is not used to the new regal look I have. I carry my shoulders square, my head lifted up and facing forward. My countenance is no longer overwhelmed with agony.  He seemed almost bashful with this woman who might in fact be the same Monica he has loved all these years but somehow very different too. 

A week from today I will be in Maryland again for my ten week follow-up appointment. I plan to make a huge step by rejoining my family and the "real world" later that week. As it approaches I feel excitement and anxiety. I do not remember how to live life the old way. I see almost every single thing in a strange light. I am afraid of returning to the darkness and the loneliness of the living situation God has graciously given us.  This recovery place reminded me how desperately people need other people to really be well. Since we moved to my parent's basement people in my life simply stopped visiting. I quit reaching out because of shame and embarrassment, and they felt awkward, I know. It's all uncomfortable. Do they ring the doorbell at the front and hope I hear it and walk up the steep stairs and fetch them to come down to the basement? Do they come to the back door by walking through the side yard? I don't have a kitchen so the food and friends part of my life has completely ended as well.  Here at the lake house I have had so many people come visit and not just pop by but invest valuable time in being with me.  I even entertained my entire book club last week. They brought the food and did the clean up, but it felt so good to be able to have them here. I need this fellowship to continue to keep healing.   I worry about my parents too.  They have stopped entertaining guests all together because we are there.  The home they built for hospitality has rarely been used for that purpose.  They don't even have room for their other children and grandchildren to visit.  This makes the guilt I feel worse. 

I cried last night as Dan and I walked through things we are both struggling with as we anticipate this new chapter. For some reason our living situation is huge hangup for both of us. He told me about a conversation with the girls and my mom at the Sunday dinner table about how lucky we are to live where we do.  Yes, we can always visit the mud huts or the high rise tenaments.  There are many who are truly homeless.  We ARE grateful. We live in that gratitude daily as we look around and see where we might have ended up if not for my parent's willingness for us to land there. With all that said, the complicated emotions surrounding my relationship with my parents and Dan's need to really be the man of the house and our need to parent and love our children and be married apart from two other family units are REAL needs. We have been lonely for a long time. Even lonely for one another because of this strange world where someone else is always there.  Sometimes I know people think because we live in a compound there is no way we need any more bodies or hearts to join in.  This is not true.  A family with a sick and homebound restricted child and a very sick mom, eventually loses the invitations to summer barbeques and after school play dates and impromptu sleepovers. People feel uncomfortable talking about their next planned vacation, big home improvement project, new shoes or even silly little gossip around a family that is literally just trying to survive the day. It causes a strange unspoken rift.  Still, I am finding it is the people we need to really come full circle in all this. Tim Keller wrote in his book King's Cross, "If this world was made by a triune God, relationships of love are what life is really all about."  The Father, Son and Holy Spirit are a continual reminder we are not soul freelancers.  We need corporate worship.  We need to physically be with the Body.  We need to understand our brokeness is shared in some way by the whole.  It is here we will find the rest of our healing. 

Tears ran down my face last night  as I shared with my husband how frozen I feel.  I need to be with my children and Dan desperately, but I am physically sick at the thought of moving home.  This is brutal honesty.  Dan began to preach back to me truths I had so long encouraged him with.  He reminded me as long as we are together we are home.  He reminded me how powerful it is to change our thinking about a situation to really make it okay.  He reminded me how hard he has to work to surrender his selfish desires to be a husband and father under these circumstances.  He validated every single hope I have for recovery and restoration and every fear about being so ill equipped to move forward and be brave enough to start a journey away from where we have been asked to dwell for so very long. 

Friends, I need you to remind me too.  I need to relearn life from you.  I need to know how to be well.  I need relationship and fellowship and communion.  I promise you I will be the strange lady who bursts into tears at the most inopportune times.  I will apologize for my basement home if you come and visit.  I will not be good at small talk for awhile.  You will wonder at my foodie cookbooks and ask where my stove is.  You will be surprised how quickly I want to talk about heart matters and soul issues.  You will need to remind me to not be so serious all the time.  You will ask me to quit talking about the minutiae of neurosurgery.  You will need to share your joys with me, because I DO care about your beach trip or your new countertop, I really do.  I want to hear about the conversation you had with you kids in the car or your latest and greatest crockpot recipe find.  It will take some time and some effort, but I need you.  We need you. 

Thank you for praying for me this week as I seek out the last lessons and blessings God has for me here.  Please pray I will continue to heal and have patience with the process.  Please pray for our family.  We need supernatural strength and grace to keep the faith and hold onto hope as we explore what life will be for us in the coming months.  One thing I know for sure.  We need community.  This same girl who has always in some way loved being alone has been drawn out into this scary place of sharing in the blogosphere.  It has connected my family and I to people near and far we otherwise would never have known.  It brought much of the prayer and support we couldn't have made it this far without. But the danger in these relationships is easy to see.  We hide behind screens and projections of ourselves instead of meeting in flesh.  This is where the work and the reward of relationships are really cultivated.  We must be face to face. 

A woman called me last week who I know through Delaney's school but don't know in a heart way.  She cried as she thanked me for sharing our life and asked me to please keep writing.  Her daughter has been through many surgeries and still faces many in her future, and she shared how my honesty and faith help her in her walk.  She didn't know that I was very near a decision to end my blogging.  I have believed for awhile now God is calling me to write this story in the much larger context of my entire life and to do that I have wondered if I need to still my voice here for a time.  I have been praying for direction.  Later I read another chapter in the book I mentioned in my last post from Adele Calhoun about spiritual disciplines.  She says this about the role of fellowship and community in our faith, "My life has been shaped by men and women who loved me and handed me something of God in their very human lives.  Their spiritual practices were woven into the fabric of their lives on the loom of relationships--both with God and with me.  They had no halos.  They told me the truth about the good, the bad and the ugly while passing on the lore of the spiritual disciplines they had traversed.  I believe this is the way spiritual disciplines are to be learned.  We are to learn them in relationships."

This was my answer.  Everything God has given me, shown me, blessed me with needs the breath of life that can only come from opening my heart and being with people again.  Only then will this story take its' final shape and be ready to be told beginning to end.  I need to come together with others to make this healing viable.  I need to taste the fruit of taking risks to let people into my life through my door, yes the one behind the house, and let them remind me how to do this thing called community, fellowship, friendship and love.  I will keep trying to let you all watch as I fumble through this uncharted water.  It won't be fancy, but it will be real and keep pointing to the life sustaining relationship I have been given by Grace with Jesus Christ.  Real bones and real flesh given in sacrifice for me encourage me to live and love more like He did in the messy relationships that sometimes hurt and even end in betrayal.  I need to finally get comfortable wearing the sign that calls me out as the poor and the brokenhearted.  I need to surrender in the most uncomfortable places where I believe He does His greatest healing.  I hear His voice calling me from the basement, my home, my people, my life, "Be of good cheer.  Go in peace."

1 comment:

  1. Big sigh. I so so so understand. I remember when I began working from home, and people asked me if I was going to miss the "social" aspect of being with my co workers. And I remember saying, "I've got ALL the "social" I could possibly need at this time in my life." But having the long term, on going, tragic circumstances, they change everything. People still care, and show that in many ways. But real relationship, that I haven't been able to invest into well, as life for now is pretty much caring for my family, and my self, and not being able to do that very well, the being part of the bigger picture of the community, just isn't really there much right now. So, I would have to say, this has been one of the loneliest seasons of our lives. Your blogging has been helpful to me Monica. I do hope you continue for a while. Much, much love to you! Carol