Going out is like a jailbreak

I rarely venture out anymore. When I do, it hurts, but it's also exhilarating, like a jailbreak.

Going out requires packing for an expedition: 

- Pillows: 2 orthopedic wedge cushions to give me the best angle, one thin but sturdy cushion to protect against hard seats, and one great all-around mushy pillow that helps modify any chair. I stash all of my pillows into my oversized, lightweight black pillow bag ... black, which I hope will attract less attention.

- My handicapped parking tag in bold stop-sign red that I hook over the rearview mirror even when I'm not parked in a handicapped spot. I wonder why I do that. Maybe it's a play for sympathy from the traffic officer who might decide to go ticket someone else's car, or the vandal who might break someone else's window.

- My choice of crutches or canes. I use the bulky black lobster-claw crutches when I anticipate long walks through the mall, or when I need to convince a new doctor that I'm serious. The hand-crafted wooden alligator-handle cane is my favorite for short stops. My polished walnut fish-handled cane is for dress-up. When was the last time I dressed up? Can't recall.

- A 7-compartment pill box tucked into my purse, which is flat and lightweight, with a broad shoulder strap that I wear across my chest vs. on the shoulder.

Confession: Second to the stupid pain, the most difficult part of the ordeal is moving this body ... maneuvering this heavy, unwieldy, and clumsy body up and down stairs and in and out of cars. Sometimes I can feel the flesh of my thighs or belly move, and I feel a rush of nausea.

Here's what really cures chronic pain...

Pharmaceuticals & sleep, yes. 

Spinal injections ... two out of maybe 9 or 10.

Dear well-meaning people have passionately given me the names of 432,752 chiropractors, massage therapists, herbalists, podiatrists, book titles, diets, sandals, enzymes, and breakthrough whatevers that would absolutely positively fix everything, if I would just visit-call-order-buy them. Everyone is convinced that the thing that worked for them will work for everyone else. 

- Distressing: purveyors of theories that insist we have the power to heal ourselves, if we would only just try.

- Comforting: physicians who admit uncertainty.

If I pursued all of the leads I've been given, it would consume a year of 12-hour days. And would I find any wheat among the chaff?

something's dreadfully wrong

Tonight I am the only one awake in the house ... maybe in the world. The wind murmurs sotto voce down the chimney and wuthers against the windows. I have no sleeping pill stronger than the pain.

Each day this week has been more difficult to manage, to soldier through. Each day I can walk fewer steps. Today I can hardly walk through the kitchen or stand at my desk. My right hip feels as though it wants to rip out of its socket. My doctor, by acclamation the most brilliant orthopedic specialist in the Midwest, does not want to see me. She scheduled my next appointment three months on. Is there anyone who can help me? Please please help me.

..... 

As I type these words, Polly the dog and Lucy the cat have roused themselves from sleep and padded into the room. They are sitting near me, looking at me.

What if I am wrong, and they are right?

I know what I believe. Although lately I merely suppose.

- I don't believe that everything happens for a reason.

- I don't believe we can control events and heal our bodies merely by visualizing our desires.

- I don't believe all things work together for those who love God. In fact, all things can conspire together to toss those who love God right into the Colesium and the hungry lions.

But what if they are right, and I am wrong?

What if all things do work together in a breathtakingly elegant symphony that I can only visualize?

Take me out to the ball game

A complex family event—Three Complicated Families Visit the Ball Park—insisted upon by my out-of-town sister and executed beautifully by B., with help from Mom. Fabulous seats, yummy meals, bracing winds, with a foul ball's eye view straight down to home plate. I rarely leave home any more. I had forgotten the brilliant green, the extravagance of the view. 

B. couldn't believe that I was taking part. Neither could I, because I WAS IN PAIN, pain like a fire searing the back of my leg, stabbing the side of my hip, like the ball of my hip joint was trying to pop out of the socket ... and that crazy agony when the pain has pooled and spread just under my skin so that I can't put any pressure on my tailbone, rear or backs of my legs because even the lightest touch is killing. 

So, how did I do? I judge myself by my ability to not take the bait when someone asks how are you. I smile gamely and say something inane, and it's passable.

I've never been a caretaking type of person; I chose B. in part because he loved to take care of me. With my—my what? my injury? disability?—incapacity, B. has transformed into an uber-caretaker, asking about my socks, cleaning the kitchen, turning on my bedside lamp at bed time. I sense some tension from him, but then he brings me a fresh glass of water and advises me to finish my grapes. Is this a show for Mom?

UPDATE: The ballpark outing exacted a price. Recovery took more than a week ... and by recovery I mean scrabbling back to my pre-ball game level of pain.

R-E-S-P-E-C-T

I told my friend Sharon that I'm tired of being at war with this unrelenting pain.

  Me:  Perhaps I should try to befriend it. 

  SS:   No no no! No befriending! But you do need to treat it with more respect.

  Me:  Submit to its limitations?

  SS:   Treat it like the white tiger that mauled the magician in Las Vegas. At any moment it can attack.

Intercessory Meditations

A very bad pain day today despite so many efforts that should have helped—the intercessory meditations and long-distance Reiki treatments of my dear "femifesting" (vs. manifesting) group friends ... a visit to the Wellbridge pool and hot tub ... and three zanaflex muscle relaxants and three oxy-somethings—perhaps I am not taking them soon enough?

How I would love to please all of the beloved people who are trying so hard to help me!  Dr. Minchin's prescriptions, Dr. Guarino's injections, the three different physical therapists who were so caring and (initially) hopeful, B's trips with me to the pool, Connie's trips to the grocery store, and the prayers and advice of so many well-meaning friends. I am showered with so much help and sympathy—mine must be a stubborn case to resist this tsunami of healing intentions.

Three bad days

Three days—three bad pain days, like a string of three dark ugly stones on the abacus of some miserly god. For reasons that remain unclear, a fever burns in my right hip and the muscle tightens like a fist, like a band of fire, like a seizure. No amount of gentle stretching can soothe it. No number of zanaflex tablets can relax it. Nothing but the usual panacea—a good night's sleep—can loosen its grip, however briefly. My only joy, walking through the warm salt waters of the pool at the Wellbridge Center, seems to cause further harm. Even that small happiness is harmful. What hope do I have of returning to myself if I can't take even the smallest steps?

Six glorious hours

For the first time in two long years, I was completely without pain in the middle of the day— throughout every liberated cell in my body. I could waltz and spin. I could pick up a pen from the floor, and reach for a glass of water. I could perch on the edge of a seat without any back support. I could ride in a car over a bumpy road! O joy! O frabjous day! 

This blissful state lasted for six hours. During my next appointment, I reported this to my new doctor. He was disappointed. "Only six hours?" "No, you don't understand. I want to kiss the ground you walk on."

It was a series of small injections along the piriformis muscle in my hip. "Piriformis syndrome," he scribbled in my chart. The diagnosis I had suspected for 18 months, which had been dismissed by five other physicians who had subjected me to one ineffective treatment after another.

Perhaps I am on the way to recovery.

From running shoes to crutches

This is who I once was: strong, slender, limber, pretty, free to run across a street, to duck beneath a low railing and climb into our seats at a movie theater, knowing that B. and the other moviegoers watched with admiration. With a cup of coffee and a good night's sleep, I could think of snappy answers and elegant solutions to the problems of my corporate clients. 

  Who I once was: The longer I walked, the stronger I felt. 

  Who I am now. The longer I walk, the worse the pain becomes. I fear that I'm re-injuring myself every day. But when B. takes Polly out for a walk, I always volunteer to go along. I thump and swing along on my lobster-claw crutches, thump-click-swing, thump-click-swing, trying to keep the weight off of my right hip, and I have to stop and turn back at the alley.

sleep-eating, sleep-poetry

My pain increases throughout the day, so I take ambien to get to sleep.  If I don't go to bed right after I take it, strange things happen.  I will all at once slip into a kind of half-sleep, walk downstairs to the kitchen, and fix myself a snack.

   One morning I woke up and found an ice cream bowl and spoon on my bed table.  They looked familiar.  

   One night I apparently paged through the New York Times, clipped out 4 stories for B. to read, and highlighted the key points with a yellow marker.  

   None of the stories were ones that Awake René would have cared about.

In the past month, B. has twice encountered me wandering around in the middle of the night.  He says that I answered him when he spoke to me: 

B:  What are you doing out of bed?

 

me:  I've been walking in the garden.

   (We don't have a garden.)

B:  What are you doing out of bed?

me:  I understand the language of the Incas.