the story

It  has been a long time since I have blogged, really blogged. I felt the need to tell this story before I can begin to write again the little stories that usually make up this site and it’s been hard to write. It’s long – though I thought of breaking it up into  separate entries, in the end that didn’t work. So I don’t mind if you skip it or skim it or whatever you need to do. I just needed to tell it.

Also, I have a convention on using names that comes across awkwardly in this post. In general anyone with a public internet presence (i.e., someone who blogs under their own name) gets a name. Everyone else gets a pseudonym or title or something like that. This is the Katie I refer to below.

The first time my back ever went out it seemed a fluke. Sudden debilitating pain. A doctor’s prescription for painkillers and rest. No trauma I could point to in blame but I had a vague memory of rounding a corner at work too closely and banging my hip hard against the corner of a filing cabinet so that became my origin story for those who asked.

Sister number 2 had her first baby that weekend. My mother drove down to pick me up so she could care for all of us in my sister and brother-in-law’s Delaware cottage. I have no idea how long I was there. Through the haze I remember only laying on their living room floor with my legs at right angles resting on their couch. The drugs provided much needed numbing. And my newborn niece often napped on my chest, her warmth and the rhythm of her breath providing the only true comfort available to me.

At some point I was driven to Pennsylvania, where the talented chiropractic hands of a family friend finally brought me improvement.  When I could walk and work and wean myself from the Percocet I thought it was all at an end. After all, I was young and healthy.

The first time I was told I needed spine surgery the doctor delivered the news and slipped out of the exam room to get some paperwork. I broke down in sobs. I’m not sure I have ever felt quite so alone. While some tiny part of my brain kept telling me that there were those who would help, a different part of my brain was shouting much louder. That part was telling me that I was a single woman living alone suddenly facing the prospect of losing my ability to care for and provide for myself. I was terrified. At the time, the only thing I knew about back surgery was horror stories. Invasive procedures that left patients with severely limited mobility and much reduced quality of life.

Flowers from O

I had spent the first nine years after my first bout of back pain fighting it as it occasionally reared its ugly head and trying to prevent it when it was hidden. I was a regular at a chiropractor’s office. I took up yoga. I learned that if I procrastinated a decision or allowed stress to fester I would pay for it physically. Experience taught me that plane rides were hard and that small plane rides piloted by friends who wanted to scare me by bouncing in turbulence might cause me to be crippled by pain an hour after landing. By the tenth year I had given up running. I had tried one physical therapist who seemed to make me worse followed by another physical therapy practice that didn’t answer my questions and offered a different therapist with different diagnosis at every appointment. I had an acupuncturist. Things began to deterioriate beyond my carefully constructed scaffolding of pain management. I began to go to a practice specializing in non-surgical pain solutions. My life had shrunk to this: work, pills, and sleep.

Perhaps the most wrenching thing to give up was the piano; sitting at the piano or organ bench was simply too excruciating. I have tried and utterly failed to find the words to explain how bereft that left me. I felt an essential piece of my soul had been torn from me without warning or meaning.

That first surgery was successful. I had had plenty of time to plan my recovery – much of which was spent in a haze wrapped in a blanket in a red adirondack chair on the back deck of a friend’s home. My family and wonderful friends in my congregation rallied around me. I got stronger. I passed physical therapy. I joined a gym, went back to yoga, lifted weights. I discovered a massage therapist who had miraculous skills to unlock my frozen muscles. Most shocking (to me) I took up swimming and began to conquer my fear of the water because no matter how much convincing I had to do to put my face into the water I knew I could count on the swim to help my back. I often hurt, but only a little. Nothing a good stretch or workout or walk couldn’t take care of.

In March the pain came back suddenly. This time I blamed poor form while pulling laundry out of the washing machine. But I knew who to call and I was sure that if I just followed my doctor’s orders and eventually got into physical therapy everything would be hunky dory. I had several priesthood blessings. Friends from church took over my cooking, cleaning and laundry. But I insisted I was getting better any minute. I even signed up for personal trainer sessions to start right after physical therapy (whenever that would happen to be) because in my mind my regular but haphazardly organized gym habits were surely what was really to blame for all the pain.

Instead what happened was that small improvements kept getting followed by further deterioration. Until one day I found myself  lying on my living room floor unable to move. My phone was nearby, and I sent an SOS text to several friends who have keys to my house. My mother happened to call and then called my doctor and I struggled to communicate to any of them. I remember wondering if I was going into shock. But of course my mind couldn’t offer up any of the symptoms of shock no matter how I tried.

When my friends Katie and T arrived Katie said she wondered if I was descending into a kind of pain induced delirium. I remember thinking how nice that sounded and tried to make sure the two of them knew everything they needed to know to tell the doctors just in case my mind was inclined to let go. That would have been a mercy.

So Katie and T carried me to the car and got me to the emergency room. (Note: when it comes to emergency preparation – make sure to cultivate some strong friends.) We arrived, and my symptoms were enough to get me quick priority attention and a private room. My only complaint was that silly pain scale. When the patient is shaking and crying and barely able to move or remember to breath, asking the 1-10 question is just downright cruel. Just get my pain under at least a little control and I will gladly participate in the fiction that those numbers could possibly describe what I’m feeling.

The view from my hospital room and flowers from my company

T had to leave, but Katie was able to stay in that tiny room with me, crying, and holding my hand, and singing hymns to me until the painkillers finally allowed me to sleep. I know she’s shocked I can remember it at all but I do. And I know that never in a million years will I be able to anything so important and kind and loving for her as she did for me that day. I can’t think of it much because the memory simply makes me sob with gratitude. She stayed until my mother arrived, while I was still awaiting a chance at an MRI.

The second time I was told I needed surgery, nearly five years after the first time, and ten hours or so after I had arrived at the ER, I felt nothing. Perhaps relief. An answer, it was an answer. Apparently a better answer than other possibilities the doctors had worried about, investigated, and discarded earlier in the day. But I was pretty doped up so they could have told me the world turns out to be flat after all and I might have accepted it with complete equanimity. And because I had neurological symptoms, I was given choice neither on the whether nor on the when of the operation. Surgical preparation began immediately. Surgery would happen overnight. An L4-L5 micro-discectomy, for the record. On the left side. The same disc and same operation as before, just on the opposite side.

I sent texts to a few friends and family asking for their prayers and support. It seemed as though some of them instantly materialized in my room. I received another blessing. The timing was perfect and just a moment or two after the blessing ended the nurse came to move me from the ER to my room on the fifth floor.

(My mother holds the all-time silver medal in worrying (my grandmother will always and forever hold the gold). For years I have insisted to my mother that I have wonderful, amazing friends who will take care of me and that she need not expend her energy worrying about me. I think that night when my friends arrived and the next several days as other visitors dropped by my home and gifts arrived from friends, neighbors, and co-workers, she might have finally begun to believe me.)

There is a frequently referenced verse in the Book of Mormon that I love. As with most of Scripture, we tend to see it first as a description of strictly spiritual things. For now, for me, it has become a physical motto:

…for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.

My operation was Monday night. Tuesday afternoon I was discharged. Wednesday morning I woke up with no back pain for the first time in three months. Exhausted, yes. Every cell in my body exhausted. But pain free.

The following Sunday I went to choir. I am one of our congregation’s choir directors but it was not my Sunday to direct. We needed to do a quick run-through with just a bassoonist and a flautist before the singers arrived but our piano accompanist had not yet arrived so I slipped onto the bench to fill in. The piece was My Shepherd Will Supply My Need. A choir member who had arrived early agreed to turn my pages. As I began the introduction I was overwhelmed that I could be there at all. To be able to sit on that bench with no pain. To feel and play and make music. The introduction ended and my page turner, a tenor with an astoundingly beautiful voice, began singing along. As the instrumentalists joined in the rest of our choir members were arriving. One by one they approached the choir seats and added their voices to the hymn. I felt lifted and strengthened and healed with each additional voice. I could hardly play for weeping. I could hardly play for joy.

orchids from my brother and sisters

My Shepherd will supply my need,

Jehovah is His name.
In pastures fresh He makes me feed,
Beside the living stream.

He brings my wand’ring spirit back,
When I forsake His ways.
And leads me for His mercy’s sake
In paths of truth and grace.

When I walk through the shades of death
Thy presence is my stay.
One word of Thy supporting breath
Drives all my fears away.

Thy hand in sight of all my foes,
Doth still my table spread.
My cup with blessings overflows,
Thine oil anoints my head.

The sure provisions of my God
Attend me all my days.
O may Thy house be my abode,
And all my work be praise.

There would I find a settled rest,
While others go and come.
No more a stranger nor a guest,
But like a child at home.